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

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

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

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-

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 oral history interviews with

HIV-positive persons focused on the subject matter of faith, health, and sexuality. Later in the project, data gleaned from oral history interviews with persons living with HIV were contextualized and presented. To facilitate this study this author has undertaken a review of previously scholarly works about how HIV and religion relate to history, psychology, and theology.

The following literature topics are reviewed: 1) sociological and historical texts regarding the social and spiritual experiences of persons living with HIV/AIDS;

2) scholarship regarding the effects of healthy or unhealthy religion on mental, emotional, and physical well-being for people living with HIV; 3) works on queer liberation theologies; and 4) psychological theories about lifespan review as a means to understand oral history narratives.

Historiography and Sociology of HIV/AIDS

Many scholarly works have examined the historical and sociological significance of the HIV/AIDS epidemic in America (Corea, 1993; Haddad, 2011; Monette, 1998;

Trentaz, 2012; Bjørklund et al., 2018; Brier, 2018; Epstein, 1996; Green, 2016; Pepin,

2011; Petro, 2015; Rofes, 2013; Saleebey, 2001). Most notable among this corpus is

Randy Schilts’ And the Band Played On (1987), which is among the earliest explorations of American HIV/AIDS. Schilt’s comprehensive text is evidence of thoroughly researched historical moments pieced together through interviews, articles, and scholarship. It is particularly the personal narrative component, for which this book is highly valued in this project.

Randy Schilts, the Early Years, and the New Right

Schilts discusses the relationship between American politics and religion at the time of the AIDS onset. American moral culture, he argues, was profoundly influenced in the 1980s by the so-called “Moral Majority” movement spear-headed by the Baptist- evangelical-televangelist conglomerate led by individuals like Jerry Falwell. The “Moral

Majority” constituted a “New Right” of Americans, responding to leftist politics in the wake of the 1960s and 1970s. It was at this time that the evangelical Christian movement

in America first became politically active. This movement plays a large role in moral definitions of AIDS, Schilts writes. In his retelling of history, he notes that this conservative Protestant and also a conservative Catholic constituency helped elect Ronald

Reagan. Shilts also notes a cultural shift which saw the repeal of gay rights laws across the country in the 1970s and 1980s, and an increased prominence of religiously defended rhetoric which condemned gay people, especially in the emerging televangelist and megachurch formats (Schilts, 1987).

Schilts is critical of American conservatism of the era, the new right, and rising strains of evangelical Protestantism, as well as mainline Protestantism and Roman

Catholicism for framing AIDS as a moral crisis. Schilts, Gottfried, et. al. (1988),

Cleworth, et. al. (2012), and others have discussed the ultimate failure of the Reagan administration, the American mass media, and pharmaceutical companies to place humanity before profits.

Others have also studied this social climate and drawn connections between the

“morality” of prominent evangelical Christian leaders of the day and societal attitudes of hatred and complacency (Gottfried et. al., 1988; Cleworth, 2012; Eaklor, 2008; Palmer,

1997). Neo-conservativism, which prioritized a conservative economic plan but also opposed perceived threats to “traditional morality”–was linked to religion, ethics, and values. It is argued that these values resulted in prolonged scientific and social inaction in the face of HIV/AIDS, and ultimately resulted in death, suffering, and marginalization of hundreds of thousands of human beings. Schilts wrote that this ethical climate promoted the wrong kind of moral values, those of legalism and status quo, which neglected to meet the needs of all human beings who faced immediate suffering and death.

Identity, Trauma, and Religion

Anthony Michael Petro’s After the Wrath of God: AIDS, Sexuality, and American

Religion (2015) utilizes oral history techniques and archival research to examine the depiction of HIV/AIDS as a moral epidemic, paying attention to the rhetoric of evangelical Protestant, mainline Protestant, and Roman Catholic leaders in America.

Another well-known early response is Larry Kramer’s Reports from the Holocaust

(1997), offers a comparison between AIDS and the Shoah, an identity-based tragedy inflicted upon of a group of people while the vast majority of society stood by. In the later documentation work of scholar Howard Markel, Kramer is purported to have said

“those of us living in the world of the healthy cannot possibly understand what it is to have this terrible illness, let alone to watch your friends and community die while the nation at large seems to be doing nothing about it” (2001).

Works of oral history, memoirs, and biographies have examined the psychology of HIV and AIDS, particularly through the lens of identity such as sexual orientation, race, and gender (Lathers & Smithies, 2019; Monette, 1998; Zuger, 1995; Corea, 1993).

Scholars such as Eric Rofes have examined the psychology of HIV, collective trauma felt by the gay community past and present, and a quest for meaning amidst the carnage of the epidemic (Reviving the Tribe, 2013). Others, such as Tony Kushner, the playwright of

Angels in America: a Gay Fantasia on National Themes, have undertaken the spiritual act of creation to develop plays, works of historical fiction, and other artistic projects to cope with the collective and personal trauma of HIV/AIDS (1994). This play, widely seen as canonical in queer theater, explores the nuances of religion, culture, sexuality, illness, and the trappings of American capitalist society. His work is deeply spiritual, examining

AIDS and homosexuality in America. Major and minor characters are angels and spirits, and Jews, Mormons, and drag queens are all brought together to cope with the fallout of the apocalyptic era of AIDS in New York. His investigation of the intersection of culture and religion is especially of interest to this project of HIV and religious studies.

