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An Oral History of HIV/AIDS and Spirituality

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An Oral History of HIV/AIDS and Spirituality ABSTRACT Things Broken and Things Made New: an Oral History of HIV/AIDS and Spirituality Kyle D. Desrosiers Director: Mia Moody-Ramirez, Ph.D. This project is a contemporary collection, analysis, and presentation of oral histories from HIV-positive people in America. As of April 2020, nine individuals living with HIV were interviewed in conjunction with the Baylor Institute for Oral History, in order to collect qualitative information about their lifetime experiences with spirituality and worldview. Topics investigated under this umbrella include religious affiliation, family and community belonging, health, sexuality, and changes in belief. As this project explores a wide range of life experiences, many significant narratives from both religious and secular spaces are presented. Human worldviews–whether doctrinal or not–touch all facets of life, and so participants have spoken about a range of topics, including advocacy, identity, culture, and remembered conversations, among other experiences that relate to the search for metaphysical meaning. Participants came from Roman Catholic, Protestant, Latter-day Saints, Reform Jewish, Conservative Jewish, and nonreligious traditions. Some interviewees remained in these faith traditions, while others currently identify with traditions such as Buddhism, as nonreligious, atheist, or spiritual but not religious. Most participants identified as LGBTQ+. The methodology of this project is influenced by existing literature regarding the nature of HIV/AIDS and religion, scholarly oral history work, and the interview processes used by the Baylor Institute for Oral History. This project reports emergent themes common to the ways various individuals living with HIV have used spirituality and worldviews to navigate life. This is an ongoing archival project, to which the author plans to continue to contribute, with particular emphasis on continually increasing the diversity of the participant pool. Future interviews will be archived at the Baylor Institute for Oral History. APPROVED BY DIRECTOR OF HONORS THESIS: ____________________________________________ Dr. Mia Moody-Ramirez, Chair of the Department of Journalism, Public Relations, and New Media APPROVED BY THE HONORS PROGRAM: ____________________________________________ Dr. Elizabeth Corey, Director DATE: ________________________ THINGS BROKEN AND THINGS MADE NEW: AN ORAL HISTORY OF HIV/AIDS AND SPIRITUALITY A Thesis Submitted to the Faculty of Baylor University In Partial Fulfillment of the Requirements for the Honors Program By Kyle D. Desrosiers Waco, Texas April 2020 TABLE OF CONTENTS Acknowledgements . iii Chapter One: Introducing HIV Historiography, Theoretical Frames, & Queer Theology . 1 Chapter Two: Lifespan Narratives of Belief, Sexuality, & Health . 23 Project Methodology . 23 I. Family, Culture, and Childhood Faith as the Starting Point for Spiritual Journey . 27 II. Exploring Sexuality: Discovery, Liberation, & Trauma . 32 III. Understanding the Diagnosis . 36 IV. Picking up the Pieces: Expanding Worldviews in the Face of Mortality . 40 V. Collective HIV Trauma . 54 VI. Coping with Personal Trauma . 63 VII. Identity-Related Experiences . 66 VIII. Dealing with Loss . 70 IX. Questions about Reconciliation . 78 X. Hopes & Anxieties about the Future of HIV/AIDS . 80 Chapter Three: Summarizing the Wisdom of HIV/AIDS Survivors . 86 Conclusions . 87 An Historical Timeline of HIV/AIDS . 96 Bibliography . 101 ii ACKNOWLEDGEMENTS I would like to give special thanks to Dr. Mia Moody-Ramirez for her support as the leading faculty advisor for this undergraduate thesis. Dr. Moody-Ramirez is an esteemed mentor of mine, with whom I have been very honored to work. Second, I am indebted to the Baylor University Institute for Oral History for providing support and resources so that a body of interviews could be conducted and preserved. These interviews will remain at the Institute for Oral History archives for posterity, and without the support of the Institute, and especially the director, Dr. Stephen Sloan for his guidance and mentorship, the quality of interviews and transcripts would not have been as comprehensive. Third, I would like to thank Baylor faculty members who served as readers for this project, including those mentioned above and Dr. Jennifer Good and Dr. Candi Cann, as well as other professors and peers who have supported the work as it developed. Above all, I would like to thank my interview participants for their time and generosity. May we all seek to learn from them and never forget their bravery. My sincerest hope is that readers may learn more from the firsthand accounts of people living with HIV, but most importantly may grow in understanding