Certificate for Approving the Dissertation

MIAMI UNIVERSITY The Graduate School

We hereby approve the Dissertation

Jesse Michael Denton

Candidate for the Degree:

Doctor of Philosophy

______Director Elisa S. Abes

______Reader Peter M. Magolda

______Reader Lisa D. Weems

______Graduate School Representative Madelyn M. Detloff

ABSTRACT

LIVING BEYOND IDENTITY: GAY COLLEGE MEN LIVING WITH HIV

by Jesse Michael Denton

The lives of college students who are HIV positive in the United States have received little attention. This study addressed this lack by inquiring into the self-cultivation and institutional experiences of gay college men living with HIV. Informed by AIDS activism and queer theory, I used narrative and arts-based methods to explore participants’ self-cultivation I placed particular focus on participants’ discourse given that American sociopolitical discourse associates HIV/AIDS with gay men.

I conducted over sixty hours of in-depth interviews with nine gay college men of various ages, races, geographic locations, and institutional settings. Six of the nine participants created artwork to express their relationship to HIV/AIDS. Using poststructural narrative analysis, the major findings of this study include: higher educational silence about HIV/AIDS; an affective structure to participants’ discourse; and an askēsis of shame.

Most participants encountered a silence or lack of discourse around HIV/AIDS in their institutions. Institutional silence complicated participants’ ability to discern whether to seek support or to disclose their HIV status on campus.

Although participants called upon distinct discourses, they shared a common affective structure. Having an affective structure means that these men represented and discussed HIV/AIDS as driving the way they live, although differently at different times and with various intensities determined by different events, objects and people. Like affect, their relationship with HIV varied, often unpredictably, except for its constant presence.

While these men felt differently about having HIV, I describe their common affective structure as an askēsis of shame. Askēsis, or self-cultivation, is a response to social contempt for gay men with HIV/AIDS and homonormative discourses of compulsory happiness. Shame is an affect involving investment in the self and others along with covering discredited aspects of the self. Therefore, an askēsis of shame describes how participants covered the discrediting aspects of HIV while still investing in themselves and others.

This study carries implications for using affect theory in conceptualizing college students’ lives and implications for queer social science methodology. I explore the complexities and difficulty of supporting this student population for institutions and faculty. Participants also supply their own recommendations for faculty and students.

LIVING BEYOND IDENTITY: GAY COLLEGE MEN LIVING WITH HIV

A DISSERTATION

Submitted to the Faculty of Miami University in partial fulfillment of the requirements for the degree of Doctor of Philosophy

Department of Educational Leadership

Jesse Michael Denton Miami University Oxford, Ohio 2014

Dissertation Director: Elisa S. Abes

2014

Table of Contents

List of Figures ...... x Dedication ...... xi Acknowledgements ...... xii Chapter One: Introduction ...... 1 An Overview of HIV in the United States of America ...... 1 HIV Transmission and Prevalence ...... 2 Attitudes towards People with HIV/AIDS ...... 3 Challenging Student Development Identity Theory ...... 5 Theorizing the HIV Positive Self ...... 7 An In/queer/y about Collegiate Gay Men Living with HIV ...... 8 Summary of Introduction...... 9 Chapter Two: Literature Review ...... 10 Literature Review ...... 10 Stigma ...... 13 Social and Collegiate Environmental Attitudes ...... 14 Disclosure and HIV ...... 16 Psychosocial and Psychological Perspectives on Living with HIV ...... 18 AIDS as the Incarnation of Gay Male Deviance ...... 20 Collegiate HIV/AIDS Discourse ...... 23 Summary of Literature Review ...... 26 Chapter Three: Constructing the Study ...... 27 Creating a Queer Qualitative Study ...... 27 Theoretical Perspective: Queer Theory ...... 28 Queer Methodology ...... 30 AIDS Activism as Queer Methodology...... 31 Narrative Inquiry ...... 32 Arts-based Inquiry ...... 34 Sample ...... 35 Methods ...... 40 Narrative Sessions ...... 40

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Art-Based Sessions ...... 42 Data Analysis ...... 42 Constructing the Narrative ...... 43 Analyzing the Narrative ...... 45 Representation ...... 45 Goodness Criteria / Validity ...... 46 Validity as aesthetic experience...... 47 Wakefulness and verisimilitude...... 48 In/coherence as quality...... 48 Accessing hidden dimensions of life...... 49 Queer science? Queer art? ...... 49 The politics of intimacy...... 50 Summary of goodness criteria...... 51 Additional Ethical Considerations ...... 52 On Reflexivity and Discontent, or “Why Do You Want to Study That?” ...... 53 The Days of Disenchantment: On Political Desire ...... 56 Chapter Four: Narratives of Gay College Men Living with HIV ...... 60 Constructing Participants’ Narratives ...... 60 A Few Notes on HIV-Related Language ...... 62 The Stories of Gay College Men Living with HIV/AIDS ...... 63 Charles: Wanting to Live ...... 63 Seeking Independence ...... 64 Health Problems and School...... 65 “It’s What I Want” ...... 66 Daniel: Had It with the Masculine Face of God...... 66 The Visitation ...... 67 Intersections of Trauma ...... 69 Graduate Social Work Program ...... 71 Bill: Doing the Footwork ...... 73 The Drink ...... 74 The Steps to Recovery and Tommy ...... 75

How it Works: Bill’s Spirituality...... 76 Diagnosis ...... 77 The Paradoxes of Living with HIV ...... 78 University Experiences while Living with HIV ...... 79 Continuing Down the Path ...... 80 Tony’s Story: The Fight of His Life ...... 81 When Life Started ...... 81 People Always Have Something to Say ...... 82 Seroconversion ...... 83 Tony’s Demise ...... 84 Recovery ...... 85 Living with HIV Today ...... 87 Jason: Life as a Bonsai ...... 87 Bouncing Around ...... 88 Being HIV Positive in Nursing School...... 89 Blackouts and Betrayal ...... 90 Gay as a Two Dollar Bill ...... 91 Moving Onward ...... 92 Preparing to be an RN ...... 92 HIV: An Unwelcome Guest ...... 93 The Chill and Warmth of HIV ...... 94 Josh’s Story: Back in the Saddle Again ...... 96 A Rural Midwestern Boy ...... 96 Acting Out HIV ...... 98 College Relationships ...... 99 Doing It On His Own...... 100 Home is Where the Heart Is ...... 101 The Best Care ...... 102 Aiden’s Story: Working Towards a Queer Future ...... 103 Everything Has a Purpose: Aiden’s Spirituality ...... 104 Activism...... 105

Self-Exploration...... 106 False Positive and Positive ...... 107 One Year Later ...... 109 Sexual and Romantic Relationships ...... 110 Undetectable ...... 111 For the Rest of the World ...... 112 Alex’s Story: The Man I Am Today ...... 112 Emerging Sexual and Racial Identity ...... 113 A Kid in a Candy Shop ...... 113 Grandparents: Making the Man ...... 114 Supplemental Income ...... 115 Finding Out ...... 116 Initial Diagnosis ...... 116 Word Vomit: Being HIV Positive at GFI ...... 118 Ebb and Flow ...... 120 Kris: It’s Intense ...... 121 A Love Zone ...... 122 The Way People Talk About It ...... 123 I Heard He Was Sick ...... 124 Things Happen to People All the Time ...... 125 Being Easy with It ...... 126 Chapter Five: Interpretation and Analysis ...... 127 Overview of the Analysis ...... 127 The Sound of Silence: AIDS Discourse in Higher Education ...... 127 Breaking Silence ...... 131 Non-Institutional Forms of Silence ...... 132 The Effect of Silence and Silence as Effect ...... 133 Cultivation of the HIV Positive Gay Male Self ...... 135 Understanding the Cultivation of the HIV Positive Self ...... 135 The Affective Discourse of Participants ...... 137 Tomkin’s Theory of Affect ...... 138

Dimensions of Affective Discourse ...... 140 Experiencing HIV differently...... 140 Changing intensities and experiences with HIV...... 142 Indeterminable triggers and unpredictable responses...... 143 Framing HIV as purpose, philosophy and incitement to change...... 145 Understanding HIV as possibility...... 147 The Affect of Art ...... 149 Participant Artwork: The Affect of HIV ...... 150 Aiden’s Colored Pencil Drawing ...... 152 Bill’s Painting ...... 154 Daniel’s Watercolor Painting ...... 156 Jason’s Bonsai Tree ...... 158 Josh’s Free Verse ...... 160 Kris’s Poem ...... 162 Conceptualizing an Askēsis of Shame ...... 166 The Concept of Shame ...... 166 Facing Social Contempt...... 167 The Askēsis of Shame ...... 168 The Complexities of Practicing an Askēsis of Shame ...... 172 Conclusion ...... 176 Chapter Six: Discussion ...... 178 Implications for Theory and Practice ...... 178 Affect: Thinking Beyond Identity ...... 178 The Critique of Shame ...... 181 Shame and queers of color...... 182 The limits of shame...... 183 Shame as a Practice and a Feeling ...... 184 Shame as a Response to Social Contempt ...... 185 Contempt and stigma...... 185 From the Politics of AIDS to the Politics of Respectability ...... 187 The Politics of Respectability ...... 188

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The Politics of Respectability as the Politics of Happiness ...... 189 Participants and the Politics of Respectability ...... 190 HIV as disrespectability...... 191 Investments in the politics of happiness...... 192 Looking for (Un)Happiness ...... 194 Navigating Between Scylla and Charybdis ...... 195 Shame: The Art of Fighting Monsters ...... 196 The Oars of Expression: Other Discourse Sources for Self-Cultivation ...... 198 The Incitement to Silence in Higher Education ...... 199 The Incitement to Disregard ...... 200 Higher Education Possibilities ...... 202 Participant recommendations...... 204 The Possibilities, Challenges, and Limits of Queer Methodology ...... 205 Quality and Goodness ...... 207 Limitations ...... 208 Final Implications: For HIV Positive Students ...... 210 Appendices ...... 213 Appendix A: Informed Consent and Information Sheet ...... 214 Information Sheet ...... 214 Participant Informed Consent Form ...... 216 Appendix B: Interview Protocol ...... 218 Life Story Interview Protocol ...... 218 Positive College Living Home Page ...... 224 Positive College Living FAQ ...... 225 Copy of the Text ...... 225 Appendix E: Banner Advertisements ...... 227 Positive College Living Advertisement Banners ...... 227 References ...... 228

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List of Tables

Table 1: Participant Demographics ...... 37 Table 2: Patricipant Major, Degree, and Institution Type ...... 38 Table 3: Interview Hours and Number of Interview Sessions ...... 39

List of Figures Figure A: Aiden’s Drawing ...... 152 Figure B: Bill’s Painting ...... 154 Figure C: Daniel’s Watercolor (front piece) ...... 156 Figure D: Daniel’s Watercolor (back piece) ...... 157 Figure E: Jason’s Bonsai Tree...... 158 Figure F: Detail of Branch ...... 159

Dedication

For Peter, who has always believed in me more than I have in myself.

Acknowledgements In many ways I find the acknowledgements section much more terrifying than any other portion of the dissertation. The fear of forgetting somebody important or not properly attributing the full scope and depth of support received, or failing to discern correctly the order in which one should acknowledge supporters, mentors, benefactors, friends, family, and loves gives great pause. So my hope is that of the myriad people who have contributed to the success of this work, nobody will feel slighted by my acts of omission, commission, or ordering. That said, I must first thank Peter Thorsett, to whom this work is dedicated, my partner and love of fifteen years. When faced with a crisis of professional direction and identity, it was Peter who encouraged me to begin my doctoral studies despite my doubts. He supported me emotionally and materially in this endeavor. Had it not been for Peter, I likely would not have applied to the SAHE program here at Miami and would have missed out on one of my great life experiences. We’ve been through many different challenges together and separate; yet, I find he continually brings out the best in me. Because of him, I have accomplished a life goal and feel I have contributed something—albeit imperfect—important. Next, although my family has not always understood my choices or career, they have unconditionally loved and supported me. Mom, Dad, and Lesley, my sister, have always demonstrated capacious love. Just as importantly, my parents instilled a love of learning in me and have supported my education in countless ways. My sister, twelve years younger, has proven to be the single greatest joy in my life. I am immeasurably proud of and grateful for her. I can imagine no better guide during the dissertation process than Elisa Abes, my chair and advisor. In many ways I mark the start of the dissertation with her challenge to me to make this study as queer as I could. Any shortcomings in doing so are mine alone. Elisa provided smart feedback and questions that always prompted me to think and write smarter and clearer. I cannot sufficiently express my appreciation for her magnanimous generosity and patience in working with my style of writing and trusting in me where others may have balked. Thank you, Elisa, for your scholarly rigor, your warm empathy and your genuine curiosity. Along with Elisa, my committee members provided crucial feedback, recommendations, and critiques that have served to strengthen this work. My deepest appreciation goes to Peter Magolda, Lisa Weems, and Madelyn Detloff. Among his many contributions to this work and

xii my scholarly career more broadly, Peter’s unparalleled expertise in qualitative research led to a complete redesign of my study that proved essential to achieving my aims. Lisa has expanded my worldview, deepened my understanding of Foucault, and has been one of my staunchest and most loving advocates anywhere. Madelyn consistently and supportively challenged my assumptions and assertions, leading to new insights and more critical thinking. All of the faculty members of the SAHE program have been tremendously supportive of me, yet two have made particularly significant contributions. Marcia Baxter Magolda has provided me the most company on my journey, and what excellent company she has been. Marcia has contributed to my scholarly and personal development in far too many ways to enumerate; she was instrumental in the formation and beginning of this dissertation. She has made me a better scholar, writer, and person. She lives her research, and I hope to emulate such congruency in my own life. Kathleen Knight Abowitz continues to offer her support and encouragement, and provided guidance on this work as a proposal. Kathleen exemplifies scholarly brilliance, pedagogical mastery, wit and kindness. I also thank Stephen, David, Kathy, Mahauganee, and Julie for their support and/or instruction. Other people have made significant contributions directly and indirectly to this work. Kent Brintnall graciously provided incredibly useful feedback on a draft of this work. Kent first introduced me to queer theory, and he remains a trusted friend and mentor. Z Nicolazzo has for years freely and happily provided emotional and tangible support. Z made life considerably better for me during difficult times. David Halperin bestowed nothing but grace to me through his encouragement and interest in my work, and sharing his insights and company. His work has served as a major influence on mine. I cannot express enough thanks to Poz.com for donating advertising space for six months. Of course this work would be nothing without the nine men who volunteered their time, energy, and stories to this work. My gratitude cannot be fully expressed to them. Finally, thanks to the many fine fellow students who have made my experience in this program wonderful.

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Chapter One: Introduction An Overview of HIV in the United States of America AIDS significantly changed the material and cultural conditions of life for many people in the United States, and among the first and most visible were gay men. AIDS certainly impacted people other than gay men deleteriously from the beginning. For instance, women— heterosexual and lesbian, of various racial identities—have felt its impact, although they are often ignored and undertreated because of the social perception that only gay men get AIDS (Lather & Smithies, 1997; Roth & Hogan, 1998). Another important consideration in understanding the impact of AIDS is how, like all aspects of American society, structural and historical racism has created experiences for Black and Latino gay men—and others in their communities—different from White gay men (C. J. Cohen, 1999; Díaz, 1998; Inrig, 2011; Mackenzie, 2013; Stockdill, 2003). With these contexts in mind, the association of gay men with AIDS remains pervasive in the American political and cultural imaginary. On July 3, 1981, The New York Times reported on a “rare cancer seen in 41 homosexuals” that “posed no threat to nonhomosexuals” (Altman, 1981). This was the first media record in the United States of what would become known as AIDS (Bronski, 2011). Later, some medical experts named this illness as GRID, or Gay-Related Immune Deficiency before it would be classified as Acquired Immune Deficiency Syndrome (AIDS) in 1982 (Seidman, 1992; Treichler, 1999). Despite the change in terminology, these initial designations successfully created a lasting connection between AIDS and gay men in the American public and political sphere. This association has persisted well after medical experts have made clear that its various routes of transmission have nothing to do with sexual identity. AIDS has impacted many aspects of gay life: the trajectory of gay liberation politics (D’Emilio, 1992; Eggan, 2008), urban gay and lesbian life and community (Rubin, 1997), the subjectivity of uninfected gay men (Odets, 1995), and the subjectivity and identification of infected gay men—and certainly others (Watney, 2000). Yet in the many histories and analyses of AIDS, little to no accounting exists of the lives and experiences of college students, gay or otherwise, with HIV/AIDS. Even Dilley’s (2002) history of non-heterosexual college men only briefly mentions AIDS, and only in the context of college student activism. This study seeks to remedy these missing accounts by inquiring into the narratives and self-cultivation of gay college men in relationship to HIV/AIDS.

HIV Transmission and Prevalence Understanding the modes of HIV transmission is important in thinking about how and why the unwarranted fear of AIDS remains prevalent in the United States, why people living with HIV/AIDS (PLH) face enormous stigma and discrimination, and for contextualizing the cultural discourses and attitudes that remain so insistent on linking HIV/AIDS with homosexuality. HIV, or Human Immunodeficiency Virus, leads to the destruction of the human immune system, a condition designated as Acquired Immune Deficiency Syndrome, or AIDS. HIV, fragile outside of the human body, is transmitted through a very limited number of ways (Fan, Conner, & Villarreal, 2011). Prior to the invention of antiretrovirals, having HIV often proved fatal. Now, living with the virus can often be a manageable, chronic disease provided an individual has access to and can afford the costly medications that regulate HIV. However, these medicines can create physically and psychologically debilitating side-effects of their own (The Body, 2010). There is no known cure for HIV or AIDS at this time. HIV transmission happens only through perinatal transmission from mother to infant; transmission into the bloodstream (e.g., via transfusion or a contaminated syringe); or through certain forms of sexual contact with a person with HIV (Fan, Conner, & Villarreal, 2011). Important to note is that different sexual practices carry different kinds of risks of transmission, provided one partner is HIV positive. The riskiest practice is when “HIV-infected blood, semen, or cervical/vaginal secretions from an infected person come in immediate and direct contact with the bloodstream or mucous membranes of another person (Fan, et al., 2011, p. 130). The risk of HIV transmission lessens according to the absence of either of these elements, through the proper use of latex barriers (i.e., condoms, dental dams), and likely on other “chemical or physiological factors (e.g., the acidity of the mouth),” (Fan, et al., 2011, p. 131). Certain kinds of sexual practices, therefore, carry little to no chance of transmitting HIV. Of all the over 1.1 million people in the United States with HIV, over 25,000 people are between the ages of 13-24; 18,000 are between the ages of 20-24 (Centers for Disease Control and Prevention [CDC], 2010a). Young people aged 13-24 made up 26% of all new HIV diagnoses in 2010, with most of those aged 20-24 (CDC, 2014d). However, insufficient information exists to accurately estimate how many college students are HIV positive. Early studies placed the number of college students with HIV between .2 and .08 percent (Mattson, 2002). The American College Health Association found in its 2010 national study that .3% of

2 students surveyed indicated having been diagnosed with HIV within the past year, but this does not give an indication to how many HIV positive students attend institutions of higher education. And, of course, as evidenced in this study, there are older students who may have HIV. Regardless of how many HIV positive students there are, the number of post-secondary students who are HIV positive is likely to continue to increase, given the incidence rate of HIV for young people and the influx into society of those infected prenatally (CDC, 2014d). Certain areas of the country have witnessed confirmed increases in HIV infection among college students, most of whom are men who have sex with men (MSM) (CDC, 2004; Chan et al., 2012). Gay and bisexual men—and other MSM—account for over half of the people in the United States living with HIV (CDC, 2014b). Additionally, gay, bi, and MSM continue to count for the majority of all new infections, with those aged 13-24 counting for 30% of these infections (CDC, 2014b). Studies conducted in certain cities of traditionally college-aged gay, bi, and MSM (i.e., 18-29) found that 7-20% of those sampled were HIV positive, depending on age range (CDC, 2005, 2010b). Gay, bisexual, and non-heterosexual African-American men, especially those aged 13-24, are disproportionately impacted compared to White gay, bi, and MSM (CDC, 2014a). Hispanic/Latino MSM are also disproportionately impacted relative to White MSM (CDC, 2013a). Although I do not focus on women in this study, I find it important to mention that women and trans people also contend with HIV/AIDS. One in four HIV positive people in the United States is a woman, and trans people—especially transgender women—may face a high risk of infection (Brydum, 2013; CDC, 2014c; Ginelle, 2014). African-American women and transgender women are also disproportionately impacted by HIV/AIDS compared to White women (CDC, 2014c, 2013b). I intend to investigate the experiences of women and trans college students living with HIV in a future study. Attitudes towards People with HIV/AIDS Societal depictions—and the lack thereof—of HIV/AIDS have very real consequences for the well-being of PLH and how others treat them. Lambda Legal (2010), a national legal rights advocacy organization, reported that “large segments of the public remain uneducated about HIV and how it is transmitted, which promotes fear and antipathy,” resulting in discrimination (p. 1). Many scholars have theorized that HIV/AIDS discourse in the United States links AIDS exclusively to gay men in order to further discrimination against homosexuals

3 and to remove the threat of HIV/AIDS from the heterosexual sphere (Dean, 2000; Edelman, 1994; Seidman, 1992; Yingling, 1997). Several national studies support this idea, showing continuing negative attitudes towards people with HIV/AIDS, gay men, and a lingering social connection between gay men and HIV/AIDS. Various studies depict differing responses toward PLH, although almost all indicate some degree of negative attitudes. In national surveys, Herek and Capitanio (1999) and Herek, Capitanio, and Widaman (2002) found that respondents believed that PLH deserved AIDS, especially if they contracted it through sex. Respondents also believed that PLH were personally responsible for their condition. Surveys that sample college students often show similar results, although some indicate that collegiate environments might offer a more supportive environment. Camye, Baroway, Perkins, Pousson and Whipple (1991) discovered positive attitudes among college students and faculty, although D’Augelli and Hersberger (1995) did not, demonstrating that AIDSphobia (i.e., the irrational fear of acquiring HIV/AIDS, especially through casual contact) was associated with homophobia. Long and Millsap (2008) noticed increases between AIDSphobia and homophobia. Walch, Orlosky, Sinkkanen and Stevens (2010) determined men were more homophobic than women, but asserted that education and knowing a gay individual generally improves tolerance towards homosexual people. They also drew correlations between respondents’ amount of education had about AIDS or knowing a PLH and the degree to which the individual was AIDSphobic (Walch et al., 2010). White, Puckett, Dutta, Hayes, Kundu, and Johnson (2011) examined various factors related to attitudes among senior year and master’s college students toward PLH. They drew a relationship between youth, level of education, and reliance on authority figures as predicting more positive attitudes. Colleges and universities should be environments where students feel safe, included and valued as members of the campus community. These studies suggest that, for gay college men with HIV, some campuses may offer such an environment. Research indicates the likelihood of finding an accepting or supportive collegiate environment will partially be determined by the composition of that community as well as efforts to provide non-stigmatizing education about HIV. Still, a troubling implication is that these findings demonstrate a potential double-bind for PLH on campus: invisibility on campus stifles the opportunity for others to know a PLH, which could possibly improve the campus atmosphere, yet disclosure is risky and not guaranteed to result in favorable outcomes. Furthermore, although some of these studies indicate that colleges

4 and universities may be supportive environments for PLH, students with other stigmatized identities have not always found communities of higher education to be inclusive. Challenging Student Development Identity Theory The social and cultural environment in which PLH find themselves certainly impacts how they understand their identity as individuals carrying a virus with significantly negative social meanings. Identities are social constructions: “they persist through history, race, class, gender, and sexuality hierarchies are never static or fixed, but undergo change as part of new economic, political, and ideological processes, trends and events.…[And, so, they] must be understood within a specific historical and global context” (Weber, 1998, p. 16). Identities are neither fixed nor biological—they are the product of social contingencies, including struggles for resources and power. This often results in dominant groups (i.e., those groups in or with power) assigning greater moral worth or superior characteristics to members of their own groups and lesser status to members of subordinate groups (i.e., those with less power) as a strategy for “securing its position of dominance in the system” and, consequentially, justifying their possession of greater resources (Weber, 1998, p. 20). Identities operate simultaneously, intersectionally, so most people “occupy both dominant and subordinate positions” such that “there are no pure oppressors or oppressed” (Weber, 1998, p. 24). Accordingly, examining how identities interact to provide varying degrees of advantage and disadvantage is necessary (Weber, 1998). Related to HIV/AIDS, belonging to certain identity groups may hinder or facilitate access to medicine, support structures, and other needed resources. In terms of identification, social identities could impact what societal discourses individuals are most exposed to or have access to for making meaning of HIV/AIDS in their life. In the student affairs literature, multiple theoretical frameworks for understanding identity are used (Torres, Jones, & Renn, 2009). Most of the theories employed in the field represent the social constructionist view of identity, and many forward the view that identity is a developmental progression towards more complexity (Torres et al., 2009). Postmodern and poststructural approaches to identity are much less utilized, and some scholars believe that they may render the study of identity “nearly impossible” (Torres et al., 2009, p. 581). Queer theory, a poststructural critique of sex, sexuality and gender identity theories (Wiegman, 2012), and the theoretical grounding for this study, is considered a new development to the study of identity in student affairs (Torres et al., 2009).

Still, some scholars have attempted to incorporate postmodern ideas (and queer theory in particular) into the study of identities of college students. Postmodern theoretical perspectives challenge traditional conceptions of identity by suggesting that identity binaries (e.g., man- woman, homosexual-heterosexual) are malleable, unsure, unstable and suspect (e.g., the category of homosexual is a product of psychiatric-medical power and discourse) (Abes, Jones, & McEwen, 2007). Considering the intersectional approach advanced by Weber and others, the postmodern critique of identity, and constructivist conceptions of young adult development, Abes, Jones, and McEwen developed the Reconceptualized Model of Multiple Dimensions of Identity (R-MMDI). This model illustrates how identities achieve saliency and intersect within a given context, filtered through students’ developmental capacities for making sense of that context. Abes (2007) and Abes and Kasch (2007) subsequently used queer theory to better understand lesbian college students’ identity. Torres, Howard-Hamilton, and Cooper (2003) reminded educators that “the college years are critical for the development of identity” (p. 3). However, they raised concerns about the lack of studies focused on the identity development of students belonging to subordinate (i.e., groups that hold less power in society than other groups) or marginalized groups. Furthermore, they questioned the appropriateness of applying models created by studying students with dominant identities (e.g., white, male) to marginalized student populations. As history as proven, doing so may lead to designating marginalized students as deficient or deviant (Torres et al., 2003). Failing to attend to college students’ identity development can “have implications for the individual’s level of adjustment as well as for the quality of [their] interactions … and for the environment” (Torres et al., 2003, p. 3). Although I eschew the traditional modes of understanding college student identity by adopting a poststructuralist critique of identity, I do share an understanding that theorizing about identity—and beyond it—is important, and believe that taking alternate theoretical perspectives is always illuminating and informative. I also share a common interest in exploring the dynamics of the college environment; I wonder how institutional and cultural contexts may impact the ways in which participants cultivate their selves. Here is my strongest divergence in how to think, inquire, and theorize about college students. I explore the self-cultivation of these men—the ways in which these men go about building a relationship to themselves and to HIV/AIDS—rather than their identities and

6 identification processes (Foucault, 1988). Theories of identification, particularly those used in student affairs work, often rely heavily on psychological or psychosocial theories and models that describe negotiations, stages, or tasks individuals go through to construct their identity (Torres et al., 2003). These theories frequently (though not always) implicitly and explicitly assume access to interior (e.g., psyche, unconscious, or cognitive) processes and a desirable arrival point for individuals. I diverge from these theories with my interest in describing students’ expression of their experience in a way that avoids recourse to psychological or process-oriented models. Self-cultivation focuses more on “an always-becoming self with which one could and must experiment” and the practices and techniques individuals employ in cultivating their selves (Roach, 2012, p. 31). Theorizing the HIV Positive Self Little current literature exists, particularly in a higher educational context, regarding the self-cultivation, identity, or subjectivity of people with HIV/AIDS. Baumgartner and David (2009) examined the identity development of people living with HIV (PLH) but their study has severe limitations in understanding the modern experiences of young adults. They studied PLH of a median age of 42 in 1996, soon after the development of antiretrovirals allowed those with access to medicine to manage HIV as a chronic rather than terminal illness. Baumgartner and David (2009) advanced a constructivist model of identity development involving stages of diagnosis reaction, post diagnosis turning points, integration, and management of disclosure to others. Baumgartner and David (2009) acknowledged the social stigma inherent in having HIV and social obstacles but do not figure how the social signifying of HIV/AIDS may impact how individuals understand their identity. In similar work, Rintamaki (2003) focused strongly on the social construction of HIV stigma in his identification of four identity processes that “involve how people lace value on their HIV social group membership and the salience of this identity” (p. iii). The four social processes are: “(a) managing negative meaning, (b) managing positive meaning, (c) orienting to stigma, and (d) managing salience” (p. 63). “Numerous factors …can affect movement across the four process dimensions” such as health problems, treatment side-effects, care provider attitudes, personal attitudes, spirituality, activism, “stigma encounters” and others (p. 190). In a queer analysis of how society has reacted to AIDS, Dean (2000) emphasized that HIV may be

7 invisible to PLH as a component of their identity or they may be unwilling to articulate it as such given its signification in society. An In/queer/y about Collegiate Gay Men Living with HIV My research seeks to understand how collegiate gay men living with HIV narrate HIV/AIDS in relationship to themselves. To state this differently, I inquire into the discourses rhetoric, and language these men deploy—or don’t deploy—to speak—or leave unsaid—to discuss their relationship to HIV/AIDS. What discourses and narratives inform or express how gay college men living with HIV understand themselves and HIV/AIDS? To state this more simply, how do these men express their experience of being gay college men with HIV? This is not an investigation of identity development or identification process. Rather, this study takes as inspiration Foucault’s (1988) interest in questioning how certain discourses in Grecian antiquity and early Christian thought shaped “the cultivation of the self …the relations of oneself to oneself,” or the way in which individuals constituted themselves as ethical subjects (p. 43). Cultivating the self in Grecian and Greco-Roman antiquity involved developing a way of relating to others through work on the self (Roach, 2012). The desired transformation “was not an egoistic or resigned retreat into individualism … but a social practice” (Roach, 2012, p. 30). This “model of knowing the self … was distinct from ‘the sciences of the mind, psychology, the analysis of consciousness,’” and, as such, provide alternatives to “the scientific and normative disciplines of the self favored by our post-Christian, post-Freudian culture,” or so Foucault hoped. (Halperin, 2007, pp. 7-8) Attendant questions to my primary questions are: How do these men say they think about HIV/AIDS (or don’t)? What kinds of stories do they tell? How do they tell them? What discourses do they employ? From where do those discourses originate? What, if any, college- based narratives or discourses do these men use to express themselves and living with their virus? How does (if at all) HIV/AIDS impact their experiences in the college environment? How does, if it does, the college environment inform their constitution as a person with HIV/AIDS? How do these men feel? How do they experience college life? What, if any barriers, do they see to their ability to have a fulfilling college experience, and to complete college? Who are their relationships, support networks, friends, family, and how do these relate, if at all, to living with HIV?

Queer theory is the theoretical underpinning for this inquiry. Viewing research findings through a queer lens means that researchers must “reconcile ourselves to our having multiple and fragmented, discursively constituted subjectivities, intersected significantly by gender, race, sexuality, and class among the many and diverse subject positions that mediate everyday life” because both researcher and participants are bound up in a symbolic order of discourse (Kong, Mahoney, & Plummer, 2002, p. 244). Accordingly, in this study I consider how historical, cultural, and institutional discourses around social identities (e.g., race, sexuality) inform the narratives and discourses participants employ to discuss their lives, their collegiate experience, and their relationship to HIV/AIDS. In particular, I focus on what kind of environment the practices and discourses of higher education create for gay male collegians with HIV. Summary of Introduction In 1981, AIDS was first identified in the United States by the Centers for Disease Control as Gay-Related Immune Deficiency, or GRID, several months after the media had been reporting on the spread of a “’homosexual cancer,’ ‘the gay epidemic’” (Seidman, 1992, p. 226). Since then, although HIV/AIDS affects people of all sexualities, the pairing of AIDS, a once terminal and now chronic disease, with gay men and death endures. This historical association of HIV/AIDS with gay men has resulted in societal moral judgments against and assignment of blame for HIV/AIDS to gay men, especially those with HIV/AIDS (Seidman, 1992). Unfortunately, societal attitudes toward men (and women) with sexual identities and practices that do not align with traditional, hegemonic heterosexual norms, and people with HIV remain intensely negative. Furthermore, little is known about the experiences of college students living with HIV. Therefore, my study inquires into how gay men who are living with HIV and attending an institution of post-secondary education understand their relationship to HIV/AIDS. As I began my inquiry, I was sensitized to the fact that these men would understand the saliency of HIV to their identity differently, and perhaps not at all. I framed my study in a way to best understand the narratives and discourses these men use to articulate this relationship and what social and historical discourses impacted their telling of their lives. My framework also seeks to capture lived experienced and to contribute to the existing archives of those who have lived with HIV/AIDS.

Chapter Two: Literature Review Literature Review The antiretroviral treatments (ART) currently available in the United States can enable people living with HIV to manage it as a chronic, rather than terminal, illness. However, numerous obstacles mean that, as of 2011, only an estimated 36% of the U.S. HIV positive population receive ART (Valdiserri, 2012). Only 28% of PLH “are getting the full benefits of the treatment they need to manage their disease and keep the virus under control” (Valdiserri, 2012). Some of the participants in this study have had times in their lives where they did not receive ART, did not adhere to their medical regimen, could not afford ART, or the ART treatment was not working for them. However, all the men participating in my study considered themselves as having a manageable disease. These men also discussed the intense stigma they faced in their lives. Therefore, prior to thinking about HIV specifically, I examine chronic illness and stigma, both of which connect to each other. Or, as one participant, Josh, put it, “It’s never, ‘Oh, you have a chronic condition.’ It’s like, ‘Oh, what kind of lifestyle did you have that got you that chronic condition?’ It’s never about the condition; it’s about the precipitating events to acquiring the condition that is the issue.” Although this study focuses on self-cultivation rather than identity, most of the chronic illness literature deals with the concept of identity—as do most of the empirical studies on people living with HIV/AIDS (PLH). Both the studies on chronic illness and HIV identity tend to employ constructivist methodologies, but they still provide generative theoretical considerations and constructs for thinking about and with PLH. The studies on how individuals incorporate a chronic illness into their lives have relevance in thinking about the relationship of the self to HIV. Also, individuals with chronic illnesses often experience societal judgments about their illness, including for merely having the illness (Charmaz, 1991). Therefore, examining the cultural operation of stigma proves useful to illuminate the environment that people with HIV must navigate and negotiate in terms of dealing with a stigmatized identity. Specifically, Goffman’s (1963) concept of spoiled identities, the ruination of a normalized identity by the reaction of others, serves as the foundation for understanding stigma. After my examination of chronic illness and stigma, I explore the various facets— social/cultural, psychological, historical and political—of HIV/AIDS. First, studies investigating attitudes towards PLH provide evidence for the stigma faced by PLH in society and

10 college environments, how AIDS stigma intersects with other prejudices, and possibilities for altering perceptions. The literature on HIV as part of the construction of the self can be broadly catalogued into three categories: disclosure of HIV status and/or gay identity; psychosocial and psychological studies on HIV and identity; and the cultural and political construction of AIDS. This last body of literature critiques oppressive, heteronormative institutions and society as personifying AIDS as the embodiment of gay male deviance. Heteronormative culture “thinks of itself as the elemental form of human association, as the very model of intergender relations, as the indivisible basis of all community, and as the means of reproduction without which society wouldn’t exist” (Warner, 1993, p. xxi). Heteronormativity works differently depending on intersections of various identities (e.g., race, class, gender) (C. J. Cohen, 2005). Many queer perspectives assert that AIDS as constructed in contemporary discourse do not signify anything other than the dissolution (i.e., death, literal and symbolic) of gay identity. Given the high death rates due to AIDS in the 1980s and 1990s of gay men, AIDS came to be both a figurative and literal embodiment of anti-gay discourses that characterize homosexuality as a deadly disease. Despite the availability of ART, this discourse remains pervasive. Because the queer critique of American social discourse on HIV/AIDS is essential to understanding my methodology, I reserve that discussion for last, covering more traditional, empirical studies on living with HIV/AIDS first. Chronic Illness Charmaz (1991) observed, “Living with a serious illness takes effort and devours time. It also means overcoming stigmatizing judgments, intrusive questions, and feelings of diminished worth” (p. 2). The problems of living with a serious, on-going illness are many: From getting through the day to dealing with the inequities of medical care, living with chronic illness can result in unending knotty problems and unforeseen hardships. Chronic illness can set people apart from others and take over their lives. Nonetheless, most people live with their illnesses rather than for them (Conrad 1987; Schneider and Conrad 1983). Often, they try to keep illness at the margins of their lives and outside the boundaries of their self-concepts. Though sometimes people can do that, at other times they must struggle to do so, and at certain points they cannot. (Charmaz, 1991, p. 4) For Charmaz (1991), identity and illness “shift and change as illness progresses or recedes into the past” along with “the type, quality, and quantity of help” chronically ill people

11 receive (p. 4). Most notably, not only does time impact illness, illness impacts time: “living with serious illness and disability can catapult people into a separate reality – with its own rules, rhythm, and tempo. Time changes—drastically” (p. 4). Living with a chronic condition varies between the manageable and the overwhelming, threatening to shatter people’s world and self- concept: “Having a chronic illness … means struggling to maintain control over the defining images of self and over one’s life” (Charmaz, 1991, p. 5). Chronic illness bridges the physical and the psychic; identity and the body become intertwined in way that differs for many non-ill individuals. Particularly when the illness disturbs normal functioning, “chronic illness assaults the body and threatens the integrity of self. …Thus, chronic illness with impairment …undermines self and identity” ( Charmaz, 1995, p. 657). In order to cope with illness, people may choose a number of strategies such as “ignoring it, minimizing it, struggling against it, reconciling self to it, and embracing it (Charmaz 1991; Radley 1991)” (Charmaz, 1995, p. 657). Which strategies people chose may vary at various points in their life. Although Charmaz (1994) viewed distinct identity challenges for men with chronic illness, she notes that her study included only a “few” gay men (p. 273). Chronically ill individuals will usually resist describing their suffering in ways “that might undermine [their] worth and elicit moral judgments” (Charmaz, 1999, p. 364). Yet, most people with chronic illnesses do suffer, at one time or another, to varying degrees. Suffering takes on various forms: It includes malaise, discomfort, pain, and agony. It is immediate and sometimes relentless. Everything blurs as the state of one’s body takes over. Drugs dim recall and distort chronological sequence. … Suffering … gives rise to actions as well as feelings. It shapes new stories and moral meanings. Suffering poses existential problems of identity and continuity of self. (Charmaz, 1999, pp. 364-365) Very relevant to this study is Charmaz’s (1999) notation that medicines used to control the illness may also contribute to physical and mental suffering. Charmaz (1999) was clear that suffering with chronic illness is not merely an experience of the body and mind, but that “suffering is a profoundly moral status” (p. 367). The ability of a chronically ill person to make moral claims rests upon the degree to which others deem that person’s suffering as worthy of dignity (Charmaz, 1999). Yet even for those legitimized, they find their moral status erodes after time, often leading to feelings of shame (Charmaz, 1999). To prevent decay in moral

12 worthiness, many people choose silence, sometimes at great medical cost (Charmaz, 1999). Although Charmaz did not directly address HIV/AIDS in her expansive contributions, she does offer a highly relevant observation: “Whose suffering matters? Not everyone’s” (Charmaz, 1999, p. 375) Stigma Goffman (1963) defined stigma as “an attribute that is deeply discrediting” (p. 3). Stigma is contextual and cultural; “an attribute that stigmatizes one type of possessor can confirm the usualness of another, and therefore is neither creditable nor discreditable as a thing in itself” (p. 3). For example, a person missing a limb from a congenital defect may be ostracized or avoided by people, but a person missing a limb because of military service may well be hailed as a hero. Alex Minsky serves as a recent example of this: the young, white Marine lost his leg in a tour of Afghanistan but has successfully parlayed his loss and military service into a well-publicized modeling career (Golgowski, 2013). Goffman (1963) identified three types of stigma: “physical deformities,” “blemishes of individual character,” (in which he includes “imprisonment, addiction, alcoholism, homosexuality, unemployment” and other types) and “tribal stigma of race, nation, and religion” (p. 4). People with a stigma, noted Goffman (1963), are perceived as being “not quite human,” resulting in discrimination that “effectively, if often unthinkingly, reduce his [the discredited person’s] life chances” (p. 5). Often accompanying this are derogatory terms that “impute a wide range of imperfections on the basis of the original one” (Goffman, 1963, p. 5). Attempts to defend one’s identity as creditable may often be viewed as “a direct expression of his [sic] defect” (Goffman, 1963, p. 6). Green and Sobo (2000), following Goffman, clarifed that stigma has various “dimensions” or stigmata—stigmatized markings—that include: “degree of disruptiveness, aesthetics, or aesthetic qualities, causes or origin, course or changes over time, the degree of peril held for others and concealability (Jones et al. 1984; see also Herek 1990)” (Green & Sobo, 2000, p. 14). Some of these aspects of stigmata depend on “the degree to which [they] are obvious and external, as would be the case with visible lesions” (p. 14). PLH may also experience stigmatization because “onset controllability—the degree to which a disease is preventable—is correlated with social rejection” in several studies (p. 14). However, as several of the men in this study attest, the way in which they acquired HIV has had little to no impact on how harshly people treated them. Unfortunately, merely having a contagious or progressive

13 disease (like HIV) is “also associated with more negative societal reactions” (Green & Sobo, 2000, p. 15). Green and Sobo (2000) noted that Goffman distinguishes between “being ‘discreditable’ (possessing a hidden stigma and not disclosing it) and being ‘discredited’ (possessing a visible stigma or having disclosed or been found by others to have a heretofore hidden one)” (p. 14). Although HIV and the medicine used to treat it do can produce outwardly visible physical changes, most people would likely be unable to discern these as markers of HIV; therefore, HIV is largely a discreditable illness. PLH who do not wish their serostatus (i.e., the presence, or lack of presence, of HIV antibodies in one’s blood) known to others and do not disclose (or only disclose to a trusted few) are subject to others finding out through other means and potentially experience discrediting. Stigmatized individuals might try to conceal discrediting markers, such as using plastic surgery to conceal facial wasting (a deterioration of facial muscles) or belly fat accumulations brought on by health issues or medicines used. Conversely, some may use “stigma symbol, … signs which are especially effective in drawing attention to a debasing identity discrepancy” (Goffman, 1963, p. 43-44). Some HIV positive individuals choose to tattoo their bodies with a biohazard or “plus” sign, signifying them as HIV carriers. Although Goffman’s work on stigma emphasized individual social interactions over structural inequality and “his flat depictions of social groups are troubling … it is breathtakingly abstract” (Love, 2011, pp. 188-189). That abstraction allows for re-thinking his concepts in terms of larger social discourses and historical and systematic oppressions. Initially in this study, I reframed his ideas within a queer theoretical context, viewing stigma as a product of a social order that seeks to render anything that threatens heterosexual hegemony as outside it. Having concluded my study, I have since altered my framing of stigma, a change I discuss in Chapter Five. Social and Collegiate Environmental Attitudes PLH must clearly contend with stigma and rejection. In a national telephone study conducted from 1991-1997, Herek and Capitanio (1999) found that attitudes towards AIDS and homosexuality “remain closely linked” and an increase in people who felt that “people with AIDS have gotten what they deserve” (p. 1130). They also determined that people expressed less sympathy and more anger towards gay men than heterosexuals with AIDS. Following up with an additional study in 1999, Herek, Capitanio, and Widaman (2002) analyzed attitudes over

14 the decade and found declines in overtly negative attitudes and decline in support of punitive policies (e.g., quarantining PLH), but little progress in other areas. In addition to expressing fear and disgust, the number of respondents who believed that people infected through sex deserve AIDS increased. One-half of the respondents believed PLH were responsible for their illness. Research conducted by Walch, Orlosky, Sinkkanen, and Stevens (2010) determined that individuals’ fear of AIDS and homophobia varied according to age, education, knowing someone who was homosexual, gender, and some religious and political variables. More education mildly correlated with less AIDSphobia and less homophobia as did knowing someone who was homosexual. In the university environment, attitudes toward people with HIV likely reflect those of society in general, although the results of various studies often conflict in determining whether colleges and universities might engender more accepting attitudes towards PLH. Camye, Baroway, Perkins, Poussson and Whipple (1991) discovered generally positive attitudes of college students and faculty towards people with AIDS. In contrast, a multi-year study of heterosexual-identified undergraduates (D’Augelli & Hersberger, 1995) reported high levels of AIDSphobia, the unreasonable fear of catching HIV/AIDS especially through casual contact, on college campuses and connections with homophobic attitudes. Long and Millsap (2008) studied the fear of AIDS and homophobia among 709 undergraduate college students “with a self- identified ethnic origin” (p. 638). They saw increases from a 1987 study in correlations between AIDS phobia and homophobia, similar to D’Augelli and Hersberger (1995) and Herek and Capitano (1999). White, Puckett, Dutta, Hayes, Kundu, and Johnson (2011) surveyed predominantly senior year and master’s students, many of whom were health and social work majors regarding their attitudes towards PLH and the “degree to which a person believes that his or her health is controlled by either external or internal factors” (White et al., 2011, p. 13) Although use of a convenience sample constrains the results of the study, their findings echo some studies while contradicting others. Level of education and reliance on authority figures predicted better attitudes toward PLH. This particular finding may suggest the need for university faculty and officials to take the lead in de-stigmatizing HIV/AIDS. Taking a different approach from these studies, Schoeneman, Schoeneman-Morris, Obradovic, and Beecher-Flad (2010) analyzed images in 94 abnormal psychology textbooks

15 published from 1984 to 2005 in the United States and how they represent AIDS and what that representation might suggest about larger societal understandings and attitudes about AIDS. The authors concluded that the pictures, mostly of men, closely tie AIDS to images of “death, plague, cancer, sin, war, alienness, homosexuality, sexually transmitted infection (STI), victimization, and Other-ness” (p. 29). Surveying a bevy of attitude surveys, Walch et al. (2010) determined that “although there is evidence that severely punitive attitudes have diminished, there is also evidence that stigma and fear of AIDS remain prevalent,” but critiqued most studies as inadequate in their accounting for a “broad range of social and demographic factors, both individually and in combination, accounting for interrelationships among the variables, in relation to homophobia and fear of AIDS among a heterogeneous community sample” (p. 312). They assessed that racial correlations with homophobia and AIDSphobia are indeterminable at best, although men do seem to be more homophobic and AIDphobic than women (Walch et al., 2010). Knowing somebody who is homosexual or HIV positive and education do seem to carry positive impacts, but perhaps not to a great degree (Walch et al., 2010). The degree to which any institution of higher education may be welcoming or at least not threatening to a PLH likely varies depending on members of that campus. Disclosure and HIV Given the negative, or at best uncertain, societal environment that PLH must contend with, in larger society and on college campuses, determining who and how to disclose one’s serostatus is a vital consideration. All studies about disclosure agree that the societal stigma of HIV presents enormous and significant challenges to infected individuals. Given stigma associated with HIV, many individual choose to keep their status to themselves, whether gay or heterosexually identified. According to these various studies, disclosure, or lack thereof, of HIV status impacts individuals in both psychological as well as physical ways. In a qualitative study of gay and heterosexual intravenous drug users, Cusick and Rhodes (1999) found HIV stigma “so potentially damaging” that it likely inhibits some people disclosing their HIV status even to those with whom transmission is a risk (p. 14). Since “self disclosure is generally intended to confirm one’s worth,” negative impacts from disclosure or feeling unable to disclose could greatly impact subjectivity (Cusick & Rhodes, 1999, p. 15). Perhaps most notable in their study is that all participants experienced disclosure as a “process over time” (p.