Other works have centered around the psychological and spiritual effects of the relationship between religious identity and identity-based marginalization. Religion, faith, and doctrine have been shown to play a key role in the effectiveness of compassionate HIV preventative care and treatment, and the ability to understand the relationship between religious-cultural marginalization and vulnerability (Green &

Ruark, 2011; Haddad, 2011; Feldman, 2010; Rofes, 2012; Pierce & VanDeVeer, 1988;

Green, 2016; Saleebey, 2001). For both good and ill, religious paradigms dictate the norms and identities of both majority and minority groups–those who are marginalized and those who have the power to make change.

The Relationship Between Spiritual Health and Emotional, Spiritual,

& Physical Well-being for People Living with HIV (PLWH)

Scholarship has found that cooperate religious-ethical systems are closely linked to individuals’ spiritual health outcomes. A 2006 study by Michael Yi, et. al. suggested that healthy and unhealthy spirituality have profound impacts on the quality of life and physical and emotional well-being for People Living with HIV (PLWH). The study explored depression and trauma (resulting from marginalization, abuse, and stigma) among HIV-positive people. This research suggested that there is a direct link between unhealthy spiritual paradigms and poorer immune system function among persons living

with chronic illness. Poorer health status was statistically associated with less social support, poorer spiritual well-being, and depression. These components of faith systems and communities affected health outcomes, whereas denominational affiliation or personal spirituality did not result in significant distinctions among the sample.

Ultimately, community and a strong sense of meaning were the most significant factors.

These two components were largely absent for a generation of gay men, who were rejected by faith communities. They were told that not only did they not belong in life– but could also face total separation from God in death.

Scholars have discovered links between confidence, optimism, and life satisfaction among HIV-positive persons who have both spiritual practice and affirming community. A positive association between religion and HIV-affirmation resulted in significantly better clinical outcomes (Cotton et. al., 2016; Doolittle, 2018; Litwinczuk,

2007; Siegel et. al., 2002). Spirituality helps people cope with trauma, loss, stigma, and stress among special minority populations. It is worth noting that spirituality does not necessitate the belief in God or higher power(s), nor an adherence to a particular belief system. Rather, it is about a sense of belonging, love, and peace. Protestant churchgoers with a positive association between community and belief and their HIV status are statistically as happy and healthy as people living with HIV and AIDS who attend

Buddhist meditation centers or engage with other forms of community with similar individuals who support and uplift one another (Szaflarski, 2013; Grill et. al., 2020).

As these works reveal, a paradigm of HIV/AIDS as apocalyptic punishment led to detrimental effects on the speediness and accessibility of medical care, inaction by political leadership, and violence against queer people and people living with HIV.

Transphobic and homophobic rhetoric and HIV/AIDS condemning rhetoric represents a tremendous risk factor for the emotional, spiritual, psychological, and physical health of

PLWH. These experiences can result in depression, isolation, and spiritual despair. It is out of this despair that liberating theologies have been developed by marginalized people.

These theologies challenge doctrinal status quos, and instead reconnect with intrinsic values of faith and religion, which are focused on unity, peace, hope, and love. This search for a more liberating and compassionate spirituality is a trend seen among nearly all participants in this historiography.

Queer Theology: Liberation and Reclamation

A legacy of religious-cultural hostility toward LGBTQ+ people and people living with HIV, and the need to develop healthy, positive spirituality were prominent themes in this project. HIV-positive and queer folk frequently experience the desire to reconstruct or build anew a healthy spirituality or worldview–a basic human need. Queer theology is an appropriate theory through which to examine this topic. Coming out of Latinx and

Black liberation, feminist, and gay-lesbian liberation theologies, the late twentieth century discipline of queer theology has explored ways in which LGBTQ+ people, and other marginalized groups, find meaning, and purpose, and a true connection to faith. It rejects the teachings of “otherness” and “intrinsic disordered-ness” that some theologies and doctrines teach about queer people. Instead, it critically views doctrine and scripture as contextual; it is critical of authoritative works as being written by those in power to maintain the status quo. It also challenges hierarchy and authority, such as the belief in the Magisterium’s deposit of authority in the Roman Catholic Church. Instead, queer

liberation theology strives to reclaim the doctrines and practices that have been used to oppress and exploit, and instead reinterpret them in context (Shallenberger, 1998; Guest,

2006; Shore-Goss, 2013; Alpert et al., 2001; Tonstad, 2018; Cheng, 2011; Boisvert &

Johnson, 2012; Knauss & Mendoza-Álvarez, 2019). This critical lens of queer theology demonstrates ways in which not only queer people but also women and racial and ethnic

“others” have been able to reclaim autonomy over the intrinsic goodness of their faith– whether in scriptures, traditions, practices, or their own spiritual understanding. The conclusion is that spirituality is not in opposition with marginal identities, but rather that marginalization results in stronger and more compassionate spiritualities. This critical lens is central to the findings of this paper.