and solidarity with those who live with HIV and chronic illness, as well as all forms of societal marginalization. In learning from these stories, I hope that we humble ourselves as we strive to live together in unity. iii CHAPTER ONE Introducing HIV Historiography, Theoretical Frames, & Queer Theology Have you ever watched your best friend die (what for) Have you ever watched a grown man cry (what for) Some say that life isn't fair (what for) I say that people just don't care (what for) They'd rather turn the other way (what for) And wait for this thing to go away (what for) Why do we have to pretend (what for) Someday I pray it will end In This Life - Madonna, 1992 An overview An effective study of HIV/AIDS must be interdisciplinary, based on its intimate intersections with health, gender-sexuality, and religious concerns. The epidemic of the 1980s and 1990s, its fallout, and the experience of HIV-positive people in the years since have been studied by countless sociologists, medical practitioners, theologians, queer theorists, and many more. Indeed, it is argued that social crises like AIDS/HIV by nature demand the most diverse and multifaceted examinations by those striving to make sense of inexplicable horror (McNeill, 1998; Slack, 1996; Cleworth, 2013). Nothing reveals the character of a society like the way it responds to tragedy. This is especially evident in the story of HIV in America–when the preservation of status quos took unfortunate priority over the preservation of human life and flourishing. As scholar Charles E. Rosenberg observes of epidemiology, “the unique historical moment of an epidemic allows the historian to study the effects of a randomly occurring stimulus, against which the varying 1 reactions of [a population] can be judged” (2010). The onset of HIV/AIDS represents a decisive moment in American history wherein the true colors of many political leaders, members of the clergy, and the laity were revealed: this ranged from condemnation to fear to apathy to compassion (Bluthenthal et al., 2012; Derose et al., 2010; Green, 2016; Pierce & VanDeVeer, 1988; Rofes, 2013). Equally significant is the psychological, spiritual, and emotional responses to the epidemic experienced by both HIV-survivors and those we lost to the epidemic. A crisis as widespread as HIV cannot be ignored–– though many in our society have tried. HIV/AIDS presented a test of ethics for American people. Contemporary American values–at least those held by many of the most vocal, though not necessarily the majority–determined the proactivity of the battle against the AIDS epidemic and the dignity with which its victims were treated. Though it is true that many HIV-positive people and activists argue that the status quo of religious doctrines inspired governmental inaction in AIDS research and treatment, HIV also represents also a personal spiritual crisis for those who live with the virus. These folks have navigated questions about what it means to be stigmatized as a sexual “other,” to be queer (LGBTQ+) or marginalized as a sex worker or drug user, and how to exist in a society that does not support their full human dignity. These questions of life, value, and meaning are inextricably linked to religion and worldview. Living with HIV also frequently necessitates the examination of questions of health, mortality, and living a meaningful life. Indeed, the treatment of HIV-positive people–politically, socially, and by religious doctrines and religious leaders–represents a continued injustice all compassionate citizens must reckon with. Those living with HIV or acquired immuno- 2 deficiency syndrome (AIDS) continue to experience legal and social marginalization, physical health issues, and identity-related collective trauma. It is in this context, that the experiences, beliefs, and opinions of those living with HIV/AIDS should be understood. The narratives in this project are from humans who have sought to answer questions about spirituality, wellbeing, and purpose that people in marginalized groups–and those confronted by their own mortality–do not have the luxury of avoiding. The discussion of worldviews, belief systems, and spirituality necessitates the examination of justice, equity, and inclusion based on both religious theology and practice, as well as topics tangential to religious teachings and religious community: human sexuality, health, and ethics. This project does not discuss HIV/AIDS in medical nor scientific terms, nor is it an evaluation of theology. Rather, it builds on the methodology used by the Baylor Institute for Oral History and oral history and narrative- based historiographical works on HIV/AIDS and culture, such as the work by Randy Schilts (1987), Michael Petro (2015), Shomanah & Kanyoro (2005), and Haddad et. al. (2011). The findings of this project are based upon personal
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