14). Again, temporal considerations, as in Charmaz’s work, may factor into how PLH relate to the virus/disease. A similar study by Frye et al. (2009) with heterosexually identified drug users who were HIV positive showed that individuals chose if, how, when, and to whom to disclose based on the degree to which they felt they were likely to suffer rejection or be labeled as deviant. Some participants felt that PLH were unduly burdened and singled out in society for having to disclose status and be responsible in sexual encounters. Some individuals used public or “consistent” disclosure as a method of self-affirmation and some did not see HIV as impacting identity at all. For many, HIV disclosure “was experienced … as being consequential to identity. … Disclosure of HIV status … can be seen not only as communication behaviors based on rational cost-benefit analysis, but as actions with identity-related risks and benefits” (p. 1076). Although none of the men in my study disclosed using intravenous drugs, the findings of these studies certainly resonate with the ways they thought about disclosure. Arnold, Rice, Flannery, and Rotheram-Borus (2008) reviewed the literature focusing on disclosure in adult interactions for heterosexual PLHs. They authors concluded, as did Frye et al. (2009) and Cusick and Rhodes (1999), that disclosure is linked to perceptions of stigma and levels of social support; however “the process of disclosure is … not a universal one shared by [PLH] across all social contexts” (p. 88). The authors created a model that shows how identities, relationship roles impact the rules for governing “disclosure behavior” (p. 90). Indeed, Arnold et al. (2008) suggested that levels of disclosure indicate certain levels of acceptance, integration, or saliency of HIV as an identity, although they are not clear on the causality of this linkage. Gay men who are HIV positive may experience unique challenges or impacts in disclosing HIV and/or sexual identity given the strong linkage between AIDS and gay men. In a study of Danish homosexual men conducted prior to antiretroviral therapy (ART) availability, Skydsbjerg, Lunn, and Utchings (2001) found that HIV infection impacted the men’s willingness to share their sexual orientation with friends and family. Keeping sexual identity hidden resulted in greater likelihood of the men considering suicide and having poorer psychological well-being than gay men who were HIV negative. Since this study occurred before the development of ART, having HIV/AIDS at the time was typically a terminal condition, and this constitutes an important context for these outcomes. Physical health may be at stake as much as psychological well-being for gay men. Ullrich, Lutgendorf, and Stapleton (2003) determined that men who conceal their sexual identity reported worse health and greater disease progression. Their study

17 found a correlation between concealment of homosexual identity with lower CD4 counts (a measure of health for HIV positive individuals) and less social support. Also, a lower CD4 count was associated with less social support. In what he terms a lyrical essay, Armendinger (2009) meditated on the social norms of disclosure and how the social construction of HIV separates, stigmatizes, pathologizes and reduces positive men to carriers of virus. His thoughts echo those of many critical and queer theorists on the subject. Armendinger (2009) beautifully captured the violence of putting the burden of disclosure onto people with HIV: When disclosure is limited to the person who is HIV positive, what’s missing is reciprocity. It becomes increasingly difficult to see, or even to ask, how vulnerability exists on both ends. The question, “Who are you?”, which Hannah Arendt called the foundation of nonviolence, is replaced by, “How might you harm me?” (p. 177) These works highlight an important connection between disclosure of HIV status and the potential health and psychological ramifications of disclosing, or being able to disclose, or not. I now turn my attention to other studies that do not specifically focus on disclosure, but explore living with HIV through a psychological or psychosocial lens. Psychosocial and Psychological Perspectives on Living with HIV These studies provide an overview of what psychological and psychosocial theorists have been interested in understanding about men living with. Although I do not approach my topic from this perspective, these studies provide insight into the experience of living with HIV. Also, psychosocial development is a key theoretical lens used in student affairs work and theorizing. The psychological batteries of Skydsbjerg, Lunn, and Utchings (2001) detailed numerous negative psychological impacts for men living with HIV, including a higher percentage of suicidal ideation (although this study was conducted prior to the invention of ART). Several other studies examined HIV and identity from a psychosocial perspective. Of these, only one study focused on college students; unfortunately, it was one of the few to not consider the possible impact of societal power dynamics. This study by Bower and Collins (2000) analyzed the responses of five HIV positive students using various moral, psychosocial, and identity development theories prevalent in the student affairs field. Being HIV positive, they claimed, derailed the capacity of students to deal with emotions and develop purpose but “forced an

18 acceleration” in development for others (Bower & Collins, 2000, p. 436). Like several of the disclosure studies, they highlighted the importance of a supportive network. Two aspects of this study give caution to interpreting their findings: first, they note that the prospect of an early death looms over the students they interviewed on a daily basis. The advances in ART since the time of the study may create very different, more positive psychological impacts in students today. Also, Bower and Collins (2000) suggested that one HIV positive gay student did not experience moral development according to Kohlberg’s moral schema, but rather moral stagnation or regression from being infected. However, they fail to account for the potential impact of societal stigma, oppressive social norms, or for the appropriateness of using Kohlberg’s framework in their analysis. Other studies tended to better understand the impact of societal constructions of HIV, gay men, and masculinity in conjunction with psychosocial development. For example, in their study of how gay men understand the identity or label of “top” (i.e., the insertive partner during anal sex) and “bottom” (i.e., the receptive partner), Wegesin and Meyer-Bahlburg (2000) explained how societal constructions of masculinity and masculine power may result in HIV infection. Gay men in their study perceived tops as being more masculine and thus more powerful and having higher social status than bottoms, who were seen as more feminine. Bottoms were much more likely (74% vs. 32%) to be HIV positive than tops. Although the risk of HIV transmission is greater for receptive partners, the researchers noted that bottoms who feel ashamed of their status may engage in fewer safer-sex practices. This study occurred in an urban area with a high concentration of gay men during the early 1990’s and identity labels such as top and bottom may no longer be as relevant or may differ in relevance to gay men now or in different geographic locations. Rintamaki (2003) focused heavily on the social construction of HIV stigma in his identification of four identity processes that “involve how people place value on their HIV social group membership and the salience of this identity” (p. iii). The four social processes are: “(a) managing negative meaning, (b) managing positive meaning, (c) orienting to stigma, and (d) managing salience” (p. 63). “Numerous factors …can affect movement across the four process dimensions” such as health problems, treatment side-effects, care provider attitudes, personal attitudes, spirituality, activism, “stigma encounters” and others (p. 190). These identity processes likely impact behavior, such as self-care, disclosure, peer interaction, activism,

19 internalizing or rejecting stigma. Rintamaki’s (2003) findings seem to support many of the outcomes of the disclosure studies. Also looking at gay urban men, Tewksbury (1994) sought to understand the management of virtual social identities (e.g., what public others see versus how the men self-identify) through their use of language (e.g., deciding whether or not to use the term AIDS in reference to their health status). The signification of HIV/AIDS stands out as an important element for the men in his study. He learned that most men resisted objectification as HIV positive—they sought to emphasize their total identity, of which HIV was one element: “To be equated with one’s disease is to be stigmatized” (p. 344). They preferred the term HIV over AIDS, which denoted sickness and infirmity to most of the men. Many, although not all, individuals, rejected the word victim because of the implied helplessness or because it denotes that some with HIV are innocent and some deserve blame for their status. Tewksbury (1994) argued, “As individuals possessing a discrediting actual social identity [i.e., being gay], many HIV-positive gay men have instead opted to display their stigmas (both their sexuality and disease status) publicly. Such pronouncements are active attempts to redefine virtual social identities” (p. 345). Several of these findings mirror those of Frye et al. (2009). Most individuals used language they deemed best to “guide construction of self-perceived identities and…the identities granted to us from others in our social audiences” (p. 354). Although limited in focusing on mostly urban and white gay men, Tewksbury’s (1994) study is important because of the emphasis he places on how language and identity interact. Individuals choose specific language to express their identity, but language can also impact how individuals self-identify. Although my study does not investigate identification as many of these other studies do, their findings help sensitize me to the ways HIV positive gay men and other PLH have made meaning of and have related to the virus. Social, political, and institutional discourses always impact how people come to understand themselves; therefore, many queer and critical theorists have examined the system of signs and signifier in which gay men with HIV are caught up. AIDS as the Incarnation of Gay Male Deviance Whatever else it may be, AIDS is a story, or multiple stories, and read to a surprising extent from a text that does not exist: the body of the male homosexual. People so want—need—to read this text that they have gone so far as to write it themselves. (Treichler, 1999, p. 19)

The early elaboration of the story of AIDS assured everyone that AIDS was related to the “‘promiscuous’ gay male body …The connections between sex, death, and homosexuality” imbued it with metaphoric potential (Treichler, 1999, p. 19). Seidman (1992) sees 1those metaphors deployed in the rhetoric of conservative and liberal heterosexuals and gay men who continued to essentialize homosexual behavior as promiscuous, deviant, emotionally bankrupt, and morally corrupt. This discourse identified AIDS as a judgment and a signal to gay men to reform their behaviors in accordance to heterosexually-identified morals (e.g., romance and monogamy). Specific political and social discourses link AIDS almost exclusively to gay men. Seidman (1992) states: “to be perfectly clear, that for [conservative and liberal] heterosexuals and homosexuals, AIDS has served as a pretext to speak critically about homosexuality and to advocate reforms of the gay subculture” (p. 233). Seidman (1992) argues for “locating homosexuality in a historical and structural framework” that interrogates such assumptions and provides “a sociological point of view [that] would hasten the de-homosexualization of AIDS as its appearance would be seen as more historically contingent….In particular, a historical and structural viewpoint would compel critics of the gay subculture to countenance the crucial role of homosexual oppression” (p. 236). Seidman (1992) asserts that it was in “a society whose hostility to homosexuality helped to produce conditions conducive to creating endemic health and social problems for homosexuals” (p. 236). Treichler (1999) points out that many of the associations of AIDS to deviant groups was due to how data was collected and reported, linking the virus to “categories based on monolithic identity” (p. 20). Societal discourse constructs both how individuals think about their identity (e.g., do I have a morally implicated disease or just a disease?) but also how researchers understand identity. Halperin (2007) pleads for the “urgent political need to find ways of representing gay male subjectivity” in relationship to AIDS that resists “medical thinking …that distinguishes ‘healthy’ from ‘unhealthy’ behavior, and thereby tends to smuggle into an ostensibly scientific analysis many stealth assumptions about good and bad sex, functional and dysfunctional subjectivity” (p. 11). However, Dean (2000) believes that Lacanian psychoanalysis offers a site of resistance to the type of thinking that Halperin opposes.

1 I deviate from the guidelines of the Publication Manual of the American Psychological Association (6th ed.) going forward for using the past or present perfect verb tense in literature reviews. I use present tense when I find it improves readability and/or to emphasize certain assertions and propositions are still applicable. 21

Dean (2000) argues that American society has reacted psychotically (in Lacanian terms) to AIDS. Lacanian psychoanalysis understands psychosis as a reaction of the “real” (e.g., HIV) approaching too close to our psyche. According to Dean (2000), our psyche (i.e., our subjectivity, our inner self) is only sensible through a linguistic system of signifiers. Therefore, a psychotic reaction involves a displacement of the “Other” in the linguistic order. In other words, HIV/AIDS threatens to destroy the existence of gay and heterosexual people to such a degree that American society has created a discourse around AIDS that renders its meaning forever linked with death and homosexuality and thus non-threatening to heterosexuals. In such a society, gay men, and especially gay men living with HIV, become invisible. One implication of Dean’s (2000) work for our understanding of HIV as identity is that HIV may be invisible to gay men with HIV as a component of their identity or they may be unwilling to articulate it as such given its signification in society. Researchers should consider methods of inquiry and analysis that signify HIV/AIDS in non-homophobic ways. Edelman (1994), in an essay that makes similar points to Dean’s (2000), warns, however, that “any discourse on ‘AIDS’ must inscribe itself in a volatile and uncontrollable field of metaphoric contention in which its language will necessarily find itself at once appropriating ‘AIDS’ for its own tendentious purposes and becoming subject to appropriation by the contradictory logic of homophobic ideology” (p. 92). Yingling (1997) approaches the societal construction of AIDS similar to Seidman (1992) by detailing the political, historical, and scientific discourse that pathologizes AIDS and gay men. Although he does not take a psychoanalytic approach, Yingling (1997) reaches similar conclusions to Dean (2000): American society renders AIDS and same-sex desire invisible to heterosexuals. To do this, AIDS “remains a disease that attaches—rightly or wrongly—to [certain] identities: gay, IV-drug user, African, hemophiliac, infant, transfusion patient (the ‘guilty’ and ‘innocent’)” (p. 49). Yingling (1997) continues, “we must think AIDS not only as a public issue of ideology, apparatus, and representation but also as it is internalized and expressed by those infected and effected…because ‘AIDS’ as a signifier lodges in deep subliminal zones of memory, loss, and (im)possibility” (p. 50). For Yingling (1997), any attempt to theorize the subjectivity of the HIV positive person must account for how “the benign neglect of government agencies makes the epidemic a passive-aggressive act on the part of rational society” (p. 53). Most accounts of the HIV positive person’s subjectivity fail to account for this “act of political regulation” or describe an individual seeking a “‘good death’ with moral value” (Yingling, 1997,

22 p. 52). Despite this, “not all invocations of the ‘experience’ of AIDS need turn on this…broken subjectivity” (p. 52). Yingling (1997) invokes Lee Edelman’s sublime experience at the 1987 Lesbian Gay March on Washington and the AIDS Memorial Quilt as representations of “a communal reference system…in which experience becomes recognizable through collective frameworks and becomes therefore communicable as experience” (p. 54). Yingling here does work similar to Halperin by exploring how the subjectivity of people with HIV finds expression through cultural objects or narratives (the AIDS Memorial Quilt being itself a narrative). Collegiate HIV/AIDS Discourse Situated in the larger social discourse of HIV/AIDS, institutions of higher education have generated AIDS discourse particular to their specific functions. However, very little literature exists that addresses HIV/AIDS and higher education. Keeling (2002) provides the only overview of American higher education response to HIV/AIDS. In brief, Keeling (2002) remarks that universities and higher education professionals initially feared AIDS outbreaks on campuses, initially prompting a great deal of activity considering and developing policies, protocols, and educational responses. Later, just as interest in HIV/AIDS waned in the larger public sphere, so did it in higher education. What primary literature exists by and for postsecondary educational institutions on HIV/AIDS tends to focus on policy, law or education. The language of the available literature provides some clues to the kinds of discourse present in the sphere of higher education during the late 1980’s and 1990’s. After these two decades, however, literature directed at a large-scale higher education audience effectively disappears. In an attempt to address policy-makers in higher education, the Task Force on AIDS for the American College Health Association (ACHA) published AIDS on the College Campus (1986), a thin booklet providing recommendations, guidelines, and resources for institutions of higher education on AIDS. The introduction provides a snapshot of the climate at the time: “Some institutions have rushed into detailed policy-making, fearful of being caught without paper armor; others have chosen an approach of watchful waiting, and some fervently hope that AIDS, not having been an issue on campus so far, simply never will be” (p. vii). In its original and 1989 update, the authors strike a generally supportive tone towards students with AIDS2. They attempt to counter the pernicious political discourse of its time by insisting that “it is vital

2 This language reflects the preferred nomenclature People with AIDS (PWA), set forth in the Denver Principles, a document produced by AIDS activists in 1983. 23 to remember that AIDS is a biological event, not a moral comment” (ACHA, 1986, p. ix). Still, they resort to appealing to heterosexual supremacy by stating that AIDS is no “longer only a disease of gay men … [so there is] no justification for complacency on the part of any institution” (ACHA, 1986, p. ix). Although the task force likely viewed this as a pragmatic move, the statement effectively undercuts any claims of dignity on behalf of gay men this document might hope to make. The 1989 revision fortunately improved on much of the problematic language. The University of California Berkeley Student Health Services attempted to address AIDS education needs on campuses with AIDS Education on the College Campus (1987). This publication primarily provided options for educational workshops and programs but today serves as an archive of campus flyers, news announcements, and photographs of racially diverse men and women discussing, presumably, AIDS. A rare first-person account by a college student serves as the opening text of the publication. The student, Terry Weisser, wrote: AIDS is on the college campus now. It may not be visible, but AIDS is among us. I’m a student at UC Berkeley, and I know that people are dying. My lover, a former architecture student, died of complications arising from AIDS in 1985. I have AIDS- related complex (ARC) and know the horrors that AIDS presents. (Kodama, 1987, p. 3) Weisser’s statement serves as a reminder of the human experience in the middle of institutional response or non-response. McClain and Matteoli (1989) addressed the legal and practical considerations for American higher education administrators across myriad departments (e.g., admissions, housing, counseling, human resources) with AIDS. This volume demonstrates that enough institutions were considering—whether they acted on such considerations or not—how to respond to HIV/AIDS to warrant a publication on the topic. McClain and Matteoli (1989) advocated that institutions develop an HIV/AIDS policy while also listing why institutions may choose to avoid crafting this policy. Those reasons included AIDS being a “problem [that] does not affect mainstream populations”; concerns that developing such a policy would create bad public relations; and that addressing AIDS is tantamount to “giving tacit approval to high-risk behavior” (McClain & Matteoli, 1989, p. 130). Generally antiseptic in tone, the authors nonetheless managed to utilize loaded language in their description of whom HIV impacts:

Although data does indicate that the largest groups affected by HIV continue to be homosexual and bisexual males and intravenous drug users, data also indicates an alarming increase in positive HIV results in so called “mainstream” population member whose sexual partners with high-risk group members. (p. 130) Presumably, large numbers of non-heterosexual men (or those who use drugs) being infected is not to be considered “alarming.” This book provides insight into how higher education administrators might have been thinking about policy-making and other campus responses to AIDS. But perhaps it is most helpful in understanding the common reasons for why institutions were reluctant to respond. The authors stated that while they hit the most common themes, they had heard “numerous unique arguments against the adoption of an HIV/AIDS policy” (p. 131). H. Cohen (1994) assembled a book of case studies that demonstrates the continued questions, uncertainties, and concerns with HIV/AIDS in higher education. In retrospect, H. Cohen’s (1994) assertion that “universities and colleges have, for the most part, accepted an educational function with respect to AIDS: campuses typically sponsor programs that inform students about the disease and advocate measures to prevent transmission of the virus” is most intriguing (p. 129). His assessment certainly sounds reasonable and even likely, although the extent to which this happened is still unclear. D’Emilio (1992) differed with H. Cohen’s assessment, claiming that universities failed to react appropriately to the AIDS crisis. He advised lesbian and gay students to fight for “scientific, rather than moralistic information, on sexually transmitted diseases, including AIDS” (D’Emilio, 1992, p. 131). Although limited in number, these sources shed some light on the various discourses and responses generated by institutions of higher education. The dearth of publications past the 1990’s suggests a number of possible stories. With concerns about campus outbreaks waned, so likely did administrators’ interest in responding to HIV/AIDS. As the law, medicine, and politics of AIDS changed, and public attention dissolved, so did the attention of higher education. Although I do not wish to overstate my case, there seems to have been a moment where higher education as a whole—rather than individual institutions—had the opportunity to respond to the crisis and trauma of AIDS in powerfully transformative ways, but failed to, or chose not to do so.

Summary of Literature Review The literature on chronic illness and stigma provide useful conceptualizations for thinking broadly about and sensitizing researchers to possible aspects of living with HIV. Still, HIV is not always a chronic illness; individuals must have access to the medicine and health care that makes it manageable. Also, HIV differs significantly from most illnesses in the way those living with it are implicated in profoundly oppressive discourse. Research documenting the contemporary lives of people with HIV/AIDS is severely lacking, and existing research proceeds mostly from a constructivist or psychological paradigm. And while a great deal of value rests in the copious analyses of the stigmatizing and damaging discourses of AIDS and gay men, we decidedly need more studies that connect those deconstructions to real lives. Finally, almost no attention has been paid to collegians living with HIV. This study is one small step towards rectifying these imbalances—and to account for lived experiences while attending to social discourses and the history of gay men and AIDS in America. To best accomplish this goal, I turn to the theories and politics of queer activists and scholars to provide a useful framework for thinking about these men’s subjectivities within an oppressive cultural context.

Chapter Three: Constructing the Study Creating a Queer Qualitative Study In her review of LGBT and queer research in higher education, Renn (2010) observed the lack of queer theoretical perspectives and advocated that queer theory has the potential to “move the field of education research beyond the categories into which they … must place students and faculty” (p. 136). In one of the few studies to utilize a queer analysis of college student identity, Abes (2007) described the challenges and benefits of applying queer theory: Through its challenges to fixed identity categories, I was concerned that it took away a fixture onto which college students needed to hold in order to make sense of themselves. Yet queer theory's challenges to heteronormativity and assumptions about normality carried a luring appeal. (p. 58) Ultimately, however, Abes (2007) “was struck by how a queer analysis highlighted multiple ways in which the participants’ sense of self was influenced by both power structures and queer culture” (p. 71). I initially shared Abes’s concerns that a study designed through the lens of queer theory would prove to be too corrosive to the ways these men identified. Also, questions persisted in my mind about how one designs a queer study. Therefore, I turned to the principles and actions of AIDS activism to inform my approach. Although AIDS activist thought or discourse is not synonymous with queer theory, AIDS activism has both informed and been informed by cultural analysis that often falls under the rubric of queer theory (Berlant & Warner, 1995; Halperin, 1995; McRuer, 2002; Shepard, 2002). AIDS activism and the corpus of work now known as queer theory both engage in “queer commentary” (Berlant & Warner, 1995, p. 343). Additionally, “the cultural theory about AIDS that has been shaped by academics and activists during the past two decades represents queer theory at its best” (McRuer, 2002, p. 222). Using AIDS activist principles and practices to construct my methodology honors the lived experiences of participants while also foregrounding queer cultural and political perspectives on those experiences. The principles and methods of AIDS activism mixed the personal and the political as well as the public with the private (e.g., funerals used as political protests; peoples’ stories told over bullhorns at corporate and government protests). I did the same in this study by inviting these men to bring their stories to the public sphere by—some of whom have already done so in other venues—by generating narratives through interviewing. Additionally, in the tradition of AIDS

27 activists using art for political and personal expression and change, I asked the men to create artwork that speaks to how they relate to HIV/AIDS. Then, having presented their narratives, I consider what larger social-cultural-political narratives inform their self-formulation. I preserve their story as one valid way of understanding their lives, yet also “undo” these stories as constructs of an oppressive, heteronormative and compulsory able-bodied society. Compulsory able-bodiedness functions much like and with compulsory heterosexuality: it requires a performance of ability that is linked to heterosexual performativity (McRuer, 2006). This does not mean these men consider themselves disabled—or that they should be necessarily considered disabled—rather, all people fail to perform able-bodiedness (McRuer, 2006). Ability is a temporal condition that we all lose to various degrees, at one time or the other. This study shows how compulsory able-bodied discourses in conjunction with other overtly and covertly hostile and contemptuous social discourses result in certain structures of self-cultivation for these HIV positive gay men. Theoretical Perspective: Queer Theory Queer theory is a field of poststructuralist thought and inquiry. Poststructuralism contests modernist assumptions about human agency, arguing that “subjects are embedded in a complex network of social relations. These relations in turn determine which subjects can appear where, and in what capacity. The subject is … precisely constituted in and through specific sociopolitical arrangements” (Namaste, 1996, p. 194). The task, then, “is to make sense of the ways in which subjectivities are at once framed and concealed” (Namaste, 1996, p. 195). Poststructuralists emphasize the role of discourse “in forming individual subjectivity and social institutions. Language is the place where meanings are lodged …Poststructuralists highlight the inherently unstable patterns of linguistic and social order” (Seidman, 2008, p. 160). Despite falling under the umbrella of poststructuralism, queer theory remains difficult to define, largely by design. Haggerty and McGarry (2007) assert that “the best practitioners of 1990s queer theory resisted its instantiation as a ‘field’ precisely because its practice disrupted and deconstructed the implied differences between gossip and history, innuendo and subtext, sensation and performance” (p. 2). Understanding what queer theory is not proves instructive in understanding what queer theory is. Queer theory differs from lesbian, gay, bisexual, transgender (LGBT) theory in several important ways. LGBT studies encompass “modernist and critical approaches that rely on fixed definitions of gender and sexuality” (Renn, 2010, p. 132).

Such approaches use binary understandings of human nature (e.g., homosexual/heterosexual or male/female) for social or political activism. Queer theory rose partly in opposition to such understandings and politics of identity (Corber & Valocchi, 2003). Halperin (2012) defines the queer movement as a reversal of the gay movement. Whereas the gay movement stresses sameness between homosexuals and heterosexuals, the queer movement claimed that queers were “completely different from heterosexuals—except for what we do in bed (which is more or less what everyone does in bed, with some minor, insignificant variations)” (Halperin, 2012, p. 60). AIDS activism, influenced by the work of Michel Foucault and others, contributed to queer theoretical ideas by challenging the ways public institutions constructed, regulated, and (in- )validated citizens through discourses of sexuality (Halperin, 1995). More recently, queer theory has expanded to include analysis of multiple identities—not just sexuality and gender—such as dis/ability, class, and race (C. J. Cohen, 2005; Johnson, 2005; McRuer, 2006). Although multiple perspectives of what constitute queer thought abound, my vision aligns with Edelman’s (2004) assertion that “queerness attains its ethical value precisely insofar as it … [accepts] its figural status as resistance to the viability of the social while insisting on the inextricability of such resistance from every social structure” (p. 3). This vision of queerness is not the rejection of the future per se … but rather a future that promises wholeness, healing and plenitude. What does it mean to acknowledge, always and everywhere, that … the brass ring will always be just out of reach? That disappointment is constitutive, rather than an obstacle to be overcome. (Brintnall, personal communication, March 11, 2012) I’m drawn to the possibilities in contesting the insistence on needing—and the promises of obtaining—a bright, happy future. I am curious as to what kind of violence and demands that promises of “the good life” might enact on gay men with HIV, particularly since current visions of that life seem to exclude or forget them. During the AIDS epidemic of the 1980’s and 1990’s, “the public gay response to HIV/AIDS … was positively drenched in affect” (Halperin, 2012, pp. 78-79). Yet prior to—and during the AIDS epidemic—the cultural and political environment of the United States necessitated that inquiries into the self-fashioning of queers be foreclosed (Halperin, 2012). Recent political gains for gays and lesbians, as well as changing social attitudes may, however, now permit such inquiries, such as mine (Halperin, 2012). In order to do this, I turn to narrative

29 and art as ways of exploring the self-cultivation of HIV positive gay men. Such “queer thought may not have the … sheen of scientific objectivity or sophistication …. But that … is entirely to its advantage” (Halperin, 2007, p. 10). Queer Methodology Queered qualitative research “bring[s] stabilized gender and sexuality to the forefront of analyses in ways that are not usually advanced and that put under threat any ordered world of gender and sexuality” (Plummer, 2005, p. 369). Relative to HIV positive gay men, queer methodology means embracing the tenets, perspectives, and methods of radical queer AIDS activists. As an academic endeavor, I attempt to queer qualitative research by using methods with various standings in the social sciences in a participatory and dialogical manner to allow for differing kinds of representations. Thinking queerly about research reveals it as a performance, since “as performatives, actions do not represent identity; instead, actions create identity” (Abes, 2009, p. 147). Butler (2004) describes performativity as consisting of a complicated relationship between speech acts and bodily acts: the body gives rise to language, and that language carries bodily aims, and performs bodily deeds that are not always understood by those who use language to accomplish certain conscious aims. …We say something, and mean something by what we say, but we also do something with our speech, and what we do, how we act upon another with our language, is not the same as the meaning we consciously convey. It is in this sense that the significations of the body exceed the intentions of the subject. (p. 199) Researchers need to consider how our actions and interactions with and away from research participants construct our identity and potentially the identity of participants. Our questions often “do the work of ‘calling,’” or hailing the identity of our research participants (Gunaratnam, 2003, p. 117). As researchers we need to realize and interrogate the investment we have in bringing forth certain identities or subjectivities in our participants. Our desire, and its resulting consequences, to elicit certain performances from participants is related to our own performances of identity and the narratives we tell (ourselves and others) about our experiences and subjectivities, and likely also to the kind of experience we wish to have in the research process. We make decisions to act and dialogue in certain ways while with our participants that may be performances (e.g., researcher, academic, friend, ally, insider) for distancing ourselves or trying

30 to build relationships. These performances may differ when away from participants: researchers must inquire if they do, and, if so, why they do. AIDS Activism as Queer Methodology Given the lack of models or consensus for a queer methodology, I decided that queering methodology meant making my methods as participatory as possible and grounding them in queer experience and thought. Therefore, I turned to the Denver Principles to structure my study design and act as my guiding principles. The Denver Principles was a declaration created in 1983 through consensus by a small group of men living with AIDS at a national gay and lesbian health conference. Read at the closing session of the conference, the Denver Principles rejected victimization and asserted the rights and dignity of all people with AIDS. The document changed the way people with AIDS were talked about, led directly to the creation of the National Association of People with AIDS (NAPWA), and greatly influenced the course of AIDS activism (Wright, 2013). Although influenced by all seventeen principles, I particularly focused on: attending to the emotional side of AIDS; examining my own thoughts about AIDS (i.e., being reflexive as the researcher); treating participants as whole people; respecting their right to privacy; and trying to involve them in as many aspects of the study as possible (Wright, 2013). Although the Denver Principles offered a useful framework developed by people with AIDS, I wanted to more strongly queer my methodology and study design. I felt that AIDS activists’ use of art provided me an opportunity to more strongly ground this study in a queer sensibility. The production of artwork by people with HIV/AIDS, AIDS activists, and their allies as a method of making meaning of individual and community identities in the face of AIDS (as both disease and societal signifier) emerged as a form of resistance, counter-discourse, and education to governmental and societal indifference. Crimp (1988) insists “that art does have the power to save lives, and it is the very power that must be recognized, fostered, and supported in every way possible …we need cultural practices actively participating in the struggle against AIDS” (p. 7). Such examples include the public art installation “Let the Record Show,” which incorporated the now iconic “Silence=Death” graphic as a form of art activism (Crimp, 1988). Griffin (2000) argues that HIV/AIDS enjoyed a prominent “public visibility” for about five years due to the abundance of artistic responses to the crisis, yet a cultural vacuum of representations has followed (p. 1). Likewise, Hallas (2009) remarks that “the AIDS crisis provoked an unprecedented level of alternative media output “which has since significantly

31 declined” (p. 9). This “‘queer AIDS media’ radically reframed not only the representation of HIV/AIDS but also the mediated spaces in which they circulated” (Hallas, 2009, p. 4). In a compilation of artistic responses to HIV/AIDS, Baker (1994) explains that for “every NAMES Project AIDS Memorial Quilt or Angels in America or Philadelphia, there are literally dozens of less familiar works which address the same burning issues but which the general public seldom hears about” (p. 14). I agree with Baker (1994) that “what is needed is not a quick and easy way to judge or categorize these responses, but an approach that will allow them speak [sic] and sing their own stories” (p. 14). The best way to enact the considerations of the Denver Principles and the art-based activism of AIDS activists was through narrative and arts-based inquiry. Narrative and arts- based research challenges, in the spirit of AIDS activists, challenges the increasingly narrow and positivistic standards for educational research (Barone, 2007; Lyons, 2007). Also, arts-based inquiry and narrative inquiry are highly congruent in their concerns, ethics and goals, making their use in tandem with each other highly appealing and generative (Finley, 2005). Although AIDS activism guides my methodology, I still conducted my inquiry within certain disciplinary expectations. Being an academic product may invalidate any claims to queerness I make for this study (Weigman, 2012). But within the strictures of the academy, the blending of narrative and art does push at contemporary academic boundaries in data gathering and representation (de Mello, 2007). At the very least, I feel reassured that this project was guided by precepts developed by queers and their allies who worked to create new worlds for people living with HIV/AIDS. Narrative Inquiry Although I view my use of narrative and arts-based inquiry as closely connected—and some scholars (e.g., Barone & Eisner, 2006) consider narrative to be a form of arts-based inquiry—discussing them as separate modes of inquiry highlights important differences. Narrative inquiry involves deconstructive analysis but begins with the “premise that people live and/or understand their lives in storied forms, connecting events in the manner of a plot” (Josselson, 2011, p. 224). Individual narratives are often told in concert with “other stories that may include societies, cultures, families or other intersecting plotlines in a person’s life” (Josselson, 2011, p. 224).

Because narrative inquiry rises from a number of philosophical and methodological approaches, narrative epistemology shares much in common with queer epistemology (Connelly & Clandinin, 2006; Josselson, 2011). Among the shared assumptions between narrative and queer epistemology is that narratives are “an interpretive enterprise consisting of the joint subjectivities of researcher and participants subjected to a conceptual framework brought to bear on textual material … by the researcher” (Josselson, 2011, p. 225). Also, because “narrative research eschews methodological orthodoxy in favor of doing what is necessary to capture the lived experiences of people … in insightful ways” this form of inquiry is useful to best represent queer lives (Josselson, 2011, p. 225). Furthermore, reflexivity, like in the Denver Principles, is also an important component of narrative research. Andrews, Sclater, Squire, and Tamboukou (2004) clarify that while people tell narratives to make claims about identity, seemingly positing a coherent, unified self, the presentation of this self must be carefully scrutinized. Individuals’ narratives are not merely matters of the personal and private, but utilize—sometimes intentionally—cultural and social discourses (Andrews et al., 2004). The narratives that people share are products of interactions, and thus also subject to the discourses available and brought to bear on that interaction. Accordingly, “narrative research epistemologically respects the relativity and multiplicity of truth” that is then subject to discursive analysis (Josselson, 2011, p. 225). Narratives reveal less about the self than they do about “the relationship between narrative and the self” (Andrews et al., 2004, p. 114). Narrative research recognizes that a story is told by someone, although that person may not know everything about the story they are telling. In such accounts, narrative analysis is a kind of compromise between modernism and postmodernism. Stories change over time, and the language of stories constructs our subjectivities; but we are all, nonetheless, active and effective storytellers. In performing narratives we can create new possibilities for identities and actions (Mishler, 1986; Bruner, 1990). (Andrews et al., 2004, p. 116) In addition to being a tool of AIDS activists, narrative has been a popular research approach for those studying HIV (Andrews et al., 2004). This method applied in a participatory vein “enables people with HIV to tell their own stories, a sort of corrective to the prevailing pathologization of the HIV ‘story’” (Andrews et al., 2004, p. 116). In addition to providing an opportunity for participants to speak a counter-discourse to oppressive AIDS discourses, narrative research allows researchers to examine the “‘story’ as an important but culturally

33 variable ‘discourse,’ that is, a Foucauldian formation of meaning and power with significant but hard-to-determine effects (Parker, 1992)” (p. 116). Narrative analysis allows the story to be heard while also examining the strategies and linguistic deployments the narrator utilizes to situate himself within and possibly resist a system of power relations. But narrative is not the only way people can convey a wealth of information. They can also use a variety of artifacts: various textual forms (e.g., poetry, diaries), photographic, cinematic, and other non-textual visual means (e.g., collage, painting) (Connelly & Clandinin, 2006). In order to expand the possible modes of expression for participants and in the spirit of AIDS activism, I also used arts-based inquiry in constructing this study. Arts-based Inquiry Arts based inquiry is a “methodological and theoretical genre … situated … [in] an emerging tradition of participatory critical action research in social science” (Finley, 2005, p. 682). Researchers employing this form of inquiry “propose reinterpretation of the methods and ethics of human social research and seek to construct action-oriented processes for inquiry that are useful within the local community where the research originates” (Finley, 2005, p. 682). Despite these aims, often, researchers using arts based inquiry rely on their own artistic representations of findings, information, narratives, insights and other data from qualitative research rather than those of participants (Barone & Eisner, 2006). Arts based inquiry arose as a practice that advances an ethic of care and mutuality seeking to reconceptualize the relationship between and roles of researcher and participants (Finley, 2005). Arts based inquiry provides participants opportunities to be “collaborators or even coresearchers” (Finley, 2005, p. 682). Arts based research also seeks to open new avenues for creating knowledge: “there are varied ways in which the world can be known … broadening the range of perspectives available for constructing knowledge increases the informative value of research” (Finley, 2005, p. 685). Specifically, “a primary concern for arts-based researchers is how to make the best use of their hybrid, boundary-crossing approaches to inquiry to bring about culturally situated, political aesthetics that are responsive to social dilemmas” (Finley, 2005, p. 685). The work should “reveal what had not been noticed … promote new questions … focus tightly on … salient issues and questions, [and possess] relevance to phenomena outside of the research text” (Barone & Eisner, 2006, p. 102). The ethical goals, concerns, and criteria driving

34 and guiding arts based inquiry make it an ideal methodology for understanding how gay men with HIV construct their identities. Although scholars have devoted less attention to discussing the use of art crafted by participants as a way of constructing knowledge, I have chosen from the “explosion of … experimentation … [art] as a mode of constructing/generating knowledge” with participants (Vaughn, 2005, pp. 3-4). Having the men produce artwork stands not only to provide a new outlet for them to express themselves and their understanding of HIV/AIDS as a way of generating knowledge, but also follows in the lineage of people who re-framed and re-presented AIDS in resistance to oppressive cultural representations and messages. This methodology looks back to the type of AIDS cultural activism described by Crimp (1988) and others. Sample In order to capture a diverse demographic and to protect the confidentiality of participants and individuals potentially interested in participating, I developed a website to recruit participants nationally once I received IRB approval. The website (located at http://www.positivecollegeliving.com) introduced me, explained the purpose and design of the study, provided a list of participants’ rights, answered questions I anticipated that respondents might have, and contained links to resources on HIV/AIDS. Screenshots from the home page and FAQ of the website are viewable in Appendices C and D. A form on the website enabled interested individuals to email me without sharing personal information other than a reply email account. I contacted fourteen online websites that catered to HIV positive individuals or to gay men to inquire about advertising my website and study. Ten did not respond, and three declined; but the online magazine Poz.com donated six months of banner advertisement. Examples of my banner advertisements are located in Appendix E. Clicking on a banner ad took individuals to the front page of my website. I also advertised my study by sharing the website with colleagues and posting on non-professional social media groups (e.g., Facebook groups). I asked individuals who already knew somebody who was a gay college student with HIV to refer them to my website. In Table 1, I identify the ways participants entered my study—through referral of a colleague or through the banner advertisement. Fifteen men contacted me with legitimate interest in the study, but only nine men met the qualifications or signed consent forms.

In this way I purposefully sampled (Creswell, 2007) gay college men nationally. Although I informed participants that they could recruit others they knew to in order to conduct snowball sampling, no participant made a referral that resulted in a new contact (Creswell, 2007). Participants varied in age, racial identities, time living with HIV, and geographic region. All participant names are pseudonyms selected by the men. Table 1 provides an overview of salient participant characteristics. As evident in Table 2, national recruitment yielded participants from a variety of institutional settings (e.g., urban, rural, public, private).

Table 1 Participant Demographics Name Age Race Years Living Geographic Study Entry with HIV Location

Aiden 21 Filipino 1 West Coast Referred

Alex 24 Black & 1 East Coast Referred White

Bill 27 White 4 Midwest Online Advertising

Charles 32 White 11 Midwest Online Advertising

Daniel 44 White 19 West Coast Referred

Jason 33 White 4 Midwest Online Advertising

Josh 25 White 7 Midwest Online Advertising

Kris 22 Black 4 Southeast Referred

Tony 25 White 4 Midwest Referred

Note. All names are pseudonyms. “Years Living with HIV” indicates the length of time participants had lived with HIV from time of diagnosis to the end of interviews. “Geographic Location” reflects the location of participants during interviews. Several participants had lived in multiple locations during their lifetime.

Table 2 Participant Major, Degree, and Institution Type Name Major Degree Institution Type

Aiden Business Management B.A. Public, Research

Alex Fashion Retail & Marketing B.A. For-Profit

Bill Business Management B.A. Private, Religious

Charles Psychology & Sociology B.A. Public, Four Year

Daniel Social Work M.S. Public, Research

Jason Nursing R.N. Community (prerequisites) College

Josh Nursing Associates Community College

Kris Sociology B.A. Public, Four Year

Tony Gerontology M.S. Public, Four Year

Note. Degree and Institute Type reflect participants’ enrollment at the beginning of interviews. Several participants attended other institutions while being HIV positive.

Table 3 Interview Hours and Number of Interview Sessions Name Hours Interviewed Number of Sessions

Aiden 9.2 8

Alex 6.7 5

Bill 10.3 8

Charles 2.2 2

Daniel 8.3 8

Jason 5.1 6

Josh 7.1 7

Kris 10.5 7

Tony 2.4 2

Total 61.6 53

Note. Numbers rounded to nearest tenth. Total reflects the sum of non-rounded numbers

Methods Given the complexity and sensitive nature of this topic, I needed multiple in-depth interview sessions with participants. Conducting multiple sessions facilitated establishing rapport and trust; attending to participant fatigue; allowing flexibility to end or slow the pace of sessions when participants became emotional; and providing time for all parties to reflect between sessions (Grinyer & Thomas, 2012). Charmaz (1991) utilized this approach in studying adults with chronic illness to build trust and to talk with participants at various stages of health and illness. Johnson and Rowlands (2012) cite a number of scholars’ recommendations for in- depth interviewing, or interviews that “commonly seek ‘deep’ information and knowledge … [and often] concerns personal matters” (p. 100). Recommendations range upward to eight one- hour sessions or, less clearly, until “theoretical saturation” is achieved or until “the interviewer feels that he or she has learned all there is to be learned” (Johnson & Rowlands, 2012, p. 108). I initially asked participants if they were willing to meet for six to eight one-hour sessions. They all agreed to this, and I assured them that we would continue negotiation of their involvement throughout our time together. Each session’s agenda (e.g., amount of structure, focus) and time limit was negotiated on an on-going basis with participants based on the needs of the study and the needs and interests of the participants. Although I introduced participants to the idea of making artwork during the consent process, we did not discuss the project in depth until after several sessions, once trust and rapport was sufficiently established. Narrative Sessions Narrative sessions consisted of five to eight interview sessions ranging from a little over 30 minutes to over two hours—although typically they lasted around an hour. Two participants completed two interview sessions, and the remaining seven completed six to eight sessions. Table 3 specifies the amount of time spent with each participant and in total. Because queer methodology rejects the “possibility of obtaining [an] objective reality,” traditional qualitative methods, including the interview, must be reconsidered (Kong, Mahoney, and Plummer, 2002, p. 244). Queering the interview meant creating a structure that emphasized participants’ full lives and experiences, not just HIV. Also the interview structure needed to be as flexible as possible to accommodate the interests of participants. I utilized a modification of McAdam’s (1995, 2008) life story interview protocol. The life story protocol asks participants to discuss their entire life story and significant events, people, and experiences during their life

40 course. I used the protocol over the course of approximately four to six sessions but also encouraged participants to direct the conversation however they wished. The decision to ask participants about their entire life span rather than confining questions to the context of attending college and inviting participants to deviate from the interview protocol reflected an effort to queer more standard interview protocols. It reflects a queer epistemological understanding of how multiple social and institutional discourses impact subject formation, as well as a queer ethical commitment to providing as much flexibility and freedom for participants to shape their story as they wished and to talk about those topics most concerning to them. Some participants took advantage of this more than others. Throughout the entirety of our time together, I encouraged participants to subvert the interview protocol and my agenda. However, most participants seemed to prefer the structure of the interview protocol. Often, I asked them follow-up questions that took us away from the question format; freedom in following whatever train of thought seemed important at the time was a paramount consideration. If we ran out of time with the agenda for that session, we merely continued it to the next. After the life story protocol was exhausted, two to three sessions were devoted to asking participants specifically about their experiences while HIV positive. Our final session for those who did artwork focused mainly on the individual explaining how they understood their work, how they composed it, and bringing closure to our interviews. The interview question guides for all these sessions are located in Appendix B. Their stories provide context for what the participant finds important and to understand the forms of discourse the participant uses to talk about himself. From a Foucaldian perspective, the nature of discourse is important to understand how the participant constitutes himself within societal discursive practices: “Foucault views discourse as socially reflexive, both constitutive and meaningfully descriptive of the world and its subjects” (Holstein & Gubrium, 2005, p. 490). Being interested “in the way in which the subject constitutes himself in an active fashion, by the practices of the self, these practices are nevertheless not something that the individual invents by himself” (Foucault in Holstein & Gubrium, 2005, p. 490). Those practices are found “in his culture and which are proposed, suggested, and imposed on him by his culture, his society and his social group” (Foucault in Holstein & Gubrium, 2005, p. 490). Examining the discourse participants employ may shed light on what societal institutions inform how they construct their identity.

Art-Based Sessions Theatricality, provocative and stunningly memorable graphics, and alternative video productions were some of the artistic methods of resistance employed by AIDS activists. All of these forms served to represent the lives of people with AIDS, to incite and provoke political, religious, and medical action, and to create new forms of meaning and knowledge to contest dominant representations of HIV/AIDS. Since artwork is both a mode of knowing and resisting in AIDS—and queer—activism, I incorporated artwork as a method of data collecting. Richardson’s (2002) assertion that “poetic representation is a viable method for seeing beyond social scientific conventions and discursive practices” opens up the possibility that art is a viable way of expressing and constructing knowledge in the academy as well as in activism (p. 877). Art-based inquiry enhances the ability for participants to express themselves, as the limits of language and other barriers pose obstacles for narrative inquiry (Van Schalkwyk, 2010). After five to six interview sessions, having built trust and rapport with the men, I asked them to create artwork in whatever form they preferred (that could be replicated on paper) to express their relationship to HIV/AIDS. The art also serves as the most direct—least edited and mediated— representation of participants available for this study. After our penultimate interview, participants generally elected to take two to three weeks to construct their art. Once they finished, we scheduled our final interview which primarily consisted of them interpreting their work to me and discussing any artwork that had influenced their understanding of HIV/AIDS. Data Analysis My method of analysis shares more ground with literary textual analysis than it does with traditional, objectivistic scientism, but shares much with Lather’s (2008) reconceptualization of science that deals with postmodern understandings and critiques of knowledge. In brief, Lather (2007) is interested in a science that brings “attention to the paradoxes that structure our work” (p. 77). My methods enable an analysis and representation of subjectivity through narrative and art that allow participants to express a range of thought and emotion, from those who embrace a hopeful future to those who doubt its ability to manifest to those who wish for it despite their better instincts. Participants provided narratives through dialogue and through visual representations. I analyzed their only their verbal stories and refused to analyze their artwork. The artwork stands as reminders of participants’ perspectives over my own. I placed the artwork in the middle of my

42 analysis to interrupt my own voice and to introduce sensations, feelings, and experience not reducible to language and rationality. From a social science perspective, no definitive method exists on how to conduct a queer analysis other than the process of deconstruction—“the illustration of the implicit underpinnings of a particular binary opposition” (Namaste, 1996, p. 198)—and sometimes “close reading,” an analysis of text as object, a “[way] to navigate these texts within the text themselves, a pursuit of footholds through a kind of geographic microscopy” (Lockett, 2010, p. 400). Therefore, I rely primarily on narrative analysis to construct narratives, and analyze them using methods derived from Josselson (2011) and Hole (2007), and informed by the work of Foucault (1998), Halperin (2012), and Lather (2007). Given the close relationship between queer theory and the reading of texts, I provide an overview of various recommendations for narrative analysis, concluding with researchers who have dealt with poststructural narrative research previously. The analysis I employ involves both a construction of individual participants’ narratives as well as an analysis of the discourses and rhetorical strategies participants employ. This form of analysis is both constructive and deconstructive. Constructing the Narrative I favor Barone’s (2007) use of narrative construction over narrative analysis to describe the process of building participants’ narratives, given the researcher’s extensive discretionary and editorial power. The construction of narrative is a deeply subjective and personal process; Butler-Kisber (2010) observed that researchers will construct different narratives even if they are using the same method. The method of narrative construction involves considering the elements of “character, place, scene, plot, tension, end point, narrator, context, and tone” (Clandinin & Connelly, 2000, p. 131). However, this is not a clearly defined process because lives do not follow narrative conventions (Clandinin & Connelly, 2000). Rather, narrative construction is a constant, ongoing process. Whatever process is employed, part of the quality of such work is transparency about the method. Josselson (2011) provides a useful framework that works with a poststructural perspective that guided my thinking about constructing narratives. Narrative construction and analysis are conducted together in “a hermeneutics of faith, which aims to restore meaning to a text, and a hermeneutics of suspicion, which attempts to decode meanings that are disguised (Josselson, 2004)” (Josselson, 2011, p. 226). In constructing the narrative, the researcher “may

43 both re-present the participant’s narrative and also take interpretive authority for going beyond, in carefully documented ways, its literal and conscious meanings (Chase, 1996; Hollway & Jefferson, 2000)” (Josselson, 2011, p. 226). The process of constructing narratives involves “piecing together data, making the invisible apparent, deciding what is significant and insignificant, and linking seemingly unrelated facets of experience together” (Josselson, 2011, p. 227). This iterative process moves between a sense of the whole and the parts in relation to the whole to, in brief, achieve a “good Gestalt that encompasses contradictions” (Josselson, 2011, p. 228). Although Creswell (2007) finds commonality between narrative construction approaches in the way they rewrite stories chronologically, I queered this typical practice. Instead I considered non-chronological framings of participants’ stories, ordering them thematically, affectively or impressionistically rather than in a realist style (Reissman, 2008; Van Maanen, 2011). I made such decision based on various considerations—the way participants told them, find them salient, or if the representation provides a more aesthetic or affective experience—to better represent queer lives. One of my interests here is to present a compelling picture and resist heteronormative conventions of storytelling (e.g., everyone marries and lives happily ever after) while still providing a recounting of participants’ stories that they feel accurately represents their lives. Participants had the opportunity to provide feedback regarding how my construction of their narrative. All seven of my persisting participants approved their narrative; only Daniel made any changes. “Member checking,” as this process is often called in social science, is suspect from a poststructuralist perspective as capable of providing validity to the research process, but serves as an ethical imperative for me (Abes, 2009; Lather, 2007). I understand these stories as products of my particular interaction(s) with participants, and representative only of a version of their story produced within the research relationship that may (and likely would) be different in another context, time, set of prompts/questions, relationship, etc. Nonetheless I constructed them to convey, as much as possible, the experiences and perspectives of the participants as they recounted them to me. This is part of my project to create an archive of narratives of HIV positive college students.

Analyzing the Narrative From a poststructuralist perspective, analytic procedures like coding are problematic, given the decontextualized and quasi-positivistic nature of coding (Scheurich, 1997). Creswell (2007) summarizes postmodern narrative analysis as “a deconstruction of the stories, an unmaking of them by such analytic strategies as exposing dichotomies, examining silences, and attending to disruptions and contradictions” (p. 56). Butler-Kisber (2010) asserts that narrative analysis uses “broad ‘brush strokes’ (Bodgan & Biklen, 1992)” compared to more inductive methods like the constant-comparitive method (Butler-Kisber, 2010, p. 69). Josselson (2011) describes poststructural narrative analysis as sharing commonalities with discourse analysis, but differing in its analysis of “the whole account rather than … discursive units or thematic categories” (p. 226). Although “no dogma or orthodoxy” exists for this kind of analysis, Josselson (2011) recommends an iterative process that moves between a sense of the whole and the parts in relation to the whole. This process incorporates narrative construction with narrative analysis: 1) get a sense of the general theme(s) and structure, then examine specific parts, then reconsider the larger meaning in light of the parts; 2) identify different “‘voices’ of the self” and “create a view of how these selves are in dialogue with one another; 3) continue readings until a “good Gestalt” is achieved—“sensible patterns” of themes that “encompasses contradictions”; 4) place the work in conversation with the theoretical literature (Josselson, 2011, p. 228). With Josselson’s (2011) principles guiding my analytical approach, I decided to employ a four-staged process originally used to conduct a poststructuralist analysis of women who identified as culturally Deaf (Hole, 2007). These four stages include: analyzing for content; locating the position of the “self/selves” of the narrators, reading for the research questions; and reading for cultural discourses (Hole, 2007, pp. 265-266). This analytical process resulted in narrative summaries for each participant that I read across looking for similarities, intertextual meanings, and relationships while also considering each narrative as a separate text. Representation My conceptualization of data representation draws inspiration from Lather and Smithies (1997) ethnography of women living with HIV, Troubling the Angels. Lather and Smithies use a variety of textual and visual layouts to produce a dizzying effect that disrupts, emphasizes, interrupts, and calls the reader’s attention to a wide array of materials. The format calls attention

45 to itself as a performance, as a piece of media, suspending notions about the reader having total access to these women’s experiences while still honoring their lives. Lather (2007) explains her overriding concern in this work: My definition of justice [to these women’s stories] became enacting deconstruction in a way that didn’t shut the women out from reading their own stories! I mean, surely whatever doing justice to their stories was, it meant they had to be able to read and understand their own stories—that was pretty clear. (p. 28) Clandinin and Rosiek (2007) suggest that “some form of polyphonic representation may be needed to honor both” the experience of participants and to not “abandon” poststructuralist theorizing (p. 67). This is what Troubling the Angels successfully achieves. Inspired by Lather and Smithies (1997), I try to hold true to both a representation of the men that they can recognize and to a queer critique. In their narratives, I try to favor direct (albeit often edited) quotes to tell their stories. I have member checked those stories with all the men; seven responded with their approval. Flouting academic convention, I queer the academic text by interrupting my analysis with participant’s artwork. Furthermore, I avoid analysis of their artwork, preferring to let their art communicate on their behalf without my intrusion. I also include participants’ often conflicting recommendations in my final chapter along mine and give them the final word. Participants were invited to read my analysis and discussion and offer their own feedback; unfortunately, but understandably, while several expressed interest, none provided feedback by the time of publication. Goodness Criteria / Validity In qualitative research, validity is something of “an irritating construct” that has resulted in researchers running both away and towards quantitative standards (Lincoln, Lynham, & Guba, 2011, p. 120). Researchers who have attempted to moved away from positivism and quantitative validity measures have utilized a number of alternative terms (Creswell, 2007). Yet, despite the language used, many of these constructs are still grounded in researchers’ investment in an ontological reality that can be confirmed or “authentically” reported. Poststructuralists in turn challenge the degree to which people can access or represent their experiences authentically. And because poststructuralists question for whom findings are transferrable or dependable, they pose formidable obstacles to determining goodness criteria of any kind.

Smith and Deemer (2000) enumerate the problems that relativism brings to the establishment of establishing goodness criteria. Yet they still assert that relativism does not equal “anything goes” and that judgments can, and, given the finite human condition, must necessarily be made. Even without any objective standards that stand outside of discourse, “we are [not] exempt from engaging in as open and unconstrained dialogue as possible in order to attempt to justify our assessments” (Smith & Deemer, 2000, p. 885). This is a crucial key in understanding goodness or validity from a poststructural perspective. Validity, poststructurally, becomes not about foreclosing meaning, but rather about opening it. Validity also becomes an ethical as much as, if not more so, an epistemological issue; yet even the rationality of ethics must give way to more affective or aesthetic considerations: “When we make judgments we more or less can specify some of the reasons, but other things seem to be out there—there is surplus that seems to stand just beyond our grasp” (Smith & Deemer, 2000, p. 889). Validity as aesthetic experience. Part of the ethical conundrum of validity is understanding that “anything we write must always and inevitably leave silences, that to speak at all must always and inevitably be to speak for the someone else” (Smith & Deemer, 2000, p. 891). Invariably, researchers will fail to be able to do full justice to participants or to overcome our own blinders and lenses. As a result, reflexivity and locating our own position and power relative to participants is a necessity (as difficult and problematic as that is). But considering validity as an aesthetic practice means conducting a study that results in others filling the silence I as a researcher invariably create: “in the arts, symbols adumbrate; they do not denote. When they adumbrate something important happens—people begin to notice. What they notice can become, and often becomes, a source of debate and deliberation” (Barone & Eisner, 2012, pp. 2-3). Reissman (2008) believes that good researcher should “move us or get us to think differently about a phenomenon” (p. 192). She does note, however, that academics typically want more than an affective or aesthetic response to scholarly work to establish its goodness or validity. She encourages careful documentation of the entire process of data collection and analysis to help persuade such audiences. A reasonable goodness criterion for this study, therefore, is that it should suggest and open up possibilities and multiple interpretations rather than suggesting any definitive answer. Other aesthetic criteria in narrative and arts-based inquiry will prove helpful in establishing other validity criteria.

Wakefulness and verisimilitude. Many narrative scholars believe that accuracy of the narrative constitutes a necessary standard of goodness (Butler-Kisber, 2010). My claims to accuracy end to the point where participants consider their narratives accurate representations of their stories. Yet my narrative analysis involves making “obvious the connections between political forces and individual lives, connections not always immediately obvious to those whose stories are being told” (Barone, 2007, p. 457). Clandinin and Connelly (2000) use the term “wakefulness” to describe a researcher’s critical awareness of the ellipses, elisions and omissions in the narratives (p. 182). They recommend that “narrative inquirers help their readers by self-consciously discussing the selections made, the possible alternative stories, and other limitations” (Clandinin & Connelly, 2000, p. 182). In this study, I have worked to be transparent in how I have constructed narratives and to present the narratives in such a way that they are impressionistic more than a coherent, linear tales (Butler-Kisber, 2010). Reissman (2008) perfectly describes my aims in presenting participants’ narratives: One could make an analogy to art: when evaluating the depiction of a landscape, viewers ask not whether it looks like the place, but whether it evokes the appearance of a place (verisimilitude). Put differently, a painting or poem does not depict a “reality” but constitutes one. (pp. 192-193) In/coherence as quality. Stories often strive to present a coherent picture, but lack of coherence Riessman (2008) makes a case for incoherence as an equally valid criteria. Although lack of coherence stands to impact the validity of the research in the eyes of readers, Riessman (2008) nonetheless advocates for a complex approach: “Instead of trying to find coherence and factuality in individuals’ stories, investigators might search for coexistent realities—selves and communities that are pulling together and pulling apart at the same time” (p. 191). I find this conceptualization, which I call in/coherence, an intriguing type of goodness criteria. In/coherence relates to the criterion of verisimilitude and wakefulness in striving to represent participants’ lives in the complex, sometimes contradictory ways they are lived. In/coherence affirms that the story told is one iteration of that story and that it intersects with many other stories. In/coherence holds that stories sometimes don’t make sense or the parts of peoples’ lives sometimes cannot be assembled into a cohesive tale.