The 2005 religious commentary Grant Me Justice!: HIV/AIDS & Gender

Readings of the Bible is a South African-focused anthology of theology and Islamic and

Christian scripture through a critical lens of gender and sexuality readings (Shomanah &

Kanyoro). This text, alongside Beverly Haddad’s 2011 work on the perspectives of HIV, life pathways, and faith, reflect an intimate relationship among health, marginality, and spirituality, and provide narratives of HIV in Africa. Haddad’s text features excerpts taken directly from oral history interviews with HIV-positive women and gay men.

Haddad also discusses the role that socialization, religious experience, indoctrination, and exclusion play in the lives of individuals over time, and how they vary depending on religious tradition.

In Grant me Justice!, one contributing author, Steve de Gruchy, writes about HIV as an impetus to devise new theological understandings: “Questions of suffering, hope, life and death, justice, and the nature of the church have become central to this emerging

theological reflection on HIV and AIDS.” Another contributor, Domoka Lucina, writes in the third chapter about an increasing shift in moral discourse from the conservative stance of “deserved” HIV to a morality that first embraces an ethic of life–even among theological conservatives. Lastly, Farid Esack, a Muslim contributor to the anthology, discusses the change in Muslim responses to HIV/AIDS in Africa over time: from indifference to scorn to pity (Shomanah & Kanyoro, 2005). However, he argues that compassion is better than pity; of course, pity still means helping rather than letting sufferers suffer, but compassion is unconditional, and lacks judgement.

The anthology also features Phumzile Zondi-Mabizela, who shares her personal narrative as a person living with HIV. She explains that as a Christian Zulu woman, she needed to seek out indigenous spiritual practices and reclaim the beliefs of her ancestral heritage in addition to Christian teaching, so that she could engage in a full journey toward healing and wholeness (Shomanah & Kanyoro, 2005). This study reports similar experiences among its oral history participants, who have also reclaimed, renewed, or rediscovered a healthy cosmology through embracing their marginalization within Black,

Chicano, Jewish, or Asian, etc. identities.

In Grant me Justice!, Zondi-Mabizela shares a testimony that bears striking similarities to the research of this project on oral histories of HIV-positive Americans.

She recounts:

If we as people of faith wish to respond fully to the love of God which is so generously extended to us, we are compelled to reduce each other’s isolation and exclusion that leads to greater vulnerability to HIV… I also see that God has chosen to use HIV as the lens through which we can observe communities of faith and through which God in infinite mercy choses to bring healing to these communities (410).

She and many others exercise a great compassion towards those who suffer and recognize that paradoxically, tragedy offers a new, sacred hope–one to choose justice and peace, healing and mercy–an opportunity to sow love, expand, and seek unity. It is often through great tragedy, that such a fire for compassion and love may be sparked, and it is this fire that can result in tangible social change and save lives and instigate healing and flourishing on earth.

Setting the Scene: New Queer Spiritualties in America

To set the scene for interplay between the HIV virus and religion, one must understand the larger context of queer identities in America, and the struggle for

LGBTQ+ civil rights. The Stonewall riots of 1969–considered by many historians to be the onset of the gay civil rights movement–represented the beginning of an era in which people of gender and sexuality difference could no longer be ignored.1 There was strength in numbers, and the cultural conditions of the 1960s led to the challenging of long standing norms of race, class, and social structures. Just as the Black civil rights and women’s liberation movements naturally raised questions of religion and theology–by both traditionalists and progressives–so did the increasing visibility and solidarity of gays and lesbians.

If the 1960s and 1970s were hopeful for the gay community, the 1980s–the focal point of HIV history–represented a conservative cultural response. At front and center was the “Moral Majority” (see pg. 4). Though arguably not a majority of American

1 “Stonewall” refers to the Stonewall riots of 1969. Starting June 28, 1969, a series of demonstrations were held by LGBTQ+ people in response to police raids and unwarranted arrests. Many historians and queer theorists view this as the stat of the gay liberation (civil rights) movement. See John D’Emilio’s After Stonewall for more information (2004). 12

people, this evangelical Protestant movement embodied vocal religious rhetoric against

LGBTQ+ people and HIV-positive people. They claimed to be seeking preservation of

“traditional family” structures and argued that AIDS was divine punishment in an apocalyptic age (Schilts, 1987). Throughout the 1980s and 1990s, similar rhetoric was prevalent in other denominations. For example, a public statement from the Church of

Jesus Christ of Latter-day Saints was one of conditional compassion for AIDS patients, incongruously expressing concern for suffering while persisting in rhetoric framing HIV as a punishment by God for homosexuality. A Deseret News article by Jan Thompson from 1992 offers a telling depiction of this public statement, in words spoken by Elder

Russell M. Nelson, a member of the Quorum of the Twelve Apostles:

‘An epidemic has been forecast - a plague fueled by a vocal few who exhibit greater concern for civil rights than for public health - a plague abetted by the immoral,’ the church leader said.

At the same time, other religious movements offered more nuanced ways of understanding health, sexuality, and morality. Members of the Jewish community offered the most compassionate and holistic response to the AIDS crisis, especially in the Reform movement. In American Jewry, there was a culture of shame and silence, which some, such as Larry Kramer, suggest has more to do with the culturally conservative values of

Eastern European immigrant Jews rather than teachings of the Torah and Talmud.