Accessing hidden dimensions of life. Another relevant aesthetic quality to this project is the degree to which art “alter[s] our understanding of identity” or “influences group identity” (Leavy, 2009, p. 226). This is similar to Reissman’s (2008) criteria for work to move us and cause us to think differently. Leavy (2009) believes that good art provides “access [to] hidden dimensions of social life” (p. 228). Given Leavy’s (2009) interest in using art to link individual experience with societal power dynamics, I interpret “hidden dimensions” to mean illumination of the lives of people typically erased or made invisible in society and to mean the degree in which it offers participants the opportunity to express what, for them, had been previously inexpressible. This is similar to several of Denzin’s (2000) criteria for assessing critical aesthetic work, namely: Claims to truth and knowledge are assessed in terms of multiple criteria, including asking if a text (a) interrogates existing cultural, sexist, and racial stereotypes, especially those connected to family, femininity, masculinity, marriage, and intimacy (Neal, 1998, p. 1457); (b) gives primacy to concrete lived experience; [and] (c) uses dialogue and an ethics of personal responsibility, values beauty, spirituality, and a love of others. (p. 258) In brief, “accessing hidden dimensions of social life” does not mean purporting to de-mystify some exotic subculture or population, but rather consider the dynamics of power that bear upon people whose lives are not given dignity or recognition. Queer science? Queer art? Finley (2003) advocates that those conducting arts-based research should be careful to separate their project from science—arts-based inquiry does not aspire nor claim to be science— and stake its own ground. She also suggests that arts-based inquiry may differ sufficiently from art to not be subject to evaluation as art. Therefore, standards of quality from science or art do not apply and, instead, researchers should focus on methodology rather than the final product (Finley, 2003). In doing queer science, I straddle lines of art and science. Yet, I also work within queer political ethics—therefore, the goodness criteria I propose here are those that I see aligned with queer and AIDS politics. If queer is “that which disrupts the norm, disarticulate its representations and finds new, shifting and unstable ways to imagine how these disruptions and disarticulations fit together,” then I propose that queer validity is that which disrupts the norm and centers new, queer representations (Detamore, 2010, p. 172). Queer validity, like arts-based validity, favors the unstable to open up many possible meanings.

Validity in a queer project distinguishes itself from the liberal gay project. Queer research can “grow out of the destablisation [sic] of liberal assumptions about modernity, seeking to find and cultivate queer practices both within and on the fringes of mainstream culture and politics” (Detamore, 2010, p. 173). Therefore, particularly in constructing narratives and in my analysis, I have consciously attended to not replicating “mainstreaming” or rehabilitative practice tendencies of modern gay and lesbian ideology. Rather than seeking to incorporate queers into a potentially forever heteronormative world (Halperin, 2012), I have sought to distinguish between harmful and beneficial norms and push norms harmful to gay men with HIV/AIDS to the margins (Weigman, 2012). The politics of intimacy. Many scholars who discuss validity, particularly as an ethical endeavor, discuss the need for attending to the relational aspect of the research, although they often stop short of saying what that might entail other than being ethical with participants. Yet queer people have historically been known for configuring new kinds of relationships between each other as normative forms of relationship failed them or rejected them in various ways. Such non-standard relationships were crucial during the AIDS crisis. Queer validity involves setting up new and different forms of connection between researchers and participants. Freeman (2007) argues for the need to recognize “the process by which small-scale relationships become thinkable, meaningful, and/or the basis for larger social formations … are of crucial interest to queers” (p. 297). She elaborates: Kinship ‘matters’ in the way that bodies ‘matter’: it may be produced or constructed, but is no less urgent or tangible for that. And if kinship is anything at all-if it marks a terrain that cannot be fully subsumed by other institutions such as religion, politics, or economics—this terrain lies in its status as a set of representational and practical strategies for accommodating all the possible ways one human being’s body can be vulnerable and hence dependent upon that of another, and for mobilizing all the possible resources one body has for taking care of another. (Freeman, 2007, p. 298) Therefore, in this study I rethink the participant /researcher relationship in terms of people who are taking care of each other. Detamore (2010) refers to “a ‘politics of intimacy’ as an outcome and progenitor of research becomes a queer project in its disruption of normative considerations for research relationships, while challenging the conventional regimes of

50 oversight for research methods” (pp. 173-174). I enact an ethical politics of intimacy/caring through participatory research methods, sustained engagement with participants, involving participants in the construction of narratives, juxtaposing their art and thoughts with mine, visually and textually, and making space for their “right to analyze, contest, and reframe a researcher’s findings” (Tierney & Rhoads 1993, p. 328). Although participants may have difficulty in recognizing marginalizing discourses, making sure participants get a chance to respond to the study stands as an ethical obligation of the politics of intimacy (Abes, 2009). Accordingly, narratives were provided to the participants to modify, correct, delete or clarify their statements or the information shared. Results and findings of the study were also presented to participants to permit them an opportunity to bring their own interpretation to the analysis and discussion. Summary of goodness criteria. Many of the criteria I pluck from the narrative and arts-based sub-communities of research are marginal or deviant relative to normative, traditional, and empirical views of science (even social science) and often relative to modern qualitative research. Queer theory and AIDS activism further inflect my understanding of valid research practice. My foundational understanding of goodness is that relates both to ethics and aesthetics. That is, goodness involves treating participants ethically, representing them ethically, and being ethical in the production and process of my work. Goodness also is relative to the affective or aesthetic merit of the work: to what extent does it impact or “stir” the reader. Based on these underlying principles, I approached this study following these goodness (i.e., validity) criteria: 1. A high degree of reflexivity and locating myself within the power dynamics of both the research project and society. 2. Adumbration— creating an aesthetic experience that suggests and sketches possible meanings and interpretations rather than seeking definitive or clear answers. 3. Wakefulness—presenting complex and rich stories, paying attention to and drawing the reader’s attention to the process in which narratives are construction and other possible alternative stories. 4. In/coherence—crafting narratives so that they resonate with readers and participants, but that don’t reify Western modernist notions of linear progress stories. In/coherence presents life as coherent and incoherent, sometimes cohesive, and sometimes partial and fractured.

5. The work should make us think differently about the world or a phenomenon. 6. The work should “access hidden dimensions of social life” without seeking to assimilate or normalize queer lives or bodies. The work should access that which is normally erased or rendered invisible or unknowable and resist the modern liberal project to incorporate queer lives into heteronormative frames. 7. Normal should be pushed to the margins and queerness centered and foregrounded. 8. Good queer research should traffic in a politics of intimacy—seeks to follow in the queer tradition of establishing new or different forms of kinships and relationships that are concerned with mutual care. An aspect of this is: participants should see themselves in the stories presented (Lather, 2007). To conclude, I turn to Lather (2007), who “continue[s] [her] seeming obsession with the topic of validity: the conditions of the legitimation of knowledge in contemporary postpostivism” (p. 118). Lather (2007) holds on to the term validity, even in the wake of poststructuralism, but does so only to “rupture validity as a regime of truth” (p. 118). Rather than try to rearticulate validity through postmodern language, as others have attempted, she believes that poststructural validity “requires the invention of counter-discourse/practices of legitimation” (Lather, 2007, p. 119). She asserts that the “ability to establish and maintain an acceptable dialogue with readers about the construction of reality involves making decisions about which discursive policy to follow, which ‘regime of truth’ to locate one’s work within, which mask of methodology to assume” is the basis on which to establish poststructural validity (Lather, 2007, p. 120). Upon doing so, legitimacy “depends on a researcher’s ability to explore the resources of different contemporary inquiry problematics, …[and perhaps free up space] for new forms of thought and practice” (p. 120). Additional Ethical Considerations Tierney and Rhoads (1993) assert, “One key purpose of research…is to create the conditions where the participants gain self-understanding and empowerment” (p. 329). Abes (2009) suggests that sharing her queer theoretical interpretation was potentially liberating for her student participant. This study sought to reciprocate to participants by providing someone who cared to listen non-judgmentally in addition to formulating narratives and analysis that counterbalances stigmatizing messages they encounter. Ideally, the opportunity they had to disclose to a genuinely interested and supportive individual (i.e., me) provided a level of

52 beneficial reciprocity. As mentioned previously, I shared my analysis of participants’ narratives and solicited their perspective about my interpretation (Abes, 2009). In addition to the various ethical concerns of representation, another substantial ethical concern existed. At times, telling their stories and answering my questions caused some of the men to cry or feel depressed. Also, fatigue and irritation sometimes set in. In these cases, I made sure to pause and check in on their emotional state. I always offered the men the opportunity to end the session early, to take their time, or reminded them that they didn’t have to answer anything they didn’t want to answer. And when they were particularly candid, I reminded them that they could always retract that information from transcripts. They almost always decided to continue. Although none of the men reached a point where I felt professional help was needed, I was prepared to contact officials in their local area to intervene if necessary. Since the end of the study, a few of the men have mentioned to me that they did appreciate the opportunity to reflect in new ways on living with HIV. I sincerely hope they find that whatever benefit they gained from my interest in their lives and the information generated from this story matches any discomfort or sadness they felt. On Reflexivity and Discontent, or “Why Do You Want to Study That?” “Why do you want to study that?” my sister asked curiously when I told her I was going to be conducting research about college men who were HIV positive. She seemed cautious and hesitant rather than disgusted or incredulous. I understood her phrasing as a way to ask and not ask simultaneously what she really wanted to know: “Are you HIV positive?” One eye open, one eye squinting, her head tilted away from me, she seemed like she was preparing to receive a glancing blow. As Butler (1997) states, “We imply that our bodies are injured by speech. And they surely are. … Just as physical injury implicates the psyche, so psychic injury effects the bodily doxa” (p. 159). Had I answered, “Because I’m also HIV positive,” the very structure of our lives could have changed. I was not surprised by the question because our social order bonds HIV to gay men; gay men are always under suspicion of having HIV. And, in a culture that silences bodies with HIV, to inquire about such bodies suggests a kind of perversity: what could have possibly raised your awareness of such men? Surely, only the contamination of HIV could have made you aware of them, and, if not, then what kind of perverted activities brought you into asking questions about them (was it that most perverse of institutions, the liberal academy)?

And, certainly, my sister is not alone in wondering about this question. The demands of reflexivity seem to require it of me: what is your positionality in regards to those with HIV? What kind of privilege do you have? What do you share with these men? Reflexivity is a response to past iterations of research that supposed an objective, detached scientist, represented by absence in the research text. Reflexive practice seeks to locate the researcher’s social location and the researcher’s privilege and subjectivity. Yet such requirements smack of essentialism and the confessional. Reflexivity suggests that by revealing social identities and enunciating my epistemological stance sufficiently, I might reveal some fundamental truth about myself that will presumably mark me sufficiently authentic or fraudulent in some way. Foucault (1999) observes, To declare aloud and intelligibly the truth about oneself—I mean, to confess—has in the Western world been considered for a long time either a condition for redemption for one’s sins or as an essential item in the condemnation of the guilty. (p. 159) Lather (2007) shares my suspicion of reflexivity—“every word is also a hiding place, an apparent nakedness is but a mask that conceals a will to power” (p. 17). Lather (2007) explains the impasse between reflexive research and poststructuralism: “Reflexive ethnography authorizes itself by confronting its own processes of interpretation as some sort of cure toward better knowing, while deconstruction approaches ‘knowing through not knowing’” (p. 17). Lather (2007) asserts the need to “not get too enamored with reflexivity” (p. 30). Yet I am compelled by those who share Johnson’s (2005) perspective that critical and queer work “requires an acknowledgment by the critic of her or his position within an oppressive system. … A critic cannot ethically and responsibly speak from a privileged place … and not own up to that privilege” (p. 135). Although naming my various identities has ethical merit, it risks essentializing and universalizing those identities. As I note that I am a White gay-identified man, how many other identities do I need to make known about myself? I am not being glib here: I seriously contest how much identities reveal about my positionality. These identities do inform how I make sense of the world, but they seem relevant only in relation to who my participants are. Who-I-am-in- relation seems much more of a useful thing to know. Perhaps my most important identity is: a researcher whose voyeuristic activities have been authorized by the academy. This gives me enormous power in the representation of these men that perhaps no other identity provides.

(Although certainly some of those identities gave me access to a Ph.D program.) And again I slide by the question of serostatus. I consider it more important to establish my epistemological disposition and my investment in this research rather than recite identities whose meanings depend on particular referents. Although this project invests in poststructuralist theory, I still lack adequate language for describing my epistemological orientation. Foucault resisted naming his epistemic positionality (Martin, 1988), but I am no Foucault, so I best try to name my positioning. I therefore call myself a post-narrativist. Although narrative is not typically conceived of an epistemological stance, many of the forms of narrative inquiry embrace an interest in human lived experience while accommodating a poststructuralist perspective. Clandinin and Rosiek (2007) capture this sentiment nicely: Consequently, post-structuralists who find themselves in the borderlands with narrative inquiry often arrive there less because they consider the people’s stories sources of new knowledge about social reality and more because they are attracted to the productive power of stories. They are looking for a way to move beyond description of the formal qualities of social discourses to transformative intervention but need a mode of intervention that is not totalizing. (p. 65) I want my experience and my theory too. I don’t want to sanctify either as more important. I find value and power in both. We cannot honor and value people by theorizing them away nor can we unflinchingly accept all accounts of experience: “For the narrative inquirer, a person’s experience must be listened to on its own terms first, without the presumption of deficit or flaw, and critique needs to be motivated by the problematic elements within that experience.” (Clandinin & Rosiek, 2007, p. 50) So why do I want to study this? The easy (and partially true) answer is because of a (bad) documentary. In the sensationalistic documentary The Gift, a young gay man named Doug Hitzel, recently diagnosed with HIV, sobs into the camera: Going to college. And everyone is buzzing along. I don’t want to get tired so fast. I find myself holding back making friends. … It’s hard for them to understand. … And I don’t just want to risk them not understanding. (Hogarth, 2003) Although the movie presents a very simplistic and naïve view of Doug, his confessional video struck a chord with me. I wondered what the experience of other gay men with HIV was while

55 attending college. There is another reason, more personal and intimate that I choose not to share—I prefer to let the signifier of AIDS float around my signifier of gay man—and let the reader decide how they connect (if they do) those two. The Days of Disenchantment: On Political Desire “These are the days of disenchantment, of questions that cut to the bone about what it means to do empirical work in the human sciences” (Lather, 1991, p. 102). My intent in this study is not to constitute a new subject or unitary identity (i.e., the gay male college student with AIDS), although invariably this could be the result of this study, no matter how hard I resist such a formulation. Wiegman (2012) asserts, “It is impossible not to traffic in the reproduction of identity from within the auspices of identity knowledges, no matter how resolutely one may be moved by their traditions of anti-identity critique” (p. 113). Yet, Lather (1991) sees possibility inherent in the constructive/deconstructive bind: To both confirm and complicate received codes is to see how language is inextricably bound to the social and ideological. … Such a paradoxical doubledness can help to begin to sketch out what the ‘not yet’ is in our movement away from the “no longer.” (p. 89) Halley (2000) asserts the necessity of understanding the usefulness and limitations of identity and identity critique politics; they allow and disallow certain modes of thinking and recourse. The intent of this study is not to know the gay collegiate male with HIV/AIDS, but rather to archive the narratives and art of these men, to represent their experiences (which may or may not represent those of other college students with HIV/AIDS), and to analyze the narratives they produce, ideally in cooperation with them. Hopefully, my interpretations of their narratives have generated insight that stimulates thought, more questions, and action without resulting in some representational figure from which others may claim to know anything certain about students on their campuses who are HIV positive. My intention since the inception of this inquiry has always been to produce an anti- phobic study of HIV positive gay men’s. To declare my study “anti-phobic” is to declare that that I hope the end results combats, in some way, the immense amount of stigma and contempt directed at men (and all people) with HIV. I do not see HIV/AIDS as a judgment on any person or community, or as a call for gay men to “clean up” their lives and perform “maturity” and adopt heteronormative behaviors (Pendleton, 1996). But anti-phobic does not mean that I have muted the disquieting aspects of their lives. I provide no assurances of happy endings (Love

2007/2008). Their narratives do not obscure, elide, or omit information that might be unflattering or troubling. Anti-phobic means that nobody deserves HIV/AIDS. Nonetheless, despite my best efforts, Edelman (1994) warns that “any discourse on ‘AIDS’ must inscribe itself in a volatile and uncontrollable field of metaphoric contention in which its language will necessarily find itself at once appropriating ‘AIDS’ for its own tendentious purposes and becoming subject to appropriation by the contradictory logic of homophobic ideology” (p. 92). In other words, one cannot guarantee that even the most anti- homophobic and anti-AIDS phobic inquiry may not be able to withstand being used against its aims and purposes. This study contains plenty that can be misused, de-contextualized and misappropriated for a variety of aims that I neither intend nor endorse. Attempting a project that brings the HIV positive subject into authorized spaces like the university risks trying to normalize the person, to try and perform a type of rehabilitation to him (McRuer, 2006). McRuer (2006) asserts that merely speaking of such individuals from this kind of sanctioned space is to “inescapably mediate and (partially) rehabilitate him” (p. 132). For McRuer (2006), rehabilitation is an effort to make ill bodies perform as able, to fulfill the normative imperative to be able to function as a fully functioning, productive citizen. However, I have proceeded at risk of this critique. I am not interested in making these student able to perform the functions of a student to serve the interest of the academy or industry (by producing a more skilled workforce), but I am interested in thinking about what kind of change is needed to help create better institutions of higher education and society, more largely, for them. Wiegman (2012) asks, How many times, after all, have we read that this critical practice (always the one we are engaged in) is no mere intellectual exercise but a transformative critique that can expose, resist, or undo the normativities, violences, injustices within which and against we speak? (p. 80) I do not know, but I suspect here is one more. I am not assured that anything will be transformed through this work, but obviously that is my desire. I realize the insufficiency of anything I could do to produce radical transformation, but I believe that this research has the potential to be constructive in thinking about students who are almost never thought about in the university. Although written about sex education in public schools during the early AIDS epidemic, Britzman’s (1998a) claim that “we also might consider the possibility that knowledge itself is

57 insufficient because of our time in the pandemic known as AIDS” holds true today (p. 72). I must confront the reality that knowledge may be, and likely is not, enough. Although the cultural, medical and political landscape has changed since Britzman wrote that statement, “our time in the pandemic” continues. The national indifference and contempt displayed toward the deaths and plight of thousands with AIDS has forever confounded and rendered dubious the ability to be certain of anything, even in a post-antiretroval world. Even should AIDS be cured, the pandemic has forever ruptured confidence in the stability of knowing, particularly for queers. Even if we could know, Britzman (1998a) makes clear, “knowledge of ‘facts’ does not provide a direct line to the real, to the truth, and to righteous conduct. As a discourse of knowledge, ‘information’ cannot account for things such as affective investments” (p. 87). To learn and know about AIDS presents a psychic threat to the self: We can begin to see that AIDS education makes difficult demands on the ego, demands that ask the ego to let go of its defenses, be touched by that which puts it in danger, obligate itself to change its conceptual and affective work, attempt to acknowledge a thought in excess of itself. (Britzman, 1998b, p. 328) I cannot be sure that university administrators, faculty, or fellow students will respond well to knowing that students with HIV walk among them, even in the face of anti-phobic education and information. To simply ask for HIV positive students to be included in the institution comes with its own problem: “the result of pushing for inclusion can and often does “produce the very exclusions they are meant to cure” (Britzman, 1998a, p. 86). I quote Britzman at length given how well she reflects the enormity of the task of trying to provide an anti-phobic politic for gay college men with HIV: In a pedagogy that attempts to address the question of AIDS, the first move must reside in ethnographic stories of AIDS, noticing the contradictory details of syndrome, of the HIV virus, of the woeful disregard of the event, of ACT UP, of the language of AIDS. The historicity of terminology must be accounted, from its beginning around 1976 as a discourse of “gay-related immune deficiency” to the four H-groups (Homosexuals, Hemophiliacs, Haitians, Heroin users) and on to what Paula Treichler (1988) has called “the epidemic of signification.” The ethnographic are the stories of discourses and the constitution of bodies of knowledge and knowledge of bodies. But also, this history should be situated in a larger study of illness and then the study of how societies across

time go about distinguishing the healthy from the ill, the guilty from the innocent, the general public from the risk group. The ethnographic stories must consider cacophonous perspectives and arguments between and within communities. To defy the impulse to think that representation is the answer, the ethnographic must examine its own wounds: fiction, music, dance, film, journalism. The ethnographic move is curricular, necessary, and insufficient, demanding much in the way of engagement from teachers. As it turns out, the ethnographic cannot divide itself from its own anxiously uncanny. (Britzman, 1998b, p. 322) Although my project is insufficient to the task, and does not encompass all of these elements, Britzman’s outline for a Pedagogy of AIDS describes the task I have set for myself. Ultimately, I am still left with questions of the kind Hole (2007) asks about her poststructural project that I ask about mine: “Is this analysis useful? Can a poststructural analysis add to the political debates and extend the discussion without undermining the political importance” of the categories and discourses the participants find important (p. 276). The conundrums and tensions that Lather (2007) encountered in constructing her book on women living with HIV resonate strongly for me: Poststructuralism makes you suspicious of voices as some innocent uncomplicated story. There were these 25 voices and my suspicions, and my seductions and my wanting to get in the way and interrupt the romance of voice and my wanting to get out of the way and let the power of voice go forward. (p. 27) Telling the stories of those living with HIV courts “the danger of romanticizing and exoticizing AIDS sufferers and the pandemic; … [and also brings] a certain cultural capital in working with the marginal in terms of the academy” (Lather, 2007, p. 31). The question of exploitation arises, but to fail to bring the marginal or oppressed into conversation is as problematic as not examining it. Ultimately, Lather (2007) believes that interpretation (i.e., “to situate the stories within these larger frameworks”) is the academic’s gift (p. 29). I end on this quasi-utopic note, despite my suspicion about utopias, not to situate myself as the magnanimous scholar giving to those who have not. Gift-giving can be a reciprocal process and not all gifts are wanted, useful, or fit.

Chapter Four: Narratives of Gay College Men Living with HIV Constructing Participants’ Narratives What follows is my story of the stories of each participant. As I have explained here, and to each participant, these narratives represent a mediated representation of each man. These are my presentation of what they and I have created together. My goal in constructing these narratives was to present to readers my impression of how these men understand their life story and to represent the discourses they drew on the most to express their relationship to HIV/AIDS. I hope to convey to readers the participants’ voices as I heard them. In some narratives, I privilege the discourses I found prominent in our interviews, or those that struck me as common across participants. Therefore, readers should understand that these men may narrate their stories with different emphases or would not see the discourses I highlight as particularly noteworthy. These stories are true to the extent that each participant agrees that what I present here is a fair and accurate portrayal of them based on our conversations. I include nothing that they do not want me to share. They are untrue to the extent that experience and memory are notoriously unreliable. Participants were usually painfully honest—while they certainly may have withheld some information—there is much they did not hold back. Unfortunately, space prohibits including much of what they did share with me. For any readers concerned with the veracity of these accounts as provided here, I must stress that I am engaging in an inquiry of the discourses participants use. Although I strive to portray an accurate account, the kind of accuracy most important is the degree to which I reproduce the language they used to discuss their lives. Also, these men discuss their experiences as they understood them. Therefore, when participants make claims about how certain segments of their institution responded to them or to HIV/AIDS more broadly, I am not concerned with whether or not such claims hold up to objective scrutiny. For example, several participants identify that their institutions do not provide education about HIV/AIDS to students. I cannot know how correct that is, but I do not need to know. What is important is that this how the participants perceive the institutional response. I am tempted to argue in such situations that clearly if students who need support are not finding it—regardless of its existence—then the institution is failing, at minimum, to provide adequate support, but, again, such an argument is irrelevant to the endeavor here. Instead, I am focused on the way these men understand and

60 express their lives and relationship to the virus and how institutions of higher education inform that expression. As narrator and researcher, I made notable editing decisions in constructing these stories from transcripts. Of course, I controlled what to include and exclude, what to summarize in my own words versus what to leave in the participants’ own words, the style and chronology of narratives, and the editing and re-arranging of participants statements. I did try to stay true to what I understood as the participant’s thought and way of expressing his thoughts. Nonetheless, the organization of thoughts is often mine. An example is my usual omission of “uh,” “ah,” other speech placeholders and verbal pauses (e.g., “like”), and speech repetitions (e.g., I think, I think…). Sometimes I include transition words in brackets to make the quote more understandable. Otherwise, I try to retain the individual’s own sentence structures to convey a sense of their voice and personality. Finally, with most participants, I group their words together thematically or conceptually rather than chronologically. If we discussed an idea over multiple interviews, I frequently bring those words together as if they were spoken during the same conversation. Although the narratives follow a generally similar structure, some variation exists in order to convey the participant’s individual story best. What life details I include change across participants based on how relevant I see them to how the participant told his story. For instance, early family life details are provided more for participants who emphasized them more. If the participant did not discuss certain aspects of his life, they generally receive less detail in his narrative. These narratives encompass the scope of participants’ lives as they told them to me. Although understanding the role of postsecondary and higher education institutions is paramount in this study, limiting participants’ narratives to their tenure in these institutions would not only do a profound disservice to the complexity and fullness of their life stories, but would also neglect many experiences and discourses outside of higher education that impacted these men. My aim, therefore, is to provide a rich, layered portrait of each participant that highlights their time as college students within the context of their full lives. Readers will likely notice that several of these stories have very little, if any, mention about these men’s college experiences. I take up this noteworthy absence in my analysis. That said, these studies are but

61 one possible telling and are necessarily incomplete and partial. Had our conversations been different, different stories may have emerged. I present these stories roughly with the non-traditionally aged students first. I then move progressively through stories of the participants whose experiences and ages more closely reflect those of traditional undergraduates. I also group narratives together for various reasons. Charles’s story I present by itself because his situation stands as demonstrably unique in many ways from other participants. Daniel and Bill are grouped together because of some strongly similar experiences, but mostly because I believe their responses to dealing with HIV/AIDS—and adversity in general— are parallel expressions, differing in content but the same in form. Next I share the stories of Tony, Jason, and Josh. These men are grouped together because of a shared interest in health- related fields, but also because of their relatively close ages and length of living with HIV. Tony and Josh also navigated undergraduate life with HIV, although they are now several years removed from that experience. Finally, Aiden, Alex, and Kris are all traditionally-aged undergraduate men of color who have lived with HIV for a relatively short time. Kris and Aiden are very active as student leaders, and Alex and Aiden were diagnosed with HIV just over a year ago. Despite these somewhat arbitrary groupings, commonalities and convergences exist between all the men’s stories. My organization should not imply that parallels and similarities do not exist between those in other clusters. The names of participants are pseudonyms chosen by the individuals themselves. I altered the name of other individuals in the story—no name appears that is the actual name of the person. For the names of people highly significant to the participants, I informed participants that they were welcome to suggest alternative pseudonyms to the ones I chose. Cities and university names are fictitious locations. I also altered the names of events, or anything that appears with a proper name. All block quotes are participants’ own words; shorter direct quotes are integrated into the narrative. A Few Notes on HIV-Related Language In several of the narratives, the men and I use terminology to discuss their health relative to being HIV positive. They use terms such as: viral load, undetectable, CD4 count, and T- cells/helper cells. According to AIDS.gov, viral load refers to “the level of HIV in your blood.” Being undetectable means “In general, your viral load will be declared "undetectable" if it is

62 under 40-75 copies in a sample of your blood.” Being undetectable “greatly decreases” the risk of transmission, although it does not eliminate it. CD4 refers to the number of T-helper cells in the body, cells that help the body combat infection (Fan, Conner, & Villarreal, 2011). People with HIV benefit from having higher CD4 or T-cell counts. Several of the men utilize some form of ADAP, or AIDS Drug Assistance Program. According to the Kaiser Family Foundation (2014), ADAP is any public assistance program that provides “HIV-related prescription drugs to low-income people with HIV/AIDS who have limited or no prescription drug coverage. With more than 210,000 enrollees in FY 2013, ADAPs reach approximately one third of people with HIV estimated to be receiving care nationally.” Finally, as part of their management of HIV, all the men engage in a regimen of at least a pill once a day. Some may take other pills to counter side-effects of the HIV medication or to deal with other health issues. The Stories of Gay College Men Living with HIV/AIDS Charles: Wanting to Live Affable, friendly, and energetic, Charles is a white, boyish looking man of 32. He tries very hard to maintain an optimistic perspective on life, despite substantial challenges. Life’s a bitch, life’s always going to be a bitch, so why live it so stressed out all the time? And that’s why my motto on life became “Be light on life.” Instead of being heavy on life, be light on life, because life’s too damn short to be heavy. Charles has been pursuing his bachelor’s degree in psychology for the past two years at Brick City University, a large, public, urban research institution in the Midwest. has Although he has lived with HIV for eleven years, he recently experienced several months of serious health problems. In our first interview, Charles said he wasn’t sure who he contracted HIV from, given that it happened during “that whole routine of sex, drugs, and partying,” a period when he engaged in frequent anonymous, condomless sex, but another time felt strongly that an early boyfriend had passed the virus to him. Regardless, Charles was not surprised when he found out, I knew the risks involved; I knew I could possibly get myself into, and, I don’t know, I cared, but I didn’t care. It was like, oh well, shit happens, if God wants, ok, if there is a God, if God wants me to have it, then God wants me to have it. I can only live and learn and that’s what I’m doing. Although he clearly tries to take care of his body and health, his gaunt features testify to his recent bout with HIV. We met only twice. During our two conversations he returned

63 multiple times to his current primary concerns: his relationship to Mark, his partner of ten years, and recovering after being derailed by his prolonged illness. He lives in the middle of the country in a house packed with animals (e.g., cats, dogs, a litter of puppies, a bird, and an iguana), plants, various sculptures and other hand-crafted artwork, and mismatched furniture. Charles enjoys working with his hands, and had multiple on-going art projects, “necklaces, jewelry, candle-making, anything, I’m making soaps.” During our time together, Charles’s attention would often be drawn to the animals in his house. Relatively isolated from others, he commutes fifty miles to Brick City, a large urban center, and the location of his university. Seeking Independence Charles and Mark left gainful employment on the West Coast and returned to the Midwest a few years ago to help family members financially. However, Charles, a pastry chef, has not been able to find steady, well-paying employment since their return. Consequently, Charles decided to enroll in school full-time, earned his associates degree in sociology at Brick City Community College and then enrolled at Brick City University (BCU). Charles’s progress at BCU was slowed due to HIV-related health problems. Unfortunately, Mark’s alcoholism also has presented serious challenges. When drunk, Mark frequently gets into violent arguments with Charles and has destroyed their property on numerous occasions. Complicating this situation is Charles’s financial dependence on Mark. In addition to monetary support, Charles’s health insurance comes from Mark’s job, although Charles has elected to go through the state’s AIDS Drug Assistance Program (ADAP) to acquire his HIV medications. Charles also frequently commented on the difficulties caused by both his and Mark’s family members. Mark’s sister and her children had stayed with them for slightly under a year, causing tension about disciplining the children. Charles also harbored some resentment towards his parents, for the way they mismanaged their money. Now, Charles felt like they frequently imposed on him without offering any form of support in return. Anti-depressants and anti-anxiety medication help Charles cope with Mark’s outbursts and his family problems. In the middle of the country, recovering from HIV-related illnesses, and alienated from his sometimes violent, alcoholic partner, Charles feels isolated yet optimistic. It seems like everybody around me is wanting to die. And nobody is wanting to live their life to the fullest. …. I’m avoiding my parents; I’m avoiding my brothers; [and] I’m disconnecting from Mark because all he’s doing is just drinking his life away. I’m trying

to sit here and get myself healthy, get a job, get myself on the ball, get myself set up with [a local AIDS organization] so I can get the [state] ADAP approved. I’m really just sitting here trying to focus on getting my goals straightened out, and it’s hard to do that with someone who’s a severe alcoholic. …. I’ve got to do my own goals and I am getting them accomplished, and so I’m happy about that. Charles sees the issues with Mark and their family members as significant contributors to his health problems. His t-cell count and his viral load, both indicators of HIV activity in the body, dramatically changed for the worst in July of the previous year. Health Problems and School These health problems hit during his second year at BCU. They were so debilitating that he had to drop three of his five classes. His GPA fell below the 3.0 necessary to retain his state- sponsored scholarship. This effectively cut his financial aid in half. Understandably, this put further stress on Charles, and is forcing him to take longer to complete his degree. It has also hindered Charles’s ability to job search because his energy was so severely depleted. Charles began HIV medication in early 2013, and over the course of two months, they began to restore his vitality. Still, Charles continued to experience a great deal of fatigue. Also, his medications came with their own side-effects, most notably nausea. His physician gave him a note to provide to his university’s disabilities services office about his need for anti-anxiety drugs as well as about the effects of HIV medication. The disabilities service office required more extensive documentation from Charles’s doctor, who works at the university-run hospital. Charles became incredibly frustrated, and this incident was a significant factor in Charles wanting to join this study. I found it to be a big time hassle trying to get information from Brick City’s own hospital to send to the disabilities office, and that’s another thing with this virus, because what I’m experiencing with the disabilities office it’s not like the same—I mean someone could go in there with doctor’s orders of ADHD or ADD and actually get extra time to work and extra time with tests and special privileges, but you get someone in there like me who’s suffering from symptoms of having severe fatigue and severe nausea from HIV and can’t make it to school and can’t make it to classes, and they require all this information from me. Trying to obtain the needed paperwork from his physician led to more complications and delays.

After two weeks of trying to contact my doctor to see if all this information’s been sent over to the disabilities office, nothing’s come in yet. I’m like, you know what? Screw it; I’ll just go along with myself. These people obviously don’t get that HIV has a really strong impact on somebody’s life. Medications, I mean, yes, they’re helping me out, but I still have side-effects, and if I can’t get to class because I’m severely ill in the mornings, the teacher should understand that. I guess I could have went to the disabilities office and told them I had HIV before I started becoming symptomatic, but I guess I had a shame behind being HIV positive, and I didn’t want to disclose that information at all. And I wanted to try to work my best because I had been told before by a physician who said sometimes being in denial of having HIV is the best thing because it lets you live your life without having this burden constantly over your shoulders saying you’re sick, you’re sick, don’t do this, you’re sick, you’re going to die, you’re sick. Frustrated with these administrative hurdles, Charles stopped trying to get accommodations from the disabilities office. Still, he worries about time limits on his financial aid. “It’s What I Want” Despite this obstacle, Charles secured several job interviews, and his physical health began improving. Charles became more assertive about his relationship with Mark. He threatened to leave Mark, and he felt this threat helped calm Mark’s violent behavior. Charles also took himself off—without consulting his physician—his anti-depressants and thought this choice was proving beneficial. Charles continues his quest to live his life independent of Mark and in spite of the virus. I had this counselor say, “It’s not what he wants, it’s what you want. It’s what you want to decide. It’s what you want because it’s your life, not his.” And that’s something, regardless of how much I think about it,[that’s] still sinking in, I guess. …. I’m trying to realize it sooner than later and understand that, yeah, it’s all up to me. My life is my choice, what I want to do. Daniel: Had It with the Masculine Face of God At 44 years of age, Daniel has literally traveled the world. As both a child and adult, he has lived in Europe, and in metropolitan cities on both coasts of the United States. Daniel combines the acumen of a seasoned business professional with the soul and talent of a singer and the playful, sharp wit of a drag queen (which he sometimes is). He’s articulate, charming,

66 introspective, classically handsome, immensely talented, a perfectionist, and frequently hard on himself. Singing is vitally important to Daniel, and central to his sense of self. He once left a lucrative corporate job to pursue a professional singing career, but unfortunately it did not take off within the five years he gave himself to achieve success. During the time we interviewed, Daniel was not singing regularly and its absence was clearly felt by him. The oldest of the participants, Daniel, a white gay man, had the most professional experience and the most socialization into urban white gay subculture. When we met he was in the final months of his Master’s program in Social Work at Opal University, a large private, nonsectarian research university on the West Coast. Daniel is also an on-going member of Alcoholics Anonymous and has been sober for 25 years. Daniel’s historical relationship to HIV/AIDS is substantively different from other participants as he was the only one infected with HIV prior to the invention of life-saving medications. Diagnosed in 1994, Daniel did not start taking medications until 2000 because he saw the toxic effects the best drug available at the time (i.e., AZT) was having on friends. Daniel believes he contracted HIV from an unplanned sexual encounter with his gym work-out partner at the time. I typically don’t bottom, but he wanted to, and didn’t have a condom, and I said, “Why not?” And then, after it happened, I was in the shower cleaning up, and now mind you, I had many friends who were sick and dying of AIDS at the time because we didn’t have protease inhibitors or anything back in those days, ... and I thought, “Oh my God, what have I done?” I talked myself down off a ledge on that one, and didn’t think about it, and then [seven months later] I was seeing the doctor for a routine checkup. So I seroconverted. I’m grateful that I stayed sober during that time period. [I was] very, very depressed. I wouldn’t say suicidal, but I was despondent, and I had lost two friends to AIDS that year as well, and it was just really—I thought I was going to die. I really thought it was a death sentence and my life was going to be over soon. The Visitation A year or two after his diagnosis, Daniel had a dream that he calls a “visitation.” Daniel was raised in a protestant, “super-oppressive, conservative, fundamentalist Christian military home” where his father told Daniel that he was “deceived and oppressed by the demon of homosexuality.”

I dreamt that I was walking with a basket of laundry from my house, and a man stepped up on the front lawn and started yelling at me, telling me that I was sick and depraved, and that I was going to hell and that I need to go to this revival and get saved. I became very, very angry. And I started yelling back at him to “fuck off,” and that I had more spirituality in my pinkie finger than he had in his entire body. And there was a woman walking up the sidewalk coming towards me; she was a beautiful woman, very simple, long brown hair, brown eyes, and she was wearing a light blue dress. She came up to me, and I was screaming at him, and then I looked down at her. She had this very peaceful expression on her face and she was smiling at me, and I was like, “What the hell is wrong with you? Why are you smiling at me?” And for some reason in my mind, this woman was the wife of this man. So I looked back over at him, and I went back at him with even more vitriol. I got so angry at one point I started crying; I was screaming at him and crying at the same time, and I looked back over at her, and she had the same very peaceful expression on her face and a smile, but there were tears coming down her face. And, and all of a sudden—I can feel it even now as I talk about it—I had this overwhelming sense of peace that washed over my whole body. I felt like she knew what I was feeling, she understood that, and I had a profound sense that everything is going to be okay: something I had never experienced in my conscious life [Laughs] that I longed to experience, but I had it in a very deep way. I then turned around and went into the house and started looking for money so I could go to this revival. And then I woke up. And when I woke up, I had been crying. It’s the only time I’ve ever been crying in my sleep. After speaking with his therapist and friends, Daniel began to suspected this woman was “the blessed virgin mother” Mary. Dubious of this because of his upbringing, it was suggested he see a priest who confirmed her identity. A few months later, Daniel found a Miraculous Medal of Mary—a pendant with the image of Mary—in his closet, a gift left by a friend, unknown to Daniel, that Daniel associates with having this dream. Reflecting on the dream at the time, Daniel concluded: I’d had it with the masculine face of God. I could not take that any more. And I think that the God who I believe in transcends sex, or gender, or transcends anything that we could really understand about, you know? I think we organize ourselves in a way to

connect to the Divine, but I think that God, whoever that is, said, “I need to send my girl in there because I can’t—we can’t get the job done with these guys.” Today, Daniel considers himself a “Christian mystic.” He explains, “mysticism is the belief that God expresses him/her/itself through all different ways, and I am open to and interested in all those different ways…whatever it is, I to want to be present for that.” Mary remains an avatar for him that he returns to; also, he finds that she “continues to show up” in various ways, such as through music and seeming coincidences. Intersections of Trauma Daniel’s spirituality is very important to him and a central part of his search for self- acceptance. Sexual abuse in his childhood and pre-adolescent years created intensely negative feelings about his self-worth that his parents’ religious condemnations of homosexuality and his later acquisition of HIV greatly exacerbated. I have significant childhood trauma—I’m definitely classified as Complex PTSD—that’s my deal, and all the classic signs and symptoms, but, there’s this whole negative neuro- network that’s been reinforced, so the challenge is to kind of reprogram. [HIV] adds another layer of fatalism and fear. I think I’m probably a little bit more hypochondriacal than I was before. It has definitely fucked me up from a relationship perspective because I already felt like damaged goods, and not good enough, and dirty and all of those things, and you add HIV to that, and the stigma that’s so pervasive—I mean, you go on [gay men’s social networking sites] and on profiles people are: “I’m clean.” “Seeking DDF [Drug and Disease Free] only.” That really feels great. And having to have the talk [deep voice] with someone, you know, is not fun. Daniel believes his acquiring HIV is linked to what he calls “compulsive sexuality” he believes is a result of his childhood abuse and parents’ oppressive religious beliefs. But Daniel is not without resilience. Some early advice from a gay mentor helps him deal with homophobia: I think the best wisdom I ever got from someone about being gay—and I hated it when I first heard it—and it’s gay advice I repeat to gays or “gaybies” as I like to call them, young gays—is “when you’re okay with it, everyone else will be okay with it.” And I hated that advice when I first heard it because I was like, “Why would I be okay with it? Nobody else is okay with it. That doesn’t make any sense.” But, it does make sense

because when I’m okay with it, it doesn’t really fucking matter if they’re okay with it or not, you know? Getting there is a whole different thing; I’m not sure that I’m still okay with it, but I kind of subscribe to that. He also notes that, surprisingly, living with HIV helped reconcile him with his parents. Initially estranged over their religious convictions about his homosexuality, their faith led them to reconnect with him because they believing in caring for the sick. Daniel’s perspective on living with HIV was decisively shaped by the historical moment of the AIDS crisis and the art that emerged from it. Although many different works impacted him, the memoirs of Paul Monette, who wrote about his lover’s death from HIV/AIDS and then later died of AIDS himself, were very influential. I think [Paul Monette’s] writing was intelligent but real. He did a really good job of describing his life and what was going on and the lives around him in a way that that I didn’t feel was militaristic or overly dramatic. At that same time you had all the ACT UP movement and stuff, which I was uncomfortable with, but now I see how crucial it was for anything to get done. But I appreciated the sort of more quiet, real, really accessible way that he wrote. I think that I saw myself in him to a certain extent. I didn’t have a partner, but—the sad part is, most of the people I knew who had AIDS at the time died. I didn’t really get to spend a lot of time with them or talk to them. They died, so, to be able to experience that and to connect with someone even through writing was very important to me. And I wasn’t talking about it to anyone; I had a couple of very close friends who knew, but other than that you didn’t talk about it. I wasn’t even getting health care at my regular doctor because I didn’t want them to disclose my HIV status to my insurance company, so I went to the public clinic to get my blood tests done. In both Monette’s case and Angels in America, [they] talk a lot about what I think Jung would call the shadow of the HIV epidemic—the things that nobody wanted to look at, or talk about, or stories that wouldn’t be heard at the time. Today, Daniel does not necessarily freely share his HIV status with people, but he also doesn’t feel the same kind of inhibitions about discussing his status that he did during the AIDS crisis years. One of the important support networks for him has been the AA meetings he regularly attends. He recently went to his first AA meeting specifically for members living with HIV.

I actually went to an AA meeting that is HIV positive-focused; people at that meeting identify as “positive alcoholics.” And there was a guy that shared a few weeks ago when I went for the first time, and he’s newly sober, probably in his mid to late 50’s. And [he] got up there and just fucking raged about HIV and how people treat him, and what it was like with people dying all the time, and I was annoyed by him. But I thought, “Wow, I come from that same time. I, we, lost so many people.” Talking with sober friends of mine that I’ve known, because, when you’re sober and you go to gay meetings predominantly, it’s a smaller world, and we were talking about how many great men there were in sobriety that we lost to AIDS that we wish we could still have with us. And I haven’t thought a lot about that for a while, either. I think, you know, I have survived that. I’m very, very, very grateful. Graduate Social Work Program The social work program at Opal University provided Daniel opportunities to better understand some of the oppression he has experienced as a gay man, in addition to providing him with opportunities to take a more active role in educating others about gay life in the United States. At a study-abroad workshop experience focused on intersectional issues of sexual orientation and gender identity, a woman in the group made a statement that provoked Daniel to respond. She goes, “I don’t really understand why we have to focus so much time on [gay and lesbian issues]. I’m fine with people being gay or whatever as long as they keep it behind closed doors.” … I literally felt my chest explode, like there was fire in my chest and I felt like somebody hit me with a two by four in my head. I couldn’t figure out why I was so angry because when I first came out, I used to say stuff like that. [I told her,] “That is heteronormativity. We’ve been talking about it abstractly; I’ve never really gotten it, but now, now I know exactly what that is. … For the first time in my life, I realized what I had been experiencing all these years, but I couldn’t point out; all of the things that contribute to all the reasons [gay men] hate themselves and what they do because they hate themselves. If you’re raised in a world where you are taught that you should be straight, you’re not going to love yourself very much. So that’s been a turning point, and it was also a turning point for me because I had never spoken up because I didn’t want to get in people’s faces or make waves and that has shifted. I am certainly no ACT UP kind

of guy, but I definitely talk about feminism, I definitely talk about heteronormativity, I definitely get in people’s faces about racism. Daniel, in fact, took upon himself during his time in the program to be the “de facto” gay person in his classes, “actively in the position of describing and teaching people about gay culture.” Daniel created, with the approval of the program faculty, an LGBT immersion experience for first-semester students. Daniel’s contribution is the only form of AIDS discourse that he encountered during his time in the program. I was really nervous when I started organizing it because, as you know, the majority of folks that come through our program are not gay. … We talk about all of the difficulties we had in the ‘40’s, … a lot about Stonewall, of course, moving into the AIDS crisis and what that meant to our community, how and what happened on a government level and activism and specifically about the importance of our lesbian sisters, especially during the AIDS crisis, and then up to the day. … In our feedback sheets the number one thing that they said was that it was the most fun. The second thing that they said was that they really learned a lot about gay culture, the AIDS epidemic and what gay history is because nobody teaches this shit in school. The graduate experience offered some new conceptual tools for Daniel, but primarily became a site for him to exert himself and to see himself in new ways as a gay man. Daniel never encountered in his institution any discourse about or representation of HIV/AIDS, outside of what he contributed to classmates and faculty. Given this absence, Daniel was unsure whether the environment would be supportive of him as a HIV positive student, and therefore chose not to disclose his status to individuals in his program. Daniel continues to attend personal therapy sessions to help untangle his multiple and interlocking struggles. Daniel chose social work as a profession because social workers have been the most helpful counselors for him and because he believes his life experiences make him a more empathic, trustworthy partner in helping people work through their own trauma and addiction issues. After graduating, he started working in a low-paying social work job where he is earning hours towards licensure. Although he sees social work as more than a job, he often worries he has made a “colossal mistake.” Daniel also missed having an outlet for his music, but came to a realization about it.

I was at an AA meeting the other night, and there was this guy who spoke. … He said that he is a purist, that he does music at home every day, even if nobody is ever going to hear it, just because he has to put music out into the universe. And it resonated with me. Missing his musical outlet, Daniel joined a local gay man’s choir in his new city and has already participated in one of their concerts. Bill: Doing the Footwork It’s hard not to like Bill instantly upon meeting him; he’s gregarious, friendly, engaging, and knows how to tell a story. “Everybody told me growing up that I was either going to be a car salesman or a lawyer. And whether that’s a compliment or not, I don’t know.” It’s clear why how people pegged him for those jobs: not because of the negative stereotypes of these professions, but because he knows how to connect with people. And indeed, Bill was a very successful car salesman for several years until he moved to his current location, Central City, a large urban center in the Midwest, to attend Central City University (CCU) two years ago. At 28 years of age, Bill, a white gay man, retains his youthfulness, but also has a worldliness about him, making him seem older than he is. Driven and a perfectionist, Bill nonetheless strives to live a centered, spiritual life, which is primarily derived from his continuing nine year involvement in Alcoholics Anonymous (AA). Currently working on his Bachelor’s in Business Management and Entrepreneurship, Bill’s drive is evident in the pressure he puts on himself to maintain a 3.0 GPA for a scholarship while taking an 18 hour course load and working full time in retail sales at a large, high-end department store. He experiences results no small amount of stress from his full workload, compounded by him wanting to redeem what he considers to be his failures. School is so goddamn expensive; there is so much riding on it, and not to mention you throw in egos on top of it: my ego tells me that I need to be the best. My ego tells me I need to four-point everything. … And so because there’s so much riding on it, especially when I like to think I go to a very prestigious university. …You don’t want to let … the school down; I don’t want to let myself down. … I think that there is certainly a subconscious correlation to how I feel that I’ve let my family down, and I’ve let myself down because not only did I fail with the drinking, I became another, I became a statistic with that. I failed at the gay thing and I became another statistic with that. Like society says, if you drink too much you become an alcoholic, and society also says if you’re gay

you’ll get HIV or AIDS and die. And so I think that those are correlated to my thought processes of … I can’t fail in school because I’ve already failed. I’ve already let myself down; I’ve let my family down; I’ve let society down in this other aspect. The Drink Bill grew up in the Midwest with two alcoholic parents, who, despite otherwise treating him and his two brothers well, introduced chaos and instability into their sons’ lives. Bill’s mother once became so inebriated during a vacation that she disappeared for several hours, leaving the family fearful she had died. Another time, Bill came home from a school trip to his father in a drunken rage. More chaos and instability came from the endless taunting Bill received in high school about his homosexual behaviors. On two separate occasions, other boys Bill made advances on spread word to the rest of the school. Bathroom graffiti and whisper campaigns were just part of the harassment he encountered; one large student would scream “faggot” in his face and ram Bill’s body into lockers. Drinking with other students became a way for Bill to have a peer group and deal with the violence and chaos in his life. Bill felt guilty about his homosexuality. Growing up in a Catholic, although not particularly observant, household, Bill feared a “punishing God” who would send him to hell for being gay. Bill’s parents would sometimes make disparaging remarks about gay people, including Bill’s uncle. Bill did “everything I could to like do what society deems is straight.” Therefore, Bill also drank to facilitate his sexual encounters and to dull his guilt after them. Bill’s drinking and sexual explorations continued into his professional life. Still planning on living a straight life, he moved away from his small home town and landed a job selling cars. Highly successful with few expenses, and good pay for an 18 year old, Bill poured money into alcohol and a new car. A week before his 19th birthday, Bill received his first DUI after being caught speeding 88 mph in a 55 mph speed zone. Although he thought his career was over, the dealership never found out about the ticket. “I did tell myself that I would never drink and drive again. And that lasted about six months.” Bill moved on to the best car dealership in town, where he continued to be successful. At the age of twenty, he received his second DUI. He spent the night in jail, lost his license for a year and paid a $12,000 fine. The dealership kept him on, and two days later he attended his first AA meeting.