Because of this, some organizations such as Jewish Family Services, and activist leaders such as Rabbi Denise Eger, Rabbi Marc Blumenthal, and Mary Ann Siegel, offered comprehensive education for communities and schools, in addition to advocacy work.

However, there was a lack of response from leaders of Orthodox and Chassidic communities, especially in New York where both they and the worst of the AIDS

epidemic were heavily concentrated. About the disconnect between cultural norms and real world, concrete needs of human suffering and illness, Mary Ann Siegel explains in a

1992 Jewish News of Northern California article:

Jewish AIDS groups, she said, walk a fine line between dealing with the behaviors that are responsible for most AIDS cases — unprotected sex and intravenous drug use — and offending religious sensibilities.

The article goes on to explain that, at the same time, Tova Ehrlich, a volunteer from the Orthodox community continued to push for recognition in more conservative

Jewish community corners. Her work is explained:

[Tova Ehrlich’s advocacy] steers clear of Jewish religious establishments that do not support the group's activities because of their condemnation of homosexuality — and a determination to deny the existence of AIDS in their own community. ‘We just do what we need to do,’ she said. ‘We make the point that this is a disease, and there's no judgment about disease. You don't tell people who have lung cancer that they shouldn't have smoked; it's just an illness, and that's the way we deal with it."

Though some communities, such as the Jewish grassroots organization mentioned above, and hundreds of Roman Catholic hospitals, used faith values to drive compassionate care, a lack of doctrinal affirmation of gender and sexuality differences meant there was a deep void of support for human dignity. This undoubtedly stifled research development and expert medical care. Thus, it is understandable that gays, lesbians, and allies of HIV-positive people felt and continue to feel hurt and anger at the religious establishment.

Yet, amid powerlessness against church hierarchies, there were always brave people–often from the laity–who sought change. Lay grassroots organizing constituted the bulk of early LGBTQ-affirming religious community. Much of it was indeed done by religious people who expressed compassion and solidarity, and believed that their

religious values told a better story than the hate that religious hierarchy was disseminating. Among the most widely known clashes between activists for human rights for AIDS patients and gay people at large–and organized, authoritative religion, can be embodied in the long-lasting and tragic conflict between the Roman Catholic diocesan bishop of New York and ACTUP (AIDS Coalition to Unleash Power, a non-profit organization) activists who challenged this widely-disseminated antigay and condemning rhetoric as being out of line with even orthodox Catholic commitments to human rights and social justice and contemporary needs for compassionate, dedicated healthcare for sick and dying people.

In 2019, the HBO series Pose, an historical drama, offered a fictionalized glimpse into this Catholic clash. The series follows the lives of fictional characters representing the real histories of Black and brown queer people involved in the ball culture world2 of the 1980s and 1990s. Naturally, the HIV/AIDS crisis plays a large role in dictating the lives of the characters in the show. One episode reenacted a famous standoff between

ACTUP protests and the Bishop John Cardinal O’Connor. Several of the main characters were inserted in this reenactment. The demonstration occurred on December 10, 1989, when ACT UP gathered at St. Patrick’s Cathedral in Manhattan. They were protesting

O’Connor’s political efforts to inhibit gay rights legislation, the archdiocesan opposition to safe sex education, the bishop’s statements about homosexuals and people who got abortions. This protest remains one of the largest single demonstration against the Roman

2 Ball culture, also known as drag ball cuture and the house ballroom community, is the name given to an underground U.S. subculture, generally comprised of Black and brown LGBTQ+ people. It is known for its balls–competitions in which people “walk”, compete, for prizes and glory. See Marlon Bailey for more information (2011). 15

Catholic Church, and resulted in 4500 participants standing in solidarity, with more than

100 arrested by NYPD (O’Laughlin, 2019).

Protesters–many of whom were Catholic and other Christian denominations– demonstrated outside the cathedral church during a Sunday Mass, and some entered the church with the intent of staging a “die-in” during the homily, viewed as the least sacred part of the liturgy, and thus the most appropriate. Some protestors chained themselves to pews, while others lay “dead” on the floor of the church.

A New York Times article by Jason Deparle in December of 1989 sets the scene, expressing the moral outrage of the demonstrators in the church:

“O'Connor says get back, we say fight back,'' chanted lines of protesters marching behind police barricades on the sidewalk. ''Condoms Not Prayer,'' read one protest sign. ''Take One and Save Your Life,'' read another sign, with rows of condoms attached. ''The Church claims to be pro-life and their policies are killing people,'' said Brenda Howard, 42, a protester.

As Michael O'Laughlin explains in his 2020 podcast from America Media (a

Jesuit publication), Plague: Untold Stories of AIDS & the Catholic Church, there was always a disconnect between the lived ethical values of laypeople and those of the hierarchy, who once lived extravagant and detached lives. It is for this reason that simple parish priests and laity, such as the Italian and Irish grandmothers in San Francisco and

Manhattan which O’Laughlin speaks about, were much more prompt in supporting the needs of their LGBTQ+ and HIV-positive siblings even in a church that told them they should not. In San Francisco, predominately gay Catholic parishes were centers that were not only queer-affirming but were among the first to provide AIDS care. Even in non- affirming places, Catholic sisters, who were nurses, gave care to AIDS patients with

compassion. Yet, bishops and theologians continued to lack a nuanced understanding of the pain and suffering experienced by their communities.

This trend is repeated across many American religious denominations. This grassroots organizing by and for LGBTQ+ people began before the onset of AIDS, but the need for religious coalition building was exacerbated during the epidemic, and indeed as Cleworth argues in Ambivalent Blood (2012), AIDS was the impetus for many efforts for gay integration. Likewise, the confrontation with tragedy became for many a reexamination of exclusionary theology.

It was amidst these cultural conditions in the years following the Stonewall riots, the small but committed grassroots organizations and even newly developed Protestant and other faith denominations arose to prominence. The Roman Catholic LGBTQ+ group

Dignity arose in 1969, followed by the Episcopal-Anglican LGBTQ+ organization

Integrity in 1974. LGBTQ+ Jewish communities began to appear in the following decades, and among the most famous LGBTQ-focused synagogues and congregations are

San Francisco’s Sha’ar Zahav (founded in 1977) and Congregation Kol Ami in West

Hollywood, California (founded in 1992). In 1968, the first entire denomination dedicated to gay and lesbian ministry, the Metropolitan Community Church, was founded by Troy Perry.

Other prominent American organizations dedicated to LGBTQ+ spirituality arose in the 1970s and afterwards. For example, queer approaches to Native American rituals and traditions, including a celebration of androgyny were practiced. Buddhist LGBTQ- inclusive organizations became popular, especially in large west coast cities (Cleworth,

2013). In Arizona, the Radical Gay Faeries movement was developed. The Faeries–a

reclamation of the slur “fairy”–had a doctrine promoting liberation from heterosexist and gender-specific norms for gay men (Hennen, 2008). It is worth remembering, that while these new communities were progressive for their time, many of these spiritual spaces were dominated primarily by white gay men, and later also white lesbians.

Yet, for those whom these new communities served, they meant a deep sense of meaning, purpose, and belonging. This reignited spiritual fire was especially significant to activists, whose fervency was benefited by affirming mythos. As columnist Richard

Goldstein argued in an early 1993 Village Voice article, queer people and their allies were beginning to perceive (and engineer) a strong link between queer spirituality, gay liberation, and AIDS activism. The 1960s through 1990s showed the advent of spiritual spaces that never existed before, though it must be said that these small organizations and grassroots groups were largely disconnected from mainstream portions of their respective sects, and marginalized, ostracized, and threatened. However, the possibilities of queer faith endeavors were only just beginning to be realized.

Others, such as Mark Thompson in Gay Spirit: Myth and Meaning (1987), have also noted this link between a newfound spiritual fervency and queer activism:

Evangelical Christians speak about “receiving Christ” and undergoing the rapture of the Holy Spirit, through which they, too, say they are born again. If the still new language of American gay liberation sounds remarkably like the Protestant language of reawakening and being born again, it is hardly accidental. For more than three hundred years American culture has been shaped by the paradigm of rebirth in the Promised Land. Queer activists’ embracement of terms like “safe space” and “liberated zones” falls easily into that tradition.

As Cleworth writes, this interest in liberation and a revolutionary American ideal of reawakening relates neatly to the culture of AIDS activism in later decades:

The advent of AIDS, with its staging of intimate confrontations with death and degeneration, inaugurated an outpouring of literature on gay spirituality in which autobiographies of abject suffering became sources of meditation and treatises on homoeroticism operated as manuals for spiritual praxis (68).

Unfortunately, advances for inclusive and affirming spirituality were overshadowed by the more vocal religious establishment. Not long after the first

LGBTQ-affirming faith communities were established, the AIDS virus entered the scene.

The epidemic would mean tortuous decades of uncertainty, and deep spiritual crises for those intimately involved.

Theories of Spirituality & Moral Development over the Lifespan

Religious views (including nonreligion, atheism, etc.) are integral to one’s being, and interact with all facets of a human life. Therefore, a variety of theories for exploring the longitudinal development over the course of one’s life will be applied as another theoretical lens for this project. All persons have some relationship to topics like culture, religion, and spirituality–even those who have responded to religion by choosing not to follow it. No people have absolutely no relationship to religion. This author argues that, because of the experience of being faced with terminal illness and mortality, the persons living with HIV whose stories are in this paper, have all had to think critically about cosmologies and spiritualities–out of necessity.

These oral narratives cover the development and change of human beings over time, which is a difficult sociological undertaking. Key to this project is the application of lifespan theory to the discussion of critical topics, including race, sexuality, gender, and economic status and the ways in which identities and experiences affect lifetime

development. Particularly for those in the helping professions, this theory has been critical in providing care for those living with mental, emotional, and physical disabilities or conditions (Bailey, 2002; Berger, 2017; Broderick & Blewitt, 2010; Carey, 2003;

Doenges et al., 2014; Giardino et al., 2003; Platt et al., 2015; Rossi & American

Sociological Association, 1985). These theories draw influence from the psychosexual development work of Sigmund Freud, the psychosocial theory work of Erik Erickson,

Jean Piaget’s cognitive theory of development, and contemporary psychological models of human development over time (Freud, 1949; Erikson & Erikson, 1997; Piaget et al.,

1977; Howe, 2008).