For the first time in my life, I sat in a meeting of Alcoholics Anonymous and for the first time in my life, I felt like I belonged somewhere. And it was the—one of the greatest feelings I had ever felt in my life. Don’t get me wrong, … I wanted to get drunk, I really wanted to get drunk. … [Nonetheless] all that was done, and in an instant [claps hands] my life had changed. And that happens again when I get diagnosed; in an instant, my life had changed. The Steps to Recovery and Tommy Bill would not test for HIV for several more years, yet he credits AA for laying the foundation for coping with his diagnosis. Bill formed a network of people who supported him into sobriety. Among these, two people stand out as particularly influential. Truvy, a woman who provided a great deal of emotional support, is someone Bill still turns to on a regular basis. But above all others, Bill’s life has been impacted by Tommy, an “old Vietnam vet, crazy as a bedbug, but educated.” Tommy, while alive served as a spiritual mentor and now, deceased, as a spiritual avatar. Tommy, … was more of a mentor, sponsor, spiritual advisor, … he’s probably the only true self-actualized human being that I’d ever met. …. It was uncanny the way that he could … make somebody think, … make somebody feel, and the way that he could use a lot of sexual humor to make a point. … He spent a year and a half with stage four liver cancer, and … and so there was this aspect that came from him that always talked about having faith, but not necessarily the faith that I was taught to believe in or forced to believe in growing up; … it was very open-ended for me to choose a path that worked for me. One of the most significant lessons for Bill happened while Tommy dealt with his cancer. Tommy looked at me … and he said, “I’m going to focus on the quality of my life, not the quantity of my life.” And he looks at me and he says, “And I have zero fear. I have none.” And he smoked Pall Mall non-filters, and he lifts and he takes a drag off his Pall Mall, and he said, “I want you to understand: no matter what happens to you, in your life, good or bad, if you continue to work this process of recovery, you will be okay.” And what he meant by that was not just … do what I need to do to stay sober. …The staying sober part is just a snippet; it’s the rest of it that is living life. So I work this process of recovery. And then a tear ran down his face. … I was in the room when he died. Well,

we were actually outside having a cigarette break, and he died when we all left. And he did that on purpose. We believe that little thought, … that is this: … just keep moving forward no matter what happens. Things will be okay. It may not be the okay I think of, but things will be okay. And sometimes that okay is death. And Tommy taught me that. Tommy had no fear to die. And it was, I don’t know, it was powerful, very powerful. How it Works: Bill’s Spirituality Although Tommy had a very significant and profound impact on Bill’s outlook on life, Bill draws his spiritual philosophy from a variety of sources. Bill pulls heavily from The Big Book of AA, the primary text of the organization, and also from Buddhism, Catholicism, nonsectarian Christian devotional literature, secular aphorisms (e.g., “fake it until you make it;” “dream as if you’ll live forever; live as if you’ll die today”) and popular culture—music and movies such as The Peaceful Warrior and the documentary I Am. Bill’s conception of God varies: “sometimes it’s the god that I grew up with, … sometimes it is this spirit of the universe, … sometimes its Buddha, sometimes it’s Tommy, sometimes it’s spirits that I feel with me.” This worldview is consistent with the spiritual focus of AA. According to Bill, in The Big Book, God is broadly defined: “Good Orderly Direction, Group Of Drunks, whatever you want, whatever G.O.D. wants to stand for, it’s some type of a higher power because you need to realize you can’t do it on your own.” The spiritual aspect of AA is important for Bill, and several sections of The Big Book resonate strongly for him. The third step is “Made a decision to turn our will and our lives over to the care of God as we understood him.” And … there’s this two page thing of essentially in a nutshell how the program works. And so that’s what I find myself going back to frequently. … It, if I know how it works, then I’m alright. … And then after the “How it Works,” it talks about going into the Fourth Step which is “Made a searching and fearless moral inventory of ourselves.” And so Fourth Step is really, essentially going through every nook and cranny of the closet and pulling out every skeleton, leaving no stone unturned and you essentially, you put it all on paper, so it’s all out, it’s no longer a figment of your imagination, it’s no longer … hiding anything, it’s there. And then the Fifth Step is you share that with somebody. So somebody else knows all your shit. And [it’s] one of the most freeing feelings I’ve ever experienced through my life.

A tattoo of Eleventh Step Prayer of AA (also known as the Prayer of St. Francis of Assisi), based on a painting by artist Michel Keck, fills a large portion of Bill’s body. Bill explains the prayer: “Lord, make me an instrument of thy peace, that where there is hatred, I may bring love; that where there is wrong, I may bring the spirit of forgiveness; that where there is darkness, I may bring light. So injury pardon; [where there is] doubt, faith.” So you’ve got these polar opposites, so the world will provide lots of injury and darkness and hatred, and so what am I going to provide? Can I provide love, pardon, light? Can I do all these things? So it’s this balance, and so it’s good and evil of the world, and this ying and this yang that we need to balance out. And so I say that a lot. Also significant is the way Keck—reproduced in the tattoo—painted the words of the prayer. “[What] I envisioned was somebody in an insane asylum who was carving this prayer onto the wall. … It literally looks like … [the tattoo artist] carved it into my side.” Ultimately, the lesson of AA for Bill is “that faith without works is dead. … I can have faith, but if I don’t do the footwork to kind of reaffirm the faith or to really prove that I do have [it].” Of course, like most people, Bill struggles to enact his beliefs. Diagnosis Five years into sobriety, four years ago now, while in a committed, although not always mutually faithful, relationship with his then-partner Phil, Bill was diagnosed with HIV. Bill found out he was positive after multiple medical problems with Phil led to Bill getting tested. Bill believes he likely acquired it from Phil, largely based on the fact that he rarely bottomed except for with Phil. Still, Bill acknowledges he may have contracted the virus from other men. Being diagnosed with HIV was incredibly difficult for Bill, in many ways much more than living with HIV daily now is. Bill counts his diagnosis as on par with his second DUI and the seemingly endless stream of harassment in high school. Bill credits ‘The Steps of AA’ and the few close people he met through AA as sustaining him through his own and Phil’s diagnosis. Truvy accompanied him to every doctor’s appointment and sustained him through Phil’s medical difficulties. At a low point, Bill and Truvy prayed to God and Tommy for help. In the weeks and months following Bill’s own diagnosis, “the only hour during the day that I could breathe was when I sat in a [AA] meeting. ... And I felt Tommy’s presence so much when I was in these meeting rooms.”

The Paradoxes of Living with HIV Being diagnosed with HIV was both a shock and relief for Bill. Since childhood, he had received the message that gay sex invariably led to getting AIDS. Being diagnosed with HIV paradoxically felt like a relief from this seemingly inevitable fate, while simultaneously making him feel that he had “failed at the gay thing and I became another statistic with that.” Initially, life with HIV could be panic-inducing. I remember the first time I was at home depot … and I remember I cut my finger, and it was the first time I had bled since I was diagnosed, and I stopped right in the aisle. And blood had dripped on the ground, and it was on, there was a little bit on this little metal thing, and … I immediately looked around and I thought everybody knows. … So it was almost like I had to learn to walk all over again. However, over the year, Bill found living with HIV to be a more normalized part of his life. As far as my life goes now, it’s just, it’s part of me, it’s something I always think of, … especially every night when I take my pill. But … aside from taking better care of myself, and just being more cognizant of it, the fear of it is gone. … There are often times … where I think I’m just going to make a Facebook status that says the only way to start to break down this stigma is to tell everybody this is me: I’m HIV positive, I’ve been HIV positive for four years now, and then waiting to see what happens. I think of that often. Being diagnosed HIV positive also made Bill confront his mortality. Understanding that medicines help control HIV such that he could very likely live a long and full life, Bill nonetheless felt—and sometimes still feels—that something will go wrong and he’ll die an early death. That said, being HIV positive also means feeling both healthy and strong for Bill. After his diagnosis Bill stopped smoking and began exercising regularly; he takes great pride in being fit. It’s going to sound really weird; getting HIV was probably the greatest thing that ever happened to me. And the paradox is it was—by far—the worst thing that ever happened to me. It is certainly a double-edged sword because it changed my entire outlook on life, as did me getting sober. … I’m healthier today than when I was before I was diagnosed. … Of course that’s debatable because I’ve got an ailment that’s incurable.

Bill’s fear of his mortality, bolstered by advice from Tommy prompted him to attend college. A few months after diagnosis, he broke up with Phil, and followed a new partner, Mark, out of state to Central City, where they started school together, although they have since separated. The fear that he will die young continues to motivate him to work hard and to accomplish his goals as soon as possible. University Experiences while Living with HIV Prior to moving to Central City and starting university there, Bill made some fledgling attempts to start coursework at a local community college, but he never committed to any course of action. He does remember: The very first college course I ever took was Psych 101 … and there it was, and I remember I flipped the page and I was freshly [diagnosed]—like a couple months, and I flipped the page and there it was—grieving scale: death of a spouse and HIV diagnosis. They’re … almost parallel as far as however they define what makes something the hardest thing on a grieving scale. However, since enrollment at Central City, the only discourse of HIV/AIDS Bill has encountered was a flyer inviting HIV positive people to contact a group of unknown people. The flyer contained little context or information about who this group was or why someone might contact them. Bill did not think it was sponsored by any unit of the university. This lack of discourse does not mean that Bill has not confronted any HIV-related issues in the university setting. The opportunity to go on a study-abroad experience required him to explore—without revealing his status—if he could travel with his medicines and if he could even enter the other country. He also requested a private room so that a roommate would not probe into his ritual pill consumption. Bill often experiences test anxiety and difficulty focusing when studying for exams. When Bill decided to buy Adderall from another student in order to help him manage his anxiety and better focus, he consulted with a physician about possible effects with his HIV medication. He has never disclosed his status to any instructors; he’s unsure of what their reaction would be. Bill relentlessly pushes himself to graduate quickly, maintain his grade-dependent scholarship, continue his sober lifestyle, and secure a good job post-graduation, all the while working forty hours a week selling men’s suits.

I worry so much I get, the lack of sleep, and the stress is just horrendous on my immune system. … I eat … a stress sandwich for breakfast and I go throughout the day nibbling on stress and then I get very little sleep. …. I ask [my doctors], “Is HIV going to kill me?” and they’re like, “No. You’re going to die of a heart attack because you’re so goddamn stressed.” Yet with his immense drive, Bill still seeks a centered, spiritual life. So there is a spiritual axiom that I find myself on; some days I’m more centered and more aware of it than others, and when I’m on that, there is this abundance of faith that allows me to act without fear. When I’m on that spiritual axiom to where I can feel it, there is … it’s really hard to describe, it’s just like this feeling of no matter what happens, … I’m here and everything will be okay. … I guess the fake-it-until-you-make-it; you know, have-enough faith-to-replace-fear-like-thing. Continuing Down the Path Bill has begun increasingly contemplating opening up to more people about his status, only people very close to him know currently. There’s a great deal of uncertainty about how people will react to him because of the messages he’s received all his life. Yet Bill wants to break free of his fear of stigma and rejection because of his HIV status. There’s an acronym for F.E.A.R., which is False Evidence Appearing Real. My fear tells me that everybody is going to be unsympathetic towards me for having HIV, because … I am a gay man from a small town: I will grow up, I will get AIDS and I will die. That’s the sequence of events and how it happens. … My own fear prevents me from telling people, which prevents me from figuring out whether they’ll be sympathetic or unsympathetic. For years now, Bill has been open about his sobriety, continuing involvement with AA, and being a gay man. Although he counts being diagnosed with HIV and getting his second DUI as equally low points in his life, Bill points out that, “I’ll tell almost anybody today that I’ve got two DUI’s. I won’t tell almost anybody that I’m HIV positive.” Bill dreams about getting married, having children, and moving up the corporate ladder into a well-paying position. Although HIV seems to prove an obstacle to these aspirations at times, Bill returns to the lessons Tommy and AA have taught him.

I’ve got these grandiose dreams. And the difference today, as it was when I was drinking, was when I was drinking I would have these grandiose dreams, but I would just be sitting at a barstool or sitting at home not doing anything. Not taking the necessary steps. Now at least I’m doing the footwork. And I don’t know exactly what I want to do, but I do know that if I just keep doing the footwork, that it will work out. Tony’s Story: The Fight of His Life A quiet confidence exudes from Tony, a 25 year old white gay man. Direct and succinct, Tony does not mince words. He cuts to the heart of the matter as he sees it, often with a very dry, and frequently dark, humor. His occasionally aggressive posturing seemed incongruent with the individual sitting next to me, willing to share his story, or for as someone cares so much for his work with elderly people. His interest in this field started when he began working in a nursing home to help take care of a relative. When I was in high school, me and my grandma moved my great aunt … into … an assisted living … place for a long time, but then she needed to go into a nursing home. … I started working there so I could be around her more … and I just fell in love with it. … I’ll be a nursing home administrator. Since I’ll have my Masters, maybe I’ll want to teach a class or two. Now, Tony has almost completed his Master’s Program in gerontology at Blue Valley University (BVU), a moderate size university in the Midwest. Tony has lived with HIV for four years, having been diagnosed his sophomore year at BVU. Given the substantial challenges and changes HIV posed to him during that time, and because it was the focus of our limited time together, the following narrative focuses primarily on his undergraduate experience. When Life Started Rather than starting his narrative at home, Tony began his story with an exchange program trip to Poland he took immediately after graduating high school. He lived with a host family and grew close with his host mother, with whom he still keeps in regular contact. “I feel like that’s when my life started. My childhood was crazy. And it [Poland] was the most, the best year of my life.” He loved being able to explore Europe on his own terms and the friends he made there. “That was really awesome to meet those people and to know that if I ever go to Brazil, I can go to any major city, and I can stay. I don’t have to worry about staying in a hotel.”

And he’s certainly availed himself of his connections, taking multiple trips to Greece, North Africa, and Germany. Tony has a very strained relationship with most of his biological family. His grandmother is the only family member with whom he has a warm connection. He dislikes his sister and takes many issues with his mother. “Family is not this big huge thing for me. It never really has been. It’s more of an annoyance.” When he graduated high school, he sued his father for child support and won. Poland marked a literal and symbolic separation from his family members, although when he returned to the states, his enrollment at BVU only allowed him partial independence. I lived on my—not on my own—but essentially away from everybody that I know for a whole year in a foreign country. ... When I came to college, it was like a continuation of that, but … I’m only thirty minutes from home. I was caged in Blue Valley. I wasn’t able to travel all around here like I had been used to. People Always Have Something to Say Attending college in the same area as his home town made immediate and extended family members feel entitled to offer Tony unsolicited and unwanted advice. People always have something to say, like, “I’m cold hearted,” and “I go out too much.” Well, when you’re doing what I’m doing, then come back to me … And, “Oh, you’re gay, that’s not cool.” Well, you’re seventeen years old and have two children already, so get back to me when you get your life together, because your life’s over. … I just don’t have the patience for people. I’m a bastard and I don’t care. Tony’s impatience with people stems from many areas of his life being highly policed by family members and other people, primarily around being gay. In fact, Tony has encountered more homophobia than he has AIDSphobia. I feel like [being gay is] my biggest obstacle …because people always have something to say. So, people almost get clocked at the bar all the time ... because they talk crazy: “Faggot and blah, blah, blah.” And I’m like, …“Say it one more time. I’ll show you what a faggot is.” Tony has faced homophobic slurs on campus as well. I did get the occasional “faggot” and I just let them know I would whoop their ass if they say to me again. … I’m a pretty decent sized guy, so, you know, if you’re 5’8” and

talking shit, I will beat you down. I don’t have a problem and I won’t get in trouble for it because it’s a hate crime. I have an expensive lawyer; I’ll get away with it. During his second year, an incident with another student in his residence hall escalated into a conformation with campus police. Some girl … called me a “fucking faggot” so I was ok, bitch, alright. So she called the cops on me because I was banging on her door. Like, come talk, you know? And so [an officer] called me a faggot, and then I let him have it. ... He stood there for twenty minutes, and I was screaming at him. [I] told him I would pull his pants down and shove my dick in his ass. I’m serious. I threatened to have his badge taken away. … And I was underaged and I was drunk. … It was … two weeks before I was sick. … He didn’t arrest me. He knew better. I would have had him taken down. Seroconversion Two weeks after that incident with police, shortly before his twenty-first birthday, Tony became exceptionally sick. At the end of his sophomore year, Tony seroconverted. They thought I had cancer. I was going to an oncologist. And I could barely swallow anything. My throat was like a ring of fire. … Imagine [strep throat] like twenty times worse. It was awful. I lost like 40 pounds because I couldn’t eat. I turned 21 while I was super-sick. And I still went out and did flaming Doctor Peppers because I was able to buy them. Very awful of me, but I did it. Still thinking it was cancer, Tony’s suffering continued. My professors gave me quite a hard time about it, about being sick. And then once I gave them the oncologist’s word that kind of shut them up. … I had never been that sick before in my life. … It was just the worst three weeks of my life and … I was sleeping twenty hours a day. Tony had never considered he might have HIV. During one visit, Tony disclosed he was gay to his oncologist. The … oncologist told me that since I was gay, all gay guys get HIV and that’s what happens to them. And so, I told him, verbatim, to fuck off. And then I told his secretary that she better not send me a bill. And she didn’t. Because he pissed me off.

Tony put the incident and the possibility of HIV in the back of his mind. He did his best to finish out the spring semester and to start summer courses. That June, Tony received a text message from a former sexual partner with whom he had not used condoms. I was getting back into school … catching up because it was right before the semester was over so I missed a lot. … June 19th of 2009 would be when I found out. The guy had texted me at like four o’clock in the morning and told me he tested positive. I had to go to work at six A.M., so I found out when I woke up. I had a freak out session at work, and was luckily able to get into the health center here on campus and they tested me and I tested positive. That day was just like a whirlwind. A team from another university was on the campus of BVU, testing students for HIV that day. Tony went to the recreation center where the visiting program was set up. “I was relieved not to have cancer, obviously. … I was like, wow, I didn’t cry. I just was like, hm. And the girl who tested me is actually my best friend now.” Tony’s Demise Tony then participated in follow-up care to determine his viral load and CD4 count. He began to worry about fluctuations in these numbers. So after I found out and … got my initial labs, … I was fine. But it was giving me anxiety because I wasn’t in control of it. It could change without me knowing. I was taking some summer classes and the only thing that was on my mind that whole summer and … into the fall semester was … I don’t feel very good. I’m super tired and I was just drinking all the time because I wanted to forget about it. … I just couldn’t … handle it. ... My [healthy cell] counts were going down, and it just wasn’t the best time of my life. The strain of never knowing what his numbers might be pushed Tony to a breaking point that led to him dropping out of school. I had a breakdown at the doctor’s office the second time I was there, and I was like, “I need to be put on medication. I can’t. I can’t. I need to have something I’m doing to control—I can’t handle it.” … I was taking anatomy and physiology and for two and a half hours every day at 8 am in the morning. … [Under ] normal circumstances it was awful, and then throw that on there, I was like screw it. ... I mean I did get one ‘A’ … that summer in … my “Death and Dying” class … I was doing shitty in [summer] school and then I was doing even shittier in school … in the fall. One teacher, he noticed that I

wasn’t tuned into the world, and so he ... asked me to come to his office, and I did, and … [explained] I just got diagnosed with a chronic illness, … and then I dropped out of school two weeks later. Tony, who already held a job, obtained two more jobs and began working eighty hours a week, going on “three hours of sleep a day, if that.” The work load took a toll on his health. His doctor bills piled up and he found himself deep in debt. Furthermore, his medicines weren’t working to suppress his viral load or raise his CD4 count, and he began to drink more to deal with the fear. Unusually, and highly unfortunately for Tony, he proved severely allergic to many of the medicines used to treat HIV. I had to go to the [metropolitan city] clinic and get—I was the fourth person in the U.S. to ever have this done. … They had to force my body to like one of my medicines that I take now. So … eight hours, two different days with crash carts next to me, and nurses to make sure I didn’t have an allergic reaction. So that started those two regimens. [Then I was] waking up and I was covered from the top of my head to the bottom of my feet in this horrible scabby rash that I had developed within four hour overnight. I felt gross because it’s nasty to have a rash and … I had to wear diapers … because it was making my skin like a white film and it would crust, and it would hurt to peel things off. … Once I started on my medicine three weeks later, I was, phew, gone. So I have this fear of it coming back because it was literally awful. I was in the ER four times for it, trying to figure shit out. … [I] wasn’t in school so I felt like a failure. That was kind of my demise, and once I got on meds and they started being successful, I was, ok, well, you know, I can deal with this. Recovery Once his body acclimated to some medicines and he became undetectable, Tony decided to return to BVU. Tony’s grandmother helped him by paying a 7,000 dollar charge accumulated from his previous enrollment. State-funded ADAP pays for Tony’s HIV medication, given how costly it is. Tony’s determination to be self-sustaining and successful is apparent in his feelings about utilizing this resource. This school insurance doesn’t [cover it], I mean I would max that out with half a bottle of pills. … And I feel like a charity case because I criticize my sister for being on welfare, but I feel like it’s different circumstances. Like her, it’s just because she’s a dumb ass

and got pregnant because it was an accident. … I sometimes feel like a charity case because I’m getting the government to pay for my meds, but it’s something … I could have controlled, yes, I get that, but something I can’t control the price, and I can’t control that I don’t have insurance right now that I don’t pay for it. … I’m trying to get to the point where I can pay for it myself, but I just need some help along the way. Tony was getting his finances, health, academics, and mental health back in order. In addition to the physical impacts of living with HIV, Tony was diagnosed as being bi-polar three or four years ago. So [my recovery was] just that whole process of me getting back together, getting myself together, getting on my medicines, feeling better, getting the crazy people meds taken care of, because I had those even before I was diagnosed. Keeps me level. And then I started back up in school, … got a 3.8 my first semester back. I was really getting my life back together. … I don’t want to be that person that just gets sick and doesn’t do anything. I decided that I can’t pity myself anymore and … I’ve got medicine now, I’m feeling better, time for me to get my ass back in gear. I can’t be loafing around. For many people, being as severely ill as Tony was—or even living with HIV—could be a considerable barrier. Yet Tony was determined that it should never be an excuse for him. The weird thing is—me getting diagnosed was kind of my wake-up call to like, wow, you really need to get it together. You’ve already had this bad thing happen to you, and it can’t take over your life. Merely returning to school was not enough, Tony felt compel to excel. I went back and did just a general degree in my field instead of the specialized one, … then I decided halfway through the end of the semester, like no, I can do the specialized one, I’ll make more money. … And here we are—I graduated with that specialization. … And then finished that, and I was like, “Well, I want to get a Master’s degree, that would be awesome to have.” Tony says that looking at the lives of other gay men he knows “who are doing nothing with their life” was one of the factors that made him want to quit feeling sorry for himself. “I didn’t want to be a waiter at Olive Garden when I was thirty.” Tony’s drive and ambition also stems from an encounter he had with his father in high school. His father told him that he

“would never amount to anything and turn out like him as a truck driver.” To Tony, “that kind of was the deciding factor; like, motherfucker, watch me.” Living with HIV Today Even now, several years after the diagnosis, Tony must manage daily fatigue from living with HIV and the side-effects of medications. My doctor’s basically told me that it’s like I’m fighting the flu every single day. That’s why … some days are worse than others, and I don’t like to use it as an excuse to not do anything, but it gets old, being tired all the time. Tony takes Vyvan, a prescription similar to Adderall, to help him stay awake and focus, but he doesn’t take it during the day because it suppresses his appetite and makes him “crave pop and cigarettes.” Working out helps Tony to not feel as tired, but makes it difficult for him to fall asleep. He keeps at a rigorous pace: “So, I’m dead-ass tired at … eight o’clock at night, but … I have homework to do and then … my brain will be moving from that, and so I won’t go to bed until midnight then I wake up at 6:30.” On top of it all, Tony recently needed to adjust his mental health medication. “I was having a lot of highs, like big cycles, so I had to get medicine to level me out and then it was leveling me out too much and I was like a zombie.” He did find a regimen that allows him to function well, but “it’s annoying. If I don’t take my medicine I just feel insane. My thought processes are crazy; not like bad crazy, just I … spend money a lot.” Despite the need to deal with fatigue and manage multiple medicinal routines, Tony is on the verge of completing his Master’s degree, and looking forward to establishing himself as a professional in the care for the elderly. He’s very determined to make his life purposeful and meaningful. For two years now, he’s been a guest speaker in a one hour course on HIV/AIDS offered at BVU, and he also shared his story at World AIDS Day. He’s spoken in residence halls about living with HIV. He plans to be a nursing home administrator and has no concerns that HIV will impact his future in the field: “I mean I’ll be the boss, so, I guess if they have something to say, come at me, and what are you going to do? … I’m not really concerned about it, to tell you the truth.” Tony certainly possesses the drive and determination needed to achieve his goals. He’s proven himself to be not just a fighter, but a victor in many of his challenges. Jason: Life as a Bonsai Jason exudes a friendly, Southern charm. To a fellow Southerner, his accent clearly marks the region of the southeast where he grew up. A man generally of few words, Jason is

87 laid-back and optimistic. Although his optimism “come[s] natural … sometimes it takes hard work.” In his perspective on life, Jason seems like an old soul in a young body. He combines a youthful demeanor with mature insights. He jokes and laughs frequently, sometimes with a very understated and dry humor. Although he has lived in many different states over his lifetime, now thirty-three years old, Jason, a gay white man, currently lives in Keystone City, a large metropolitan area in the state of Fremont, located in the Midwestern United States. For as long as he can remember, Jason has been cultivating bonsai trees. He learned watching his grandmother at an early age, and continues the craft even though he finds it tedious and his least favorite hobby. Still, he has over 172 trees of various types and sizes, and he still enters them in competitions. Jason’s description of his bonsai aesthetic encapsulates the way I understand his life story. You can shape it anyway that you want to, but I don’t see any point in going against the grain. Whenever a tree’s naturally going to do something, you just help it and strengthen it to go the route that it’s prepared to go. … [A good bonsai tree is] all about the root system. Strong roots. …You can have a gorgeous tree with a very small root structure, but that beauty’s not going to stay very long because the roots aren’t going to be able to keep up with the other half of the tree. Bonsai roots are exposed in their pots most of the time; they’re not buried underneath where you can’t see them. In fact you want to show them; that’s part of what gets you higher points in the shows—is whenever you can see the root system. Because roots don’t have to be buried for trees to survive. Rather than fight against opposition and obstacles, throughout his life, Jason has chosen to go with the flow of events, strengthening himself when times were difficult. Jason’s involvement in this study also reflects the bonsai’ roots: a choice to show others what sustains him and helps him survive—and thrive. Bouncing Around Jason grew up in a small town in the deep southern state of Belvedere3 with three brothers, “and I stuck out like a sore thumb, I guess because I was the only gay one, I don’t really know. … Just so different than other people, just an oddball, really. I’m the most unnormal normal person in the world.” Although his parents deny it, Jason remembers them and

3 Given how often Jason moved about in the same region of the United States, yet among so many states, I use fictitious names for states (and cities) to provide an easier reading experience. 88 other people talking about gay people negatively, so he kept his sexuality to himself and waited until he was old enough to leave. Jason left Belvedere at 21 to go to the southern state of Oconee where he learned how to perform ultrasounds while completing an online MBA degree he had started in Belvedere. However, most jobs in Oconee were already filled. He found a job doing ultrasounds in the upper Midwest state of Snowland through a head hunter. There, he briefly experimented with trying to change his sexuality by dating a woman and attending church. But a career doing ultrasounds was too limiting and uninteresting, and he left. He moved back to Oconee with a friend to seek different work and start school again, which was delayed as their friendship dissolved. When they parted ways, Jason, then 27 years old, “like totally throwing a bullseye at a map,” moved to the Northeastern city of Newpond, Ames. He began a relationship shortly thereafter with an older man named Matthew, moved in with him quickly, and started school in earnest to be a licensed practical nurse (LPN). Nine months into the relationship he was diagnosed with HIV following a routine health check for insurance. I started medication right away so Matthew wouldn’t get it. In the meantime we were finding out if he is positive or not. So I went on my meds as soon as possible; but, I didn’t like the idea that there was a virus going on in my body. I didn’t have enough information to make a really informed consent; I just wanted to do whatever possible I could to stay as healthy as possible. So to me, as long as I was taking medication, I was doing the best possible thing I could do. Jason was surprised, but deduced he likely acquired the virus several months prior during a sexual assault where he was drugged with Rohypnol in a bar. Jason still only remembers the initial conversation he had in the bar with his assailant, the rest of the encounter now wiped from his memory. He seems to prefer not remembering. Being HIV Positive in Nursing School Despite his new diagnosis, or perhaps partly because of it, Jason applied to get into a licensed practical nurse program in Newpond. I knew that I wanted to do nursing, but I was just kind of fumbling through, not really making it happen. And now that I had—I really see it as I never saw the hourglass of my life visually until I was diagnosed with HIV. … I was educated enough about it to know

that it wasn’t a death sentence, but it still, just thinking about all the what if’s. … It was a good spark to really keep me on track, and get me motivated. Being HIV positive in the program, however, particularly being newly diagnosed, produced challenges. That was an extremely horrible experience because not only was I dealing with my diagnosis, but in nursing you have to cover stuff like HIV. And you’re dealing with teachers who are … not all that up in the field, so they spoke about HIV in a very grim tone, and basically said … that the life expectancy today of people with HIV—this was in 2009—was 10 years, which was totally not true. And … I probably just made [a] face … that said I had HIV written all over me, but it never did. And it’s like, how do you approach your instructors and try to educate them without throwing yourself under the bus? Because at the time I did my nursing physical, I hadn’t been diagnosed yet. And I was in turmoil not knowing if I should tell them that I was positive or not. Jason had another negative experience with a clinical instructor related to HIV. One of my clinical instructors… the first day of clinical, she’s like, “We’ll not take patients who are HIV positive because it’s not worth the risk to you students.” That was horrible turmoil that I was in throughout that whole program. It wasn’t until after that I wrote a letter to the dean, and explained my situation that I was HIV positive, and I told her I was very disappointed in the way that my instructors behaved. She wrote me a letter back saying that she would be doing an in-service from then on HIV, … but also on them being careful [not] to say anything negative about any type of illness that any of the students may be suffering from. I can’t go through another program where they say something like, “We’re not taking care of HIV patients” without stopping right there and saying, “Wait a minute; we’ve got to address this situation before moving further.” In addition to his nursing program, Jason took a job providing care to low-income individuals at a community health center. This was his first time to see people who were HIV negative and many of them were very infirm and sickly looking. It caused him to “freak out” and he left after a year. Blackouts and Betrayal Jason’s and Matthew’s relationship persisted for a year and a half after Jason’s HIV diagnosis until Jason suffered two blackouts within a span of two months. While in the hospital

90 during his second blackout, Jason found out through a fellow nursing school student that Matthew didn’t want to continue their relationship. So, because of that I feel like I was really betrayed by him, and I didn’t even want to try at all to talk to him or work things out. … I mean I really thought my world was over, and I would never recover from that—I mean financially because everything was so tied up with him. I gave him a hundred percent and I was starting back over … from square one. Although he and Matthew never discussed it, Jason feels strongly that Matthew ended their relationship because of Jason’s HIV status. I really think he left me because of HIV—he just didn’t want to leave me because of HIV, so he had to come up with some other way. It took him a year and a half to [laughs] figure out a way to ease out without him looking bad. Gay as a Two Dollar Bill While in the hospital, Jason’s mother came to visit him. She learned that he was gay, in a relationship, and HIV positive all for the first time during the visit. I mean I guess you wouldn’t say she was okay with it, but she was at least understanding. I remember feeling like I am pushing this car off my chest as I’m telling her. And at the same time, I guess you don’t know if the car’s going to come back down the hill and crush you and be what kills you, or if picking the car up off your chest is going to be what saves your life. She never really did react or respond. I never saw an emotion. It was just, I guess, silent support you could tell. Given Matthew’s treatment, Jason and his mother packed up Jason’s few belongings in his car, flew home to Belvedere and shipped the car and possessions later. Living at home and starting over proved not so bad. I didn’t really see that as a bad thing, especially after my mom was open to the fact that I was gay and everything. I really felt like it was spring time as far as my relationship with her …. So that opened up a new opportunity for us to get back together; which now we’re closer than ever before, probably closer than we were whenever I was in her womb, [laughs] because I didn’t bother talking to her then either. Jason’s father was also “extremely supportive.” During a long car ride where Jason was chauffeuring his father to the V.A, his father surprised him with a gift.

I actually have a two dollar bill that I framed because he handed it to me, and said, “I do believe you’re gayer than this two dollar bill.” [laughs] … I really feel like him handing me that two dollar bill was his way of saying he really could care less about the whole gay thing. Moving Onward While Jason’s parents were supportive, his career and education prospects in Belvedere were significantly limited, so he moved to be with a friend in the Southwestern. But circumstances dictated the he had to move again weeks later. Searching for affordable large cities that would provide him job opportunities and gay communities, Jason settled on Keystone City, Fremont in the Midwestern United States. Within a few months he met his current partner, George, a 62 year old man who grew up in the city and was new to dating. I didn’t tell him right away about my status; I wanted him to get to know me first, and, luckily, he didn’t have a problem with it whatsoever. And also I figured with him being from the generation that he was in, they wouldn’t be so apt to hold it against you like you’re a bad person for having it because everybody that they knew that had it, I mean they didn’t deserve it, and not that anybody does, but it is hard to get, we have learned that much. So pretty much if you get it today, unless you have extenuating circumstances like my situation, you basically have to really have unsafe sex in order to get it, and then it’s like, ok, you pretty much expect for acting stupid, I mean, you know? Preparing to be an RN Jason enrolled at Carter Technical Institute in order to finish prerequisites to enter the registered nursing (RN) program at a local school. Some of Jason’s previous coursework needed to be more current in order to gain acceptance into the program. He worked for a private firm providing healthcare while taking classes. He discussed some of his concerns about having HIV while being a nurse. What scares me about being a nurse is the whole AIDS dementia thing. We don’t have as good of a grip on that as we do on some of the other medical aspects of the virus. …. So, I, it makes me very paranoid about when am I going to, if I do come down with AIDS related dementia, what are my symptoms going to be and how is that going to affect my patients? I mean some days I want nothing more to go into medicine, and some days I want to totally get out of medicine and deal with something easy like business then if

anything starts failing on me, it’s not going to, there’s nobody’s life going to be in jeopardy or anybody be put at risk. They definitely do weigh on my mind. The question of whether or not he is obligated—ethically or legally—to disclose his status for nursing jobs also continues to perplex and bother Jason. It’s not really clear: am I required to say I’m HIV positive because they can come back and say you lied on your orientation by not disclosing your status to us. I don’t really know how that would work, and that has yet to be determined. So I have a lot of anxiety and stress over that and how that’s all going to play out in the future. Several months into our interviews, a client accused Jason of being too rough with her child. The company made assurances to Jason that he would be fine, but once he contacted a lawyer, the tenor of the conversations changed. The incident soured Jason sufficiently that he not only left the company, but nursing and healthcare as a profession. “I won’t even stop and give somebody CPR. [laughs] I joke, but I would be more hesitant now than I ever have been in my entire life to help somebody in any shape or form or fashion.” The stress of the situation exacerbated health issues Jason was previously managing. It’s put a lot of stress on me, which because of my medication, my GI [gastrointestinal] system was already very messed up. So it actually produced some new diagnoses … that qualify me with my HIV status to draw disability, which I never ever, ever though I wanted to do. HIV: An Unwelcome Guest Life with the virus means not knowing how he’s going to feel on any given day. As Jason explains it, They say there’s the steps to the grieving process that you go through. I forget the orders and everything, but that’s irrelevant because until I dealt with this, I never realized you can bounce around to those different categories; it’s not a phase and once you come out of that phase, you never go back to that phase again. That’s not the way that this happens. There’ll be things that trigger it to where I can feel just as bad and emotionally upset as the day that I was told that I was positive, and then even within that same day, I can see a whole new light at the end of the tunnel that I never saw before. So, it’s very strange. … Some days it’s the best thing that ever happened to me to be HIV positive; some days it’s the worst thing to ever happen, and it bounces back and forth from the best

thing to the worst. Some days I don’t want to talk about it at all, and some days I’ll talk about it all day long with people. And I don’t really know what causes that. There doesn’t seem to be any noticeable triggers. As am I going to wake up today and regret having it or am I going to wake up today and be glad? Jason wasn’t able to identify any regular or specific events or experiences that trigger good or bad feelings for him around his HIV status. For instance, he takes his pill every night, but some days he’s so tired or busy, he doesn’t linger on why he’s taking the pill. He did mention that he worries about others if he were to be in an accident. He specifically talked about the 2013 Boston Marathon bombing. I mean if that happened to me, what if I’m not alert enough to say—and my legs are blown off, I’m bleeding in a pile of all these innocent people. I mean, I’m sure no study’s ever been done on that, as far as how infectious I would be to somebody since the virus in my blood is undetectable, but still, I would be more traumatized by the fact that I’m bleeding on somebody with HIV than the fact that I’ve just lost my legs. But being in college and relating it to that, it’s like what if we have another Columbine shooter or something like that. That scares me. The Chill and Warmth of HIV Being HIV positive has impacted how Jason feels about others and the world in seemingly contradictory ways. I would say [living with HIV impacted my philosophy of life] tremendously, but as far as pinpointing how, I’d probably have to sit and think about it. I think sometimes whenever you’re faced with something like the HIV virus, you just kind of kick into automatic pilot. Yeah, it’s not like you have a plan in place, but things just shift, and it’s a huge shift. Well before I got this and had to deal with any type of real discrimination other than the whole gay thing, the world seemed like a much nicer place. And then after this, it was like winter really entered my world. …You just kind of want to keep to yourself and keep as warm as possible. When you find those rare warm spots, you don’t want to leave them, regardless of why or what’s going on outdoors. Yeah, [I’m a] much more closed-up person. I don’t see people as being so friendly. Despite feeling that the world is a less friendly place as a gay man with HIV, Jason also thinks that being HIV positive has also made him more compassionate and empathic.

I’ve been able to find the good in it because—it is there in the back of my mind, sometimes further back than other times—but it does allow me to have better empathy for people that are going through any type of diagnosis themselves, which made me a better nurse whenever I was practicing as a nurse. But even among friends too, I get, I understand now whenever someone is told something, even if it may not be that bad, if it’s any type of life-altering thing where, ok, this is really going to affect their sexual life or it’s really going to affect their ability to do anything that they enjoy, I get that, and I get what stress and depression is in that realm. So, yeah. It makes me better understand people and what they’re going through. Additionally, it has changed the way he evaluates others. I don’t see fault in anybody anymore like I used to do. I would never tell anybody, “No, what you’re doing is wrong,” unless they are harming somebody and I could just explain to them, Hey you really shouldn’t do that because it really hurts, you know, in whatever. His source of pleasure has shifted more towards wanting to help others. I guess my primary motto now, having experienced states of despair with the virus that I never experienced before the virus, I don’t find pleasure where I used to would find pleasure in driving a 60,000 dollar convertible, that would no longer bring me pleasure any more or knowing how I could shift those funds to help bring people out of states of despair, and still accomplish my goal of traveling from point A to point B. Over the years, his perspective on living with the virus has changed. “It’s not near as gloomy as it was at first. I don’t feel like I have this cancer diagnosis and I need to get all my affairs in order per se.” Nonetheless, Jason clearly sees HIV as an invader who needs to be vanquished. His compassion for others, medical training, and unique perspective on the virus are evident in his thoughts on how a cure should be prioritized over disease management. I think the gays in 1980 should have got together and said ok, … we’re not going to have any forms of sex past circle jerking until we get this whole thing under wraps and under control. We would have been able to shift the funds towards research, even if that involved them having shorter time on earth because we couldn’t perfect the medications out at the time, my view would have been like I don’t want to settle for medication that would help the situation, I want to shoot for that cure, so this is completely gone. Let’s

shoot for getting rid of it entirely instead of finding the happy medium where we can live in harmony with the virus because there’s just no harmony with this virus, not in my body anyway. It’s a very much unwelcome guest. And I don’t want to compromise with it. I want it out, at whatever cost that is to me. It doesn’t matter, as long as it’s gone. I would really like to be the youngest person to ever have to deal with this. I think after me, nobody younger than me should have ever got it. That would have been nice for me to be the last, as far as age goes. Jason and I ended our time together abruptly because of complications he was experiencing and so he could focus on his medical, legal, financial and educational affairs. Unfortunately, the unwelcome guest was making another house call. Josh’s Story: Back in the Saddle Again At six foot three, a shaved head, and a general—what I would call a Midwestern— disposition somewhere between unexpressive and gruff—Josh, a gay white man twenty-five years old, cuts an outwardly imposing figure. However, his gentle and caring personality comes quickly to the surface in conversation. He speaks thoughtfully yet directly; his responses are contemplative yet often brief. Rather soft-spoken, he nonetheless possesses an extremely dry wit that more than once caught me off guard. He could be very sincere in his responses, yet still convey through tone or expression his skepticism towards his own response, or the irony he found in them. Despite his brief responses, Josh had an incisive clarity about his life and living with HIV. Josh blends idealism with a farmer’s practicality and realism. He lives by principals of hard work and being kind to others. He describes it as: The 1840’s homesteading way of life. You’re going to go out and get your forty acres of land and you’re going to till it hard and you’re going to be nice to your neighbors and you’re not going to steal their tomatoes and life will be good. It’s the American dream. Josh’s inflection on the last sentence seemed to convey his genuine belief in it as a value system, acknowledgement that many hold this national ideal, and that rarely does the dream manifest. A Rural Midwestern Boy Raised on a veal farm in a town of 800 people in the northern Midwest, Josh had his share of chores tending to the cows. Although he had a good life, his father could sometimes prove violent. One of the worst encounters with his father happened around ninth grade when a

96 verbal argument between them escalated into a physical confrontation. Josh rebuffed an assault by his father, but then had to hide while his father chased him and then threatened to destroy his possessions. It took three days afterwards until his father spoke to him again. When they resumed working together again, his father continued being physically aggressive. Although that time period was “very traumatic” for Josh, “looking back at some of the faces and things he was doing, I find it comical.” Still, it did have it effects on Josh. I stopped kind of expressing myself for a while. I became very quiet and very shy. … I didn’t want to say anything; I didn’t want to do anything that might upset anyone in such a way, so I’ve kind of introverted to a degree. In high school Josh was very active, participating in basketball, school plays, student council, a volunteer club, and an arts club. Scholastic activities tended to take a back seat to his other interests and responsibilities. Although he made ritualistic displays of dating women in front of his peers, Josh understood himself to be gay. During his senior year, he had several sexual encounters. “We vaguely talked about safe sex in high school, but it was always around pregnancy, and so I was like, I don’t have to worry about getting pregnant. So, a-ha-ha, I didn’t get pregnant.” During this time, Josh contracted HIV, although he would not know with whom until years later. The summer after graduating high school, Josh came down with mononucleosis. His mother, a nurse, feared he had contracted HIV simply because he was a sexually active gay man. She strongly encouraged him to get tested at college, so his results—if positive—would not be known to their small community. Josh left to attend Remus University, located in Tiber, a major metropolitan area in the Midwest, a good distance from his small home community. A month after enrolling, Josh decided to get tested. The person at the university health center insisted to him that an HIV test was not the test he needed. Josh insisted, however, and she ran the test. When she called with the results, it was “an hour lecture of why I shouldn’t get the test. And then she was like, ‘These are your results.’ Next patient please. But … she gave me a couple numbers to call, which helped.” The local children’s hospital in Tiber served patients up to the age of twenty-five, so Josh found a pro bono case worker who helped him navigate his health care decisions and appointments. He also made use of Tiber’s AIDS resource center. Because Josh detected the virus early, his physician was able to administer a year-long regimen that helped him stayed

97 undetectable for the following year and a half without medicine. His relationship with the case worker lasted for three years. When their relationship ended because of her taking another job, it felt “like graduating high school all over again” for Josh. Acting Out HIV Josh entered Remus University as a theater major with aspirations to effect social change through art. He became interested in Augusto Boal’s Theatre of the Oppressed as the venue for educating others about HIV/AIDS and AIDS stigma. It was an idealistic thing in my head that—and … I was picky about the shows that I did or would want to do. … I wanted to do stuff that was just not for sheer entertainment value; I wanted to do stuff that would make people think and get the ball—change the world. I don’t think I could really change the world with that, retrospectively. He attributes much of this attitude to youthfulness: “I was very generation Y where I’m special; I’m the hero of my own story. Which, the ambition is great, but everyone in the world can’t be the heroes of their own stories.” He found out he was HIV positive in the first month of being in college. Being a theater major provided opportunities for Josh to work through his HIV status through course projects. I was very open about it. I think it was my way of dealing with it. I was practically more public about that than I was about my sexuality, which is weird. I shared it with friends. And a lot of our beginning acting classes … [had] a lot of self reflection kind of stuff, so it was my idea of what myself was at that point. … I didn’t have an idea anyway because I came from this small town and was in the big city, … so my idea of what I was already … shattered, but now it was really shattered, so a lot of my self-reflection projects that I did [in] classes revolved around it. [Teachers] probably got sick of it after a while because … I used it as therapy. It helped me make sense of it, for the most part. … There … was one in my very first acting class, you had to do … an autodrama and … you had to take a metaphor … and present your life through that metaphor to the class. And I, it was … so overdramatic and just sad, looking back at it. But I did a prison cell, saying that my dad was the warden and … then my first chance of freedom, I found out that I was actually bound still by my HIV status. That was my overall premise of it: imprisoned, but it was so overdramatic. Today, Josh reflects back on that time with mixed feelings.

At the time it was what I needed to do because I was having trouble coping, so I used everyone as a springboard. I would not do it again. I guess hindsight’s a bitch … nothing has bit me in the butt from telling everyone, I just wouldn’t tell everyone. I just. … The wrong person could have found out. … I was pretty naïve about trusting people. Comparing how he lives with HIV today versus during his time in college, Josh sees notable differences. When I first was diagnosed … I still acted like an 18 year old and would … stay out, [get] no sleep, do all the young dumb stuff. … [Now,] I’m more careful. … At the same time [now] … I take more care of myself and I’m less like, “Oh my god I have it.” College Relationships Generally speaking, Josh’s friends and faculty were either supportive or didn’t engage him around his HIV status. He did recount one incident prior to him disclosing his status where a friend made an AIDS joke. We were just in-between classes and we were getting rambunctious … and spewing out random stuff and she spewed out that [AIDS joke]. … I walked out, like snuck out, and then said something to her three days later, which she felt bad. I didn’t mean for her to feel bad, I just wanted her not to say AIDS jokes any more. … I was mad. I don’t know why. I shouldn’t have really been mad at her because, not to say it’s ok, … but had she known, she would have not said it. Josh recounted how the decision to disclose to friends and others was—and continues to be— difficult. My understanding of it when I was first diagnosed was poor, so in my mind I was going to die in seven days. Just the stigma of it is hard to deal with. And in the dating scene and the friend scene, do you tell your friends, do you not tell your friends? … I’m always beside myself or outside of myself, trying to feel out people, if I think they can handle it or not handle it. Josh struggled for a while thinking that his HIV status would foreclose the possibility of a relationship. A spontaneous encounter his sophomore year with a fellow acting student helped Josh think differently about himself I, in my mind, was undesirable to others. It was like, even if people thought I was attractive, as soon as they find out that I’m positive then it would be done, which is what

I thought. … But this person came around and we started hanging out. Then all of a sudden we kissed and then it was like, whoa, … maybe I’m not so undesirable, maybe I don’t have to stay in this relationship just because it’s safe. Even with this understanding, around the age of twenty-two, Josh considered only dating other HIV positive men so he didn’t have to worry about infecting others. “I’d done the bar scene and there were times I was black-out drunk and I don’t know if I disclosed. I wanted to take that risk away and just go for HIV positive men.” He still tends to favor dating other positive men, although he remains open to the prospect of dating a negative man. Still, Josh had several anecdotes of individuals reacting negatively towards him. One time, he disclosed his status to a man after two hours of conversation at a bar. The man got up and left without a word. Another time, a potential sex partner—who was a nurse—balled up in a fetal position and cried because he was afraid that kissing Josh might have transferred the virus. The typical reaction Josh describes from HIV negative men is one of condemnation. [They think] that I’m a whore because I have it, which, whether I am or not is regardless, because I got it from my second sexual encounter ever. I don’t think me being a whore has anything to do with it. That’s the biggest one as a gay man, and from other gay men: I’m dirty. The reaction from other people does not differ much. It’s similar, it’s never, “Oh you have a chronic condition.” It’s like, “Oh what kind of lifestyle did you have that got you that chronic condition?” It’s never about the condition; it’s about the precipitating events to acquiring the condition that is the issue. Given these reactions, Josh discloses before the first date. To an extent, because he can bank on this type of reaction, Josh uses it to his advantage to protect himself. I mean I do use it as a stay-away. A part of me when I start talking to someone and I say it right away, is to keep people at a distance, which is funny telling them something so intimate. I would rather get turned down because I’m HIV positive than because of me. Doing It On His Own During his fourth year of school, Josh decided he didn’t want to take out any student loans and could support himself. He took a restaurant job working sixty hours a week. Rarely sleeping, he totaled his car one night when he fell asleep while driving. Still, the money was insufficient to afford school, so he dropped out. He tried to stay and work in Tiber, but he didn’t

100 enjoy the work well enough, and he couldn’t afford rent and groceries. He decided to move back home. “I view that part of my life as my—I’ve learned a lot about myself and I had a lot of fun, and it was my young whatever days.” Home is Where the Heart Is Despite his rocky relationship with his parents earlier in life, family dynamics improved and Josh returned home. Josh says his father has treated him better since he found out Josh was HIV positive. After that he very rarely has gotten mad to the point where he was yelling. But his idea of the virus was the 1980’s version of the virus. In his mind, I was going to die in five years. [Still,] my dad and his misinformed-ness won’t share glasses or soda bottles or eating implements or anything like that [with me] because I’m HIV positive, and he’s afraid he can catch it. So my stuff is always segregated from his stuff in the fridge. The most difficult transition was accommodating to small town life again. Josh found employment at a local nursing home as a dietary aide with the help of his sister and mother. “It was working in a kitchen, but working with the people I really enjoyed.” When the nursing home sponsored some staff members to become certified nursing assistants, Josh applied and was admitted into the program. “And then I started working as a nurse’s aide … and I liked that a lot, so I enrolled within the next semester to the pre-nursing program and started taking pre- nursing classes.” Josh commutes forty miles each way to take nursing courses at Midwestern Community College. He doesn’t mind the distance because he’s familiar with the long travel to town—a commerce hub for his area—from his earlier years. His experience as a nursing student is much different from his undergraduate experience. I was way closer with my teachers in undergraduate, however the main reason I’m not as close as I would like to be with my current teachers is because I’m afraid of discrimination. So I don’t open up all the way. … I’m completely open about the gay thing. I think I’ve hammered that thing to death [by] bringing up gay stuff. Not openly crass because I don’t want to gross out the other guys, but I bring it up like, “What if this?” Because everything that the book gives us is all very safe, kind of. … They’ve never had a gay student so far, so they’ve never thought about it. However, Josh fears the attitudes of his professors towards HIV/AIDS.