Erik Erikson’s theories on the stages of identity and personality are especially useful for understanding how beliefs and relationships change over time, which this author understands to be a process inseparable from spirituality, religion, or cosmology.

This theory explains how concepts such as trust, guilt, self-doubt, shame, relationships, productivity, and integrity affect how humans make meaning, contribute, and relate to others and our surroundings. Health, societal positions, and identity are all inexplicably linked to religion. This phenomenon is exhibited in the community impact of HIV/AIDS.

In 1963, Erickson published his theory on lifespan development. This theory examined concepts such as trust vs. mistrust, autonomy vs. shame/doubt, initiative vs. guilt, identity vs. confusion, intimacy vs. isolation, and generativity vs. stagnation as challenges face in a human life-span. These struggles define how people relate to identity, cognitive development, emotional well-being, and place in society. This project synthesizes oral history narratives among PLWH (People Living With HIV) with lifespan

theory. This critical lens centralizes the discussion of HIV/AIDS on personal worldview development and societal standing over the course of a human lifespan.

Landmark HIV/AIDS and LGBTQ+ Oral Histories

This project topic was inspired by other works that recorded and presented oral histories of HIV/AIDS and religion. In particular, this author found several works fascinating, helpful, and needed. First was Plague: Untold Stories of AIDS and the

Catholic Church (2019), the oral history podcast by journalist Mike O’Laughlin and

America media. Of additional importance was the University of California, San Francisco

AIDS Oral History Project: Nurses, Physicians, Scientists, 1981-1984. Other related works included Brier’s oral history of Chicagoan women living with HIV/AIDS (2018), the Poz magazine oral history of AIDS and art, and the audio database of the LGBTQ

Oral History Lab of the LGBT Religious Archives Network.

This Project’s Contribution to the Understanding of

Spirituality Discourse in a Pluralist World

These are significant topics which others have undertaken with care, and this thesis will to add to this corpus. This discipline will also be furthered by the database preserved at the Baylor University Institute for Oral History, which holds the remainder of the interviews conducted by the author, including those not featured in this thesis. The author has attempted to share a diverse cross-section of individuals’ experience in the hopes that readers may glean a deeper understanding of some of the experiences, ideas,

beliefs, and motivations among a group of people who are living with HIV in America today.

The academic study of religion and society frequently often lacks an understanding of the complexity of personal spirituality. Discussing religion–particularly when evaluating “spiritual journeys” as this project does–demands an investigation that goes beyond a detached objectivity. Religion–whether it is Sunni Islam, Episcopalianism, or atheism–cannot be studied as though it were purely academic. Spirituality is a mechanism by which individuals unite their internal self with the outside world, respond to stimulus, and strive to comprehend perennial questions of meaning. There is extensive scholarship on HIV and religious institutions. However, these are by nature about cooperate bodies, not about people as individuals. This project focuses on individual humans and their particular relationship with spirituality. It is important to approach religion and spirituality with attention to pluralism; that is, valuing and affording dignity to every unique worldview. At the same time, respecting the dignity and autonomy of individuals means representing their definitions of religion as intrinsically sacred and meaningful to the individuals who possess them. This unique perspective will hopefully contribute to the exiting literature, and provide insight on the relationship between

HIV/AIDS and spirituality.

CHAPTER TWO

Lifespan Narratives of Belief, Sexuality, & Health:

Presentation of Findings

׃ ַכְשׁ ָתְּח֫ יִנ֥ ֵדֹק־הָמּֽ ָל ר֥ ֵלֵא ֗ ַלְבּ ץַח֣ יוֹא ֵ בֽ ָרְמוֹא ה֤ ׀ ֵאְל ל֥ יִﬠְלַס ֮ ָמָל ה֪ מל֮יﬠלסל אל׀ה רמֹ

ָ׃ ֶרְבּ חַצ֤ ׀ ַתוֹמְצַﬠֽ ְבּ י֗ יִנוּ֥פְרֵח ָרְרוֹצ י֑ ָרְמָאְבּ ם֥ ַלֵא י֥ ַה־לָכּ ֹיּ֝ םו֗ ֵיַּא ה֥ ֶהֱא ךיֽ הֱ

I will say to God, my Rock, ‘Why have You forgotten me? Why should I walk in gloom under the oppression of the enemy?’ With murder in my bones, my oppressors have reproached me by saying to me all day long, ‘Where is your God?’

-The 42nd Psalm, v. 10-11.1

Project Methodology

The objective of this project was to collect, organize, and present a body of qualitative data about the lived experiences and evolving beliefs of people living with

HIV (PLWH) in America today. This required the collection of in-person and remote interviews. Then, the audio recordings were transcribed by the team at the Baylor

University Institute for Oral History, then the author began to analyze the text transcripts for themes. Lastly, themes were organized, and quotes were offered as qualitative data for each theme, to show continuity, discontinuity, similarity, and difference among the participants who reported their experiences with religion, spirituality, culture, and HIV.

The finished project hopefully offers a glimpse into the beliefs and experiences of a

1 Adapted from the Hebrew text of Chabad.org online database. 23

group of people, focused on a particular theme–religion–which is underrepresented in existing projects.