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I think they would find a reason to fail me….There are a few teachers who I know understand it because they’ve dealt with it. … I think they would get it and they wouldn’t be like “don’t touch me,” but it seems like they’ve found reasons to get rid of people for less; like, they didn’t think they were a right fit for the profession, … because our clinical grades are very subjective ... and it’s very easy for them. There’s a whole section of what we have to do with being professional and people have failed that just because they visible tattoos. Josh has witnessed first-hand the phobia medical staff can have about HIV/AIDS. It’s sad that people in the medical profession are completely oblivious. They’ll go on rants about how if they had to take care of a patient with AIDS—and they never say HIV—they say AIDS—and I don’t think they know what the difference in those are— whatever—that they would do all the gamut of all protections … that they could. … [It] puts me more on edge when I’m living up here. While Josh chooses to educate his professors and fellow students on gay men’s health issues, his position on educating others about HIV is more complex. To a degree he feels HIV positive people have an obligation to educate others, but is concerned how trying to educate someone might inadvertently reveal one’s HIV status. I feel like by attempting to educate people, if you are too passionate about it, then even if you don’t want to disclose, you disclose. … I could never educate someone without getting verklempt or whatever, so I think they would know immediately or they would read it on my face. I’d get flushed and sweaty. I will not educate any of [my hospital co- workers] because I don’t want any of them to know because I feel like they would, I know they can’t fire me for being HIV positive, but they could find a reason to fire me if they knew that I was. But there are quite a few people who are clueless. The Best Care Despite some of these obstacles, Josh remains passionate about nursing, as evident in the way he talks about helping his patients. After I passed the state boards for it, I started working as a nurse’s aide, and within two weeks one of my residents died. And … as a nurse’s assistant, … part of your job is to go in … and do post-mortem care to make sure they are clean … look appropriate for a family and for the funeral home. So, I went in and did this for this woman who had

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passed away. And it was the first dead body I ever can remember seeing. … And on top of seeing a dead body, I then had to touch and manipulate this dead body. But after that was done and … the shock of that was done, her daughter came [back] to see her, … and I knew her from the community. … She thanked me for the care that I did, and …we knew she was going to pass away, and I was very attentive to her and her daughter’s needs, so … it felt like … I was doing what I should be doing even though I didn’t really have a clue, because that’s not something you can learn. … I’m not a very spiritual, religious person, but it is the last thing I could do for them basically before they go on to a higher place, or to wherever. It was that, after the process of it, I knew that nursing and health care was … something I wanted to pursue further. Significantly impacted by this early experience, Josh continues to try to provide the best care he can for his patients. A later encounter with another patient provided a different kind of opportunity for Josh. Josh believes he was infected with HIV in a pre-college encounter with a couple. While working as a nurse’s aide, one of those men entered his care. One of them is still not positive, I know that for sure. The other one got admitted to the nursing home I worked at … because he was in denial for so long apparently. So it had progressed from just HIV to AIDS and he had all of these—he had Kaposi sarcoma, and all of the neuropathy, and feet, and all of these AIDS related conditions. He just said he had cancer, and he got admitted to a hospice at the nursing home, and I was working there as an aide. Five years of time had gone by at that point. And I was kind of sure that I knew where it came from, and then when he got admitted for cancer, but I knew the meds he was taking and I knew—I had looked at his chart. I saw that he was actually— he had AIDS. It was my chance to forgive him, so I took meticulous care of him almost. Because at that point if I tell him I hate him, what’s that going to do? It’s not going to cure me. I had five years at that point to dwell on it, adjust to it, and come to terms with it. … The best thing that I could do for him was give him the best end of life care that he could get. Aiden’s Story: Working Towards a Queer Future Aiden is a quiet, contemplative, soft-spoken 22 year old Filipino man with a boyish face. Aiden identifies as gay, although he uses the term “queer” in certain contexts as an act of solidarity with others who defy hegemonic ideals of sexuality and gender. He’s careful with his

103 word choices and often takes time to pause and reflect on how to best say what he’s thinking. He’s a warm and empathetic individual whose views have been shaped by having a vibrant gay community in Solar City where his university—Solar City State University (SCSU)—is located, and by a number of campus opportunities designed to support queer students. Prior to college, he lived mostly in “a very small conservative city” on the West Coast with his parents, two brothers, and grandmother. During high school he struggled with identifying as gay and relating to other gay students. I didn’t feel comfortable with the three openly gay students. I felt like they were very … stereotypical [in their] gay identity, and I didn’t feel like I could relate to them. … I didn’t want people to get the wrong idea of me, and so coming out was difficult and coming out to my family with our Filipino values was difficult. In addition to trying to make sense of his identity, Aiden faced another challenge when his grandmother passed away. Aiden regretted not treating her better during her later, infirm years. He held on to that regret until he realized “that … regret should be something to take as experiences to learn from instead of just like always wishing to go back in time.” This philosophy, along with his spiritual values, would greatly inform how Aiden viewed his HIV diagnosis. Toward the end of his high school career, Aiden felt overwhelmed because he didn’t know what his next steps would be, and this led to suicidal feelings for a while. He wanted to go to a large city filled with gay people. Although he didn’t end up where he wanted, he ended up feeling “right at home and … loved it, and … saw it as a blessing in disguise.” Finding “blessings in disguise” is another underlying philosophy for Aiden: “I think that way about a lot of things that happen to me in my life. Something that may seem really terrible usually ends up happening for a reason, and I end up appreciating it.” Everything Has a Purpose: Aiden’s Spirituality Identifying as a progressive Christian, Aiden’s spirituality expands beyond conventional notions about Christianity. One of Aiden’s most spiritual experiences was the first time he tried ecstasy at a rave his first year of college. They [people at raves] have this acronym, it’s PLUR; it stands for Peace, Love, Unity and Respect. And I think from my religious faith background, it kind of goes in line with it. … When I tried ecstasy … it put me in a place where I felt at one with the universe. …

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You see everything that you’ve been through, and you remember all your struggles, then you’re able to see … you’re not the only who has problems, and all these people out here have problems too. … I think for me was the most empowering feeling I got from that experience. Aiden likened this experience to being with other during a sermon in church. When I go to church and if the sermon really touches me and it makes me cry, if I look around and I see other people crying, I just have a sense of “I’m not the only one going through something difficult.” These values find expression in how Aiden talks about both his own role in being infected with HIV, and the role of the person who he believes infected him. I think everything happens for a reason and so … I can’t say that I should have done things: like, I should have taken more precautions, or I shouldn’t have been hooking up, and maybe I wouldn’t be here today, but … if I didn’t experience it, then I’m not who I am today right now, and I wouldn’t know what I know now, so, I don’t take it for granted. I appreciate everything that I’ve experienced so far. The man who likely transmitted the virus to Aiden probably did so when he secretly removed his condom during intercourse. Rather than be angry at this individual, Aiden chose forgiveness. I could have been really mad about it, … but eventually for my own happiness, … I would eventually have to forgive him for it. … Again, with my religious faith, I kind of see it as everything happens for a reason, and I mean really the reason I am so passionate what I want to do is because I do believe I can make a change in the world and maybe this is the change that was meant to be for me. So, and sometimes I see it as a blessing in disguise. In short, Aiden views everyone in his life like this: “Everyone I meet usually has some sort of purpose with … paving the path of my life or giving me some sort of direction.” Activism Aiden’s spirituality and his dedication to activism have grown together throughout his college education. His activist and spiritual beliefs are hard to untangle. Aiden shared a quote to articulate his viewpoint. “Every gay and lesbian person who has been lucky enough to survive the turmoil of growing up is a survivor. And survivors always have an obligation to those who will face

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the same challenges.4” Before becoming positive that was my outlook on every gay and lesbian person out there: they have that obligation to everyone who will go through the same challenges they went through. And so I get really angry when I see other gay students … who aren’t … doing anything on our campus community to make a difference. … But even within the LGBT community, I know there are HIV positive guys who aren’t open about their status, which is fine, because it’s like being in the closet. Everyone is on their own path and journey, but … I personally believe that everyone should be obligated to—even if they’re not open about it—they should at least advocate for or … do what they can to help fix the problem. The contributions and legacy of AIDS activists motivates Aiden’s desire to make a difference. I think it comes from me knowing what others have done before me and knowing I wouldn’t have it as easy as I do know if it weren’t for them. And so I want others to [know] … it’s … for people who are coming after me, like generations after, … we should never feel …there’s nothing else that needs to be done. Being open about his HIV status is an integral part of doing that work for future generations: “My courage to be open about [my HIV status] is knowing that …once they know about my status, it can change their whole perspective on anything, everything that they knew about HIV.” Self-Exploration Although very open now about his sexuality and HIV status, Aiden had to come to an understanding of himself first. Free from the constraints of home and his conservative town, Aiden quickly used the opportunity of moving away to SCSU as a time to meet men. I just thought getting away from home I would finally be able to explore my sexuality and be open about it. … And, I found out about online dating and all these different [hookup and dating] websites. … The day I drove down to Solar City I had already made plans to meet up with someone for the first time. … I basically started hooking up as a freshman, and all I knew of was having sex with strangers and then, I think, after my first year I just had all that fun, and then … I started seeing all … my gay friends have boyfriends, and I was like, “Maybe I’m looking for a relationship instead of just sex,” and

4 This quote, which is accurate except for the addition of “and” to the second sentence, is from the 1994 book Straight from the Heart: A Love Story, by Bob Jackson-Paris and his then-partner Rod Jackson-Paris. 106

then … [my] sophomore year I had my very first boyfriend ever, and it was a really good experience. He became involved with the Asian-Pacific Student Alliance at his school, but starting feeling strongly about needing to examine his gay identity more. It’s not so much that I stopped exploring my Filipino identity, it’s just I feel [that] what I identify with most is my gay identity. … I feel there is more that can be done with the LGBT community and a lot more work for us to be done to be seen as equal. I don’t see that we’re [Filipinos] very marginalized people, but …more recently … a friend is always point out white privilege, … so I’m starting to see it more. He became involved in multiple student and university organizations focused on lesbian, bisexual, and gay students, including a fraternity for gay, bisexual and allied men. He eventually became president of the LGBT student union and also became a vice-president for his fraternity while serving on a university advisory board for LGBT issues. Volunteering at a queer people of color conference on his campus his freshman year sparked his subsequent heavy involvement in these organizations. Attending conferences on several different campuses, Aiden became very committed to activism. Before I found out my status … I felt my purpose was to serve the LGBT community and to fight for equality, just be that queer rights activist. And of course that changed when I found out my status, and now I have something else to fight for. … Being so involved on campus I found my ideal career … is to work at a university and hopefully become the director of a LGBT resource center on … a university campus, and that way I can always continue my activism for the LGBT community and for the HIV/AIDS community. False Positive and Positive During his “hooking up phase,” Aiden would sometimes have condomless sex, but regular testing indicated he stayed HIV negative. When he started his sophomore year relationship, Aiden tested again for HIV and other sexually transmitted diseases. During this test, he tested positive for gonorrhea and HIV. I was really caught off guard by that. I didn’t know. That guy I fell really fast for, when I told him that … [I] was positive, he was supportive at first, and then as the week went by, he kind of just slowly stopped talking to me. … I shared with my close friends and they were very supportive and then a week later, I find out that the test results were false

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and so I was really confused about that, but then I was like, “I have a second chance and I can do a lot better.” And so I like made a promise to myself I would always have protected sex, and after that I also decided to be completely celibate and sober. Eventually some friends convinced Aiden that he could start enjoying himself again, so he resumed periodic use of alcohol and marijuana, and returned to having sex. Very hurt by his boyfriend’s rejection, Aiden returned to casual sex. In the late spring semester of his sophomore year, one of Aiden’s sex partners removed his condom without his consent. Intoxicated with marijuana and alcohol, Aiden didn’t notice until after they had finished. Concerned, Aiden went to get tested about a month later and tested positive for HIV. This time, the results were accurate. A research study provided him on-going medical care and referred him to a therapist. When I got that phone call … I already knew what it was for. … Part of my struggle at first with coming to terms with it was knowing what happened to me in January … and being like, “I’ve already gone through this so it’s no big deal.” But they had me see a therapist … and she helped me come to terms with it [by] telling me, “Even though you’ve already gone through this … you’re going to have to go through it again,” and she was right. A number of individuals showed, and continue to show, support for Aiden. His primary care physician proved highly supportive of him to the point that he quit going to therapy. She’s become like a mother to me because I’ve been able to talk to her about everything in my life since becoming positive. Anyways I wouldn’t be able to talk to my real mother about those certain things, and …the way she talks to me, it’s not only from like a motherly perspective but also just like a friend. … She’s helped me with so many different things, whether they’re HIV related or not. She told me I shouldn’t have to give up on my dreams and goals in life, and … that I would be able to live a normal, healthy life and it isn’t a death sentence any more. It was really comforting at the time. Eventually, despite his concerns, he did share his status with his mother. I told my mom last December so … I can talk to her about it now, but I still haven’t told my dad, and I don’t know if I want to. … Before telling my mom, that was a huge struggle too, … but I ended up just telling her to get it over with because … it was really bothering me.

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In addition to his physician, Aiden has also turned—and still does—to his fraternity brothers, church, and to reading the work of HIV positive authors to make sense of HIV/AIDS. For the first few months I only told my fraternity brothers and my [gay men’s] church group. … All my brothers in the fraternity, … they’re here for me for emotional support, but then there are some times when … they just can’t truly understand what I’m going through and so … I end up needing to talk to others who are HIV positive. [I] always like doing as much reading as I can online, … and I always find I can read through each one of those every time a new one comes out, I’m excited. Aiden initially tried a local support group dedicated to young adults living with HIV, but lost interest when he couldn’t relate to the members, who were mostly older adults. Despite the great deal of support he enjoyed, Aiden understands the weight diagnosis brings with it. I can understand someone who would feel very defeated and wanted to commit suicide after finding out they were positive. I think for me I was in a different place when I found out because I already had been suicidal when I was coming out as gay and so I think I was already at a point where no matter what life threw at me, I don’t think I would ever want to take my life. But I know for others it can be different. One Year Later In the year since his diagnosis, Aiden made a monumental decision. Recently [on] my one year anniversary of when I was diagnosed as HIV positive, … I came out to all my friends on Facebook about it. …There was a lot of fear there, even my doctor, … she was more afraid for me, and she thought once you tell people … you can’t take it back and she’s like, “Your future employers might be able to see that,” … but I told her all my reasons why I wanted to and that I was unafraid to [do it]. I mean, I was afraid, but when I came out to my friends on Facebook I only received positive messages and comments, and everyone was very supportive, so it felt really great. And then the unexpected outcome of it that I never would have imagined [was] a few of my friends who I didn’t know were HIV positive, who haven’t told anyone, …they came out to me too, privately. One of the individuals who disclosed his HIV status to Aiden was a fraternity brother from another chapter. Unlike Aiden, he was not supported by his chapter members when he told them about his status. Aiden tries to stay in contact and offer support to him.

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Coming out about his HIV status so broadly was important for Aiden to maintain his sense of integrity as an activist. It would be kind of harder for me to be … an advocate for people living with HIV and AIDS if—I just didn’t feel it would be right for me to keep it to myself. ... I wouldn’t be making as much of a difference as I could be if I were to just be open about it and share my story with everyone. Since then, Aiden has increased his visibility as an HIV positive activist in several different social media sites and campaigns and campus programs. Although Aiden’s status is widely known, he still maintains some discretion about to whom he shares his HIV status. Even before telling most of my close friends, I had already gotten to a point where whoever I tell if they have a problem with it, then it’s more their problem, not mine. And I still have that mentality. … I mean I will admit there are a few; like I’m not out to everyone at my work, … about being positive, I’m out as gay, but not positive, and I just feel like there are some people who don’t really need to know. … I feel like if I were to tell my coworker who’s straight, she would feel more panic than anything else, so I’d rather her not have to panic about anything. Sexual and Romantic Relationships Living with HIV impacted they way Aiden thought about romantic and sexual partners. I didn’t want to let it affect my love life, so … instead of seeking out … a relationship, [I thought] maybe I’ll just hook up with people still. … I went on [social networks] and found other guys who were positive and I had just a few hookups. I think it took a few different guys to get me to a point where … this isn’t what I want, this isn’t what I need to be doing, and I should probably stop so that I can go in the direction that I want. And I think if it weren’t for that experience, I wouldn’t have known what … the gay male HIV and AIDS community is like. Being very open about his HIV status helps Aiden navigate the complexities of interacting with potential paramours. Every now and then I like to feel like I’ve got it all figured out, but then … I’ll have feelings for another guy and I’ll go through it all over again, and … I don’t know if I’m ready to share this with him. … I think I’ve come to a point where I’d rather just be really open about it so that everyone knows and I don’t have to tell anyone.

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Aiden recently started dating a 53 year old man living with HIV also. Aiden describes him as having “so much energy and so much life in him.” Being able to fully share with someone who understand what it’s like to live with HIV, particularly as a gay man, is very freeing and enjoyable for Aiden. Undetectable A recent milestone for Aiden was finding out that his viral load was undetectable. This was “big new” and “just what he was waiting for.” Being undetectable brings certain comforts to him. It’s a marker of health and also lessens the risk that he might transmit HIV to anybody else. When I first found out I was positive, … I was scared that I could get sick very easily. … After starting meds, and even after I became undetectable, … I finally got to the point where I have less to worry about and it would be okay if I got sick and I wouldn’t have to worry about my immune system being very compromised. Although being undetectable helps quell Aiden’s concerns about his health, it has not dissipated concerns about transmitting HIV to others, even in unlikely ways. Even … after I found out I was undetectable, every once and a while, say … if I just cut myself on accident, before remembering that I’m undetectable and that I put others at a very low risk, I would still feel scared and concerned for others. Being undetectable does, however, means a shift in how present HIV is in Aiden’s mind. I mean it’s always in my mind every single day, but I think it’s just in the back of my head instead of always being my every thought. And I will admit now that I’m open about it to … my friends and family on Facebook, I think it’s not as much—I don’t want to say a burden—but it’s just another part of my life. And it’s there and … it will always be significant to me, but in this moment right now it’s kind of like “life goes on,” and I’m still going through the same thing everyone else my age is going through. Still, challenges do remain, even being out to many people. I think every once and a while, ever couple weeks, I find something new, a different struggle, and I don’t really have an outlet to share them. … I think the biggest way for me to cope with it all is to read articles online. … They just help me feel like I’m not the only one going through it and I know that I’m not.

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Just as he approaches much else in life, Aiden has reframed his experience in a more positive context. I’ve told people I feel … spoiled. … Even though I am HIV positive, I feel like I have one of the best case scenarios for it; I have a supportive group of friends and I haven’t had very many health complications, because I always make the effort to take care of my health. I know there are others who are going through a whole lot more too. For the Rest of the World For now, Aiden is finishing college and hoping to get into a graduate program in social work or student affairs so he can continue working on LGBT issues or HIV/AIDS issues. Aiden is concerned that his GPA isn’t high enough to get into a good graduate school program. Still, he credits being diagnosed with HIV as motivating him to improve his grades. I know that I can’t be the only student at [the university] who is HIV positive, and I know that HIV isn’t the only chronic illness out there, so I thought about all the other students who were going through other things, such as cancer or just anything at all. … I think it actually … it gave me a whole lot more purpose, and it motivated me to do better, especially now after I started thinking more about grad school, I was more motivated to do better in school too. Like many facets of his life, Aiden sees his education as an endeavor greater than what it brings to him. I’m not only going to college for myself—I used to do it to … help my parents out, and … to help my family out, not just my brothers, but also my family in the Philippines—but … I’m more and more finding reasons to also do it for myself, … but definitely finding I can do it for more than just for people who are close to me, but also … for the rest of the world. Alex’s Story: The Man I Am Today Cherubic and charismatic, Alex was always affable and relaxed during our conversations. He freely shared intimate details of his full and interesting life. Although relaxed and casual in nature, at 24 years old, Alex describes a hectic, active life. He keeps busy attending Gateway Fashion Institute, a for-profit educational institution in the Northeast, working in retail, and maintaining an active social and romantic life. Although committed to his studies, Alex likes to party also.

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Alex grew up with his mother and two sisters in the Southeastern United States. His mother struggled financially and frequently relied on various men for support, which required them to move frequently. For Alex this meant, “I always had to worry about food on the table, if we had a place to live, if I came home and our shit was on the front lawn.” Today, he feels those periods of upheaval have led to a need for “chaos in my life and when there’s not chaos I sometimes feel like I can’t function if something isn’t wrong, or if I’m not struggling.” Emerging Sexual and Racial Identity During high school Alex became aware of his sexuality during multiple encounters with the father of one of his friends. According to Alex, “I guess the technical term would be he molested me, but … it didn’t feel that way, but after everything came out, that’s what everybody labeled it as.” High school was a time where Alex also came to new understandings about his racial identity. In describing this period, Alex made connections between his sexual and racial identities. I remember once … I asked what gay was, and I remember just my mom just being like, “It’s something that only gross people do.” And my grandparents they’re Southern Baptists. I’m interracial. I’m black and white. And when my parents got married, my dad is white and all of his family is white and it was a complete, like, huge, big fat no-no. … That side of the family, they don’t like anyone that’s not white. They hate anyone that’s not normal. So it’s like, I’m gay, I’m black and I’m white. ... I honestly, not even joking, didn’t even know that I was black and white until high school when my dad actually said something about it because … at school people were kind of like, “Alright you all aren’t white.” And at that time, I really didn’t understand what it meant. I was like, “What are you talking about? Like, I’m white! Look at me! I’m white.” Anyways, and so, I remember asking my mom and she flipped out, because she has her own issues about being black and white. She thinks she’s legit white and … she’s far from looking white. Alex did confide in a friend who assured him that being gay wasn’t “a bad thing.” A Kid in a Candy Shop Alex began a three year relationship during his junior year of high school that continued through his first year and a half of attending community college. When they ended the relationship, Alex was left feeling “that I wasn’t good looking enough and that he was going to be the best thing I could ever do.” However, soon afterwards while going out to bars, Alex

113 received a great deal of attention. “I was just completely blown away … and so I was like a kid in a candy shop with all these guys.” After three years of sex with only his boyfriend, Alex awakened to a world of sexual possibilities. “I just went bat shit crazy! … I learned a lot about myself, about what I liked, what I didn’t like.” Alex reflected on the seeming irony that despite his numerous sexual partners, he wasn’t infected with HIV until much later. The friends that I knew at that time, we actually kind of joked that when I first found out that I was positive, … this is fucking hilarious. You didn’t get HIV when you were sleeping with five guys in five days, but you get HIV when you come to Gateway City and you slept with one guy and you trusted him when you shouldn’t have. Grandparents: Making the Man Summers were spent in a coastal southern state with his grandparents. Their role in his life is a mixed one, offering great support but also presenting substantial obstacles. My grandparents are very conservative, and I honestly wouldn’t be the man that I am today if it was not for them. They taught me respect, manners, to follow through on everything. … I looked up to them for a lot and everything. And they were very adamant on no drinking, no drugs, gay is bad, like straight only, you go to college, you get your degree, you find a girl, you get married, you have kids, and that’s the rest of your life. … Growing up, that’s just what I thought I would always do, and so when around high school, when I finally figured out everything, I was just really torn because the last thing I’d ever want to do—and it’s still how I feel to this day—is that I never want to disappoint them. So, … I tried to block out all gay everything, just because I was so scared that if they ever found out, that they would just never talk to me again. Alex’s grandparents provided him with a sense of stability and calm. “When we were down there, we had a normal childhood. We had food on the table every night. There was no yelling. There was no chaos. There was no worry.” Despite his concerns about their reaction, eventually Alex did tell his grandmother—although not his grandfather—and his mother that he was gay. That was probably the dumbest thing I could have ever done. Because they financially supported me, and they still do, to an extent, … but it was pretty much I had a free roller coaster ride and I could do whatever I wanted and had no care in the world. They were very angry at me [to the extent] that they cut me off and … we didn’t speak for almost eight months. And during that time frame … I was a pharmacy tech and … also going to

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school. It was devastating, but at the same time, I knew it was going to happen. … When they started talking to me again, it was like we never had the conversation. When I’m around [them] I’ll act straight, I’ll act like a good southern gentleman, and I’ll … act like the grandson that you all say I am. Since his grandfather’s passing a few years ago, Alex feels less pressure to downplay any affectations that might read as gay, and he has established a kind of détente with his grandmother. Despite the tensions around him being gay, Alex greatly admires and respects his grandparents: “I feel like if they wouldn’t be proud, then it’s not good enough, because if they’re not proud, then I didn’t do something right. … If it was not for them, I would not be the person that I am today.” Supplemental Income At the age of seventeen, Alex became a pharmacy technician, and after high school, he continued in that job while attending a local community college, with the intent of becoming a pharmacist. However, during his early twenties, living expenses and discipline of money management himself proved too much. Wasting rent money on alcohol and clothes, Alex decided to parlay the attention he received from other men into a lucrative additional job as a “go-go dancer, and that was a lot of fun” and, also, “technically I was a prostitute for a short period of time.” And I think I ended it around my 21 because it got to the point where I didn’t like myself anymore for what I was doing. … And I was really depressed after that, because I was like, well, shit, I don’t have an extra four grand to fuck around with anymore. I have to actually live like an adult now. Despondent, Alex proceeded to call his grandmother and ask her if he come live with her and his grandfather. She agreed, so long as he attended school. He enrolled in a small college, but stopped going to classes—without telling his grandparents—because he was so unhappy with his life. And fast forward five years later, I could already be done with school, having my bachelor’s degree and making more money than I would ever be making now, and not be struggling and almost 25, and still not finished with my bachelor’s degree. I wasted a good portion of my college fund when I was 18, 19, and 20 … and I really wish I didn’t,

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because I would have all that money to fall back on right now, and I wouldn’t have to work 40 hours a week just to like get by. He started a relationship that lasted a year, but it ended when Alex realized he was passionate about the fashion world, and decided to pursue a fashion industry career, moving several states away to enroll in Gateway Fashion Institute (GFI). Finding Out Soon after enrolling at GFI, Alex met another man. “Because I had so many experiences not using a condom and not having any repercussions, … [and] he seem[ed] like a decent guy— and …that’s the stupidest thing anyone could ever say,” Alex chose to forgo condoms when having sex. A month later, Alex’s ex-boyfriend wanted to reunite; Alex agreed. The ex- boyfriend asked Alex to get tested when Alex shared he had condomless sex. Alex found out he was HIV positive. I immediately broke down, and I called [my boyfriend] immediately. I told him what happened. And he was like, “It’s fine. It’s going to be okay. … It’s not the end of the world. I still love you.” And then after that, I called my best friend. She picked me up from the clinic; cried in her lap for however long I did. ... Because I was already very familiar with HIV through me being a pharmacy tech and I’d already dated a few guys that were positive as well in the slut years, so … I was very comfortable with it. I knew what to do, what not to do. And so … I wasn’t really scared in the sense; I was really just shocked that, holy shit, this is finally happening. Despite Alex’s insistence, his boyfriend waited a month before he was tested. He called Alex crying waiting for the results, and asked Alex to return to the state where he lived to be with him. Alex agreed, dropped out of school, and booked a plane ticket. “The day I got on the plane, I got a phone call from him saying that he got his test results back, and that he was negative and he didn’t want to be with me anymore.” Alex nonetheless flew back to confront him, and then returned to Gateway City to re-enroll in school. Initial Diagnosis During the first week that I found out, I was just so all over the place that I literally contacted every guy that I had hooked up with in the last year. … And [the five of them] were all really supportive, and then the guy that I had slept with [who transmitted HIV to me], I ran into him one night at a club up here. And I took him aside, and I … [told him I

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was HIV positive]. He was like “I know; … I’m positive too.” And I said, “Okay. Well why didn’t you tell me when we hooked up so I could have used protection?” And he said was, “Well, you didn’t ask, so I didn’t tell.” And when that happened, I lost my marbles. And I was already kind of drunk at that point, … and … [my] friends … saw me throw a drink in the guy’s face, and I was like ready to wail on him and so they grabbed me [and] took me outside. And then anger turned to sadness, and I was crying, and then I just ended up … going to 7-11, getting two large pepperoni pizzas and some Mountain Dew and then I just cried the rest of the night and that’s that. Alex decided to share his HIV status with his family, who proved unsupportive. The way they handled it was not good. My mom, the first thing out of her mouth was, “Well, I knew it was going to happen eventually.” And my grandmother said, … “You are gay, so, of course, you’re going to get HIV.” And my grandmother is an RN [registered nurse]. She’s been an RN for fifty-two years. And she is a brilliant, educated woman. … And … that was probably the most ignorant thing I’ve ever heard [her] say in my entire life. … After I told her that I was positive, she was, … “No insurance.” … So I got on Medicaid, and that’s what I am on right now, and … when I applied for Medicaid, I felt the most disgusting I’ve ever felt in my entire life. … thanks to my grandparents, … [I was raised to not] be a freeloader. …Which I’ve kind of turned into the whole me being a prostitute, saying, “Alright grandma and grandpa, you all want to cut me off, I’m just going take your advice and I’m going to go have sex for money.” I really wish I could tell them that, but it would probably give her a heart attack and kill her and then I’d be really sad, so I’m not going to do that. But, I got on Medicaid and so I go to the clinic now and I love it. Fortunately, Alex did find support at a community health clinic that had a focus on HIV/AIDS. He found a primary care physician and a support group for HIV positive men. The service there is phenomenal! Everyone is above and beyond knowledgeable of HIV. I mean my doctor—I, honestly, I couldn’t ask for a better environment to be in to go get health care for HIV there. … I go there for group, and there’s actually another group, … this online Facebook group. … And I was like “Oh, that’s great. … I now have a Facebook group that … I can get on and ask anyone a question and … we’ve all gone thought the same thing.” The [clinic support] … helped me become more comfortable

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with being positive. … I mean I knew that I could have a healthy life, but it’s just like, when it happens to you, you just go straight down the negative tunnel and … that’s all you see. … And with that group, it just brought me back, and it helped center myself to get more focused with everything. Today, Alex feels that he has “outgrown” the support group, but he continues to attend as a way to give back to others. I continue to go because there are other people who aren’t as comfortable with it and are at the same level as I am, and it helps me to see other people be at that comfort level. So that’s part of the reason I go when I can, because, I mean, you can’t get from A to B without seeing someone else doing A to B. Word Vomit: Being HIV Positive at GFI Initially, being diagnosed with HIV made Alex very depressed; he found it difficult to get out of bed every day. “In the beginning I thought about it every day, like five times a day. And it literally consumed my life.” As a result, he missed classes and lost his enthusiasm for his coursework. Some friends became concerned. One woman, who shared several classes with him, acted as an intercessor on his behalf with instructors. Her negotiations with faculty allowed him to pass the quarter. Alex did make contact with a “student services counselor,” but found the individual indifferent and seemingly inconvenienced. The school official only provided him with a website URL. For approximately six months, Alex remained in an “angry depressive state.” A chance class assignment led to a turning point for Alex. In one of my classes we had to … pick a poem or something, and it had to be relatable to us at that time. And I honestly don’t even remember what poem I picked. … But, after I said it, the teacher asked me, “What does this have to relate to you? It’s so dark and deep.”… I remember I took about a good, maybe, thirty seconds. And I took a deep breath and I had to ask myself, “Alright, well, do I want to do this? Or do I not?” And then the next thing I know, I just started spilling my guts out. I was very all over the place about it, and I pretty much just had a word vomit, and I spilled to twenty classmates and my teacher that I was positive. And it was just a big sense of relief; I just felt really good about myself, so good to the point that I went home later that night, made a YouTube video, basically coming out again that I was HIV positive. [I] posted it on my

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Facebook for my entire family and friends to see, and honestly it was the best thing that I ever could’ve done. The instructor thanked him for sharing his story, and moved on. Alex appreciated that she didn’t dwell on his story. Afterwards, two classmates approached him and offered their admiration and support. Still, Alex tends not to disclose his status to other students even months later. I haven’t really been open about it as much as I was in the beginning, … mainly just because I reached the point of where … I don’t have to be as verbal about it, I guess. … I don’t have to prove myself anymore, I guess. I mean a part of me kind of wonders if I’m being a coward in not talking about it as much, because … how can you expect something to change if you don’t talk about it, or you don’t try to educate people about it. I mean I do go to a fashion school, so it’s like if I’m wearing something that came out two seasons ago, it’s judged. … I thought about opening that can of worms, … but … I don’t have the energy … right now. Still, Alex has had a positive encounter with a concerned faculty member who noticed his change in demeanor and frequently asked him how he was doing. For several weeks, he dismissed her inquiries, but given her determination, he eventually emailed her a link to his YouTube video confession. She responded with a supportive email and a hug the next time they saw each other. She continues to inquire about his well-being when they meet. Since then, I’ve gained a lot more confidence and I am more happy with myself but there are still times where my insecurities about having HIV have gotten the best of me and have kind of hindered me from a couple of things. I’ve just always stayed positive about everything and tried not to take things so seriously and not be too self-critical. I mean I still have my bad days every once and a while where I just kind of want to cry for a minute or two and just be like, wow, this, this is my life; like, I am positive. … I mean, … I’m actually glad it happened. It’s made me a much, much better human being and individual than I ever was before. … I don’t say it was a wakeup call, but it just awakened a part of me that should have been there from the very beginning. But, because I got so off track with … my morals and what I believed in, in the sense of what I wanted to do with my life and what I felt was right and what was wrong. … [HIV] just kind of put me back on track to where I feel I always could have been and what I should have been.

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Being HIV positive also impacts Alex’s relationships. He’s found a great deal of rejection among potential romantic and sexual partners, although he was in a relationship with another HIV positive man for several months. One particular story with a friend, however, illustrates the kind of stigma Alex has experienced when getting to know new individuals. But we were trying each other’s drinks, and after I said that I had it, the guy took his drink and dumped it out and got a new one. And I looked at him and was like, “You’ve got to be fucking kidding me! Like, are you joking me right now?” And … I just went psychotic and cussed him out, and I made a huge scene, and I got so fucking angry. Ebb and Flow Alex’s life is very hectic with fourteen hour long days filled with school, homework, and work. Often, he only gets four or five hours of sleep. Although he feels differently about being HIV positive than from his diagnosis a year ago, living with the virus still impacts him significantly. One of my classes, I’m scared that … I might fail it. … That’s $2,000 down the drain. … But then … I have been through so much in the last year and a half. And I had a deal with being positive … while being in school and while working full time. … [So,] I told myself I am not going to be mad about failing one class because, if anything, I should have failed two whole quarters worth of classes when I was going through all of this stuff and I didn’t. … My two best girlfriends, the nurses, that’s what they always remind me [about] when I talk to them. …And I’m just like, “Yeah, yeah, you’re right! … I’m pretty fucking awesome for getting through all this and not giving up, but then, a few hours later when I’m doing a project, I’m like, “I’m a fucking idiot.” I can’t fail a class. … I don’t think I could die tomorrow, but it’s just like I don’t know what could happen next. … I’ve wasted so much time thinking that I just had all this time in the world and not realizing how life can be so short or anything like that. … I always thought that … I would have a miracle and then everything that I wanted would just fall into my lap. And then when I found out I was positive, … I was just like, okay, like what am I doing with my life? … It just made me want to do the best that I could so I could be proud of myself for once. Alex sees a number of possible futures for himself in the fashion world. He is considering climbing the fashion ladder in “a world branded clothing company” or joining a start-up where

120 he can exercise a great deal of creative control. He tends to favor the risk and uncertainty of a start-up to demonstrate his capabilities, and because he enjoys the “fast-paced, always trying to be on top of your game and ahead of your competitors” challenge. His drive to achieve is partially fueled by being HIV positive. I mean tomorrow HIV could be made illegal, and anybody who has it is locked up or killed like the Holocaust, so … I don’t want that day to ever come, and me be like I didn’t do this, or I didn’t accomplish that. In addition to thinking differently about his school commitments, Alex finds that living with HIV has changed his entire worldview I used to literally think I was the hottest thing that’s ever walked the face of this earth, and you could not tell me differently. Even on my worst days, I would still think that I was the sexiest man alive. And it was arrogant and it was cocky, and … I was okay with it. But now, it’s nothing like that. Every once and a while I may feel like I’m hot shit or something like that, but that’s on a really, really good day. My friends say it’s karma’s way of punishing me for … thinking that I was God’s gift to the planet Earth and every gay man, and it’s just like, “It makes sense.” It makes you reexamine your life because it’s just like, what have I done? What, what good have I done? What bad have I done? What could I do differently? What do I need to do? What do I want to do? Kris: It’s Intense Highly intelligent, thoughtful, caring, extroverted, effervescent, and often loquacious, Kris, a 22 year old Black gay man, is an activist at heart. Highly motivated and self-sufficient, Kris has been living with HIV for four years. As a teenager, Kris’s father relentlessly tormented him for being gay, including several efforts to beat or train Kris into heterosexuality, and trying to smother Kris to death. When he discovered that his father was planning on abandoning him during a family vacation many states away, Kris fled his father to go live with his mother. Today, he is a fifth year senior, graduating in 2014 with his Bachelor’s in sociology at Holland University (HU), a predominantly white, mid-size public research university in the Southeastern United States. An Orientation Leader for two non-consecutive years, Kris started his first term as a Student Government senator in the fall of 2013 and pledged into a progressive Greek organization. Kris believes he was infected with HIV while in a relationship with another man

121 during his first year of college that he presumed was monogamous and hoped to be long-term, although “to this day he has not said that he is HIV positive.” A Love Zone The annual International Festival in Kris’s college town provides him a space where he feels optimistic, included, and connected with people. You get people from all over the world. It’s a love zone; people are all about peace and coexistence. I feel like everybody is beautiful, and I love myself, and I see it in myself so it’s easy to see it in other people. Spaces of acceptance are important for Kris, or “Mama Kris,” as he’s known to some friends. His kind and compassionate disposition causes him, when he has the resources, to provide shelter for homeless friends and, at all times, just to lend a caring ear. Kris strongly believes in understanding the world through other peoples’ eyes. He also works in more formal ways to create spaces of acceptance through the various positions he holds on campus. This year he is working on providing a forum for underrepresented groups on his campus. Yet Kris finds himself on the outside of the gay and Black communities on campus and in town. Kris prefers going to bars catering predominantly to straight people because he doesn’t “fit this stereotypical image of being a buff, bold gay man that wants to talk about other men and can’t dance.” He also encounters a great deal of racism: “I experience so much discrimination in the gay community that I don’t understand. … So many guys are like, ‘I don’t date Black guys. I don’t like Black guys.’” As a gay man, Kris feels unwelcomed among heterosexual Black men. Being a gay Black man it’s hard to be gay and Black at the same time. You’re either Black, and you harass other gay men, or you’re gay, and you don’t really fit in with other Black men. For example, I went to festival and I was completely fine. Everybody loved me, and the only people that harassed me were Black people—because I was gay. Because I was a Black man wearing relatively tight clothes and walking around with a hula hoop. It’s really hard for me to identify with other Black males who aren’t gay. Sometimes I feel scared or intimidated by other Black men. Straight Black men will treat gay white men completely different than they’ll treat a gay Black man, completely different. For a white guy they might not make a big issue out of it, but for a Black guy, you will never hear the end of the story, its non-stop harassment. Even though I don’t

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identify with the African-American community, I’m still discriminated against because of it, and it’s not going to stop. Being gay and Black, I have to work twice as hard to get respect from anybody. I identify more with being gay because I’ll find more acceptance being gay, as opposed to finding acceptance being Black. Living with HIV creates further barriers to inclusion for Kris and is a source of shame for him. Being HIV positive is—sometimes I fear talking about it to other gay people because I don’t want to become a social leper. It has such a negative connotation to it. I can’t get past the negativity of HIV—it’s the way people talk about it. It’s all about perspective, and I can’t get past the point of viewing HIV as having poisonous blood. It’s like I’m toxic. The Way People Talk About It The ways in which people talk about HIV are limited at Kris’s university, much like other participants. There have only been a few times Kris has encountered discourse about HIV in his university when he did not initiate the conversation. One of those exceptions was in some classes. A little over a year ago, a course on death and dying provided him a new opportunity when his instructor had a woman living with HIV for seventeen years as a guest speaker. This caused Kris to start to rethink how he felt about HIV. We talked about people who were actively dying. We’re all dying; it’s just that some of us are dying more actively than others. It puts things in perspective; for the longest time I brushed being HIV positive under the rug, but I shared with my class that I was HIV positive. That was the first time that I had talked to people about it; that I had discussed it openly, and so it made me self-identify as a person with HIV. Although most of his classes did not deal with HIV, some classes have provided Kris conceptual tools he finds energizing and exciting. Kris is currently taking a sociology research course where he has begun to learn about LGBT activism, intersectionality, and queer theory. These topics have caused Kris to see his activist work as waking up sleeping people in a burning building and have also started to help him frame his life within a broader framework of institutional and social power structures.

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I Heard He Was Sick Outside of class, Kris witnessed one conversation and was participant in another with students about HIV/AIDS, each provoking a different response from him. An early encounter where he overheard some student athletes left him conflicted about how to respond. I feel like there’s a certain stereotype that comes with being HIV positive. Like, if you’re HIV positive, then you’re sexually promiscuous, or—it’s a way that people say the word sick. A couple years ago, some football players [were] talking about a guy who’d contracted HIV and they were like, “Yo, dude, I heard he was sick, brah. I heard he was sick. Aw, his life is fucked.” Being around that kind of atmosphere and hearing people make AIDS jokes, I mean I’m perpetuating it by not saying anything about it, but I feel targeted if I do say something about it. However, a more recent encounter with another student prompted Kris to begin a dialogue. One of my classmates was like, “High five for being HIV negative.” And he high-fived this other girl, and then he looked at me and I’m like, “You have to be careful of the things that you say because they can be slightly offensive.” And he was like, “What do you mean?” And I’m like, “I’m HIV positive.” We had a thirty minute conversation. It wasn’t awkward; it was just different, but in retrospect I’m thinking, “Man, that was kind of bold.’” Kris’s friends provide a different kind of challenge regarding his HIV status. Although they may listen to him briefly, most avoid discussing it, or change the subject when Kris brings the topic up. I’m still trying to identify with it [HIV]. In the past I’ll tell my friends. And none of them ever talk about it and none of them ever bring it up or none of them ever ask about it. It’s the most hush-hush thing ever. I used to talk to some of my friends about how I would go to the doctor and those fucking days where I would have to go and they would draw blood, like six or seven or eight vials. It’s just like, fuck! So much blood. I remember this one really bad experience where this nurse jabbed me four times because she couldn’t find a vein. And I remember coming back and telling one of my friends about it and they immediately changed the subject after I was done talking about it. Even that little stuff, it invalidates me and it invalidates my identity. If I talk about it more, I can slowly integrate into my full-time life to where it’s something that I’m comfortable

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with talking to other people about because it is something that is a big part of my life. It falls into the same category like being a male, being Black, being gay, being HIV positive. It’s all those things I’m going to live with for the rest of my life; I can’t really do much about it. Much like his interactions with students, Kris’s interactions with university officials have produced mixed results. Things Happen to People All the Time Kris was diagnosed with HIV during the spring semester of his freshman year in college. That summer, he worked as an Orientation Leader. Tim, the Director of Orientation, “was a good role model for me as a gay man; he’s proud of being himself, he’s not scared of anything.” Kris had difficulty coping with his new status, but found Tim very supportive. Tim “helped me out when I couldn’t help myself out.” Despite Tim’s support, Kris had an “intense emotional breakdown” the fall semester of his sophomore year. “I felt like my grades were suffering, and my relationships with people were suffering, and then I had to deal with the fact that I had HIV.” During this time, Kris experienced disorienting side-effects from his antiretroviral drugs. I couldn’t function. I legitimately could not go to class and pay attention or I couldn’t have a conversation with people. I cannot go from that student in class where professors are, “You’re exactly what I want in this student” to being the student that can’t even follow sentences in class. That hurts me. When he tried to talk to one of his professors about HIV complications, she responded, “Oh you contracted HIV? Well, you have classes, you have work to do; you’re an adult, you need to grow up. This is your life. Things happen to people all the time; you need to get over it.” Kris used alcohol and recreational drugs heavily during this time until a bad trip with an experimental drug caused him to change his behavior late in the semester. He lost his sense of self during this time. It was a time where I couldn’t grab a hold of myself; I had no self-identity, and I couldn’t figure out where I belonged, and I felt like I was dirty. I felt like I was completely and utterly worthless to everyone. I didn’t feel like a leader anymore; I didn’t feel like I was capable of doing anything anymore. I felt like I was abnormal. Now, several years later, Kris began his first term as a senator in HU’s student government. He started initiatives to bring together underrepresented student organizations;

125 update the university’s sexual harassment policy, and to re-start a defunct Safe Zone program. He maintains a busy schedule trying to implement his vision, but he questions the support of the institution: “We pride ourselves on being a very diverse university, but where are the faculty and staff reaching out to support us?” Being Easy with It Today, Kris is more active in contributing to and shaping the discourse about HIV/AIDS at his institution. However, sharing his status is always an uncertain and potentially perilous endeavor. This is like coming out all over again because I never know how people are going to react to it. I’m normally bold and in-your-face and, “This is who I am, take or leave it!” Right now, I guess I’m easy with it. A lot of friends know; a lot of my professors know. I went to retreat this year for orientation staff, and I told our whole staff that I was HIV positive: there’s forty-four people. That helped me with coming to terms with who I am and identifying about it. I wish that I could make a big deal out of it as I make out of being gay, but I don’t because my fear of rejection is only paralleled by my fear of being lonely. There are very few people around here that have a problem with me being gay. But I know as soon as I say something about being HIV positive, it’s going to become this massive issue, and I don’t want that. I am not ready for that. In one conversation, Kris told me, “I feel like I’m still rejecting the idea that I’m HIV positive. But at the same time, in other instances, I’m not.” Kris describes living with HIV as “being in the closet, when you come out to people, they ostracize you for it. I feel like being HIV positive makes less of an impact on your life than being gay because it’s, I don’t know, maybe it does, but it’s just that being HIV positive is more private than being gay, and—no, no, no it doesn’t, that is not true. I don’t know.”

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Chapter Five: Interpretation and Analysis Overview of the Analysis The narratives of these men relate the complexities of living with HIV, in particular the ways gay identity and HIV/AIDS intersect. They also reveal—in the midst of stigmatizing, indifferent and contemptuous treatment—the possibilities for self-cultivation against and within stigmatizing and oppressive AIDS discourse—or lack of discourse. Although the medical, political, and cultural landscapes have changed dramatically over the decades, the discourses these men must engage seem to result in experiences, reactions, and feelings not that far removed from accounts of American HIV positive gay men even at the height of the AIDS epidemic. Although all these men now have access to life-prolonging medication (i.e., ART), and are unlikely to die from AIDS-related complication, concerns about dying nonetheless often sneak into the thoughts of several of them. Perhaps most peculiar for a study focusing on a higher education context is the profound lack of stories about these men’s college and university experiences. In the following interpretation of these men’s narratives, I focus on three facets of their stories and discourse that serve as the underpinning of understanding how these men craft their selves in relationship to HIV/AIDS. First, I examine the lack of discourse around HIV/AIDS in the institutions of higher education these men attended. Second, I use the concept of affect to understand the ever changing, sometimes contradictory ways these men described their relationship to HIV/AIDS. And finally, I describe these men’s shared subjectivity—their common self-cultivation—as an askēsis of shame. In order to understand why I use affect and shame to describe these men’s discourse and self-cultivation, I must explain the historical, societal, and institutional context of these men’s lives and discourses. Therefore, I begin by looking at the discourses these men encountered in their institutions of higher education, while also framing higher education as an institution within a larger social-political web of discourse. The Sound of Silence: AIDS Discourse in Higher Education The resounding feature these nine men’ stories relative to their time in an institute of postsecondary education is the profound lack of discourse around HIV or AIDS on their campuses—or, more precisely, their lack of experiencing HIV/AIDS discourse on their campuses. As their narratives demonstrate, there is not total silence on HIV/AIDS. Indeed, some of them attended classes that included HIV/AIDS as a topic; some saw a flyer or two on campus bulletin boards; and some of them encountered other students talking about HIV/AIDS.

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For instance, Kris shared his status in a class, after several years of living with HIV, when an instructor had a HIV positive woman speak in class. Many participants contended with other men’s perceptions about HIV on online dating and hookup sites, although these were not always other students. Yet, very rarely did they encounter institutional discourse on HIV/AIDS—that is, discourse generated or sponsored by the college or university as an entity, rather than by its diverse, individual members. For example, Bill noted that he never saw acknowledgement of World AIDS Day anywhere at his university. Kris mentioned that his campus orientation program had a safer sex education component that included HIV as part of a list of sexually transmitted infections, but that this educational skit was being dismantled when he intervened to save it. Charles found support in the research hospital of his university (although certainly the hospital functions more as a medical institution rather than a representative division of the university), but was frustrated in his dealings with the disability services office when trying to secure academic accommodations. For the most part, participants experienced discourse—when it existed— because of individual actors in the institution, and mostly when they initiated that action. Participants by and large encountered HIV/AIDS discourse because of their own initiative. Alex, Aiden, Josh, and Kris at various points shared their HIV status in a classroom setting, or with an instructor or university staff member, or with other students who were friends. Daniel, Tony, and Kris contributed factual and historical information about HIV/AIDS to other students in classes or in workshops, whether they shared their status or not. Daniel did not often reveal his HIV status to classmates, but helped to infuse information about HIV—and LGBT issues—into his classes: “HIV really wasn’t a big part of [the program]. Now, of course, in the classes I attended, it was infused because I shoved it.” Tony actively spoke in various classes and residence hall programs as an HIV positive individual. Alex, Aiden, and Josh took class assignments—which were not related to HIV/AIDS—as opportunities to explore and share their recent change in HIV status. Kris shared his status privately soon after diagnosis with his then orientation director and with an instructor, with very differing results. A few participants did encounter discourse around homosexual, gay, and/or queer culture, issues, and theories (and some participants added to these discourses as well). Because of the strong discursive connection in the United States between male homosexuality and AIDS, participants who had access to gay affirming or anti-homophobic discourse found avenues for

128 resisting or rethinking stigmatizing and oppressive AIDS discourse. Aiden and Kris had the most access of all participants to these affirming discourses in the collegiate environment through courses, conferences, and student organizations. Specifically, Aiden used conferences and the gay and lesbian student organization to help build a purpose around his gay identity and his status as an HIV positive individual. The resources available to him here shaped his decision to focus on his sexuality as a central and driving identity (over, for example, his Filipino racial and ethnic identity); consider careers centering on LGBT or HIV/AIDS issues and people; and becoming more involved with AIDS and queer activism. Kris, already very involved on campus, found his passion for social justice renewed and energized by new conceptual tools when researching queer visibility and other queer and lesbigay (i.e., lesbian and gay) theory. Additionally, these ideas seem to have impacted how Kris thinks about being HIV positive. Seeing themselves as gay men worthy of dignity and valuable contributors to society seems to have translated into Kris and Aiden seeing themselves more deserving of dignity as HIV positive individuals. Just as campus and academic discourses impacted Aiden and Kris, the discourses of the larger United States gay and lesbian movements clearly impacted several other participants, but here I focus solely on what was available relative to the collegiate environment. And, of course, the larger political and social discourses clearly impacted what was available on campus (D’Emilio, 1992; Dilley, 2002; Rhoads, 1994, 1998). Certainly, the lack of AIDS discourse these men experienced may reflect a lack of representations and discussion about AIDS in larger American society. Certainly, it is difficult to ascertain just through these men’s experiences—and the lack of literature directed to higher education concerning HIV/AIDS—the degree to which higher education as a whole does or does not generate AIDS discourse. Keeling (2002) maintains that HIV/AIDS was, at one point, a concern for higher education, but, over time, institutions became increasingly disinterested, which mirrored the increasing disinterest of larger society: During the 1980s and early 1990s, HIV/AIDS was a very visible issue on most campuses. Many institutions appointed task forces, developed policy statements (most of them opposing discrimination against students with HIV), experimented with various prevention activities (most notably, peer education programs), and implemented HIV risk assessment services (sometimes including HIV antibody testing) in their health or

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counseling centers. … As the 1990s wore on, however, HIV/AIDS became less important on campus, just as it became less critical to most Americans. The anticipated “breakout” of HIV into the so-called general population never occurred … and the development of better antiretroviral therapies … seemed to reduce the perceived danger of infection. The sense of HIV/AIDS as a “crisis” dissipated. … By the mid- to late 1990s, few students would choose to attend “AIDS talks,” most campus task forces had stopped meeting, and the HIV/AIDS-specific educational programs, including “AIDS peer educators,” had largely disappeared. (pp. 189-190) So, while some institutions of higher education did at one point seek to address the presence of students, faculty, and staff living with HIV on their campus, according to Keeling (2002), the interest and perceived incentive in doing so drastically waned, if not completely vanished. If this holds true today, it would certainly parallel the larger shift in the public sphere in discussing HIV/AIDS. In 2013, thirty-five LGBT and AIDS organizations sponsored a joint open statement that concluded with: One in five gay and bisexual men are living with HIV in the United States. Despite these alarming statistics, which have galvanized our community in the past, the HIV epidemic has seemed to fall by the wayside. Many in our community have simply stopped talking about the issue. This must change. (“We the LGBT,” para. 4) In his address to a conference of LGBT lawyers, Schoettes (2013) endorsed the above statement and admonished his peers, “Like a large swath of the more privileged members of the LGBT community, to resist the quite natural desire to ‘disown’ HIV/AIDS as a health crisis centered in our own community” (para. 14). Schoettes (2013) cited one of the founders of ACT UP, Charles King, about this political disavowal: I really truly believe that the LGBT community officially abandoned AIDS with [Andrew] Sullivan’s article in the New York Times [entitled “When Plagues End”], and the reason they abandoned it was: for them it was over. It was now a black disease, not their disease. (para. 45) If Keeling (2002) is correct that higher education lost interest, then it seems unlikely that universities and colleges would have re-engaged HIV/AIDS discourse in any meaningful way given the diminishment of the threat of a perceived epidemic on campuses, and no incentive to renew the interest of institutions given the larger political slide into silence and shift of priorities.

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Even though universities may deal with HIV/AIDS under the more general umbrella of chronic illness, institutional procedures and processes for accommodation may create oppressive conditions (Jung, 2002). Identifying as chronically ill alone—much less HIV positive which carries an additional moral stigma—can subject students to “normative, prognostic, and diagnostic judgments that are inescapable” (Jung, 2002, p. 196). Therefore, the participants’ lack of encounters with institutional discourse about HIV/AIDS does not seem surprising. Breaking Silence Of course, it’s unlikely that all institutions are silent, or more precisely, that not all institutions are silent all the time, nor are individuals in the institutions. For example, in August 2013, Georgia Southern University issued a campus alert about a “masculine and dominant” African-American man “intentionally infecting his sexual partners” based on an anonymous tip (“Georgia Campus,” 2013). Although the dean of students at the university claimed officials believed the threat credible, the existence of such an individual remains unsubstantiated. Rightly so, the university received a great deal of criticism for its unfounded promotion of racial and sexualized stereotypes of gay men and promoting stigma against those with HIV/AIDS (“Georgia Campus,” 2013). Fortunately, the men in this study did not encounter troubling discourse of this kind sponsored by their institutions. In contrast to this striking case study, on the rare occasion participants encountered institutional representations and discourse, it tended to be rather benign. For instance, Tony mentioned that his university sponsored a World AIDS Day event. Other universities likely do the same, even those attended by participants, who may simply not have realized this. Bill, Kris, and Josh encountered representations of HIV positive individuals in various courses they attended. None of the men found the classroom material troubling. Kris seemed to find the discussion in his class helpful, in fact, in making sense of his life with HIV. Tony regularly speaks as a guest for a course on HIV/AIDS at his university. Non-institutional sanctioned discourse also clearly occurs. How fellow students discuss HIV/AIDS makes an impact. One of Josh’s classmates made an AIDS joke before she knew his status, and Kris overheard or encountered other students problematic statements (e.g., his classmate who high-fived other students for their presumed negative status) about HIV/AIDS. Both Josh and Kris confronted their classmates on these statements with successful results, although the initial statements certainly hurt. Sometimes, however, Kris—who often takes

131 opportunities to educate people about HIV—understandably chose to avoid confrontation, such as when he overheard some athletes say about another student with HIV, “I heard he was sick. … His life is fucked.” The decision of whether or not to disclose both when others spoke and when others did not often proved to be a weighty one for the men in the study. Non-Institutional Forms of Silence More commonly, participants had to initiate discourse about HIV/AIDS in their institution, such as when asking for instructional accommodations (e.g., Tony, Kris, Charles), or inquiring about travel abroad (e.g., Bill), or disclosing during class assignments (e.g., Josh, Alex) or wanting to educate classmates (e.g., Daniel). Responses to these disclosures ranged from the highly supportive to the profoundly oppressive. The decision to disclose—whether on a case by case basis or across the board—generally occurred, however, in a vacuum of information. Therefore, attending to the predominant lack of discourse encountered in this dimension of university life is very important. Bill and Aiden both expressed that he doubted that they were the only person with HIV on campus, but had no way of knowing how many or how. Bill commented on how not knowing how his friends feel about HIV impacts his decision-making. For instance, he wanted to have a sexual encounter with a fellow student, which, for Bill, would require him to disclose his status. But this student and Bill shared a mutual friend; Bill has for now decided not to act on his interest because he’s unsure if this individual will share his status with the friend, and Bill does not want to jeopardize their friendship. Probably the best illustration of this kind of silence comes from Kris’s discussion of how his friends avoid talking with him about living with HIV. I’m still trying to identify with it [HIV]. In the past I’ll tell my friends. And none of them ever talk about it and none of them ever bring it up or none of them ever ask about it. It’s the most hush-hush thing ever. I used to talk to some of my friends about how I would go to the doctor and those fucking days where I would have to go and they would draw blood, like six or seven or eight vials. It’s just like, fuck! So much blood. I remember this one really bad experience where this nurse jabbed me four times because she couldn’t find a vein. And I remember coming back and telling one of my friends about it and they immediately changed the subject after I was done talking about it. Even that little stuff, it invalidates me and it invalidates my identity. If I talk about it more, I

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can slowly integrate into my full-time life to where it’s something that I’m comfortable with talking to other people about because it is something that is a big part of my life. It falls into the same category like being a male, being black, being gay, being HIV positive. It’s all those things I’m going to live with for the rest of my life; I can’t really do much about it. Given the pernicious consequences of disclosing their status to peers, instructors, and staff, the decision by many of these men to remain judicious about whom they disclose their status to is more than understandable. Yet this creates a bind for them; if they do not disclose, they have no way of knowing if some individuals may indeed offer support. Participants were keenly aware of this, and several felt a duty to disclose to help educate others, even when they chose to remain safe by not doing so. The impulse to out themselves—even when they did not act on it—mirrors the outing discourse of gay/queer liberation politics, including AIDS activism (Fetner, 2008; Patton, 1990). Coming out has been positioned by many activists as an “inherently radical political act that would change negative public opinions about homosexuality,” (Fetner, 2008, p. 19-20). However, as Crimp (1993) argues, time has shown that this “outing fantasy … was only a fantasy after all, and a dangerous one at that” (p. 308). To come out is “not an escape from power; rather it [is] an entry into a different realm of power” (Dow, 2001, p. 135). Coming out also presents complex obstacles and limitations for people with non-/invisible disabilities (Samuels, 2003). Accordingly, these men’s quandaries and hesitancies about disclosing their HIV status are well founded. Notable and related was participants’ silence in interviews about HIV/AIDS in their institutions. Near the end of our series of interviews, several of the men had said nothing about being HIV positive as college students, and I was required to ask them directly about this directly. Not bringing this up in interviews was usually an effect of participants not having personal experience in the institution related to being HIV positive. Only Aiden and Kris, versed in queer political discourse, seemed to consider the institutional lack of information about or support for those with HIV. This illustrates the effectiveness of institutional silence—it renders its own lack invisible to the very people most impacted by it. The Effect of Silence and Silence as Effect What is difficult to tease out is what discourse within the confines of the institution contributed to participants’ subjectivity and which did not—this may be the equivalent of finding

133 particular strands of hay in a hay stack—but what can be said is that silence is significant. University discourse is clearly among the influential discourses informing many of these men’s subjectivity, and certainly their experiences as students. These men had to make important decisions about if, how and when to disclose, and to whom to disclose, about their status, frequently taking risks that they would be rejected or discriminated against by instructors, university staff, other students, and potential partners. Silence, like all forms of power/knowledge, provides an opportunity for resistance and for shaping the self (Foucault, 1990). Silence is simultaneously stifling and empowering. Silence is a void that can be filled—as when participants educated others about HIV/AIDS or used class assignments to understand their relationship to the virus— or that can drain away a sense of self or security—such as experienced by Kris and Bill. When universities or colleges are silent about HIV/AIDS, more than producing effects itself, such silence may be considered itself an effect of—or at least inexorably intertwined with—the larger social discourses around AIDS and compulsory able-bodiedness (McRuer, 2006). If Dean (2000), Yingling (1996) and others are correct in their position that heterosexual society has done its best to distance itself from the specter of AIDS and to affix it forever to homosexuality, then higher educational silence on HIV/AIDS communicates that, indeed, AIDS is not something of concern to the majority of its constituents. Likewise, compulsory able- bodiedness demands that students cover their fatigue, medicinal side-effects, or even their HIV status lest they be judged inadequate as students or emerging professionals. Despite protection afforded by the American with Disabilities Act, as Josh pointed out, reasons can always be found to dismiss a student who fails to meet expectations. And to identify within the university as having HIV, or any chronic illness, may not only fail to yield needed support, but end up subjecting students to harsh judgment and additional hurdles (Jung, 2002, 2003). Educational silence reifies the university as the domain of undiseased heterosexuality. Queer or non-able-bodied sexuality can exist, of course, within the sphere of the university, but only in the most institutionalized ways that flatten difference and regulate its expression (Ferguson, 2012). As Love (2007) argues, One may enter the mainstream on the condition that one breaks ties with all those who cannot make it—the nonwhite and the nonmonogamous, the poor and the genderdeviant,

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the fat, the disabled, the unemployed, the infected, and a host of unmentionable others. (p. 10) The gay student, the HIV positive student, and certainly the HIV positive gay student— not to mention those students of color—exist within the gates of the academy but do so long as they leave the structure of the university unchanged. Even though some chose to make themselves known, the institution as a whole resists disruptions to the status quo. Both Aiden and Kris, strong campus activists, have both encountered difficulties in instituting programs that would support other HIV students or educate other students about HIV. While they both have managed to make some inroads, structural or broad-based changes elude them, despite their efforts. Early discourse in universities concerned itself with managing a feared epidemic on campus. With that fear dissipated, universities can now go about business as usual if they wish. Regulated and institutionalized forms of AIDS discourse may be permitted, but to what degree do they acknowledge that the students on their campus are living with HIV? The silence or limited discourse of participants’ universities around HIV/AIDS leaves heterosexuality and able- bodiedness unthreatened. In addition to creating this effect—at least partially—in higher education, AIDS discourse and compulsory able-bodied discourse impacts the way these men discuss themselves and formulate their selves in relationship to HIV. Cultivation of the HIV Positive Gay Male Self Understanding the Cultivation of the HIV Positive Self Having now examined the silence faced by these men in their institutions of higher education and how that silence is both a condition of and parallels a larger societal silence, I now consider how the men in this study have responded to this cultural position. These men employ a range of discourses, drawn from varied national and local communities, organizations, localities, faith traditions, institutions and other sources. Although some commonalities existed among certain men in the ways they described their relationship to HIV, no singular perspective existed. Some men used similar community discourses (e.g., Alcoholics Anonymous (AA), gay pride/liberation), but, again, no one source of discourse was common to all the men. Living with HIV as a gay man seemed to be an incredibly varied experience. I entered this study with two primary research questions: (a) what are the cultural discourses that gay college men living with HIV call upon in their expression of their relationship to HIV/AIDS, and (b) what are their

135 practices of self-cultivation (i.e., the self’s relationship to the self). But, I struggled to find any common practice of the self among the participants. An interview with Josh changed my focus. Rather than continuing to look for common language or rhetoric among the men, I began paying attention to the underlying principles or structure of how these men discussed their lives, based on a statement Josh made about half-way through our interviews. Josh stated that waking up HIV negative tomorrow would likely necessitate an entirely new way to approaching and organizing his life. Josh has been HIV positive for seven years, and more importantly, for his entire adult life. He found out he was HIV positive a few weeks into starting college. Because of this, the virus has impacted every dimension of his life, and its removal would mean that a certain logic, a certain rationale, a particular filter would be gone. He stated: My entire adult life I’ve been HIV positive, it’s been almost eight years .… That’s over 1/3 of my life, so I identify in a way as a HIV positive man. So to have that taken away, not that it’s not worth taking away, but it would take adjusting. Because a lot of how I’ve developed and a lot of how I’ve identified myself and how I deal with people kind has stemmed from that. If someone were to say here’s a cure, I would definitely do it, but I feel like I would probably need to go to a therapist at the same time. Maybe … I would feel—the biggest thing would be because I have become relatively guarded, and most of that guarding has been around my status so it would be, like I would be guarded for nothing. I’m not even sure how it would change me, I—I might be slightly distraught for a bit. Once Josh offered this insight, I began asking other participants how their life would be different if they were cured of HIV. After discussing this topic with participants, my thinking that HIV operated as a kind of philosophy on life again shifted into realizing that not only was the way different men described their relationship to HIV significant, but so was each man’s changing, seemingly contradictory discourse. I found no pattern for these variations based on age, length of time living with HIV, geographic region, race, health condition, or any other discernible factor. Rather, the fact that they talked about it very differently (between interviews or even in the same interview) became apparent to me as what was most important. This shift in focus happened when my line of questioning revealed that while HIV always influenced life choices and how these men thought, the intensity to which it did so, and the

136 degree to which it operated in the forefront (or background) of their thinking varied greatly between these men, but also for each man himself. If it were not for Josh’s clear articulation of this principle, I do not know how I would have known to ask the questions I did or made sense of participants’ experiences. I am grateful to him for all his contributions, but this particular piece especially. In the following sections, I explain why I frame the expression of participants’ relationship to HIV as affective, or functioning like affect (Tomkins, 1995). Affect, as described by Tomkins (1995), is a powerfully motivating emotion with certain important key properties. In particular, I discuss these men as describing their relationship to HIV through the affect of shame. This focus is not on the way these men feel necessarily, but rather on their response to the social conditions in which they live, what Gould (2009) calls “the prevailing emotional habitus” (p. 81). To be clear, I’m not suggesting that HIV is an affect; living with HIV is not itself an emotion or feeling. Rather the way participants talk about their feelings living with HIV is affective in nature. Affect, although seemingly very personal, reflects and relates to larger social and institutional structures—in this case, cultural contempt towards those with HIV/AIDS. Additionally, affect, and shame in this case, highlights the ways in which these men navigate, survive, and sometimes thrive. The Affective Discourse of Participants Social and institutional silence works to—or is a product of the need to—expel HIV/AIDS from heteronormative society. Discourses of compulsory able-bodiedness also function to stigmatize or regulate individuals who choose to make known their limitations in their ability to contribute to capitalistic productivity or who might make demands that do not serve the needs of industry (McRuer, 2006). These types of dismissal and regulation are a kind of social, cultural or political contempt, and I refer to it as contempt going forward. Socio- political contempt creates conditions that frequently altered the degree to which HIV was in the forefront of participants’ minds and the degree to which it impacted their decision-making on a regular basis. The amount of contempt that any given participant faced on any given day—whether they experienced that contempt externally through others or institutions or felt contempt internally for whatever reason—created a great deal of variation and fluctuation for participants’ views of themselves as HIV positive individuals. Several participants mentioned that on many

137 days they might not think about being HIV positive except when they took their daily pill or when they had blood drawn (voluntarily or accidentally), an act many saw as a significant symbol of their status. Also, events that are mundane for most people, such as asking an individual out on a date or trying to build a deeper relationship with a new friend, typically served as strong reminders to the men of their HIV status. For instance, Bill wondered not only if prospective dates might reject him, but might also share his status with other people in his university against his wishes. Accordingly, these men did not describe being HIV positive in terms that suggested a stable, coherent identity as HIV positive people. They talked about HIV as being always salient, although sometimes faintly and sometimes to an overwhelming degree. Some discussed HIV as both the best and the worst thing that ever happened to them. Affect, as described in the work of Silvan Tomkins (1995), provides purchase for framing the array of discourses of and between participants. Although Tomkins’s work is based in psychology, it has great use outside of that context for understanding how the participants navigate cultural and systematic oppression (Sedgwick, 2011). Halperin and Traub (2009), talking specifically about the affect of shame, make the point that if we look “at shame as a formal property of discourse … [and] less an object, a thing to be claimed or reclaimed, than a dynamic, then it is not only a matter of psychology or politics but aesthetics” (p. 24). Yet, this statement applies more broadly to affect as a concept. And this is the claim I am making: that affect serves as a framing concept for broadly thinking about the structure of participants’ discourse. Although participants could have expressed a number of different affective discourses or affective styles, in this study participants’ particular affective structure—that is, the way they describe their cultivation of the gay male HIV positive self is what I call an askēsis of shame. After discussing affect as a broad frame, I then explore shame as the specific affective domain of participants’ discourse. Tomkin’s Theory of Affect Even in its original psychological context, Tomkins’s (1995) work demonstrates its utility for producing anti-homophobic readings. While he certainly saw affect as an embodied, universal component of human nature, nonetheless his conceptualization comports easily with a theory of the social that does not deal with claims of essentialism or human nature. Tomkins separates biological drives that are often autonomic and require satisfaction from affects, which have an uncountable number of origins, and satisfactions (Sedgwick, 2003). For example, drives

138 such as thirst, hunger, and breathing must be satisfied in order for life to continue, must be satisfied within certain time limits, generally increase over time, and they can only be satisfied by very specific requirements: in this case, water, food, and air respectively. Affects, however, are not necessary to sustain life, may be generated any number of ways (they are not autonomic like many drives), may be satisfied or not in many ways including through some of the same ways (e.g., another person’s anger may subdue or increase my own excitement, anger, shame, etc., depending on an array of factors), and may be felt at various times, for various lengths of time, with various intensities at various times (Sedgwick, 2003; Tomkins, 1995). Affect can be very powerful, but affect does not require anything of us; we are not forced to satisfy affect, and affect offers the potential of limitless possibilities and expressions. Sedgwick, in her introduction to Tomkins’s work, uses the analogy of a color wheel or the table of elements (Tomkins, 1995); we might update that today to a gradient palette for all its blurred shades. Affects, like drives, are motives, “by which we mean immediately rewarding or punish experience[s] mediated … by the individual’s own responses. [But,] motives may or may not externalize themselves as purposes” (Tomkins, 1995, p. 45). Affective responses are also learnable and unlearnable, affects are “transformable” (Tomkins, 1995, p. 61). In other words, we have control over how we—and if we—act on our affects: in regard to affect, “although any one individual’s range of variation of intensity may be congealed into a specific style, the number of different possible styles among different individuals is theoretically very great” (Tomkins, 1995, p. 51). Tomkins’s work is decidedly poststructural in its utter gestalt between what, when, and how one may experience affect and what, when, if, and how one may act on that, its non-referentiality (i.e., arbitrary) subject-object (or here, affect-object) relationship. To discuss participants’ discourse as affective means that their rhetoric, language, and metaphors (i.e., their discourse) about living with HIV/AIDS change, sometimes seemingly contradictory or paradoxically, in ways best understood through the concept of affect. Certainly, emotions are central to the experiences of these men with HIV. For instance, some clearly feel shame, and some feel enjoyment about being better directed, or being a moral or healthy person because of HIV; and most of them felt fear, anger, sorrow and/or relief upon their initial diagnosis of HIV. And although that range of possible emotional responses to being diagnosed—sometimes held by the same person simultaneously—is itself interesting and demonstrative of the affective nature of these men’s experiences with HIV, feeling is not the

139 focus here, but rather the structure of the discourse. Next, I provide examples of the affective structure of participants’ discourse, followed by a presentation of their artwork. Then, I examine the particular affect that best describes the discourse of the participants. Tomkins (1995) formulates shame as a negative affect that still retains the positive affect of interest. I discuss how participants’ engagement and re-deployment of negative and positive discourses mirrors shame in this manner. I conclude by using examples of participants’ discourse to discuss shame as a cultivated response to a social positioning, as a counter-discourse to an oppressive discourse, as a cultural practice not necessarily stemming from an emotion. Dimensions of Affective Discourse To say that the structure of participants’ discourses of HIV/AIDS is affective, I mean that the incredibly varied ways these men represent and discuss living with HIV share this commonality: HIV always drives the way they live, but does so differently at different times, with various intensities at different times that are determined by different objects, events and people. They sometimes discuss living with HIV in ways that appear contradictory or paradoxical. Under the rubric of affect, however, discourses seemingly at odds with each other are understandable because everything about living with HIV is, like emotion, variable, often with no rhyme or reason, except that it is always present in the ways they think or feel. Experiencing HIV differently. Just as we all experience affect differently, participants varied in how they discussed they ways they felt about living with HIV from each other. Some participants described living with HIV in much more negative terms than others. For Aiden, HIV is constantly present in his thinking, but has moved more to the back of his mind. Yet, still, sometimes it can return to the front of his mind. I mean it’s always in my mind every single day, but I think it’s just in the back of my head instead of always being my every thought. And I will admit now that I’m open about it … I think it’s not as much—I don’t want to say a burden—but it’s just another part of my life. … I think every once and a while, every couple weeks, I find something new, a different struggle, and I don’t really have an outlet to share them. Tony discussed HIV in similar ways. He initially felt very overwhelmed by his diagnosis, but after receiving medication that didn’t provoke an allergic reaction, he felt more in control of the virus and his life.

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Once I started on my medicine three weeks later, I was phew, gone. So I have this fear of it coming back because it was literally awful. I was in the ER four times for it, trying to figure shit out. … [I] wasn’t in school so I felt like a failure. That was kind of my demise, and once I got on meds and they started being successful, I was, ok, well, you know, I can deal with this. Aiden’s discussion of living with HIV contrasted sharply with Daniel and Jason. Daniel described a host of ways HIV regularly impacts him. [HIV] adds another level of fatalism and fear [to my childhood trauma]. I think I’m probably a little bit more hypochondriacal than I was before. It has definitely fucked me up from a relationship perspective because I already felt like damaged goods, and not good enough, and dirty and all of those things, and you add HIV to that, and the stigma that’s so pervasive. … And having to have the talk [deep voice] with someone, you know, is not fun. Jason’s outlook echoed Daniel’s perspective: Well before I got this and had to deal with any type of real discrimination other than the whole gay thing, the world seemed like a much nicer place. And then after this, it was like winter really entered my world. …You just kind of want to keep to yourself and keep as warm as possible. … Yeah, [I’m a] much more closed-up person. I don’t see people as being so friendly. Sometimes participants described their life with HIV differently at different times. Bill at one point echoed Aiden and Tony: “As far as my life goes now, it’s just, it’s part of me, it’s something I always think of, … especially every night when I take my pill. But … aside from taking better care of myself, and just being more cognizant of it, the fear of it is gone.” Then, in another interview, he described life much more like Jason and Daniel: “My own fear prevents me from telling people, which prevents me from figuring out whether they’ll be sympathetic or unsympathetic.” Bill’s differing stances on how living with HIV demonstrates that not only do participants have different feelings and ways of describing HIV positive life, but they can also— just as our own feelings, emotions, and affects do—change in intensity and in how we experience them.

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Changing intensities and experiences with HIV. Bill, of course, was not the only participant who discussed living with HIV as being different on different days. Several participants discussed how they’ve felt differently about their status over time. Alex described conflicting emotions about his shift from being very vocal about his HIV status to his more subdued approach now. I haven’t really been open about it as much as I was in the beginning, … mainly just because I reached the point of where … I don’t have to prove myself anymore, I guess. I mean, a part of me kind of wonders if I’m being a coward in not talking about it as much. Similar to Alex, although over a much longer period of time, Josh has changed how he feels about HIV. Reflecting on his undergraduate years, Josh chided his younger self for being too open with his status and overly emotional. Josh also recounted a sense of being shattered, a theme he shared with most of the other men. When I first found out, I was going to drop out of college. …Well, it would be stupid because—my mind I guess was too set in the 80’s. My mom and my dad and we all thought that I was going to die in seven years. … I was very open about it. … And I, it was … so overdramatic and just sad, looking back at it. … At the time it was what I needed to do because I was having trouble coping, so I used everyone as a springboard. I would not do it again. Although most of the men described feelings changing over time, many of them discussed how they felt about living with HIV currently as changing. For example, Kris described it as, “I feel like I’m still rejecting the idea that I’m HIV positive. But at the same time, in other instances, I’m not.” Alex discussed how he’s more comfortable being HIV positive, but still has bad days: “I’ve gained a lot more confidence and I am more happy with myself but there are still times where, my insecurities about having HIV have gotten the best of me and have kind of hindered me from a couple of things.” Jason talked about this experience also. Some days it’s the best thing that ever happened to me to be HIV positive; some days it’s the worst thing to ever happen, and it bounces back and forth from the best thing to the worst. Some days I don’t want to talk about it at all, and some days I’ll talk about it all day long with people.

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Indeterminable triggers and unpredictable responses. Jason further elaborated on these shifts. He explained that he could discern nothing that made a difference about those two states of being. There’ll be things that trigger it to where I can feel just as bad and emotionally upset as the day that I was told that I was positive. And then even within that same day, I can see a whole new light at the end of the tunnel that I never saw before. … And I don’t really know what causes that. There doesn’t seem to be any noticeable triggers. As am I going to wake up today and regret having it or am I going to wake up today and be glad? Jason’s perspective was not atypical among participants. Events, circumstances, individuals and things that triggered different emotional responses about living with HIV—or made the men more conscious of their HIV status—varied across men, but also for each man. Positive and negative emotions could result from a variety of circumstances, many unforeseeable. Other people could evoke different feelings in participants about their status. For example, Aiden felt challenged when other students complained about problems that he felt paled to the challenges HIV presented him. Conversely, an attendee at an AA meeting for HIV positive people prompted a feeling of gratitude for Daniel. There was a guy that shared a few weeks ago when I went for the first time, and he’s newly sober, probably in his mid to late 50’s. And [he] got up there and just fucking raged about HIV and how people treat him, and what it was like with people dying all the time, and I was annoyed by him. But I thought, “Wow, I come from that same time. I, we, had lost so many people.” Talking with a friend of mine that I’ve know, because, when you’re sober and you go to gay meetings predominantly, it’s a smaller world, and we were talking about how many great men there were in sobriety that we lost to AIDS that we wish we could still have with us. And I haven’t thought a lot about that for a while, either. I think, you know, I have survived that. I’m very, very, very grateful. Most participants described frequent rejection from potential boyfriends or sex partners because of their HIV status. Josh remembered a time where a new acquaintance turned on his heels and walked away from him immediately upon learning his status despite several hours of conversation preceding his disclosure. Other participants shared similar stories. Many talked about the language used by men on social/sex networking sites to find “clean” partners, and other hurtful language. A highly impactful description of how others participate in the subject

143 formation of these men comes from Kris describing his attempts to get friends to talk with him about being HIV positive. In the past I’ll tell my friends. And none of them ever talk about it and none of them ever bring it up or none of them ever ask about it. It’s the most hush-hush thing ever. I used to talk to some of my friends about how I would go to the doctor … and they immediately changed the subject after I was done talking about it. Even that little stuff, it invalidates me and it invalidates my identity. Events, not just people, could create or intensify feelings or make these men more aware of their status. Blood served as a potent signifier for the men of their HIV positive status. Jason worried about infecting other people if he were to get in an accident. Aiden was thrilled at becoming “undetectable,” the significant reduction of the presence of HIV in the bloodstream. Kris, Aiden, and Bill all mentioned the drawing of blood at medical appointments. Kris recalled one such event, and how his friends avoided wanting to talk with him about it. I would go to the doctor and those fucking days where I would have to go and they would draw blood, like six or seven or eight vials. It’s just like, fuck! So much blood. I remember this one really bad experience where this nurse jabbed me four times because she couldn’t find a vein. And I remember coming back and telling one of my friends about it and they immediately changed the subject after I was done talking about it Bill recounted an incident where a cut made him feel very visible in public. I remember the first time I was at home depot…and I remember I cut my finger, and it was the first time I had bled since I was diagnosed, and I stopped right in the aisle. And blood had dripped on the ground, and it was on, there was a little bit on this little metal thing, and … I immediately looked around and I thought, “Everybody knows.” Although the men typically discussed drawn blood as a negative symbol of their status, Aiden more serenely associated visits to the doctor for tests with the painting hanging on the wall of the clinic, which he took as inspiration for his artwork for this study. Seeing the picture on his clinical visits made Aiden feel more connected to other HIV positive people, present, past and future. As powerful a symbol the taking or spilling of blood was for many of the men, not all the participants discussed blood as a reminder of their HIV status. Josh and Alex discussed issues with people being unwilling to drink after them. Alex was enraged to the point of near-violence when a friend of a friend threw a drink away rather

144 than share it after Alex took a sip. Describing how his father still separates his drinks and food in the refrigerator from his, Josh seemed more bemused or annoyed, and certainly not angry. Conversely, Aiden initially after diagnosis worried about sharing drinks with friends because he didn’t want to make them feel uncomfortable. He tried to preemptively intervene so such situations would not arise where they drank after him. Sometimes, as Jason said, the men just had days where it was far from their mind, or something that made their life better, or something they felt cursed for having for no discernible reason. The relationship to HIV/AIDS for each man could be a very different one on any given day, or sometimes any given hour. The way in which these shifting feelings resulted in actions that varied in unpredictable ways also. Framing HIV as purpose, philosophy and incitement to change. The men described being diagnosed with HIV as resulting in various changes in the course of their lives that ranged from the intuitive and indecipherable (i.e., a general feeling that their lives had changed) to the qualitatively noticeable (e.g., enrolling in post-secondary education, realigning their values, taking better care of their bodies). Part of the rationale some men provided for these changes was based on their philosophy of why they were infected. For example, Alex and Charles took a deterministic approach that seemed to make them rethink how they went about their lives. Alex sees his status as a poetic irony. My friends say its karma’s way of punishing me for being so cocky and over-confident all these years and thinking that I can walk over all these guys and just treat people however. I mean, … I’m actually glad it happened. It’s made me a much, much better human being and individual than I ever was before. … But, because I got so off track with … my morals and … what I wanted to do with my life, … [HIV] just kind of put me back on track to where I feel I always could have been and what I should have been. Charles takes a less karmic approach, but essentially expressed the same sentiment. I knew the risks involved. … It was like, oh well, shit happens, if God wants, ok, if there is a God, if God wants me to have it, then God wants me to have it. I can only live and learn, and that’s what I’m doing. Regardless of whether participants attributed being HIV positive to some higher power or not, several of them conveyed it honed and shaped their values. Somewhat surprisingly, Aiden never explicitly stated a spiritual meaning behind being HIV positive, but he did credit it for providing

145 him a direction in life: “I think it actually … it gave me a whole lot more purpose, and it motivated me to do better, especially now after I started thinking more about grad school, I was more motivated to do better in school too.” Tony, like Alex, described being diagnosed with HIV as a turning point. After all that I’ve been through which I never thought but the weird thing is, like, me getting diagnosed was kind of my wake-up call to like, wow, you really need to get it together. You’ve already had this bad thing happen to you, and it can’t take over your life. … So it kind of woke me up to, you can’t do what you were doing. Perhaps not as profoundly altering as the other men, Josh nonetheless felt living with HIV helped clarify his values and make him more likely to voice them. Mainly it has helped me … to come to understand what I think my values are, probably sooner than I would have had I not been HIV positive. … And it’s like I kind of cut the fluff away in my life with it. Many of the men attributed becoming HIV positive in resulting in new life choices. The decision to enroll in college or to perform better academically was a common thread with several participants. These men attributed becoming HIV positive as providing both positive and negative reinforcement for academic performance. For Jason, diagnosis meant providing a focus for his academic and professional career. I knew that I wanted to do nursing, but I was just kind of fumbling through, not really making it happen. And now that I had—I really see it as I never saw the hourglass of my life visually until I was diagnosed with HIV. … I was educated enough about it to know that it wasn’t a death sentence, but it still, … was a good spark to really keep me on track and get me motivated. Alex and Bill connected their status with an intense need to succeed in school. For Alex, this was a matter of not wasting time and an uncertain future. I can’t fail a class. … I don’t think I could die tomorrow, but it’s just like I don’t know what could happen next. … And then when I found out I was positive … I was just like, okay, like, what am I doing with my life? … It just made me want to do the best that I could so I could be proud of myself for once. Bill sees not being successful in school as being another potential area of failure.

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School is so goddamn expensive; there is so much riding on it, and not to mention you throw in egos on top of it: my ego tells me that I need to be the best. … I feel that I’ve let my family down, and I’ve let myself down because not only did I fail with the drinking, … I became a statistic with that. I failed at the gay thing and I became another statistic with that. … And so I think that … I can’t fail in school because I’ve already failed. I’ve already let myself down; I’ve let my family down; I’ve let society down. Given these men’s range of responses, reactions, and consequences—men who often see HIV as contributing to good in their life while also stimulating their worst fears and doubts about their selves—the affective dimension of their HIV discourse becomes more and more apparent. Being affective in structure means that some degree of control exists over how they channel or direct that emotion (i.e., affect is a motivating emotion, but the men control how—or if—to put that motivation to work). Just as all people funnel various positive and negative emotions into productive work, being affective in structure means the ways in which these men relate to HIV stands to be put to work in resisting or working against or through oppressive and stigmatizing social discourses. Understanding HIV as possibility. Although situated among the many oppressive and stigmatizing discourses of AIDS, compulsory able-bodiedness, homophobia, and institutional silence, these men have not been passive victims beholden to social messages. Rather, they have actively worked to resist, reframe, and reconstitute them in ways that allow them to live and often thrive. In his own witty and wry way, Josh serves as a prime example. Although sincere about his outlook on living positive, Josh expressed his philosophy in a tone that implied he finds his outlook necessary, but perhaps not sufficient. It’s a really bad line, but you’ve got to live positive. Ha. Ha. Ha. [laughs] Look on the bright side of life; but it’s a really bad pun. I don’t want to say that I’m glad that I have it, but I’m glad—I’m glad that I’ve developed into the person that I am now because I’ve had it, and I’m sure five years from now I will develop somehow more. I’m glad what it’s forced me to do in my life. You … have to … have at least some form of sunny-side outlook on it, or, you’d have to kill yourself or something. Charles expressed a similar sentiment (albeit without the ironic position of Josh), contrasting his desire to thrive and prosper while his family and partner languished.

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It seems like everybody around me is wanting to die. And nobody is wanting to live their life to the fullest. … I’m trying to sit here and get myself healthy, get a job, get myself on the ball, get myself set up with [a local AIDS organization]. … Life’s a bitch, life’s always going to be a bitch, so why live it so stressed out all the time? And that’s why my motto on life became “Be light on life.” Although not as optimistic as Charles and Josh, Jason sees the deteriorating effects of HIV as providing certain abilities: “I really don’t have the energy to deal with bull crap or whatever like that. … I’ve got something wrong with me. I can say what I want to; it’s not going to matter.” Conversely, Bill focuses on the ways in which his health was improved by acquiring HIV. It’s going to sound really weird; getting HIV was probably the greatest thing that ever happened to me. And the paradox is it was—by far—the worst thing that ever happened to me. It is certainly a double-edged sword because it changed my entire outlook on life, as did me getting sober. … I’m healthier today than when I was before I was diagnosed. … Of course that’s debatable because I’ve got an ailment that’s incurable. As may be evident from all of these men, resisting or transforming oppressive discourse is complex and uncertain work. Both positive and negative affect intertwine. Even when hope and optimism seem to win out, doubt and fatalism are just around the corner. Aiden told a story about a time after his initial diagnosis that expresses the difficulty of creating counter-discourse. Aiden began watching the television show Teen Wolf when he was first diagnosed. He related to the character as someone who was also infected with a disease (i.e., lycanthropy). Yet being a werewolf meant the main character also had superhuman abilities. Aiden benefitted from the message he gleaned from this: “I was taking a lot of positive things from it, to stay strong, and … I was just starting to see life in a whole new, different perspective.” The teen wolf also had a problem Aiden related to: he was afraid of killing the girl he loved. “And … so he felt … he was cursed, and I related to that feeling. … Even though I was trying to take so much positivity from my experience, sometimes I did feel like it was a curse as well.” Sometimes, the possibilities for reframing or reconstituting the self came because of how others reacted. Contentious family relationships were altered for Daniel and Jason when they disclosed their status to their parents. The discourse of conservative, fundamentalist Christianity perhaps surprisingly worked to Daniel’s advantage when he told his parents. Although they devalued his homosexuality as sinful, they prioritized caring for the sick as a mandate of their

148 faith. Although their relationship is not perfect, this often oppressive discourse provided an opportunity for Daniel to reconnect with his family in a way he couldn’t for years (because of the same discourse). Jason’s parents found out he was gay at the same time they found out he was HIV positive. He recalled a long drive with his father soon after he moved back home soon after he found out. His father handed him a two dollar bill and told him, “I do believe you’re gayer than this two dollar bill.” What is often a snide or homophobic expression was used to create a moment of empathy. Jason still has the bill framed. The ability for these men to transform or re-formulate themselves or to reconceptualize HIV/AIDS to make their life more livable life seems possible, even if it may not be entirely successful as a strategy for fully undermining stigmatizing discourses. Finding or creating positive affects in a HIV positive life was not enough to dispel or overcome negative affects. Still, it does provide some recourse for not fully capitulating to harmful social messages. I propose that these men have cultivated a self that responds to and incorporates positive and negative affective discourses in formulating a livable life as HIV positive gay men. The Affect of Art Prior to discussing the men’s self-cultivation, I present more evidence for the affective structuring of participants’ relationship to HIV/AIDS. I find a great deal of the affective nature of their discourse expressed in their art. Like their discourse, the art expresses: the different experiences of HIV/AIDS; the changing intensities of living with HIV; expressions of the triggers and responses HIV provokes; the different ways HIV incites the men to action; and the possibilities inherent for resistance in affect. In the following visual pieces, many elements are juxtaposed, stimulating a variety of sensations, perhaps even feelings, and provoke a number of questions. I certainly have very strong emotional responses to these works; while I suspect they will evoke strong responses in others, the composition, choice of mediums, use of imagery, and other structural components of the works should not be overlooked. All of these works embrace contradiction and polarities as being both true. Light and dark, freedom and imprisonment, life and death, the flow and stoppage of time, the strong and the fragile, brightness and dullness, the organic and inorganic all coexist together in these works. Seemingly irreconcilable perspectives hold true in each work. These are evident both in the works themselves and the way the men describe them.

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In order to honor the contributions of these men and to provide a space where their voice is foregrounded over mine, the following section contains only participants’ art and their words. Their work is sufficiently powerful and expressive that I cannot imagine that commentary from me would be useful or additive. Even if I could enhance what already exists, or point out aspects of the art that support my analysis, I very much want a space for bringing participants into the work with as little mediation from me as possible. In fact nowhere in my analysis do I use their art or their commentary about their art in my analysis. My decision may seem odd or even ill- advised; indeed, after the project was complete I realized I may have literally and metaphorically painted myself in a corner. However, I made the men a promise that I would not use their art in my analysis in this work—I left the door open for the possibility of using it in future work. Although I could have enhanced my analysis using their art and commentary, I valued more upholding my promise. This section is their space for sharing their understanding and experience of being HIV positive gay men. For me, these works express these men’s subjectivities in ways impossible for me to otherwise convey. Participant Artwork: The Affect of HIV All the artwork produced by participants in this study is reproduced with their explicit consent. Of the nine men who participated, six produced artwork. No participant declined to create artwork. Tony’s and Charles’s participation in the study ended prior to the point where I requested they create artwork, and Alex agreed to do artwork, but personal commitments prohibited him from completing it. My request to participants was intentionally broad and vague to encourage participants to explore the request as they best saw fit: to represent their relationship to HIV/AIDS. Three participants (Aiden, Bill, and Daniel) drew or painted an original work for the study. Josh and Kris wrote original works. Jason, who has cultivated bonsai tree for years, shaped one of his existing trees for this project. Jason entered that tree in a bonsai tree contest and won a blue ribbon. Several participants expressed a range of feelings about the construction of their pieces as well as the finished works. Daniel and Bill both commented on how difficult the process was for them, but that they found benefit in doing the project. Discussing the artwork during our final interview drew a strong emotional response from Aiden, who began crying while talking about it, and we had to pause for a minute or so in order for him to continue the interview. Some participants had more commentary than others. Some discussed the process of creating and

150 others didn’t. I tried to include enough of our discussion about the piece to represent the entirety of their thoughts about their work. I present the art in alphabetical order of participants’ pseudonyms.

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Aiden’s Colored Pencil Drawing

Figure A: Aiden’s Drawing Aiden based his drawing on an oil painting he sees in the clinic where he gets his regular blood work done. That painting, titled Not Rockwell’s America, depicts a white male child with his back turned to the viewer sewing a panel onto a quilt that disappears into the horizon. What follows is Aiden’s thought on his work and the original work he based this piece on. The biggest reason why I’m able to be open about my status is because of the work that has been laid down before me, and for all the activists and people who have been there from the beginning of HIV and AIDS, and so that’s why I—like, the AIDS Memorial Quilt means so much to me. Every time I, just thinking about it right now, I get emotional, but at the last AIDS Walk that we had, they had some real quilts up and just reading some of the things that are on there, it’s very moving to me. And so, that’s why the picture means so much to me, because— and I also think the little kid adding on the quilt, it kind of shows that one, it’s always a

152 continuous—it’s still continuing today, and people are always being added to the number of people who have died from HIV and AIDS. And … in the original painting what I get from it is … how it’s going out so far, I think how many lives you can touch by sharing your story, and how many people you can impact. And, so, it kind of shows that … it never ends, and it’s going on into infinity. And I think that’s what I like about it most. … And then … you’ll see in the original too—and I tried to show it in my drawing—that’s it’s almost at sunrise and so there’s a little bit of yellow glowing. And I think that gives it a very positive light, and it’s a very warm and happy painting and not something sad or nothing negative about it. I think that’s another reason it’s so touching to me is because it does express, it does represent all the lives that have been taken from HIV and AIDS, but it represents it in such a beautiful way. … For me it’s empowering, it gives me strength and because you know going to the doctor, … it’s just a reminder of what I’m going through and how much it’s a reminder of also what I’m doing by participating in research studies and what I want to accomplish in the future. It gives to me motivation, and it makes me want to keep going. [Aiden began crying discussing how empowering he found the original picture.]

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Bill’s Painting

Figure B: Bill’s Painting The heart is the center of it. That’s what I started with in the picture. And so I had been envisioning, there were a couple of songs, two songs that really got me through diagnosis. One was called “Broken,”… by… Lighthouse, … and .. the first lyric is something like, “The broken clock is the comfort; it helps me sleep tonight. Maybe it can stop tomorrow from stealing all my time.” And that song ... was popular with me, ... when I was diagnosed and I remember thinking so clearly that my time, when you’re faced with your own mortality, you are very much cognizant and very conscious of the fact that you, you have a very limited amount of time. So the heart is, is, you can tell it’s broken, but it’s not. It’s still whole. So my heart was absolutely broken, just as the clock is broken. And so if this clock can just break, then time

154 stops. So if time stops, things are no longer finite. I’m no longer faced with my own mortality. It gives me just a second to breathe. So if the clock is broken, my heart is broken, but it stops my heart from breaking. And there was another song, called “Love’s Divine” by Seal. … And so if you look at the birds, they’re coming out of the broken heart, … and one of the lines in “Love’s Divine” is “And then the rainstorm came over me and I felt my spirit break.” And so it’s like my spirit, along with my heart, along with the clock, are all broken. And yet as time is going on, … another line in that song is, “Then time threw me a prayer, or Time threw a prayer to me.” And it’s like, “I felt my spirit fly.” So, … the birds symbolize my spirit like being broken, so there’s kind of some depth to the broken hole in the heart. And … my spirit is like [blows out air] going. … And the clock, you can see, the hour and the minute hand on the clock. Those are red for a reason, because I wanted to highlight that. And it’s stuck at 4:17. In the Big Book Alcoholic Anonymous page 417 is the acceptance page. And the Acceptance Prayer talks about “When I am disturbed, it is because I find some person, place, thing, or situation, or fact of my life unacceptable to me. And until I can accept that person, place, thing, or situation, some fact of my life as being exactly the way that it’s supposed to be at that moment, I cannot be happy. Until I could accept my alcoholism, I could not stay sober. If I can’t stay sober, I can’t be happy.” … But basically … acceptance doesn’t mean I have to like it, it just means that I have to accept it. … Acceptance was my answer here. … So that’s why the clock is stuck at 4:17, and then it can just break. And then when you look at the border, it’s actually a graphite, it’s not black. It’s graphite, and it’s like cloudy, because the entire thing encompasses … what felt like a very vivid, very never-ending dream. The entire thing felt like a dream. It didn’t seem real to me. It didn’t seem real that my heart had just been broken. It didn’t seem real that I had just become a statistic. … None of it felt real, but it felt so real. And then I was trying to put in there, you can see three of the birds have red underlined on them … I also picture three faceless like beings. I couldn’t figure out where to put them in there. … so there’s this little prayer that’s saying to where “I sought my soul, my soul I could not see, I sought my God, I thought my God alluded me, I sought my brother and I found all three.” Well, AA, my brother, my brothers and sisters in AA, when I sought that, I found my God I thought eluded me and I found my soul. And it was AA that really got me through diagnosis.

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Daniel’s Watercolor Painting

Figure C: Daniel’s Watercolor (front piece) This piece here, and basically what I did was I took the diff—a brown or two and I put a piece of paper over it and I just flicked on the top of it like that and created the colors. And I like that because I like the hard edge of the line and I like the freedom of the sort of thing. It sort of reminds me of grass, I guess, but dead grass. And then, I did another one of those over here, on the other, on this side, then after that. … And then I did my flower. It wasn’t supposed to be a flower originally but as I did it, it was like I thought it turned into a like a big beautiful mum. I love that color; I love this sort of salmon color. ... And then I sort of did some of the green leaf, green flourish kind of to the either sides. I love green; it’s my favorite color. And, and I like the full way that it sort of flows; and I like the balance of the flower and that. So then I have this big empty space in the middle here. I wanted to do something cloud- ish up here; … it’s sort of a big storm cloud on the horizon. And then I did the stone here at the bottom, which I think is stone here at the bottom. The inspiration was the layers, or rocks in the

156 layers like, sort of sedimentary stone and what that looks like and, I’m a big fan of Sedona. I’m a huge Sedona fan; I’ve been there many times, and it’s a very powerful place for me, a very spiritual place for me. And so I sort of was inspired by that, and that came through here. Then, I wanted something green in the center, but I wasn’t sure what, so I just started playing around and suddenly a cactus emerged. I don’t even like cactus, and it’s, because it’s painful and prickly and, but there it is, smack in the middle. And I sort of feel like in a way it’s kind of like doing that, [raises middle finger] at the world, I think. And then, there are three spots on here. There are three spots on here: right here, and right here, and right here that are black. And, I don’t know why I felt like they needed to be there, but they were. But the reason why I wanted to do the vellum and why I think it’s so powerful is that after I did that, you can’t really see it except when you look at it here, [lifts vellum] underneath it is all of this.

Figure D: Daniel’s Watercolor (back piece) So darkness, and, then there’s little like a blood splot right there. And when you put this on top, the blood spot is bleeding out of the flower. …And that is really the HIV. I mean that’s really, to me, that was, while I think the whole thing’s representative of different stuff, it’s that

157 underlying darkness and the blood and the you know, blood is representative of a lot of things, life force, infection, in my case. And then having it sort of peeking through this beautiful flower is an interesting metaphor. Jason’s Bonsai Tree

Figure E: Jason’s Bonsai Tree. The bonsai is a pine tree Jason has been working on for twenty years. He’s been told the tree is at least 100 years old. The picture above features the detail of the copper wire shaping the tree branch.

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Figure F: Detail of Branch I guess for the sake of this project, you would think that you would want to cut off that brown in the back that looks like it’s dead, but to me that symbolizes HIV as it starts off in the 80’s and 90’s. Or it could symbolize like past scars that the actual virus has literally left on somebody, such as my GI [gastrointestinal] problems, but I digress. … Then this new branch here symbolizes HIV that we have today where, like looking at this tree, everything about the tree looks healthy as far as the branch goes and the way the branch is growing you would never know that anything is wrong with it. Just like in today’s society you can’t look at someone and tell if they have the virus or not. … See how the root shows? It looks like the tree’s barely hanging on; like, it could collapse at any minute. But that’s the way they naturally grow and you

159 would be surprised how firm the foundation of the roots actually are. So there’s so much about the virus that can be deceiving or just not realized by the quote unquote naked eye. And the close up picture that shows the branches, you see that copper wiring in there? That molds that tree and the way that it grows. So, you’ve got the young kids that are like “Oh HIV is no big deal, yada yada yada,” but what you don’t see is the fact that so much about the virus is going to send the direction of that person’s life takes whether they want to admit it or not, just like this copper wire. It’s on there to distinctly grow the branch in a certain direction, even down to each individual nub, because the tree’s not going to be strong enough to grow against the wire. Yeah, so no matter how hard people want to ignore the fact that the virus is there, the virus is definitely still there, just like the wire is definitely still there, causing these limbs to grow into the one direction. … The symbolism for the wire was that you could have all these plans and things that you want to do, but you don’t know if you’re going to be able to accomplish those because the reality is that the virus is still there and it’s still inside you. Just like this tree could, I mean if it had a mind, it could have all these ideas of, “Oh I want to grow here, I want to grow there,” but then the tree has to ask itself, “Is that really going to be possible?” And it’s not going to know until it tries. Josh’s Free Verse This strange new world Sitting here is this cold lonely room, shadows walking past, brushing against me, pushing through me. I try to stand but I am chained down to this chair, to the place where I have made my bed. To the place where I have made my home. Coursing through me is my prison. Coursing through me is my strength. Limits and limitlessness join together as one. At times my soul is rotting to the core, and yet I feel burning bright with hope. My chest rising and falling with the fear and my heart bounding forth with the courage. The diaspora that I thrive is not a home. Both sides burning, both sides collapsing. Each side heavier. Each side crushing. Each side suffocating. From the middle I fight, I force myself outward. In the center, I find peace. I find my pieces. I find myself whole.

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Completing myself, I look up. I see the dust clearing, and I see the bands of light bursting forth. The warmth given is my remedy, The dust clearing to the ether, speckled with the souls that helped me fight Standing behind me, urging me forward into the light. The light giving shape to the shadows, not slighting me, but supporting me. Stepping beside me on my journey, as I step up from my seat. As I step up and move forward into this new strange world. [Josh’s commentary:] The prison or the home that I make for myself is my HIV status and I did it to myself. And then it was a lot of—I can’t think of the word, I want to say dichotomies, but I don’t think it’s dichotomies. Like opposite thoughts; … I like playing things against each other. A lot of who I am has, has derived from [HIV]. A lot. So it’s given me the strength to become the person that I am, but at the same time it’s not, not a great thing. Diaspora is the closest that I came, and I put that in there. Non-positive people and positive people and I feel somewhere in the middle of that, even though I’m really just a positive person. … And in a lot of aspects, the diaspora, a lot of aspects of my life, like I’m too, I’ve always, when I moved to Milwaukee, I was always too country to be a city boy, but I was always too much of a city boy to be a country boy, and that’s kind of just, that’s been a theme for me that I’ve carried throughout even regardless to my HIV status. The crushing and suffocating is from them like from me being stuck in the middle of them. This is how my brain works when I do creative writing, is so I was doing the sides of this issue, crushing and suffocating and all that stuff, and then in my mind it was two buildings collapsing in on each other, and then the dust was like the dust from the rubble, almost a 9/11-esque-ness to it. The newness is the acceptance of it, I think. … I’m newly aware that I’m accepting it. I don’t know, it’s my journey through the disease so far. I mean, it wasn’t a good thing when it first happened, so it was like a prison and like a cage. As it’s progressed, I felt—as far as my writing goes—the end of it is relatively hopeful.

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Kris’s Poem The Struggle

Once, I had a struggle. I overcame that struggle. Learned to love myself. Learned to appreciate myself. Found freedom

Then, I was smashed with HIV And I fell…. Fell into Disappointment. Fell into Distraught. Fell into Distress. Fell into Discomfort. Fell into Discord. Fell into Dis…. Dis… Fell into this Dystopic world Caged, locked into this feeling of Uncleanliness, Imperfection, Unequal, Rejection (As if this weren’t already different enough)

Struggling once again with The WANT, To fit in, to be normal, to live Just like everyone else. That’s nearly impossible now. Or at least, it surely started that way.

Now I’m understanding it;

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A new level of understanding: Instead of ignoring, embracing. Instead of rejecting, accepting. Instead of hating, loving myself. Though it is not easy. It is hard to wake up in the morning. To feel like no one will ever love you To feel like you will always be alone To have this huge swirl of emotions That seem to be invalid. To feel like you’re an invalid. People blame you, Make it seem like it’s your fault. Like you’re a slut. Like you’re dirty. Like you’re not a victim Like you are and Forever will be… flawed. It’s hard to focus…? Function…? Feel…? Breathe?

The struggle is real. It’s like an onion. It stinks? It makes you cry? No! It has layers. Onions have Layers. Struggles have layers:

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Encountering Observing Enduring Understanding Accepting And Living with the Struggle. Those are the layers.

I have encountered this struggle (HIV). I have observed it. I am enduring it. I am understanding it. I am accepting it. I am living with HIV.