The driving research questions behind the interviews were: 1) what is the relationship of members of the HIV-positive community in contemporary America to religion and spirituality?; 2) what experiences shaped changes or continuity in belief and practice?; and 3) how have worldview changes over time, as experienced by HIV survivors related to their interactions with family, religion, society, and community?

Though the specific wording of interviews varied slightly by participant, there was a general road map which all interviews followed. This was: childhood family and faith narrative; coming of age and understanding sexuality and how it related to family, culture, religion, and community; understanding the HIV diagnosis; responding emotionally and spiritually to the diagnosis; and how lived experiences as HIV-positive people have shaped beliefs, opinions, and interactions in and with the world. If the reader wishes to know exactly which questions were asked of whom and when, full textual transcripts are available in the archives of the Baylor Institute for Oral History, as both audio files and transcripts. Further information about access is found in the

Bibliography.2

As of April 2020, there have been 9 interviews conducted by the author of this paper, Kyle Desrosiers, but a specific 6 across an intentionally diverse cross-section of the participant pool have been presented in this paper. This was due to a desire to provide

2 It must be noted that at the time of publication of this work the archives were not yet available to the general public. However, these archives, both audio and transcript files, will ultimately be published online. Please visit the Baylor Institute for Oral History digital collections website for more information (https://digitalcollections-baylor.quartexcollections.com/special-libraries-collections/oral-history), or the Institute for Oral History homepage (https://www.baylor.edu/oralhistory/). 24

depth and ensure the easiness of understanding narratives, without the complications of too many presented at one time. The author was also constrained by time and space for this undergraduate thesis project, so elected for 6 featured in this paper. In the future, I hope to continue this project to present these interviews and others that I will have collected in the time since.

These interviews were generally about one hour in length, and some were held face to face using digital audio recording technology, while others were recorded telephone conversations. The decision for in-person or distance interview depended on physical proximity; some participants were located in central-northern Texas, where the author lives, while others were situated in Oklahoma or California, etc. This project was supported by the leadership, resources, and technology of the Baylor Institute for Oral

History. It was at the institute that the author recorded the telephone interviews, and with borrowed equipment from the institute that in-person interviews were conducted. It was also through the generosity of the institute that the audio was transcribed into textual transcripts, which the author used for this project.

Several major themes were prevalent among the participants’ transcripts. These themes constitute the headings I-X of Chapter Two3:

I. Family, Culture, and Childhood Faith as the Starting Point for Spiritual

Journey

II. Exploring Sexuality: Discovery, Liberation, and Trauma

III. Understanding the Diagnosis

IV. Picking up the Pieces: Expanding Worldviews in the Face of Mortality

3 Please see the Table of Contents on pg. ii for easy reference to find a particular theme of interest. 25

V. Collective HIV Trauma

VI. Coping with Personal Trauma

VII. Identity-Related Experiences

VIII. Dealing with Loss

IX. Questions about Reconciliation

X. Hopes and Anxieties about the Future of HIV/AIDS.

Lastly, the relationships among these experiences and beliefs, as shown in the thematic groupings, were reflected upon in Chapter Three (pg. 86), followed by recommendations for future research.

Certain resources were helpful in the development of a qualitative data analysis method. First, the 2013 sourcebook Qualitative Data Analysis by Miles & Huberman was invaluable. Second, the 2011 Oxford Handbook of Oral History provided guidance in the development of an oral history project, and aided with methods of collection and presentation. Lastly, the previous work by the author’s faculty advisor, Dr. Mia Moody-

Ramirez, particularly in hers and Dr. C. Burleson’s work Sixteen Ain’t So Sweet:

Longitudinal Study of Jasper Dragging, was particularly helpful in better understanding how to present oral history, especially when a tragic and traumatic history must be told with dignity, such as was the case in both the history of the Jasper lynching and the suffering experienced by HIV-positive Americans.

Understanding the Findings

After in-depth examination of the audio and transcripts for interviews with participants, several significant themes emerged. Bearing in mind Erickson’s lifespan theory and centering on a commitment to presenting the queer and liberated experience of developing one’s own new spirituality or worldview in light of marginalization, this author has organized frequently recurring topics and themes under a variety of subcategories. These all represent commonalities–as well as points of difference in how various participants responded to certain stimuli or conditions. They are not generalizations of all individuals living with HIV, but rather synthesis of the stories some individuals living with HIV have shared.

Narratives among the various participants will be organized and compared along these themes to afford the reader some insight on the beliefs and experiences that people living with HIV in America had and continue to have in relationship to religion, spirituality, health, and sexuality. Following the presentation of themes, conclusions and recommendations will be presented.

I. Family, Culture, and Childhood Faith as

the Starting Point for Spiritual Journey

When thinking about the concept of spiritual journey or lifetime development, it only makes sense to start with childhood. The cultures, families, and religious communities people are born into or initiated into through rites of passage, normally occur without the full consent of the child. This is neither positive nor negative in and of itself, and the age of reason, consent or agency may differ by the philosophy of each

faith, but generally childhood is a time when one is given a community or creed. This is the beginning of the time period that preceded the HIV-diagnosis for the persons interviewed in this project, which this author considers as one of the significant spiritual turning points. Particularly prevalent in the childhood memories of those interviewed were 1) experiences related to being queer in a given society or community and 2) experiences of children who inherited the religious trauma of their parents, leading to either being raised with an aversion to religion or strict indoctrination. These experiences of embrace or marginalization for sexuality and gender identities were the precursors to religious responses of HIV status, a condition deeply linked to constructs of morality and sexuality.