I am relearning to love myself. I am relearning to accept myself. And I will find freedom again. [Kris’s Commentary:] There were two things that I immediately thought of was—there’s a poem by … Langston Hughes, and it’s … called Crystal Stair5, and it’s like, “Life for me ain’t been no crystal stair, there’s been bumps and there’s scratches and pieces.” It just talks about how people might think or assume that life is really easy when it’s really not, you know, for a certain set of people. … I was writing the poem in philosophy class and so, also, while I was writing the poem the professor was have, she would say things about different philosophers and it just, that kind of figured into it a little bit too. [On the cage and prison metaphor] I just feel like I’m really limited by a lot of things now being HIV positive, and the cage is kind of like my fear. It prevents me—being HIV positive I have this fear, and it prevents me from doing a lot of things I normally wouldn’t have a problem doing, or things that I normally wouldn’t even think about. … Like every time I have an injury

5 The correct name of the poem is “Mother to Son.” The stanza that Kris references is: Well, son, I’ll tell you: / Life for me ain’t been no crystal stair. / It’s had tacks in it, / And splinters, / And boards torn up, / And places with no carpet on the floor— / Bare. (Hughes, 1994). 164 or … I bleed, I instantly panic. I remember the first time that I bled when I was diagnosed HIV positive, I had a panic attack and I was at work. … I screamed, “Don’t touch my blood!” and it was just this huge thing. And so it really prevents me from being a normal person and it just prevents me from sometimes I feel like it puts me in this category there are certain type of people that want to be associated with me, and certain type of people who don’t. And sometimes I feel like it traps me. [On the questions about focus, function, feel, breathe] It’s less of literal thing and more of a—just like at different times, sometimes HIV and just like being like being HIV sometimes it’s just, it’s hard in general to just to focus and it’s hard to, it’s hard to not let it overwhelm you. Sometimes it’s hard to do things you are so used to doing, like it’s hard to focus and it’s hard to feel, like you just kind of lose track of yourself and your status and you don’t know what to do. In the beginning it was just so hard to just do anything, like to just be, like that was the biggest thing, I just wanted to be a normal person for the longest time, and I had to come to terms that I’m still a normal person, I’m just HIV positive. And it’s like that’s just a huge thing because I’m still struggling back and forth with that, with understanding … that it’s not a huge thing and it’s not who I am, it’s only a part of who I am. Yesterday I went to the doctor and they’re going to put me on meds again really soon, and it’s a different type of medicine that won’t interfere with my life as much. I’m really happy about that. But as far as the focus and functioning part, that really has a lot to do with I get so caught up in my thoughts all the time that when I, whenever I think about something and it bothers me emotionally, it’s literally debilitating. It stops me from doing anything at all. I get so caught up in thinking about and just in fear, and being sad, not anymore, but in the beginning I really couldn’t do anything. [On the onion metaphor] There’s this one part where Shrek is talking to Donkey and Shrek says, “I’m like an onion.” … And donkey says to him, first he says, “[Because] nobody likes you?” and then he’s like, “No.” And then he’s like, “You make a lot of people cry?” And it’s like, “No.” It’s like, “It stinks?” He’s like, “No, I have layers! Onions have layers!” And that was in there because it was kind of like, it was little bit of comedic relief for me, because I thought about that scene, but it was also just kind of like the way that I kind of view my problem. It’s like, now I can laugh about it, I can be happy about it, I can smile about it. But I also view it in layers. That way you break it down and there’s less problems, it’s less overwhelming. It’s

165 less of an issue. At the same time, it’s good because it’s a segue because most of the poem I’m just talking about how all the bad things about HIV, … and then like near the end I skip to the end and I don’t really talk about anything good. Because, really, it’s, there isn’t much of anything that’s good about it. There’s not really much of anything good about it, but that doesn’t mean I constantly have a bad time. It doesn’t mean I’m just constantly having a bad experience. And I don’t really talk about the good times, I don’t really talk about the better times, so I have to figure out a way to just say that it’s better without actually saying that it’s better. Conceptualizing an Askēsis of Shame Participants express their subjectivities through discourse infused with negative and positive affect. In articulating their relationship to HIV/AIDS, they drew upon a range of negative and positive affects that help them withstand the barrage of oppressive AIDS and able- bodied discourses. This blending of negative and positive affects in the creation of a HIV positive gay male self that survives and even thrives shares much with Tomkins’s (1995) formulation of shame. The Concept of Shame Shame is an act of covering, often expressed through the face (Tomkins, 1995). For example, humiliation in front of another person or audience usually results in the eyes or head lowering or turning, or the hands covering the face. Even when alone, “the head may also be hung in shame symbolically, lest one part of the self be seen by another part and become alienated from it” (Tomkins, 1995, p. 134). Jason and Josh invoked the face as real and metaphor when discussing how talking or hearing about HIV/AIDS could manifest itself to others unwillingly. In response to a teacher’s “grim tone” about HIV, Jason felt he “probably just made [a] face … that said I had HIV written all over me.” Josh shared similar thoughts, also invoking the image of the face: “I could never educate someone without getting verklempt or whatever, so I think they would know immediately or they would read it on my face.” While these circumstances could involve literal facial tells (e.g., blushing) that they felt would “out” them as HIV positive, their method of expressing such moments convey their need to “cover” their status, the discursive face of HIV, as it were. Tomkins (1995) describes the shame response as resulting in covering, and passing can be understood as a form of covering. Passing is an attempt to keep a stigmatized identity or attribute hidden or invisible; covering involves making that attribute or identity less obvious

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(Goffman, 1963; Yoshino, 2006). AIDSphobic and compulsory able-bodied society demands that HIV positive gay men pass as fully able-bodied (i.e., not exhibiting any debilitating symptoms of HIV or the medicines that treat it). Kris and Charles encountered this with their medicines impacting school work and the difficulty they’ve had finding support there. Jason and Josh expressed concerns that being discovered as HIV positive would result in losing their future in nursing. Heteronormative society also makes demands. Some men may find it permissible, depending on location and community, to express a gay identity so long as they cover any queer attributes (e.g., engaging in casual sex, being HIV positive). For instance, Tony responds to homophobia through masculine aggression, physically and symbolically covering any queer attributes of gay identity. Josh and other participants noted that people often make sex-negative assumptions about how they acquired HIV, shaming them for allegedly being promiscuous. Although shame is a negative affect, shame requires the positive affects of “interest or enjoyment” even while it inhibits, interrupts or reduces interest or joy (Tomkins, 1995, p. 134). One cannot be shamed by people in whom one has no interest or attachment. If people do not desire connection or involvement with others, they cannot be shamed by them. The shame response means that an individual seeks to continue engagement with the self and other: “such a self is not prepared to totally surrender its self-respect and to reject itself” (Tomkins, 1995, p. 158). In the face of social contempt for their HIV status, particularly as HIV positive gay men— and sometimes for other facets of their identities also (e.g., race)—these men have chosen to continue engagement with the social other, even while covering or passing their HIV status, or attempting to cover the discreditable attributes that adhere to gay men with HIV. Facing Social Contempt Contempt is an expulsion, a vomiting out, or a rejection; in short, a product of disgust (Tomkins, 1995). As Yingling (1997) and Dean (2000) argue, American society has sought to expunge or vomit out (politically and discursively) homosexuals with HIV/AIDS because the existence of those individuals testifies to non-sanctioned sexual identities and practices (Rubin, 1982/2011). Such conditions create “extreme difficulty for gay men not to read AIDS as a morality tale … [and not use] adoption of straight society’s sexual mores as the path to gay redemption” (Gould, 2009, p. 81). And certainly, participants haven’t been rejected by just straight society, but other gay men also. Daniel and others routinely saw ads where gay men seek “clean” partners. Gay and

167 straight friends alike wouldn’t talk to Kris about his status. Jason’s and Alex’s partners terminated their relationships because they seroconverted. These demonstrate how social contempt translates to everyday experience and interactions. Jason’s and Josh’s concern about losing their jobs or being removed from their programs should their status be known, and the multiple barriers Charles encountered in trying to secure support services all point to institutionalized forms of contempt. Multiple possible responses to contempt exist, both positive and negative (Tomkins, 1995). The men could respond contemptuously; and while, obviously, people cannot easily or fully disconnect from society, people can withdraw or limit their involvement in many different ways. These men, by contrast, in their various ways, both passive and active, seek to benefit others. Often, but not always, their actions serve to educate or support others about HIV/AIDS. For all of these men, somebody in their life knows about their HIV status, although most of them are careful about with whom they share this information. Most have times when they try to pass or cover their HIV status. However, as Jason and Josh explained, those who attempt to educate others about HIV risk bringing suspicion on themselves. Therefore, while these men may not all explicitly claim their status, many risk being discredited as HIV positive through their actions. I also argue that the men who broadly share their HIV status (e.g., Aiden, Alex), and for those who are exploring doing so more (e.g., Bill, Kris), still decide to cover, if not their HIV status, then the moral stigma of (or discrediting aspects of) HIV/AIDS. To say that these men cover or pass is no condemnation; on the contrary, their benign response to a contemptuous social order suggests a purposeful, cultivated response on the men’s behalf. Given the particular affective bent of these men’s discourse, I refer to it as an askēsis of shame. These men must manage the contempt of society yet still choose to seek communion with others. Some queer scholars and activists have objected to shame as an explanatory frame for queers’ self-cultivation—I summarize and address those objections to shame in my next chapter. For now, I explore the discourse of shame evident in participants’ language. The Askēsis of Shame In the face of overwhelming stigma and contempt, I would not have been surprised to find that these men responded with contempt, anger, fear, hostility, or indifference of their own. They could have decided that society had abandoned them and then reciprocated that abandonment by remaining alienated and indifferent rather than allowing their empathy to

168 expand. They could decide that educators failed them and so they will not educate others about HIV. They could not care if they passed the virus on to others; after all, others did not protect them. But, these men return instead to investing in others in their various ways. I see this decision as a cultivated ethical choice. Foucault (1988) described a practice of citizens in classical antiquity he called the “cultivation of the self” or an “art of existence.” (p. 44). This life-long practice involved “the manner in which the individual needed to form himself as an ethical subject” (Foucault, 1988, p. 67). The art of existence was not a practice in response to the codes and indictments of social institutions (e.g., religion, psychiatry), but rather focused on “the question of the self, of its dependence and independence, of its universal form and of the connection it can and should establish with others, of the procedures by which it exerts its control over itself” (Foucault, 1988, p. 238). The successful cultivation of the self impacted the kind of power and authority one could wield in relation to others in the political sphere (Foucault, 1988). When I describe participants as cultivating an askēsis of shame, I am describing the way in which these men have equipped themselves in their self-cultivation to stay in communion with (i.e., retain an interest or investment in) others. The modern understanding of asceticism typically revolves around renunciation or denial of some kind (Foucault, 2005). However, Grecian and Greco-Roman askēsis differed: “ancient ascesis does not reduce: it equips, it provides” (Foucault, 2005, p. 320). Ancient askēsis prepared “the individual for the future, for a future of unforeseen events whose general nature may be familiar to us, but which we cannot know whether and when they will occur” (Foucault, 2005, pp. 320-321). This form of self- cultivation “involves putting together a defensive equipment against possible events in your life” (Foucault, 2005, p. 332). And this is what the men in this study have done. They have assembled a defense against the social contempt they experience. Their preparation for HIV- positive gay male life unfolds in both deliberated and thoughtful ways, as well as more reflexive, intuitive ways. Tony repeatedly volunteering to discuss living with HIV in residence halls and in classrooms is a strong example of the more deliberative aspects of the askēsis of shame. Bill demonstrated this when he decided to discuss living with HIV at an out-of-state AA meeting where he was invited to speak, a decision he contemplated carefully beforehand and even discussed with me during one of our interviews. But the askēsis of shame emerges in actions

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(e.g., disclosing their HIV status to other students or teachers) more reactionary, intuitive, or felt than considered or calculated. For example, several participants reached a point where they decided, seemingly on the spur of the moment, to share their status in a group setting, such as a class. Alex’s account of “word vomit” exemplifies this kind of intuitive or reactionary response: And I honestly don’t even remember what poem I picked. … But, after I said it, the teacher asked me, “What does this have to relate to you? It’s so dark and deep.”… I remember I took about a good, maybe, thirty seconds. And I took a deep breath and I had to ask myself, “Alright, well, do I want to do this? Or do I not?” And then the next thing I know, I just started spilling my guts out. I was very all over the place about it, and I pretty much just had a word vomit. Alex went home and made a YouTube video sharing his status with friends and others in his social media network. That action, although informed by his initial response, reflects more of a considered choice. Having “word vomit” typifies the intuitive side of the askēsis of shame while making the video typifies the considered aspect of the askēsis of shame. A slightly different example involves recent action take by Kris. In follow-up conversations, Kris shared his surprise at disclosing his status while on a visit to his state’s capitol: I spoke at the capital on behalf of … a women's empowerment group; discussing HIV and how it affects women is one of their health initiatives. Unbeknownst to myself what I exactly would do, I went there and shared my status and discussed the needs of college students with HIV with a group of other people with HIV from organizations all over [the state] to discuss a law that concerned us. Kris may have spent some time considering if he would share his status; he wasn’t entirely clear in that regard. However, his language suggests that even if he did think about it prior, he seemed to make a decision in the moment. That in-the-moment decision constitutes acting from a place of intuition or feeling. In retrospect, some of the men affirmed such actions as beneficial and some as ill-advised or regretful, but the initial decision was spontaneous and not given much consideration, at least in that moment. Tony approaches his volunteerism with seeming nonchalance. Bill was enthusiastic and proud about sharing his status at the meeting. Alex has a somewhat ambiguous response. His video remains posted on YouTube and he still seemed proud of making it. Yet, at another times, he has commented on how guarded he has become since then at school. Kris

170 expressed pride at his bold action. Both deliberative and intuitive acts contribute to how the men understand their self in relationship to HIV, and both emerge from the ways in which they cultivate themselves. In many of these instances, the men can be viewed as making a value judgment—an ethical or moral choice regarding the kind of life they should live in relationship to others. Second, these men may be responding with positive affect because responding with purely negative affect would be too damaging or corrosive to their well-being. At different times, each man might be doing both, either, or neither. Regardless of why they reciprocate contempt with interest, I use askēsis to describe their choice in self-cultivation. At times these men practice askēsis deliberatively, making considered choices. Sometimes they act intuitively, or more spontaneously, more emotionally, and less deliberately. Berlant (2011) describes intuition “as the process of dynamic sensual data-gathering through which affect takes shape in forms whose job it is to make reliable sense of life” (p. 52). Intuition “is a trained thing, not just autonomic activity. Intuition is where affect meets history” (p. 52). Intuitive, in-the-moment responses are products of past experiences, past choices, and previous thinking and preparation. Therefore, intuitive responses are just as much products of these men’s self-cultivation as more deliberated actions, and also contributing to their self-cultivation. To reiterate, the askēsis of shame describes these men’s desire to stay in community with others and with society in general while still trying to cover themselves from the condemning forces of AIDS discourse that seek to expel the threat of HIV/AIDS from the (heteronormative) social order and compulsory able-bodied discourse that mandates fully-functioning bodies. Many of these men engage by educating others about HIV, which brings risk to them, particularly as gay men, as suspect of having HIV. It’s important to note that the method of connection ranges from very active to very passive, and this, like with affect, ranges in intensity. Some participants’ forms of communion differ now than they did in the past; there is no linear track where individuals become more or less engaged. Some do not actively engage around HIV currently, but channel their experiences with HIV into more capacious empathy. A commonality shared by all these men, however, was their participation in this study, which demonstrates a level commitment to engaging social constructions of HIV to a substantial degree. As Charles put it: I just came across [the call for participants] and I said, “Yeah I’d be interested in the study,” because I feel that’s important, especially since all the hassles I’ve dealt with, like

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the disabilities office and stuff. So I let my story be told, and do the research study and see what the outcome’s going to be, because I think it’s important to educate teachers and professors on the effects of HIV. The Complexities of Practicing an Askēsis of Shame Earlier I wrote about how Jason and Josh were reluctant to educate others in the health field for fear of losing their jobs or standing as nursing students. While Jason remains extremely cautious, he did write to the dean of his former school about how the teaching staff discussed HIV. The dean responded that she would update the instructors’ training on the subject and address their rhetoric around disease. Jason has days where he’ll “talk about it all day long,” and other days where he avoids the topic. More generally, he feels living with HIV made him a better nurse and a more compassionate person. I mean it’s hard to be like, “I know what you’re going through, I’m HIV positive.” No, it doesn’t matter. … It does allow me to have better empathy for people that are going through any type of diagnosis themselves. [Also,] I don’t see fault in anybody anymore like I used to do. Jason’s mode of engagement with others currently revolves around his expanded compassion and understanding. Although Josh feels limited in his ability to express much about HIV in his current courses or small community, as an undergraduate, Josh had a passion to use theatre to address HIV/AIDS. During that time he confronted a friend about her AIDS jokes and since then has educated sexual partners. After some deep kissing with one man—who happened to be a nurse—Josh and this individual decided to escalate the level of contact. Since the new degree of intimacy could potentially transmit HIV, Josh disclosed to the man his status, upon which this individual curled into the fetal position and began to cry, fearful that Josh may have already transmitted the virus to him. Rather than depart immediately, Josh stayed to comfort him and explained how HIV was transmitted before leaving. Despite his concerns about his passion about HIV giving away his status, Josh still “wants to say it should be [the] obligation [of HIV positive individuals] to educate people.” And although Josh believes that instructors knowing his status could lead to him being removed from the program, he consistently educates about gay men’s health issues. By bringing awareness to this general topic, Josh provides himself a kind of

172 cover for his HIV status that may simultaneously lead others in the health field to become more aware of the impacts of HIV. Bill vacillates between telling everybody on Facebook and being fearful of how people would react if his status were widely known. But he does feel a call to contribute to the world. So you’ve got these polar opposites, so the world will provide lots of injury and darkness and hatred, and so what am I going to provide? Can I provide love, pardon, light? Can I do all these things? So it’s this balance, and so it’s good and evil of the world, and this ying [sic] and this yang that we need to balance out. Walking the walk is very important to Bill, and after our interviews concluded, he contacted me to let me know that he shared about living with HIV at an AA meeting where he had been invited to speak. Alex articulated very similar sentiments to Bill. Becoming HIV positive caused him to question his life goals. It makes you reexamine your life because it’s just like, what have I done? What, what good have I done? What bad have I done? What could I do differently? What do I need to do? What do I want to do? Alex discussed how he felt living with HIV resulted in him becoming more focused on his academic and career goals, along with providing him an opportunity to reevaluate his moral compass. Alex shared his status widely with everybody six months after his diagnosis, stating in the YouTube video he made that The main reason I want to make this video—you know I’m scared shitless right now—is: I just want people to know who are newly diagnosed that it’s going to be okay, because I didn’t think it was going to be okay. … And that’s something that I want to pass on to everyone else, is that you need to treat people with HIV like they’re just a normal person, because they still are. .. And so I hope that with this video, it might help someone who’s maybe struggling right now or maybe you know someone who’s struggling or something. In that video Alex also spoke to the affective complexity of shame. I don’t have anything to be ashamed of, and I’m not sitting here and like saying that I’m some super proud HIV positive person, I mean, I guess I am, maybe I’m not, I don’t know, I don’t know. But, I’m just saying that I’m not going to be ashamed of this anymore.

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Now, six months later, Alex talks less about it, noting the judgmental attitude of students in the fashion industry. Becoming more silent causes Alex to question if he’s doing the right thing. I haven’t really been open about it as much as I was in the beginning, … mainly just because I reached the point of where … I don’t have to be as verbal about it, I guess. … I don’t have to prove myself anymore, I guess. I mean a part of me kind of wonders if I’m being a coward in not talking about it as much, because … how can you expect something to change if you don’t talk about it, or you don’t try to educate people about it. That said, he does continue involvement in his HIV support group even though he no longer feels the need of it in case he might help somebody else. I continue to go because there are other people who aren’t as comfortable with it and are at the same level as I am, and it helps me to see other people be at that comfort level. So that’s part of the reason I go when I can, because, I mean, you can’t get from A to B without seeing someone else doing A to B. In his graduate program Daniel often placed himself—intentionally and sometimes unintentionally—as educator of others about LGBT history and culture, including HIV/AIDS, a role he continues in his current job. As a graduate student, speaking of HIV within the context of LGBT history provided a successful degree of cover. As a social worker, Daniel has corrected co-workers misinformation (and lack of information) about the virus. It is unknown yet whether this may cause his fellow workers to wonder about his status. More broadly, Daniel has an interest in addressing issues of oppression and privilege, a result of an epiphany he had when coming to an understanding of heteronormativity in his graduate program. For the first time in my life, I realized what I had been experiencing all these years, but I couldn’t point out; all of the things that contributes to all the reasons [gay men] hate themselves and what they do because they hate themselves. If you’re raised in a world where you are taught that you should be straight, you’re not going to love yourself very much. So that’s been a turning point … for me because I had never spoken up because I didn’t want to get in people’s faces or make waves, and that has shifted. I am certainly no ACT UP kind of guy, but I definitely talk about feminism, I definitely talk about heteronormativity, I definitely get in people’s faces about racism. Even the men who are most active in educating others or working for social change regularly still struggle with the emotional weight of social contempt. Kris, who is highly active

174 on his campus in a number of educational and political venues, finds himself wanting to cover at times. I feel like there’s a certain stereotype that comes with being HIV positive. Like, if you’re HIV positive, then you’re sexually promiscuous, or—it’s a way that people say the word sick. A couple years ago, some football players [were] talking about a guy who’d contracted HIV and they were like, “Yo, dude, I heard he was sick, brah. I heard he was sick. Aw, his life is fucked.” Being around that kind of atmosphere and hearing people make AIDS jokes, I mean I’m perpetuating it by not saying anything about it, but I feel targeted if I do say something about it. Kris has continued to push himself to be more open about his HIV status given his activist inclinations, and he has talked to more groups. Tony, who is both highly involved with educating other students about HIV by sharing his story and generally exhibits an attitude of fearlessness, must contend with the discourse of compulsory able-bodiedness. I sometimes feel like a charity case because I’m getting the government to pay for my meds, but it’s something … I could have controlled, yes, I get that, but something I can’t control the price, and I can’t control that I don’t have insurance right now that I don’t pay for it. … I’m trying to get to the point where I can pay for it myself, but I just need some help along the way. Finally, Aiden, who is generally very open about his status and hopes to make a career around working on behalf of the LGBT population and people with HIV, acknowledges that there are some people whose knowledge of his status would create more problems that outweigh possible benefits. I told my mom last December so … I can talk to her about it now, but I still haven’t told my dad, and I don’t know if I want to. Even before telling most of my close friends, I had already gotten to a point where whoever I tell if they have a problem with it, then it’s more their problem, not mine. And I still have that mentality. … I mean I will admit there are a few; like I’m not out to everyone at my work, … about being positive, … and I just feel like there are some people who don’t really need to know. A striking element of Aiden’s openness about his status and his desire for social change is his connection to past and potential future generations of people, especially gay men with HIV, as well as the support of the communities he inhabits, and the kind of changes he has seen in others.

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I think it comes from me knowing what others have done before me, and knowing I wouldn’t have it as easy as I do know if it weren’t for them. And so I want others to [know] I may have it easier than others before me, but it’s … for people who are coming after me, like generations after, I feel we should always be making, there’s always room for improvement, there’s always work to be done, and we should never feel …there’s nothing else that needs to be done. My courage to be open about [my HIV status] is knowing that everyone who cares about me, or, no, even just knows me as a person, once they know about my status, it can change their whole perspective on anything, everything that they knew about HIV. Based on my interviews with participants, Aiden probably lives in the area with the most supportive communities available for HIV-positive people. To state that is not to belittle his accomplishments, but rather to highlight the importance of local discourses for these men in navigating life while HIV positive. I suspect that the types of local communities and discourses these men are exposed to at least partially impact how strongly they feel the need to cover/pass and the ways in which they stay in communion with others. Space permitting, I could explore the particular discourses these men employ in formulating their cultivation of the self. For now, I simply acknowledge that those discourses differ even while the underlying construction of self seems similar. Conclusion Navigating oppressive social discourses takes an emotional toll on these HIV positive men, an impact reflected in the way they talk about and represent their relationship to HIV. Although this study focuses more on the structure and use of their discourse rather than those inner feelings, that discourse points to what Gould (2009) calls an emotional habitus, “the socially constituted, commonsensical, taken-for-granted understandings or schemas in any social grouping that … provides members with an emotional disposition” (pp. 33-34). Spread across the United States, the affective nature of these men’s discourse suggests the way in which social discourses create a pervasive national environment where gay men living with HIV experience their life in constantly shifting, uncertain ways. I speak more to the emotional habitus with which these men contend in the following chapter. To be a gay man with HIV, the results of this study suggest, is to not know how you will feel about it tomorrow. It is to have to take time to decide who will accept or reject your

176 friendship, love, sexual interests, or familial relationship. The effect and the intensity of that effect the virus will have—physically and emotionally—and what actions or inactions occur as a result is unknown. To be attending an institute of higher education while HIV positive, at least for these men, also means uncertainty. The prevailing silence of these men’s universities and colleges created a void of information that inhibited them from being able to weigh their options for seeking support, services, or building relationships with other students and faculty. Yet despite all of these uncertainties, these men retain a positive disposition towards others. They could have understandably responded to social contempt with anger, retreat, or contempt. Instead, they have used various social discourses to create not just a better life for themselves, but for others also. They see possibilities for social change—on some days more clearly than others, certainly—but possibilities nonetheless. Halperin (2007), following Foucault, observed, “For it is precisely in the relation of the self to itself that gay men may have to look for a source or resistance to political power” (p. 107). Understanding these men’s self- cultivation hopefully provides insights or the beginning of thought into possible effective strategies for crafting a better world for HIV positive gay men (and HIV positive people more broadly), and for thinking carefully about what can be done in higher education to help these men navigate the challenges of college. That these men shared their stories and lives is an expression of their desire for—and a contribution towards—a better world.

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Chapter Six: Discussion The roar of the waters as Charybdis ingulfed them, gave warning at a distance, but Scylla could nowhere be discerned. While Ulysses and his men watched with anxious eyes the dreadful whirlpool, they were not equally on their guard from the attack of Scylla, and the monster, darting forth her snaky heads, caught six of his men, and bore them away, shrieking, to her den. –Bulfinch, The Age of Fable Implications for Theory and Practice Affect: Thinking Beyond Identity The affective structure of these men’s discourse offers an alternative to the concept of identity in understanding the subject formation and socio-political context of college students. Student development literature typically conceives of identity as a process, or as positions or stages wherein individuals explore self-identity, and then reject, resolve, or integrate various identity labels or ideologies (Torres, Howard-Hamilton, & Cooper, 2003). The vast majority of these studies take a constructivist-developmental approach. Student development scholars very frequently also study and examine identity as a singular construct (e.g., race, gender, or sexuality), with some notable exceptions (e.g., Abes, 2012; Jones, 2009; Patton & Simmons, 2008). Affect, however, moves beyond needing to untangle the inseparable threads of identities. Affect points us to collective feelings that signify a larger group or subcultural experience. For my purposes, affect is useful for the way it frustrates attempts to narrate it. Affect has no beginning or endpoint; neither does it follow a path or rational journey—it has no determined end, or telos. Understanding the affective register of these men’s language complicates their seemingly coherent and complete depictions. Affect forces a confrontation with the messiness of human experience and away from notions of progress, stages, and improvement that fail to capture the complexities of human subjectivity. Affect as I use it signifies a relationship between the men and larger cultural discourses. My usage follows, among others, Halperin’s (2007, 2012) attempts to account for gay male cultural expression and social positioning without recourse to the language and terms of psychology—or here psychosocial/developmental theory—which risks pathologizing or normalizing these men. The affective nature of their discourse is not a description of their psychological makeup, but rather a description of the way they express their self in relationship to HIV/AIDS within a heteronormative and AIDSphobic society. Understanding affect as a

178 cultural production is by no means new, but this understanding is rarely if ever seen in higher education or student affairs literature. Abes and Kasch (2007) explained that constructivist- developmental theory—the prevailing mode of inquiry in student affairs about students’ lives— cannot accommodate for heteronormativity, and by implication, other oppressive discourses. Certainly, the few mentions of HIV/AIDS in college student literature take a deficit approach that narrates students as victims or renders their lives as merely pathetic (Halperin, 2012). For instance, Marine (2011) in her overview of queer college students post-Stonewall briefly listed acquiring HIV as a possible impediment to development. More substantially, Bowers and Collins (2000) used psychosocial theories to assert that HIV inhibited development. They claimed that: From the psychosocial viewpoint, living with HIV/AIDS appears to have stymied the students in the area of managing emotions and developing purpose. … An HIV diagnosis limits the student’s interpersonal growth and virtually halts the individual’s sexual growth, … [and most students] experience difficulties in working through some of their psychosocial challenges. (Bowers & Collins, 2000, pp. 438-441) This study demonstrates how reliance on psychosocial theory can easily lead to deficit thinking, pathologization of students, and judgments about health functioning and growth. Not accounting for the social conditions of these students furthers stereotypes and stigmatizes them rather than providing an understanding of these students’ lives in complex ways that respects their dignity.. The developmental conceptualization of identity is not limited to student affairs literature, but is also found in research on HIV positive people. Baumgartner and David (2009), for example, discussed their participants’ lives with HIV in terms of stages involving turning points and integration. Integration, however, implies a more stable, constant way of relating to the virus than what the men in this study conveyed. The discourse of HIV/AIDS is so powerful and the obstacles for HIV positive people are sufficiently onerous that these men’s relationship to and feeling about the virus changes significantly. Schwartzberg (1996) used a psychological approach to gay men trying to make meaning out of being HIV positive. Although his aims are clearly benevolent, his discussion of growth and unconscious meanings could be easily misunderstood or misappropriated against HIV positive gay men. My interpretation seems to share some common ground with other researchers of HIV positive identity; however, those similarities quickly melt away. For instance, although

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Tewksbury (1994) noted that the language used for self-construction and identification between different HIV positive people differed, he did not explore how language might have changed individually as well. The assertion by Green and Sobo (2000) that, “Who one is, where one is, and who one is with largely determine one’s perception and management of the social risk of being HIV positive, and dictate the extent to which HIV is incorporated publicly and privately into one’s identity” may seem similar to my own analysis (p. 202). While I certainly find this true in the lives of my participants, an important distinction is that participants’ relationship to HIV differed often without any clear or defining event, moment, or trigger—just as all peoples’ affects change often without warning or clear reason. They also assert a finding very similar to my own in claiming, “Rapid and often temporary shifts in identity are not at all uncommon” (Green & Sobo, 2000, p. 202). However, they still posit the stability of some identity categories (e.g., gender) and their examples of changing identities (e.g., marital status, occupation) suggests that they and I differ substantively. Understanding HIV within the frame of affect means that all components of one’s identities are impacted by HIV and impact one’s relationship to HIV. Being a college student with HIV means that HIV changes how one approaches one’s academic endeavors (e.g., Bill and Alex feeling pressured to complete) and that being a college student can change how one relates to HIV (e.g., Kris and Aiden pulling on academic knowledge). Being a gay man and being HIV positive constitute a recursive discourse loop (i.e., getting HIV is the fate of gay men, yet one has failed as a gay man if one gets HIV), informing how the men constitute themselves, and how they feel about their self on any given day. Affect moves beyond trying to understand identities as discrete units or even to think in terms of identity at all. Affective discourse is an expression of the cultural subjectivity of these men. Affect theory explains that HIV/AIDS is experienced in conflicting, fluid, contradictory, paradoxical ways by these gay men, and all those ways are interlaced through the various strands of their lives. Affect is a useful conceptual tool for multiple student populations. Affect should not be considered limited in its usefulness only for queer populations, or those with HIV or other illnesses. Conceptually, affect may be useful as an entirely different way to think about college students’ lives, expressions and cultural positioning. The affective disposition of other student populations may prove more useful in understanding complex intersections of identities (e.g., Midwestern, first-generation chronically ill women) that single-identity studies (e.g., women) cannot capture by going beyond identity categories. In this study, for instance, the discourses

180 employed by individual participants are often exceptionally different from each other. The problems experienced—and, subsequently, the discourses used in response—by Bill, a Midwestern, financially stable, sober alcoholic White gay man are worlds apart from Kris, a Southern, financially struggling, Black gay man. They seemingly have nothing in common; however, affect provides a frame that suggests a shared cultural disposition and oppression while still allowing for analysis of how other systems of oppression (e.g., racism, homophobia) and different categories of difference (e.g., geographic location, socio-economic class) impact them differently. Although I recognize how those differences attune each participant’s experience and self-cultivation, in this work I focus on their shared affect. Using the concept of affect can transcend the difference produced by identity to examine a collective experience that is a result of shared cultural conditions. In other words, affect points to historical, institutional, and systematic problems. Gould (2009) and others make clear that affect, politics, and resistance are closely connected. Affect as a concept is less important than understanding the particular affective structure (e.g., shame, joy, anger) of students’ discourse. It is the particular emotions and feelings—or the way in which individuals draw upon the language of particular emotions and feelings—that implicate larger social and political discourses and conditions that need addressing. In this study, participants expressed their relationship to HIV through an askēsis of shame. Asking why participants use a discourse of shame led me to understand that AIDSphobic and modern gay political discourse create cultural conditions that result in this particular affective structure. The Critique of Shame Shame, as described by Tomkins (1995), is a negative affect involving hiding or covering the self while still retaining interest—a positive affect—in others and the self. Those who are ashamed seek to retain dignity and prevent alienation from others—or the self to the self—by concealing the discredited, or discreditable, aspect of the self. Shame has also been used as a conceptual—as well as a literal—tool to think about the political possibilities and conditions for queer people and to enact change for queer people. However, a number of activists and scholars contest the appropriateness and efficacy of shame as a focus of queer analysis political action. Also, scholars approach shame through the differing languages of cultural production (e.g., Halperin, 2007, 2012), psychology (e.g., Tomkins, 1995) and psychoanalysis (e.g., Muñoz, 1999, 2006). My approach reads and appropriates the latter two discourses through the lens of cultural

181 production. Before I discuss the implications of framing participants’ response affect as an askēsis of shame, I take up concerns and questions about shame articulated through various paradigms. By doing this, I provide a lay of the land, as it were, of how others think of shame while clarifying my use of the concept. Mattilda Bernstein Sycamore (2008), who helped organize the first Gay Shame coalition in New York in 1998, has lambasted academic preoccupations with shame for appropriating queer lives. Sycamore (2008) and her coalitional allies hope to create social transformation by making other queers feel shame for their normative and corporatized politics, organizations, and events. Yet, Sycamore also questions and critiques her own actions, noting the always imperfect and contested nature of political action. Several scholars critique queer theorists’ interest in shame as being tied to racial Whiteness, and usually White maleness, and neglectful of—and appropriating of—the contributions of queers of color (Halberstam, 2005; Perez, 2005; La Fountain-Stokes, 2011). La Fountain-Stokes (2011) argues that a number of racial and queer of color theorists (e.g., Anzaldúa, Fanon, hooks, Lorde) have argued for the need to be shameless in the face of sexual and racial oppression. La Fountain-Stokes (2011) observes that far too often queers of color experience shaming at the hands of White queers who eroticize their bodies but otherwise exclude them for their racial difference. He therefore rejects shame as a viable concept for liberatory practice. However, not all queers of color reject shame as a concept for self- fashioning. Shame and queers of color. One of the most prominent queer of color thinkers to accept shame as an oppositional practice is José Esteban Muñoz. Muñoz’s (1999) theory of disidentification stems from the cultural practices of queers of color who must navigate and negotiate the various and often overlapping “cultural logics of heteronormativity, White supremacy, and misogyny” (p. 5). To disidentify is neither to identify with the available cultural discourse of identity nor to counter- identify, or oppose them. To resist dominant identity discourses in some ways legitimizes those identities; disidentification tries to transform the abject, or shameful, aspects of their selves into something “sexy and glamorous, and not as the pathetic and abject spectacle that it appears to be in the dominant eyes of heteronormative culture” (Muñoz, 1999, p. 3). In fact he explicitly connects disidentification with Sedgwick’s work on shame and affect. He cautions that

182 disidentification is not always a successful maneuver, but it allows some queers of color to craft more livable lives. At least some of the men in this study have demonstrated the potential to identify with discourse (e.g., Bill seems to use the discourse of compulsory able-bodiedness to his benefit); to counter-identify against discourses (e.g., Josh’s and Charles’s positive outlook), or to disidentify (e.g., Jason uses AIDS as death discourse somewhat advantageously; Kris and Aiden view HIV/AIDS as “toxic” or a “curse” respectively, but still use it to propel their activism). Another scholar who argues for an understanding of shame in the lives of queers of color, Stockton (2006) made a similar argument as Muñoz. Stockton (2006) maintains that texts written by—and that address the lives of—queers, people of color, and queers of color “investigate shame (and shameful states) as an invaluable if also painful form of sociality …. This sociality may be precisely why we need to free debasement from its command performance as either oppression or subversion, or, in the now familiar critical sense, both-at-once” (p. 26). Despite critiquing shame as a White-queer-only product, Halberstam (2013) has found failure a productive concept, similar to Muñoz’s theory of disidentification. The limits of shame. Others object to shame based on its inherent limitations. Chauncey (2009), for example, asserts that while shame may have uses, it is too imprecise, too obscure, and insufficiently explanatory to serve as a “master term for queer theory” (p. 278). Love (2009) expresses a similar concern, although remained open to its potential. I take all exceptions and concerns with the concept of shame as a viable political or cultural strategy of resistance seriously. Multiple and different forms of shaming happened to my participants, and, clearly, race stands as one of those differences. Kris in particular brought up the constant barrage of racism and homophobia he has to contend with regularly from gay men and straight men, in addition to combating AIDS stigma. And Kris distinctly draws upon Black male discourse in his formulation of his self concept and understanding of HIV/AIDS (Johnson, 2004, 2008). Aiden mentioned that some men rejected him because of his race, but he felt much more rejected because of his HIV status. Two of the three participants of color—Aiden who is Filipino and Kris who is Black—took community-based strategies to combat AIDS stigma whereas the other participants took more insular, solitary strategies, with the exception of Tony. (Bill was just beginning to explore this route.) These three worked with and organized—or

183 attempted to organize—groups and programs educating others about HIV/AIDS, for example. This could be attributed to racial difference perhaps, and could be an example of trying to establish shamelessness, but I retain the concept of shame because even these responses are best understood as strategies of covering while staying engaged with others. Shame as a Practice and a Feeling These critiques tackle shame in various aspects: as a feeling used as a weapon against certain populations, as a state of possible coalition building, and as a possible identificatory practice. My usage of shame shares commonality with, but differs somewhat, from these last two. Shame as I use it describes a practice of the self (that may or may not include feelings of shame) shared among several HIV positive gay men. Still, racial identity, socio-economic status, spirituality, experiences with illness, and other differences all create variations in this self- cultivation. Indeed, their individual strategies vary as practices of identification, counter- identifications, or disidentification in relationship to being HIV positive. This shared cultural positioning could potentially be a site of political alliance and change, but has not yet emerged as such, and I do not know if it could sustain such action. I do not argue for shame as a recommended practice for crafting a more livable life. I am merely describing the way I understand participants’ cultivation of their selves. Ultimately, I agree with Love’s (2009) assessment of the utility of shame in pointing to new ways of thinking carefully about underlying problems and not relying on staid and simplistic discourse. Shame … is important because it resists the kind of idealist affirmation that is so attractive to a marginalized and despised social group. (I am talking about us.) Queers are hated; we wish we weren’t, but wishing does not make it so. The main problem with the discourse of gay pride is that it turns its attention away from the real problems that face gay, lesbian, and transgender people. Proponents of gay pride talk as if the main problem we face is shame, but shame isn’t the problem: homophobia is. (pp. 257-258) Not only is the main problem for gay men homophobia, but for HIV positive gay men, part of the problem is quite possibly gay pride, or rather the emotional habitus created by the current politics of gay pride. Shame, or just “feeling bad about being queer can serve as a reminder that the magical solution of affirmation is inadequate and push us toward different kinds of responses” (Love, 2009, p. 258).

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Again, I wish to emphasize that my discussion of shame relates to a description of participants’ discourse rather than their feelings or emotions, although most participants describe feeling ashamed at some point. Of course, they expressed many other affects, feelings, and emotions as well, ranging from the positive to negative (including ambivalence or indifference, and other less easily categorized feelings). However, in trying to describe only discourse and distance myself from describing the psychology of participants, I nonetheless admit that I invariably dip into descriptions of feeling. The discourse of shame, even when the men aren’t feeling ashamed, is a response rooted in the way these men feel about social shaming practices and discourses. In particular, these men retain some positive feelings towards their selves and others while also experiencing the negative feelings engendered by being gay in a heteronormative society and having HIV. They also contend with the feelings generated by gay political activism, which I discuss in the next section. Identifying specific affects like shame can help diagnose “sociohistorical or ideological dilemmas” and the impact that affect has on political action (Ngai, 2005, p. 12). What then does shame as a practice say about the dilemma faced by these men? Shame as a Response to Social Contempt Although shame is a blend of positive and negative affects in response to negative and some (seemingly) positive social discourses (i.e., gay pride), I first want to clarify the outwardly and overtly negative American social reaction to HIV. Social contempt—the attempt to expunge the visibility or intelligibility of HIV positive people—the attempt to limit and demark HIV as belonging in the homosexual sphere—finds expression in the everyday and the structural. Universities that resist developing resources to support HIV positive or other chronically ill students (such as Kris’s and Aiden’s universities) would be one such expression. Rejection by potential sexual and romantic partners is another. The reluctance of friends to discuss such challenges, or fear of catching HIV by drinking after someone are all symptoms of social contempt. The hurdles many of these men had to face to secure financial support in obtaining necessary medication are another. Contempt finds expression in the laws of 32 states that criminalize HIV transmission (Center for HIV Law and Policy, n.d.). Contempt and stigma. Social contempt and stigma closely adhere to one another; their relationship may be defined several different ways. Goffman’s (1963) influential definition describes stigma as

185 personal attributes that may be discredited or discreditable. The former term refers to an attribute that is visible or known, and the latter an attribute that is currently hidden, but would discredit an individual if known (Green & Sobo, 2000). Although widely cited, Goffman’s theory centers primarily on interpersonal interactions, and lacks a framework for institutionalized forms of stigma, or the ways institutions generate various degrees and kinds of stigma (Love, 2011; Seidman, 2013). However, Goffman’s theory of stigma remains capacious enough to understand affect, and shame specifically, as affect/shame operate on both personal and the cultural levels. In my initial overview of stigma I stated that within a queer frame stigma may be a seen as a product of a social order that seeks to render anything that threatens heterosexual (able-bodied) hegemony as outside it. In other words, stigma is a product of social contempt, but after having conducted this study, I now posit that stigma is a form of social contempt. Stigma, operating on personal and institutional levels, is an expression of contempt that hails the subject to cover or pass, so that the “threat” of that individual does not enter into the heterosexual arena. Stigma in Goffman’s (1963) account creates conditions wherein not only must individuals formulate their own strategies for responding to the stigma, but they also receive contradictory messages about the best way to do this. Although, again, Goffman describes these messages as coming from other individuals, it is not difficult to consider the contradictory social and institutional messages these men receive. From institutional silence to peers’ hurtful comments and jokes to AA discourse on fearless self-examination to gay pride discourse asserting the need to be out and proud, the barrage of explicit and implicit social messages, often at odds with each other, are evident in the affective discourse of participants. In particular, we see the need for them to cover and/or pass if they wish to stay engaged with others or wish to hold on to any kind of self-respect. Shame—covering or passing as needed—is the response to the contradictions of cultural stigma while still holding on to the self and the other as worthy of interest and investment. Understanding this formulation leads to the consideration that certainly some HIV positive gay men do not respond with shame. That is to say, they may lose their self-worth or maintain their dignity but respond contemptuously in return. Why, then, do these men respond with some degree of positive affect? Some of these men describe themselves as “toxic” and “poisonous” at times, yet remain invested in others and return to investing in themselves as worthy. I see this as a response to the current gay political and cultural climate. However, while

186 the politics of gay liberation provide some degree of benefit and possibilities for HIV positive gay men, it also works against their interest in many ways. Among those problems is the abandonment of AIDS as a site of gay political focus and the fading of discourses of AIDS activists that may be beneficial to gay men with HIV/AIDS. From the Politics of AIDS to the Politics of Respectability As early as 1993, journalist Jeffrey Schmalz, himself a man with AIDS, wrote an article asking “Whatever happened to AIDS?” in the New York Times Magazine. Fearing his imminent death (and, indeed, he died soon after from AIDS-related complications), Schmalz (1997) went looking for why “12 years after it was first recognized as a new disease, AIDS has become normalized, part of the landscape. It is … little threat to the core of American political power, the White heterosexual suburbanite” (p. 691). He identifies a number of complex and complicated factors in the scientific community, changes in AIDS and gay activism, seemingly friendly but mostly lackluster governmental response (e.g., an appointment of an ineffectual AIDS czar; Clinton’s rhetorical support on AIDS issues versus his actions), and a decline of interest from the press. The broader social disinterest in AIDS certainly reflected, if not partially produced by, the changing emphasis of gay and lesbian political action. Sedgwick (2003) describes it as “their strategic banalization of gay and lesbian politics as well as their resolute disavowal of the historical and continuing AIDS epidemic” (p. 13). The dominant thrust of that “strategic banalization” has been to forefront the national legalization and recognition of same- sex marriage, a movement that took significant foothold in the 1980’s, in part because of the AIDS crisis (Chauncey, 2004). Although interest in same-sex marriage (legal or otherwise) had existed for decades prior, a number of factors starting in the 1970’s started to move marriage to a more prominent position (Chauncey, 2004). One of these factors was the often devastating losses and exclusion experienced by the partners and chosen family of those who died from AIDS complications (Chauncey, 2004). Locked out of making medical and final decisions for their lovers, denied access to shared property, cut out of wills by biological family members, and facing the indignity of non-recognition of their relationship on any level prompted many gay men to begin thinking about how to protect themselves. This very justified rationale and interest, however, has been accompanied by a more conservative discourse of respectability.

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The Politics of Respectability The term “politics of respectability” originated in Black feminist thought to describe the ways certain Back women sought to assert their dignity in a racist and patriarchical society (Harris, 2003; Patton, 2014). Likewise, queer scholars and writers have been long concerned with the politics of respectability even when they named it differently. An early Canadian gay magazine derided gays who attempt to emulate respectable (i.e., heterosexual) society as indulging in “piss elegance … No matter how proper, respectable or conventional a gay person is, he will never be accepted by most middle class Establishment straights” (Freedman, 1973, p. 21). Gay political respectability, which makes claims for dignity through disavowal of queer sex and sexuality, has been a continuing tactic since the inception of the homophile movement (Duggan, 2002; Warner, 1999). Although perhaps necessary and useful in earlier decades, disavowing one of the central differences (i.e., sex and sexuality) for organizing for political action “expresses the same stigma” of the dominant, heteronormative culture (Warner, 1999, p. 46). Also, respectability politics creates “a hierarchy of respectability … a hierarchy of shame” (Warner, 1999, p. 49). Here the similar effects of gay and Black respectability politics become very clear. Yuvraj (2012) adds an important consideration that respectability is a performative, and, accordingly, “this performance does not end, … nor does its social- and self-evaluation. This means that a person neither is nor can become respectable, … rather, she is only ever in the process of being and becoming respectable by doing respectability” (p. 419). Although much (although not all) AIDS activism “made the recognition and affirmation of queer sex central to its strategies,” AIDS also provided an opportunity for respectability discourse to renew the strength of its voice (Warner, 1999, p. 51). In the midst of so many gay men dying, the claim that gay sex was immoral, irresponsible, and immature became difficult for some to contest (Gould, 2009). As AIDS decimated those who did contest these condemnations, as people looked for recourses to protect their property and surviving lovers and friends, and as the presence of AIDS activists diminished in the public view, respectability discourse gained a new hold on gay politics (Warner, 1999). Respectability politics are also part of an expression of an increasing national—and global—cultural and economic shift towards neoliberalism beginning in the 1980’s (Duggan, 2002). Broadly defined, neoliberalism encompasses a range of economic, cultural, and politics

188 policies and discourses that position the interests of the private business and corporate sector over the public, non-business sector or populations, when public interests do not benefit business owners (Duggan, 2002). In this climate respectability politics arose, tied to the politics of homonormativity: “a politics that does not contest dominant heteronormative assumptions and institutions but upholds and sustains them while promising the possibility of a demobilized gay constituency and a privatized, depoliticized gay culture anchored in domesticity and consumption” (Duggan, 2002, p. 179). Although similar in some ways to assimilationist arguments in the homophile movement, homonormativity represents a definitive shift from conservative homophiles in trying to align gay politics to meet corporate interests (Duggan, 2002). In trying to secure gay rights by appealing to private and corporate interests, the politics of homonormativity intersect with discourses of compulsory able-bodiedness and oppose the gains of queer and AIDS activists in making sexuality more public. Respectability and homonormative politics share much common ground if they are not identical. Although respectability discourse is not limited to marriage, marriage remains a primary political goal for gays to distinguish themselves as respectable social members (Yuvraj, 2012). Respectability discourse goes so far as to maintain that gay marriage could have prevented the AIDS crisis by curtailing promiscuity, and will bring gay men into maturity, greater civility, and greater dignity (Bronksi, 2011; Gould, 2009; Warner, 1999). More recent permutation of this discourse asserts that legalizing same-sex marriage will reduce HIV infection by making queer men more “affirmed,” and therefore take fewer “risks” (Anderson-Minshall, 2014; “How Same Sex Marriage,” 2013; Giuliano, 2013). Those making the statements may indeed believe what they are saying; it’s also very likely they are attempting to renew their relevancy and donations by attaching themselves to the politics of respectability (Staley, 2013). The Politics of Respectability as the Politics of Happiness This politics of respectability comes with its own affective register. The politics of respectability and inclusion argue that, having achieved inclusion to social institutions, and thereby having finally gained respectability—keeping in mind Yuvraj’s (2012) caveat here— gays and lesbians will finally be happy. The promise for happiness creates a new or additional problem for HIV positive gay men. Homosexuality in the United States has long standing associations with negative affect and emotions that the politics of respectability seem eager not only to counter, but to forget and

189 erase (Halperin, 2012; Love, 2007/2008). In the light of the changing rhetoric of the mainstream gay liberation movements in the past few decades, and perhaps especially as certain political goals are achieved (e.g., access to governmentally-recognized marriage, improved social attitudes toward homosexuals), old ways of feeling homosexuality are no longer socially permissible. Being a happy homosexual is the only form of public gay expression now sanctioned, and it is a rather impoverished conception: “for most, marriage + military inclusion + a few queers on TV = rainbow nirvana” (Walters, 2014). Although dissident queer voices exist which advocate for overturning the very systems many gays seek to enter and insistently refute their promised material, social and affective benefits (e.g., Conrad, 2014; Sycamore, 2008, 2012), this perspective and agenda is clearly not shared with the most visible, politically connected and well-funded organizations. As Love (2007/2008) puts it, Being happy signifies participation in the coming era of gay possibility. In this brave new world, one can be gay without necessarily being tragic; however, one may only belong by erasing all traces of the grief that, by definition, must remain sealed off in the past of homosexual abjection. (p. 54) As such, most representations of gayness rely on telling the story of how social inclusion leads to more happiness. For example, in May 2014 lesbian celebrity Ellen Degeneres pressed fellow gay celebrity Jim Parsons on when he would get married to his partner of over a decade, that “it gets better” after marriage. Parsons demurred, saying he hadn’t felt “enthusiastic about it [and now] I feel like I’m a loser for the cause. … I’m shamed.” Here, the deployment of happiness discourse led to less happiness as Parsons expresses—and perhaps genuinely feels—shame. “It Gets Better” has been a prominent line of happiness discourse since the inception of the “It Gets Better” project, which offer video snippets of individuals or groups assuring young queers that life will improve upon adulthood or in some imagined future. While these videos may perform some good, they also reflect the more oppressive side of the respectability paradigm by primarily valuing homonormative forms of adulthood and focusing the responsibility for improvement on the individual queer (Puar, 2010). Participants and the Politics of Respectability Not all of the men in this study pursue marriage as a personal or political goal; neither do they all see marriage as key to asserting their dignity. However, many of them discussed their lives in ways that show that, regardless of their attachments to respectability politics,

190 respectability politics invariably attaches to them. Regardless of how they go about asserting their worth and dignity, they discussed their lives in ways that illustrate their understanding of how being HIV positive is not respectable in heteronormative or homonormative society. HIV as disrespectability. In respectability politics, queers must cover or deemphasize their sexuality. Inclusion is contingent on not highlighting the fact that one is sexual. Although HIV can be transmitted in non-sexual ways, HIV suggests sexual activity, particularly for gay men. Several participants discussed the ways in which revealing their HIV status resulted in value judgments against them. Although most of them had active sex lives as HIV positive men, some limited themselves to other HIV positive men in order to avoid condemnation. Bill, Josh, Kris, all remarked specifically on how others treated them as sexual pariahs because they were HIV positive. Kris noted how being HIV positive was not respectable to others as a gay man: There are very few people around here that have a problem with me being gay. But I know as soon as I say something about being HIV positive, it’s going to become this massive issue, and I don’t want that. … People are going to feel like I over-sexualize things. Kris also insisted that people would consider him promiscuous, a sentiment shared by Josh. [Gay men think] that I’m a whore because I have it, which, whether I am or not is regardless, because I got it from my second sexual encounter ever. I don’t think me being a whore has anything to do with it. The reaction from straight people does not differ much: “It’s similar, it’s never, ‘Oh you have a chronic condition.’ It’s like, ‘Oh what kind of lifestyle did you have that got you that chronic condition?’” Bill discussed how he felt how being HIV positive was as disreputable as being an alcoholic: So, I never planned on becoming an alcoholic. It just kind of happened. I never planned on getting HIV. … But, the correlation between the two and how society can blame for both is certainly on par with the same thing, like pointing the finger of blame at me. Alex discussed this in very different terms, but saw HIV acting as a sexual moral governor. This is extremely fucked up, especially now that I’m positive, but I used to say that, there shouldn’t be cures for everything, because …the fear of getting that keeps people from doing really bad things. And it’s just like if there’s a cure for HIV, ... what is to stop the

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human race from becoming even bigger whores and creating a whole new virus that’s going to be incurable? Here, Alex maintains that HIV keeps people from being disrespectable—and being “whores” is identified as particularly disrespectable—thereby suggesting that to have HIV means one engaged in disrespectable behavior. Although Alex’s stance drastically differs from the other participants, it serves as a striking example of the ways in which many people may view HIV/AIDS. Even when participants didn’t overtly express that they felt HIV made them less respectable in other peoples’ eyes, they discussed the need for people to be cautious about whom they shared that information with. Aiden, the most out about his status, noted that although his fraternity brothers supported him, a friend in another chapter who came out as HIV positive had to leave because of the poor treatment he received. Investments in the politics of happiness. The degree to which the men in this study invested in homonormative forms of happiness as a way to assert their dignity varied. However, to one degree or another, homonormative happiness politics invaded and inflected their world. Jason was one of the least invested, although his view that gay men during the AIDS epidemic should have quit having sex so they could focus on finding a cure resembles the respectability discourse of individuals like Larry Kramer or Michael Signorelli. By and large, although content with his life and his partner, Jason was rather melancholic about HIV. He felt, “No matter how you look at it, it’s a handicap.” Bill was very invested in homonormative visions of the future: I see all the yachts and the boats and you know I’d like to, that whole those who do well thing. I’d like to be able to have some of that, and be up on a little bit higher of a floor, and I’d like to have kids, [and] like to have some vacation homes. Bill noted that he didn’t even like children currently, but felt an unknown need to have them, especially biological ones: “I think it boils down to this whole caveman type, … I don’t know. It’s really weird. I just, there’s something about it that makes you want it.” Other participants tended to fall on a spectrum between these two extremes. Many of them had normative visions of future happiness, which Daniel perfectly expressed: I’d love to have a partner, love to get married, love to, [in a whisper] especially since we can now. … I guess it’s the dream that many have: to have a home and a couple of dogs and … if he’s a little bit younger than me and wants kids, I’m open to that.

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Alex’s childhood experience left him scornful of marriage, but he complained about how HIV adds to the high cost of finding a way to have children (e.g., surrogacy, adoption, sperm cleaning). Tony was not particularly interested in married life, but was very invested in bootstrap ideology, feeling ashamed that he was currently dependant on government assistance to purchase HIV medication. Aiden pulled upon discourses of gay pride, but those discourse very much reflected current inclusion-assimilation goals many times. Even those less invested in such normative visions still had some attachment to homonormative life. Kris, for example, the fiery activist, expressed a love for the television show Noah’s Arc. This show broke ground by providing a program featuring Black gay men living successful lives. However, as innovative and refreshing such an offering was, homonormative life was heavily portrayed as the good life (Yep & Elia, 2012). Ever since it first began devastating gay lives, AIDS has served to enflame and reignite discourses and feelings of pride, shame, respectability, and resistance (Gould, 2009). In the face of AIDS—and its accompanying political and social contempt—some gay men saw resistance to heterosexual norms as the only viable option to live, or to live as long as they could with dignity, and some gay men saw the disease as consequence of not adopting heterosexual norms (Gould, 2009). With so much death, even the staunchest believers in gay dignity may have had cause to doubt their worth (Gould, 2009). In other words, AIDS has always evoked positive and negative discourses and often discourses of ambivalence. The politics of gay pride, gay respectability, and queer resistance have always informed how gay men have responded to AIDS. While medicinal advances stemmed the tide of so much loss of life—although far too many still lose their life to AIDS today—this discourse of ambivalence clearly continues in the words and investments of these participants. Today what perhaps differs most is the degree to which homonormative and happiness discourse has become pervasive and the discourse of queer resistance has diminished. I wish to emphasize that I am not criticizing these men’s attachments to normative or conservative visions of the good life. Rather, I am pointing those attachments out to remark on how investments in this particular ideal of the good life may work very strongly against them in ways they may not realize. Homonormative happiness discourse contributes to an emotional habitus that suggests that happiness in unachievable outside of inclusion in heterosexual society and provides no outlet or representations for gay men—or other queers— who may be unhappy. Happiness discourse also does not account for the ways that achieving

193 such aims (e.g., marriage) will likely not change the fundamental cultural devaluing of gay men in heterosexual society, and certainly not gay men with HIV/AIDS (Halperin, 2012). Looking for (Un)Happiness If one feels bad, sad, unfulfilled, ashamed about being homosexual—or being HIV positive—today, one must turn to older representations of queers to find models on how to contend with such emotions. Like Love (2007/2008), I am not suggesting we do not benefit from more positive representations of queer people today, and HIV positive people certainly benefit from knowing their lives are not over. However, given a surplus of positive images, those “who are hopeless about the future may need something else” (Love 2007/2008, p. 56). For HIV positive gay men, the ability to find any representations at all are extremely limited in availability and message. In 2013, only nineteen stories about HIV/AIDS was carried by the three major cable news networks (i.e., CNN, Fox News, MSNBC) in total (Lynch III, 2014). Social media campaigns concerned with HIV/AIDS necessarily focus on the ability to survive and thrive. One such campaign, The Stigma Project, states, “We must begin shifting towards a new way of thinking about HIV/AIDS. Moving away from thoughts full of death and sadness and towards thoughts of life and hope for the future. [sic]” (“What is HIV Neutral?, n.d.). Some men could turn to popular reality show RuPaul’s Drag Race, which has had two drag queen contestants disclose themselves as HIV positive over its six seasons. However, the show tends to gloss the challenges faced by these individuals in favor of a more commercialized, purely optimistic tone (Hargraves, 2011). Conversely, productions like Larry Kramer’s The Normal Heart, a play written in and about the early days of the AIDS epidemic, which was revived in 2011 on Broadway and adapted for cable television this year (2014), certainly shows positive and negative gay men dealing with the challenges and unhappiness of AIDS in a pre- antiretroviral era. Yet, its historical setting and the play’s moralizing tone—not to mention its limited availability—may not serve as a readily available resource for self-cultivation (Piepenburg, 2014). Complex representations are most likely found in periodicals or online communities designed for HIV positive people. But, in short, the options are few, and no current shared cultural discourse remains for HIV positive gay men to think about themselves, at least not to the extent offered by AIDS activists in the 1980’s and 1990’s. HIV positive gay men must, by and large, connect to the discourses created by past queers in response to a different historical moment. And, as such, despite the richness and complex affective responses

194 presented, may not speak to men living in this time, with its many different contexts for gays and HIV/AIDS. I have no desire to romanticize past oppressions or want to return to a time when HIV positive people were maligned, ignored, and discriminated against openly, systematically, and nationally all for the sake of regaining a shared political and cultural milieu for helping gay men to make sense of HIV/AIDS. But, as Love (2007/2008) explains, “One might, however, register a protest against the compulsory happiness of contemporary gay and lesbian life without wishing for the return of the closet or for the repeal of progressive legislation” (p. 62). Furthermore, people who are HIV positive and queer people continue to face sufficient oppression today; they remain maligned, criminalized, and discriminated against when they are not ignored. The ways in which these happen, however, are much less noticed on a national scale. In part, the continuing, ever-present social contempt of AIDSphobic discourse—linked to discourses of deviance and homophobia—explains this oppression. But the sea change in national gay politics has led to new conditions that impact the subjectivity of HIV positive gay men and the way oppression plays out in America. Navigating Between Scylla and Charybdis The discourses that HIV positive gay men must contend with are multiple and often connected. They are generated from various sectors and institutions of society. However, at the risk of over-simplifying the proliferation of interlaced discourses around HIV/AIDS and gay men, I view the HIV positive gay men in this study as positioned between two prominent bodies of discourse: AIDSphobia/social contempt and gay respectability/compulsory queer happiness. The Grecian myth of Scylla and Charybdis provides a useful metaphor for considering the precarious political and social maneuvering required of HIV positive gay men. Scylla and Charybdis were two monsters between which Odysseus had to navigate his ship. The creatures were located such that avoiding one meant necessarily encountering the other; “they themselves constitute a proverbially inseparable pair of lethal threats to sailors, between which a choice must be made that is no real choice, since each offers a different route to destruction” (Hardie, 2009, p. 118). Charybdis sucked in the water of the sea, creating a whirlpool that would drown an entire ship. Scylla hid behind the rocks on the other side of this whirlpool, laying in wait to devour passer-bys. Odysseus ultimately chose to lose a few of his men to Scylla rather than lose his entire ship to Charybdis. In some tellings of the myth, Scylla was a beautiful maiden whose

195 sexual organs and lower half were transformed into a multiple-headed monster. Her beastly half laid submerged under the water while her alluring beauty remained visible to all; her ghastly and deadly qualities hidden (Hardie, 2009). AIDSphobic discourse that positions the HIV positive gay man as a victim or criminal— as pathetic—is Charybdis. This is a whirlpool that seeks to drown the validity, dignity and existence of these men’s lives. I see the discourse of gay respectability—the discourse of compulsory queer happiness (Love 2007/2008) that is contingent on “approximating signs of straightness” (Ahmed, 2010, p. 115)—as Scylla. This discourse seems beautiful and a stable rock, but conceals its contempt beneath its promise of happiness. Both of these discourses present obstacles, barriers and dangers for these men, sometimes differently and sometimes in very similar ways. For instance, AIDSphobia discourse works to exclude or displace the HIV positive gay man from the heterosexual public sphere. Gay respectability/happiness discourse operates similarly, as gay men seek to enter the respectable heterosexual sphere and its institutions they choose to forget or silence those who are HIV positive. Both bodies of discourse erase and both demand respectable and able-bodied bodies although in different ways. The former discourse says “this is not our problem” and, affectively, “your suffering is pathetic.” The latter says “this is no longer our problem” and “you cannot be happy if you are HIV positive, or known as being HIV positive.” So while the content of the discourses may differ, and the sources from where they originate differ, these discourses catch gay men living with HIV between them, positioning those men as unworthy of dignity or consideration. Shame: The Art of Fighting Monsters The askēsis of shame is the way the nine men in this study have responded to this cultural milieu that centers them between the whirlpool (i.e., Charybdis) of overt hostility-contempt and the seemingly beautiful but equally treacherous and hidden threat of respectability-happiness (also, a kind of covert contempt) that seeks to forget or exclude HIV positive gay men. The askēsis of shame tries to maintain the “place” of HIV positive gay men in the social order while working with and against—at varying times—the force of these beasts. Halperin (2012) observed that gay male culture, as a form of self-protection against heteronormative culture, often takes an ironic—or camp—detachment from its own suffering: “It is to know one’s hurt to be laughable, without ceasing to feel it” (p. 378). The askēsis of shame is not an ironic

196 detachment from the problem of being an HIV positive gay man; it is completely earnest response to heteronormative and homonormative discourse. The askēsis of shame attempts to protect the self by countering the charge of being pathetic and unworthy of dignity in two ways. One is through the differing forms of covering and passing these men employ. Caught between the demands of both straight and gay culture and politics may invariably necessitate that shielding the HIV positive self as the only available option (Yoshino, 2006). Participants realized—and worried that—capitulating to the demand to cover inhibits or limits the possibility for social change, but the risks of not covering are great. The second response is to counter the charge of being disrespectable through earnest investment in the self and others. Academic success, career success, aligning or refining personal values, mending relationships and engaging in better health routines were some of the ways these men expressed self-investment. Displaying compassion towards others, being politically active, and educating others about HIV/AIDS were their expression of interest in others. This response can be seen as “buying into” respectability discourse by trying to perform respectable behavior. But it may also be seen as a counter-discourse by demonstrating respectability in ways that do not rely on the sanctioned institutions of modern gay politics (e.g., marriage and the military). In order to discern whether this strategy amounts to capitulation or counter to respectability discourse—identification with or disidentification with—would entail prolonged consideration of each participant individually. For now, suffice it to say that for some of the men, it may be both capitulation and counter at different times. Several of the men did articulate visions of future happiness that replicate hetero- (and now homo-) normative ideals (e.g., husband, property ownership, children). With that dream, however, clearly comes concern that their HIV status may make realizing “the good life” difficulty. Yet holding on to this vision of “the good life” may in fact be harmful. Berlant (2011) calls this “cruel optimism … when something you desire is actually an obstacle to your flourishing” (p. 1). Because the politics of entering into these institutions demand an able-bodied, non-queered (i.e. HIV negative) individual, those men who invest in this kind of happy future may ultimately be working against their own interests. Indeed, all queer people who invest in the politics of respectability may find themselves constantly trying to perform happiness, finding they can never attain it (Yuvraj, 2012). Those invested in this form of happiness may potentially benefit from desiring something different. Wanting such things may result in the happiness they imagine upon attaining them, but

197 as Love (2007/2008) surmises, “The Good Life may be out there somewhere—then again, it may not. In any case, we [queers] have tended to find our pleasures elsewhere” (p. 63). The Oars of Expression: Other Discourse Sources for Self-Cultivation Because the HIV positive gay male cultural expressions that existed in the 1980’s and 1990’s have faded or changed considerably (Rofes, 1998), participants have little choice but to use the cultural discourses of other communities, media, and organizations, some of which are queer, some of which are not, as their oars to steer between Scylla and Charybdis. The differences between these discourses—and their ability or inability to provide a re-articulation of being HIV positive in livable terms—results in variations in each man’s particular strategy or style. A detailed examination of these variations would require significantly more length, and therefore will be the subject of future analysis. While medicinal advances and social, economic and political factors have severely altered and diminished the discourse advanced by AIDS activism, it retains sufficient force to leave some mark on participants. Indeed, those men who shared their status for educational purposes and even those who worried about the potential impact of not sharing their HIV status more widely are echoing not just gay liberation discourse, but the discourse of queer AIDS activism. Now, some or most of them may not be conscious of this connection. Daniel is the only participant who lived through the pre-antiretroviral days of the epidemic when AIDS activism and service organizations were most visible. Several participants had watched at least one documentary on ACT UP, although only Aiden consistently discussed AIDS activism as relative to his self-cultivation. Nonetheless, I find it likely that the impulse to hold on to dignity and self-worth exhibits at least a remnant of the discourse queer AIDS activism hoped to build. Unfortunately, non-homonormative alternatives for conceptualizing the HIV positive gay male self developed by those queers who fought and worked so hard during the 1980’s and 1990’s have all but disappeared. Although there remains individuals and organizations who still insist on the need to maintain focus on AIDS as a concern for gay politics and action, these voices are sufficiently few—and relatively under-resourced compared to other gay political projects—no clear model exists for being an HIV positive gay man in today’s medicinal and political climate. Instead, these men are dependent on other communities, organizations and individuals to decide how to chart the waters between those discourses that seek to strip them of respectability and visibility.

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Still, shame as a response suggests that gay men are highly resilient to the slings and arrows of a society that denies them dignity as homosexuals and as HIV positive homosexuals— and for some, as homosexuals of color. Shame suggests that feeling hurt—or being afraid of being hurt—is not antithetical to transformation. Shame may imply that people can carve out their own forms of respectability and ethical lives. Shame is not a perfect strategy, and is subject, as discussed, to being interpolated by the politics of happiness and respectability. Shame may not be sufficient to always withstand the erasure of AIDSphobic discourse. What can be done about this? Are there ways to support HIV positive gay men in creating a subjectivity that withstands the oppressive social context? In the following section, I discuss some ideas for how those working in higher education might respond in advocating for and working with college students. However, while we may support individuals, large-scale political change needs to happen to make life better for HIV positive gay men. As I previously stated, organizations, individuals, and publications exist that are working to improve both the material and social conditions for people with HIV. But the larger social discourse about HIV/AIDS must change; AIDS must become a priority for gay politics again. Alliances must be formed that transcend identity categories of sexuality, gender/sex, race, and class. Change must come from people who are mobilized around some kind of affective disposition towards AIDS, whether it be anger, excitement, distress, joy, or shame. Likely, it will take all of these to break up the world as it is. The Incitement to Silence in Higher Education If higher educational institutions is indeed silent about HIV/AIDS, Keeling (2002) stresses that HIV/AIDS should be a matter of attention for higher education: “regardless of the question of personal risk, HIV/AIDS is an important social, cultural, and global problem that demands the attention of every student, school, community, and society” (p. 190). Furthermore, Keeling asserts, “To ignore HIV/AIDS is to neglect the critical realities of [affected] students’ lives” (p. 190). However, none of the institutions attended by participants in this study adhered to that viewpoint, and likely many colleges and universities do not. Why would institutions choose to remain silent on HIV/AIDS? As demonstrated in Chapter Two, there had previously been an interest in the subject on campuses across the nation. However, that interest, when it existed, was focused primarily on prevention or institutional policy. The question has often been as much—if not more—“What do we do about AIDS and

199 people with AIDS?” as it has been “How do we support students (or faculty and staff) with AIDS?” Fair and equitable policy and treatment is certainly one aspect of that question, although given local or even national pressures, the certainty of institutional support is never a given, and may even fold under enough force (e.g., a policy to not relocate an HIV positive student in campus housing may be ignored under community pressures). And even these questions seem to have receded into history. It is entirely possible that some discourse, such as the creation of AIDS policies, has dissipated because the need—or the perception of need—for some it has diminished with certain improvements, such as the strengthening in 1998 and 2008 of the Americans with Disabilities Act to protect people living with HIV (“About HIV/AIDS Discrimination,” n.d.). The Incitement to Disregard Foucault (1990) recognized the power silence has as a discourse that acts upon us: Silence itself … is less the absolute limit of discourse … than an element that functions alongside the things said, with them and in relation to them within over-all strategies. There is no binary division to be made between what one says and what one does not say; we must try to determine the different ways of not saying such things, how those who can and those who cannot speak of them are distributed, which type of discourse is authorized, or which form of discretion is required in either case. There is not one but many silences, and they are an integral part of the strategies that underlie and permeate discourses. (p. 27) Foucault (1990) follows his explanation with the example of how 18th century secondary schools seemed devoid of any discussion of sex, yet if one merely would “glance over … their whole internal organization: the question of sex was a constant preoccupation” (p. 27). Yet seemingly, the case is very different with HIV/AIDS and higher education. Preoccupied perhaps at one time, higher education—as an institution—now seems decidedly unconcerned with HIV/AIDS. Yet silence resulting from inattention is as powerful as silence resulting from obsession. Keeling’s (2002) insight that universities followed the larger cultural shift in attention away from AIDS certainly makes a great deal of sense. Yet there are aspects of this larger shift away from a focus on HIV/AIDS that Keeling alludes (intentionally or unintentionally) to but does not elaborate upon, understandably. Keeling observed that the broader attention to AIDS waned in the US as “the anticipated “breakout” of HIV into the so-called general population never

200 occurred” (p. 189). In other words, as the fear and possibility of heterosexuals facing an AIDS epidemic faded, time, attention, and resources no longer needed to be spent on the virus. The threat of AIDS had been contained and quarantined sufficiently in the minds of heterosexual Americans to be exclusively homosexual (Dean, 2000). Perhaps the advances that were made (e.g., safer sex techniques, drug therapies) in large part because of queer activism, were so successful in limiting the spread of the virus to the larger heterosexual population (along with already established community or network patterns from the way the virus was introduced into American society) that it served to reify in the minds of the larger American population that this was indeed a homosexual disease (never mind the few heterosexuals who acquired it). Thus, higher education may simply reflect the disinterested homophobia of larger society. When universities deal with HIV/AIDS, as with most institutions, they will likely act, if not to squash, then to assimilate, institutionalize, and administrate those factions, individuals, communities, and organizations that would disrupt the status quo and regular functioning of institutions. Ferguson (2012), examining how universities lessened the threat posed to its functioning by racial and feminist student movements, also claims universities have worked “to determine how best to subject queer sexuality to its managerial calculus” (p. 209). Citing Rubin’s watershed essay “Thinking Sex,” Ferguson provides the example of offering domestic partner benefits to university employees. Frequently, requirements to obtain domestic partner benefits impose forms of social pairings and kinship configurations (i.e., those within Rubin’s “charmed circle”) upon queer individuals that bring them into heteronormative (and able-bodied and classed) cultural logic (e.g., monogamous, coupled, employed, property sharing). Queers who do not conform to these standards of acceptability are denied resources, respect or even perhaps intelligibility within the institution (Ferguson, 2012). From this perspective of management and institutionalization, it is not surprising that participants did not encounter AIDS discourse, even if their institutions did, in fact, deal with HIV/AIDS overtly. In such cases, discourse is unlikely to be highly visible, as this could draw unwanted forms of attention. Such administration likely involves incorporating HIV/AIDS into very discrete (and discreet) pockets of the institution, such as through health services, or perhaps recognition of World AIDS Day through a multicultural services office. If students are to encounter HIV/AIDS discourse in the university setting, it is most likely through universities efforts at prevention education or as a focus of or unit in a course. It is unlikely, given the larger

201 societal disavowal of a continuing AIDS problem, and the stigmatizing disease metaphor that inhabits when AIDS discourse circulates, that universities will willingly promote any kind of discourse that would suggest they have HIV positive students sitting in their classrooms, using their services, eating in their dining halls, and/or sleeping in their residence halls. Again, of course, while institutions may be or seem silent, they contain many actors who may or may not hold that silence. Higher Education Possibilities Because universities do contain actors that can counter silence with discourse, can create new discourses, or magnify existing discourses, higher education remains a site for exploring, altering or creating new discourses with and for college students living with HIV. As Abes (2007) rightly concludes, “Administratively and programmatically, language can challenge fixed identity categories. …. To be meaningful, however, language changes must be accompanied by norm-challenging practices” (p. 74). Although Abes refers to how lesbian college students can re-think identity categories and labels, the discourses on any particular campus clearly impact how students with HIV think about themselves. There are certain spaces on campus where staff and students might be specifically educated about HIV/AIDS and where affirming and supportive language is used to acknowledge the possible (and probable) existence of HIV positive college students. Such spaces include health centers, disability offices, housing departments, deans of students’ offices, and identity-based centers, to name just a few. However beneficial such changes could be, they first must not be superficial—aping the language of inclusion but not providing a safe environment at all. And even in the best environment, these are small changes that may not reach the students they need to most impact and are unlikely to change the larger campus (and certainly not the larger social) discourse. Overviews of the environment and resources available in institutions of higher education for gay, lesbian, bisexual, trans, and other queer (GLBTQ) students invariably point to campus resource / identity-based centers (where they exist) as still the primary mode of support and the continuing lack of information on how GLBTQ students fare in higher education (Bazarsky & Sanlo, 2011; Cawthon & Guthrie, 2011; Marine, 2011). The kind of programs, centers, and accommodations described by these authors are important, but they also clearly illustrate the extremely limited ways in which higher education serves queer students. Furthermore, it demonstrates the intractability of large-scale cultural change; those wishing to support queer

202 students must do so through programs that ultimately position queers as a problem that universities must accommodate. Such accommodations also serve the interests of maintaining the heteronormative status quo of the university by exerting managerial control over students’ sexuality in disparate locations and programs (Ferguson, 2012). Important to note, none of these overviews on LGBT students mention HIV positive students as a population to support (minus Marine’s (2011) brief mention). Thinking of HIV in the college sphere is perhaps more difficult than supporting queers. Similarly, having robust processes, policies, and units in place to support students with disabilities does not mean that the needs of chronically ill students will be met. Jung (2002, 2003) provides convincing evidence that institutional practices designed to help and accommodate students with disabilities not only often don’t work for chronically ill students, they frequently disadvantage those students. Institutional processes and practices “which proceed under the guise of individualizing the accommodation … can actually … constitute an unfair, onerous and even discriminatory process that undermines the full inclusion and equal participation of chronically ill students” (p. 109). The work of accommodation gets shifted back onto students and faculty, preserving “the existing social organization of the university” (Jung, 2003, p. 108). In an institutional ethnography of women students with chronic illnesses, Jung (2002) also demonstrates that having to identify as disabled in order to access university services creates substantial problems. These students were subjected to a barrage of diagnostic and normalizing apparatuses from a number of individuals—including instructors—that proved disruptive to their academic endeavor and their sense of self (Jung, 2002). Unfortunately “disadvantage and discrimination may be consequences of institutional measures designed to produce fairness for disadvantaged groups” (Jung, 2002, p. 197). Policies and services that actively guide institutional members in the supportive treatment of HIV positive students could help reduce possible obstacles to academic success, but may, like Jung’s (2002, 2003) participants, still face significant challenges. However, affirming implicitly—and certainly explicitly—the mere presence of HIV positive students, much less the need to support them—will likely draw unwelcome attention to an institution. Clear, unwavering commitments on behalf of high-ranking administrators, faculty, staff, as well as students will be necessary to withstand the political pressure that could ensue. And, again, such language stands the chance of posing HIV positive students as a problem to be solved rather than

203 a population to be supported. Creating the necessary wide-scale institutional change will be a difficult process, and is likely best left to HIV positive college students to articulate what they want through whatever means they choose to articulate those needs. Students who wish to engage this process must locate allies in the institution and find other students—HIV positive or not—who will support their cause. Many of the successes of ACT UP were the result of having members or affiliates who had expertise in a range of subjects: medicine, media relations, art/graphic design, and civil disobedience training, among others. Locating institutional insiders or stakeholders and those who can help navigate the politics of higher educational intuitions would be a necessity. ACT UP also used emotion to fuel their movement, most notably anger, at least at first (Gould, 2009). This all will invariable involve risk; students—and possibly others—will have to press their rights as HIV positive people. And there is no guarantee that this knowledge will not be exploited in harmful ways. Students will have to decide if the harms they face now outweigh the potential harms of disclosing their status and disrupting the status quo based on that status. HIV positive people have collectively asserted their rights and needs previously; they stand to make more demands still. Participant recommendations. Following the recommendations of The Denver Principles (1983), I asked participants their advice for faculty and staff who may encounter HIV positive students. Although I did not get to ask Charles this question, he made a comment during one interview that illustrated how he perceived a lack of support from the disability services office. He stated: That’s another thing with this virus … I mean someone could go in there with doctor’s orders of ADHD or ADD and actually get extra time to work and extra time with tests and special privileges, but you get someone in there like me who’s suffering from symptoms of having severe fatigue and severe nausea from HIV and can’t make it to school and can’t make it to classes, and they require all this information from me. It’s not clear how difficult obtaining services might have actually been, but from Charles’s perspective the process was mystifying and frustrating. Possibly, the staff asked for reasonable documentation or steps, and Charles, feeling overwhelmed or fatigued disengaged from the office. Or possibly, the staff in that office may not have been aware of the kinds of problems HIV and its medicines can induce.

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Other participants, per my question, discussed that they hoped that faculty or staff dealing with an HIV positive student would be an active, empathic, non-judgmental listener. Several participants expressed a sentiment Josh succinctly described: Keep an open mind, and an open door. If they choose to talk to you, that’s a good thing. So maybe you should listen. You don’t have to say much to—you can just sit there and let them talk. It’s not like you have to reassure them or anything, but if you’re just there to listen. Be a safe space. Some participants thought that faculty and staff should receive training and information on being sensitive to HIV positive students. Administrators interested in supporting HIV positive students may find my inability to relay specific problematic discourses, policies, or procedures (rather than participants’ experiences of them) frustrating. University officials who wish to ensure that all chronically ill students are receiving the help they need with as minimal administrative minutiae or hurdles may need to inquiry with already chronically ill-identified students who can provide insight into that specific office’s practices. Faculty and staff who wish to demonstrate empathy to students may be confounded by contradictory advice from these students. Individual institutions will need to develop ways to assess faculty, staff (and other students) attitudes and the climate as experienced by HIV positive or chronically ill students. Again, this poses challenges and difficulties in its own right (e.g., locating such students). Initiatives, such as developed at DePaul University, that presume the presence of chronically ill students and structure a range of academic accommodations designed to address the particular needs that come with chronic illness and help students persist may be one way to proceed (Royster & Marshall, 2008). Jung (2003) warns that too often the practices of academic accommodation are not designed to fit the needs of chronically ill students and ultimately shift the burden of accommodation back on to the student and faculty, as well. In short, the implications for higher education are many, but the barriers to achieving the necessary changes are great. The Possibilities, Challenges, and Limits of Queer Methodology This study shows the fruitful completion of a queer-theoretically and queer-politically informed study from inception to completion. Despite its deconstructive and anti-normative valences, queer theory can provide a framework for empirical inquiry. Here, the queer-ness of the methods are debatable, but every facet of this study from design to implementation to

205 analysis were wrapped in an ethic derived from the work of queer AIDS activists and queer scholars and writers. The deconstructive nature of queer theory posed a real challenge in balancing my respect and desire to honor these men’s narratives while not holding those narratives up as inviolate. It literally hurts to critique these men’s stories and discourse. My heart beats faster; I can feel my shoulders tightening with an accompanying burn; I constantly wonder—how will the participants feel about what I have to say? I worry they will find they misplaced their trust in me. In fact, this entire study was (to paraphrase Halperin (2012)) drenched in affect—as emotion and discourse—for me. I often found myself deeply moved, sharing their sadness or anger. At times I experienced anger and frustration with things participants said or did. I sometimes wondered if, as a queer researcher, I should be challenging or pushing back on some of their discourse or incongruities between thought and action. (I decided it was not my place to do so and non- conducive to the aims of the study.) In telling their stories, I want to represent the men as I understand them, but not suggest that what I write is their one story (Adichie, 2009). I want to archive and honor their experiences, but not valorize their individual perspectives as being the best way to understand living with HIV as a gay man in America. From a queer perspective, I do concern myself with my right to represent these men—but also recognize that such concerns valorize their experience. I have tried to answer my concern—my personal “crisis of representation” as it’s so often called—by bringing the men’s words into various sections of this work, and through their art. Several of the men noted how the study allowed them to reflect differently on their lives in positive ways, thus fulfilling at least in part my hope to reciprocate to them. Simultaneously, several expressed how difficult some of our interviews were or how challenging constructing art about their lives was. Yet, in a recent follow-up on his narrative, Bill informed me that his painting now hangs in his living room and serves as a way for him to discuss HIV with people who see it. During narrative member checking, Krisinformed me that he decided to speak at his state capitol about AIDS as an HIV positive gay man. Although he was present to represent another student organization, he decided in the moment to disclose his status and speak on the topic. He told me that it was our interviews that provided him a space to talk and reflect on his status for the first time with someone who truly listened, and that this led to him deciding to take a stand. Thus this inquiry demonstrates that queer can undo but also do. The successful

206 conclusion of this study contributes to the small sample of queer studies and suggests yet another possibility for queering research or studying queer lives. Quality and Goodness In Chapter Three, I outlined my goodness criteria for this study, and I now address those (here, summarized) parameters. The first criterion I listed was that, as researcher, I should engage in a high quality of reflexivity, locating myself within the power dynamics of the study. Although I subsequently challenged the possibility and utility of reflexivity, I nonetheless have attempted to address power dynamics by encouraging participants to see themselves not as people I was conducting research on or about, but with. I invited them to subvert my interview agenda and actively supported them discussing what they felt was important or not discussing what they didn’t want to share. The art project was, among many things, an attempt to, as much as possible, turn the power of representation over to participants. Having completed the study, I am persuaded to address what I earlier eluded to—the question of my HIV status. I find it important to document that these men trusted a (based on my most recent test) HIV negative gay man to tell their stories. Given the cruel and cold treatment many of them have experienced at the hands of HIV negative gay men, choosing to share their intimate lives and personhoods with me speaks to their commitment to making a difference. Also, seeing firsthand how (supposedly HIV negative) people often harshly judge and condemn those living with HIV, I hope that revealing my status will work to demonstrate the importance and relevance of this study for all people, to illustrate advocacy and allyship, and provide perspective on my interpretation and analysis. Several of the goodness criteria centered on the richness and complexity of narratives and the degree to which stories and analysis provoked new ways of thinking, insights, understandings, and opened up more possibilities and questions than it answered. Similarly, part of the criteria involved resisting progress narratives or providing definitive answers and meanings. These men’s stories are indeed very complex and rich, and I believe my narratives capture their robustness. The stories present accurate accounts of the men’s lives that reflect their personality without suggesting that they are the only way to understand their lives. I have tried to hold a tension in my re-telling so it never offers definitive resolution to their stories or provides simplistic, reductionistic accounts of past experiences. I find my own insights and thinking broadened and challenged because of this study; I hope others will too. My analysis

207 attempts to provide a framework for understanding that is itself inherently instable and mutable. (What changes more than feelings, emotion, or affect?) Queering research forms the other major component of my goodness criteria. In pursuit of creating queer research, I have operated on principles of (queer) AIDS activism. I have worked to validate lived experiences while connecting them to larger social and institutional structures and discourse. I have tried to contravene norms of doing and presenting research. I inserted participants’ art in the middle of analysis; I conclude this chapter with participants’ words rather than my own. I have tried to be unsettling and to provoke uneasiness in narratives and other sections of this work. My study privileges the stories and strategies of people who are often devalued because of the juxtaposition of their sexuality and their virus. Perhaps most queer of all, I have strived to create an intimacy with my participants; I have welcomed the opportunity to breach—ethically—the traditional researcher-participant relationship. As such, I now have at least one new friend and on-going relationships of different kinds with other participants. Our conversation and enjoyment of each other does not end here. Limitations In terms of the more rote kinds of validity and statements of limitations, the standard disclaimer of qualitative inquiry seems to be to disclaim that the research is not generalizable to a broader population. Any number of reasons are cited, including sample size, the lack of control or comparison groups, the subjective nature of qualitative inquiry (as if quantitative or experimental designs do not incorporate the researcher’s subjectivities), and so on. But, as Butler-Kisber (2010) points out, such notions have “no currency” in qualitative research, being (post-)positivistic concepts (p. 15). Nonetheless, at the risk of imposing quantitative standards on this work, I feel it important to note that the racial demographics of my participants do not reflect the national percentages of men who have sex with men (MSM) and living with HIV in the United States. The CDC (2014b) reported that at the end of 2010, among HIV positive MSM, 47% were White, 31% were Black/African-American, and 19% were Latino. Questions of mirroring the larger population aside, historically in the United States, HIV/AIDS has often been conceived of as a White gay man’s disease, and not as a disease that has impacted African-Americans and other people of color since its discovery (Inrig, 2011). Consequently, less attention and resources have been provided to men (and women) of color, and particularly gay men of color. Therefore,

208 having the perspectives and narratives of more Black, Latino, Asian-American, Native American, Multi- and Biracial men would likely provide very different insights into different kinds of relationships to HIV/AIDS and forms of self-cultivation. Similarly, all participants in this group are cisgender men (i.e., their gender identity aligns with their assigned birth sex and bodies (Schilt & Westbrook, 2009)). Originally this study was open to any individual who identified as a man, regardless of body morphology or characteristics, and who had sex with other men. However, I was unable to recruit any trans men. Include trans perspectives could be greatly generative to fuller understanding about being a man or queer man with HIV/AIDS. Trans narratives could have provided more complex insights into how discourses of gender and sex change the way people relate to HIV/AIDS and respond to oppressive discourses. For example, how does transphobic discourse work to inform the way HIV positive trans men construct their self? Because gay men are narrativized in the United States as destined for AIDS, what are the implications for how trans men are socially and discursively positioned? What resources, opportunities, communities, and discourses are lost or not available for them because they do not fit that particular story? What are the stories and discourses in our society, politics, and culture about AIDS and trans people? This group of men does, however, represent a diverse range of ages, geographic locations, years living with HIV, ways in which they were infected, health challenges, institutional environments, spiritual/religious and moral beliefs, financial situations, relationship experiences, among other notable differences. While this complex array of difference serves as a real strength of the study, it also serves as a limitation. Focusing more deeply on one specific population of men (e.g., Black Southern gay men) could provide richer, fuller and more nuanced accounts by being able to examine the discourses of men who shared certain common social positioning. For instance, Johnson (2004) captured the vernacular of Black gay Southern men, demonstrating how language revealed their shared subjectivity. Beyond that, however, there are several considerations to keep in mind while formulating ideas from this study. Perhaps the most important consideration is that participants, even when referred by others, self-selected into this study. Because they took the initiative to participate (rather than being actively recruited), this sample reflects men who were already likely to have a positive disposition towards others, as well as other personality or cultural characteristics that

209 make their responses, stories, and discourses different from other HIV positive gay men. More active recruiting methods, such as identifying individuals at an AIDS health clinic and asking them to participate, or offering incentives to participants may yield individuals with different dispositions and ways of thinking and talking about HIV/AIDS and with different responses to a contemptuous society. Finally, I hope that the exclusive focus on gay men in this study does not suggest that HIV/AIDS is not a problem for others. Although I believe this study was needed, so is study needed about other populations living with HIV: women of all races and sexualities; queer and straight Black and Latino men, trans individuals of all races and sexualities. Although strongly impacted by HIV/AIDS in this country, insufficient attention has been given to their experiences, especially in a post-antiretroviral world. This is even truer about such individuals enrolled in institutions of higher education. I intend to continue my work by exploring living with HIV with college students belonging to these populations. Final Implications: For HIV Positive Students I conclude this work not with my words, but, again following The Denver Principles, with those of the participants. I asked the men what advice they would give to college students who found out they were HIV positive. Their advice, like their experiences with HIV/AIDS, varies greatly. Their advice expresses a range of experience, affects and strategies. There are no assurances to be found here, just possibilities. Any newly HIV positive gay man, or other individual, looking here for what to do next should consider each person’s advice in context of their lives, locations, relationships, experiences, and communities. Ultimately what these recommendations make clear is how AIDS queers queer lives. Aiden: I know there are people out there who don’t have the same resources that I do, and so it’s more about being proactive and seeking out as much as you can for support. If you’re not comfortable telling any of your friends at the moment, at least try to find … someone who’s HIV positive [who] should understand where you’re coming from and will know to keep your discretion and wouldn’t share it with anyone else … And I would hope that most cities out there would have similar support groups like [the one I attended]. Josh: Take a step back and breathe. It’s not the end of the world. Depending on where they were, I’d seek psychiatric help. Or, or to some degree, even if it’s like a social worker at the public office or whatever. Don’t be afraid to talk about it. Stay in school.

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Alex: Don’t be, this is really bad to say, but, don’t be as open about it. Kids are mean. … Hide your medicine, don’t let it be in just some regular medicine cabinet. Find out what LGBT services are in the area, not at the school, but in the area. Go to something off campus. Find some kind of like local support group that’s like off-campus if possible. I just wouldn’t recommend on-campus, because then, they’ll be worried about, what if someone sees me? What if someone talks about it? Bill: It would depend on what, the context of—if somebody was newly positive and they’re like, “I don’t know what to do.” I would say you need to … somehow, someway find somebody you’re comfortable with, whether they’re positive or not, utilize some type of resource, some support group, because that will help you get through it and realize you are not the only one. I guarantee you I’m not the only one wandering these halls who has HIV, but I certainly feel like it. … I’d say don’t let it stop you. Daniel: It’s interesting because a friend that I met up here … called me and told me he had just tested positive. … And he’s going through it—he having a really hard time kind of dealing with it and … it’s interesting because he’s doing very much what I did, which was just isolate and shut people out. … He does it differently than I did it: I’m an extrovert, he’s an introvert. So as an extrovert I go out in public and I isolate in front of people by distancing them from a number of ways. He stays home and shuts the door. And so, when you ask me what advice I would give somebody who is HIV positive in college, … I think about myself back at that age and I think my advice would be “love yourself.” Give yourself the support and the time and the resources that you need. Be gentle with yourself. I want to say, “Don’t be afraid to dream, but that doesn’t feel authentic.” I don’t buy that one at this point because I’m so bitter, but they’re children, they can dream if they want to. Kris: First thing, they’ll probably get tired of hearing this because every single person says it as soon as you’ve been diagnosed is: “it’s not the end of the world, you are not going to die.” Well, we all eventually die; … it’s treatable … do not beat yourself up. … Live your life. Think about how you got to where you are, learn it, understand it, accept it, and move past it because your life does not stop here. It’s just starting over in a whole different way. So you’ve just got to learn to deal with it. It’ll be fine. … Your life is not about to change, it’s really not. You just think it’s going to change. If you let it, it will change. Take care of yourself.

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Appreciate yourself. Love yourself. Same things I tell everybody. And just take it a day at a time.

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Appendices

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Appendix A: Informed Consent and Information Sheet Information Sheet Individuals to Contact

Mr. Michael Denton [email protected] [redacted] Doctoral Candidate / Principal Investigator Dr. Elisa Abes [email protected] 513.529.0164 Supervising Professor Office for the Advancement of [email protected] 513.529.3600 Research and Scholarship Dr. Neal Sullivan, [email protected] 513.529.3600 Research Compliance Officer

Background Information:

You are invited to participate in a research project that seeks to understand the how college student men who have sex with men and live with HIV express their experience. This study seeks to understand the narratives told by men who have sex with men and are living with HIV. Goals of the study include:

1) Understanding if and how men who have sex with men understand HIV as part of their lives.

2) Understand what, if any, intersections between sexual identity and HIV status exist in understanding one’s self.

3) Understand if and how the college environment impacts living with HIV.

4) Understand societal relationships that support or inhibit expressing or understanding the self.

Methods of Contact:

Interviews conducted for this study will be conversational in nature and driven by the goals outlined above. I am requesting participants engage in multiple sessions (usually 6-8) each lasting approximately one hour. The number of interview sessions will be determined by the participant in negotiation with the researcher. Participants have the final say in the exact number of sessions and can alter the number at any point in the study. Sessions will be conversational with participants actively participating in structuring the amount of time for each. In later sessions, I may request participants to artistically express (through drawing, poetry, song, sculpture, etc.) their experience of being HIV positive and to discuss the artwork produced by HIV positive people and advocates. I may request some individuals participate in follow-up interviews that would take approximately 30 minutes to an hour. Interviews will be audio-recorded. The researcher summarizes safeguards for ensuring the privacy, confidentiality, and proper use of data on the accompanying consent form.

Benefits of Participation:

By participating in this study, you will have the opportunity to reflect on your experiences your experiences as a man who has sex with men who also lives with a disease that is heavily stigmatized in society and often associated with your sexual identity. The information gained from your participation will be used to illuminate college and university personnel about this mostly unknown population and to suggest ways these officials can support students who are men who have sex with men and live with HIV.

Confidentiality:

All data will be kept confidential. Only I will know the identity of the participants. This information will not be available to any other person unless you specifically give permission in writing. I will make no reference in verbal

214 or written reports that could link you to this study. If you provide me permission to audio-record you, only I will have access to or listen to the recording. I will store it on my personal password-protected computer. I will transcribe the recording without identifying information and delete the recording.

Contact:

If you have questions at any time about the study or the procedures, please contact Michael Denton, the principal investigator; Dr. Elisa Abes, the supervising professor; Dr. Neal Sullivan, compliance officer for the Miami University Office for the Advancement of Research and Scholarship.

Informed Consent:

The attached consent form serves as your formal notification of the requirements and rights involved in participation. It also emphasizes your right to decline to participate in or withdraw from the study. In either case, you may request the return of your data without penalty.

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Participant Informed Consent Form

Background Information:

1) Understanding if and how men who have sex with men understand HIV as part of their lives.

2) Understand what, if any, intersections between sexual identity and HIV status exist in understanding one’s self.

3) Understand if and how the college environment impacts living with HIV.

4) Understand societal relationships that support or inhibit expressing or understanding the self.

Conditions:

1. The information obtained during this research project may be used to accomplish the aforementioned goals. 2. Any information that may reveal the identity of the individual will either be altered or omitted. Names of the participants will be kept confidential at all times. Researchers will use pseudonyms in all written reports. Data will only be made available in anonymous form. 3. As a participant, you may refuse to answer any questions or to refuse any activity at any time, without penalty. 4. If you agree to be individually interviewed, your interview will be audio-recorded. 5. If you agree to participate in artistic activities, you retain all rights to the original work, but you grant permission for your work to be duplicated in publications or presentations resulting from this research. 6. As a participant, you may stop the interview or discontinue your participation in the study at any time. Your data will be returned to you at your request. 7. As a participant you may request to review the completed version of the research report. 8. As a participant, you may contact the researcher, supervising professor, or research compliance officer at any time if you have questions or concerns about the process.

I read and understand the information included on this form. I agree to participate in this research study according to the terms stated above. ______[initial]

I have received a copy of the Study Information Sheet and the

Participant Informed Consent Form. ______[initial]

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I grant the investigators permission to quote me directly (using a pseudonym) in the final written report. ______[initial]

I grant permission for my interview to be audio-recorded. ______[initial]

I grant permission for my artwork to be duplicated in public publications or presentations related to this study. I retain all rights to my original work. ______[initial]

Participant’s Printed name: ______

Participant’s signature: ______Date: ______

You must be 18 years or older to sign this form. Your signature indicates that you are 18 years or older. Your signature also indicates your agreement to allow interviews to be audio-recorded.

Investigator’s signature: ______

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Appendix B: Interview Protocol Life Story Interview Protocol In order to best understand how each individual contextualized and understood HIV/AIDS in his life, a life story interview was completed prior to asking questions specifically about being HIV positive or college life. For the life story interview sessions, I created a protocol that utilized a modification of the 2008 McAdam’s life story interview protocol. I made modifications based on what I thought best suited the study focus, and with consideration that this study does not seek to generate entire life stories. Life stories are important to understand the discourses participants used about HIV/AIDS, but since life story narratives are not the focus of the study, I simplified elements that were unlikely to aid in better understanding the virus within the life context (e.g., eliminating questions about childhood, as all participants acquired the virus in early adulthood). I modified this protocol by eliminating some questions and adding a set of questions (noted below in brackets) from an earlier, 1995 version of the interview protocol. My modifications include retaining Section V “Stories and the Life Story” from the 1995 protocol (here, Section C), which the 2008 revision abandons. I deleted questions 4-8 in Section B of the 2008 protocol, but retained question 4 from the 1995 protocol (“One other important scene”). I retained the 1995 “Life Challenge” section in lieu of the 2008 version. Introduction

This is an interview about the story of your life. I am interested in hearing your story, including parts of the past as you remember them and the future as you imagine it. The story is selective; it does not include everything that has ever happened to you. Instead, I will ask you to focus on a few key things in your life – a few key scenes, characters, and ideas. There are no right or wrong answers to my questions. Instead, your task is simply to tell me about some of the most important things that have happened in your life and how you imagine your life developing in the future. I will guide you through the interview so that we finish it all in about two hours or less. Please know that my purpose in doing this interview is not to figure out what is wrong with you or to do some kind of deep clinical analysis! Nor should you think of this interview as a “therapy session” of some kind. The interview is for research purposes only, and its main goal is simply to hear your story. As social scientists, my colleagues and I collect people’s life stories in order to understand the different ways in which people in our society and in others live their lives and the

218 different ways in which they understand who they are. Everything you say is voluntary, anonymous, and confidential. I think you will enjoy the interview. Do you have any questions? A. Life Chapters Please begin by thinking about your life as if it were a book or novel. Imagine that the book has a table of contents containing the titles of the main chapters in the story. To begin here, please describe very briefly what the main chapters in the book might be. Please give each chapter a title, tell me just a little bit about what each chapter is about, and say a word or two about how we get from one chapter to the next. As a storyteller here, what you want to do is to give me an overall plot summary of your story, going chapter by chapter. You may have as many chapters as you want, but I would suggest having between about 2 and 7 of them. We will want to spend no more than about 20 minutes on this first section of the interview, so please keep your descriptions of the chapters relatively brief. B. Key Scenes in the Life Story Now that you have described the overall plot outline for your life, I would like you to focus in on a few key scenes that stand out in the story. A key scene would be an event or specific incident that took place at a particular time and place. Consider a key scene to be a moment in your life story that stands out for a particular reason – perhaps because it was especially good or bad, particularly vivid, important, or memorable. For each of the eight key events we will consider, I ask that you describe in detail what happened, when and where it happened, who was involved, and what you were thinking and feeling in the event. In addition, I ask that you tell me why you think this particular scene is important or significant in your life. What does the scene say about you as a person? Please be specific. 1. High point. Please describe a scene, episode, or moment in your life that stands out as an especially positive experience. This might be the high point scene of your entire life, or else an especially happy, joyous, exciting, or wonderful moment in the story. Please describe this high point scene in detail. What happened, when and where, who was involved, and what were you thinking and feeling? Also, please say a word or two about why you think this particular moment was so good and what the scene may say about who you are as a person. 2. Low point. The second scene is the opposite of the first. Thinking back over your entire life, please identify a scene that stands out as a low point, if not the low point in your life story. Even though this event is unpleasant, I would appreciate your providing as much detail as you can

219 about it. What happened in the event, where and when, who was involved, and what were you thinking and feeling? Also, please say a word or two about why you think this particular moment was so bad and what the scene may say about you or your life. 3. Turning point. In looking back over your life, it may be possible to identify certain key moments that stand out as turning points -- episodes that marked an important change in you or your life story. Please identify a particular episode in your life story that you now see as a turning point in your life. If you cannot identify a key turning point that stands out clearly, please describe some event in your life wherein you went through an important change of some kind. Again, for this event please describe what happened, where and when, who was involved, and what you were thinking and feeling. Also, please say a word or two about what you think this event says about you as a person or about your life. 4. One Other Important Scene. Describe one more event, from any point in your life, that stands out in your memory as being especially important or significant. [1995] C. Stories and the Life Story [1995] You have been telling me about the story of your life. In so doing, you have been trying to make your life into a story for me. I would like you now to think a little bit more about stories and how some particular stories might have influenced your own life story. From an early age, we all hear and watch stories. Our parents may read us stories when we are little; we hear people tell stories about everyday events; we watch stories on television and hear them on the radio; we see movies or plays; we learn about stories in schools, churches, synagogs, on the playground, in the neighborhood, with friends, family; we tell stories to each other in everyday life; some of us even write stories. I am interested in knowing what some of your favorite stories are and how they may have influenced how you think about your own life and your life story. I am going to ask you about three kinds of stories. In each case, try to identify a story you have heard in your life that fits the description, describe the story very briefly, and tell me if and how that story has had an effect on you. 1. Television, Movie, Performance: Stories Watched Think back on TV shows you have seen, movies, or other forms of entertainment or stories from the media that you have experienced. Please identify one of your favorite stories from this domain -- for example, a favorite TV show or series, a favorite movie, play, etc. In a couple of

220 sentences, tell me what the story is about. Tell me why you like the story so much. And tell me if and how the story has had an impact on your life. 2. Books, Magazines: Stories Read Now think back over things you have read -- stories in books, magazines, newspapers, and so on. Please identify one of your favorite stories from this domain. Again, tell me a little bit about the story, why you like it, and what impact, if any, it has had on your life. 3. Family Stories, Friends: Stories Heard Growing up, many of us hear stories in our families or from our friends that stick with us, stories that we remember. Family stories include things parents tell their children about "the old days," their family heritage, family legends, and so on. Children tell each other stories on the playground, in school, on the phone, and so on. Part of what makes life fun, even in adulthood, involves friends and family telling stories about themselves and about others. Try to identify one story like this that you remember, one that has stayed with you. Again, tell me a little bit about the story, why you like it or why you remember it, and what impact, if any, it has had on your life. D. Future Script 1. The next chapter. Your life story includes key chapters and scenes from your past, as you have described them, and it also includes how you see or imagine your future. Please describe what you see to be the next chapter in your life. What is going to come next in your life story? 2. Dreams, hopes, and plans for the future. Please describe your plans, dreams, or hopes for the future. What do you hope to accomplish in the future in your life story? 3. Life project. Do you have a project in life? A life project is something that you have been working on and plan to work on in the future chapters of your life story. The project might involve your family or your work life, or it might be a hobby, avocation, or pastime. Please describe any project that you are currently working on or plan to work on in the future. Tell me what the project is, how you got involved in the project or will get involved in the project, how the project might develop, and why you think this project is important for you and/or for other people. E. Life Challenge [1995] Looking back over the various chapters and scenes in your life story, please describe the single greatest challenge that you have faced in your life. How have you faced, handled, or dealt with

221 this challenge? Have other people assisted you in dealing with this challenge? How has this challenge had an impact on your life story? F. Personal Ideology Now, I would like to ask a few questions about your fundamental beliefs and values and about questions of meaning and morality in your life. Please give some thought to each of these questions. 1. Religious/ethical values. Consider for a moment the religious or spiritual aspects of your life. Please describe in a nutshell your religious beliefs and values, if indeed these are important to you. Whether you are religious or not, please describe your overall ethical or moral approach to life. 2. Political/social values. How do you approach political or social issues? Do you have a particular political point of view? Are there particular social issues or causes about which you feel strongly? Please explain. 3. Change, development of religious and political views. Please tell the story of how your religious, moral, and/or political views and values have developed over time. Have they changed in any important ways? Please explain. 4. Single value. What is the most important value in human living? Please explain. 5. Other. What else can you tell me that would help me understand your most fundamental beliefs and values about life and the world? What else can you tell me that would help me understand your overall philosophy of life? G. Life Theme Looking back over your entire life story with all its chapters, scenes, and challenges, and extending back into the past and ahead into the future, do you discern a central theme, message, or idea that runs throughout the story? What is the major theme in your life story? Please explain. H. Other [1995] What else should I know to understand your life story? I. Conclusion This ends the life story exercise portion of our time together. From here on forward, having now understood your life holistically, we will be focusing more specifically on your time and experiences while living with HIV. We will also in a few sessions—and I will provide more

222 details as we get nearer to that time—begin the artwork portion of the study that I mentioned when we first met.

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Appendix C: Recruitment Website Home Page Positive College Living Home Page (www.positivecollegeliving.com)

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Appendix D: Website FAQ Positive College Living FAQ (www.positivecollegeliving.com/faq)

Copy of the Text Q: Who are you? A: I am a doctoral candidate in the Student Affairs in Higher Education program at Miami University of Ohio. I am a 43 year old gay man who has worked in various universities for the past fifteen years. You can see my student profile here.

Q: Why are you doing this study? A: The voices and experiences of college students living with HIV are largely ignored and unknown. I hope to make life better for students who navigating college along while living with HIV. I hope to combat the stigma and ignorance people with HIV often face.

Q: Why are you focusing on gay college men? A: Historically, social attitudes and policies in the United States have linked HIV/AIDS to gay and homosexual men, although people of various sexualities and sexual practices may transmit or acquire HIV. I believe this has created unique life circumstances that I wish to understand better. In the future, I intend to broaden my outreach to other students (e.g., women, other men) in future studies.

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Q: What are your attitudes toward people with HIV? A: I do not believe that people with HIV are worse or better than anybody else. Some people have the necessary resources to manage HIV and others don't. Some people struggle living with HIV and some don't. Some have supportive families and communities, others don't. I want to be an advocate and ally for people living with HIV. I want to share the stories of students with HIV. I want to combat the stigma, hate, ignorance, and fear surrounding HIV. I am against laws that criminalize HIV transmission. I think HIV medication (and health care generally) needs to be made more affordable and widely available.

Q: Why should I participate in this study? A: You may experience positive results in being able to discuss your experience with an individual (me) who is warm, caring, interested and non- judgmental in a confidential setting. Your participation could result in greater awareness about the needs and experiences of college students with HIV. Please see my participant information page.

Q: What are the costs and risks of participating? A: You will experience no cost by participating in this study. I shoulder any costs. Although I believe that participation in this study carries little risk, not all risk is foreseeable. For instance, you could experience discomfort recalling some experiences. Of course, you can refuse answer any question you do not wish or withdraw at any time. Please see my participant information page for full information.

Q: Can you assure my confidentiality? A: I will do everything I can to protect your identity. I will use a pseudonym (a fake name) for you in the study. Only I will know your real name. I will change details that would identify you as best as possible. We will find a location to meet or a method of communication that feels comfortable and safe to you. Please see my participant information page for more information.

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Appendix E: Banner Advertisements Positive College Living Advertisement Banners

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