For many participants, mid-childhood was a time during which they first realized they were different, in relation to other children at school or their communities. One participant, Michael, a 59-year-old white Jewish gay man from Los Angeles, CA4, explained feeling different from others in his community in small-town Pennsylvania:

I felt like an outsider for a number of reasons. Being Jewish was only one of them. Every time there was a Jewish holiday, for example, when I was in elementary school, me and the other one or two Jewish kids would be asked to say a couple of words about, ‘What is Hanukkah,’ and, ‘Bring in the menorah for show-and-tell,’ and that sort of thing, but I always felt like they almost laughed at it. I didn’t feel like it was something that was appreciated as legitimate. But mostly, I felt different because I didn’t know what it was at the time, exactly. At about twelve years old, I figured out that I was gay and that most of my feeling different had to do with not being interested in girls, not being interested in sports, and being Jewish was only a piece of the puzzle.

4 Michael Sugar, interview by Kyle Desrosiers, October 2, 2019, telephone interview between Los Angeles, CA and Waco, TX, transcript, Baylor University Institute for Oral History, Waco, TX.

Identity-related childhood formation also shaped the way that another participant,

Ron, a 35-year-old Black gay man from New Orleans, LA5, viewed his relationship to worldview, belonging, and understanding marginalization:

So, I actually grew up in Houston and we were pretty poor. I say ‘pretty poor’—we were really poor, but I was raised by my grandmother and my grandmother couldn’t read or write, so she couldn’t teach me those basic skills, but she taught me right and wrong... and one of the things that was right for her was religion.

Ron explained that he was a precocious child, intelligent enough to enter first grade at age three. He says that this was one of the first indications that he was different from other people. He says that this difference instilled a sense of shame. It was this precociousness and natural tendency to question things that led to a complicated relationship with Catholicism:

It’s like, ‘Okay. You’re going to be baptized here, and you’re going to do this, and you’re going to be an altar boy.’ I always felt pressured to be something that I didn’t know how to be because I only knew how to be me, and I didn’t realize that I was different. I didn’t know what it meant to be masculine. I didn’t know anything. All I knew was that society was telling me that, ‘Boys are supposed to do this, girls are supposed to do this,’ and I just didn’t know that I wasn’t doing the right things.

Another participant, Jesús, 59-year-old gay Mexican-American from Los

Angeles, who was raised Roman Catholic6, associates Catholic rigidity with harmful cultural understandings of gender and sexuality. Jesús was born and raised in Mexico, explains the methods he cultivated to strengthen himself against harmful messages and abusive norms:

I lived my life without having the turmoil about me being gay—because when you’re surrounded by, ‘You’re going to hell if you do this,’ people

5 Ron Wilson, interview by Kyle Desrosiers, September 19, 2019, in Dallas, Texas, transcript, Baylor University Institute for Oral History, Waco. 6 Jesús Guillen, interview by Kyle Desrosiers, December 20, 2019, via telephone call between San Francisco, CA and Waco, TX, transcript, Baylor University Institute for Oral History, Waco. 29

get traumatized… [but] I didn’t have that turmoil even if I was going to church when I was growing up. It was almost like that safety of knowing I have my own personal connection with God, and I know I’m a good person, and I’m not hurting anybody, and whoever I am, this is what I am.

Jesús was nonetheless conscious of the conditions of life that are defined by

Roman Catholic Christianity but also Mexican-Latinx cultural norms of the mid twentieth century, especially how they related to gender roles and homosexuality. He also recognizes the positive role that faith played in shaping people are loving and compassionate:

I can tell you that many of my uncles and people are like the stereotypes of the macho Mexican person that follows Christianity and Catholicism a lot and everything else is bad or wrong,... [but] the person that I adore most in my life, my grandmother—she was the best example of simply doing good or loving someone, and she was a very Catholic woman, but she was the most accepting woman of things. She was very Catholic with the rosary by her bed all the time, and I’m sure she was praying for me every day.

Robb, a 56 year-old white gay man from Dallas, TX, who became a baptized

Latter-day Saint when his family converted while he was a child7, discusses the way in which the tradition discouraged dissention. Similar to Ron, he cites his intelligence as a child and a natural proclivity toward questioning nonetheless inspired him to challenge what he could not understand:

If you’ve been in the Mormon church, they do home visits weekly, and you have three hours of church plus your preparation for whatever your role is and your Monday family home—I mean, really, you do not get any time alone to even clear your head outside of the dogma that you’re being barraged with. It’s very effective—very effective.

7 Robb Ivey, interview by Kyle Desrosiers, September 20, 2019, Dallas, TX, transcript, Baylor University Institute for Oral History, Waco. 30

Robb explains that the most challenging part of being a gay Mormon when he came of age was negotiating the rigid gender structure, a situation that many of the participants from other faith traditions also experienced:

My self-esteem was almost destroyed, I thought about suicide going through that reconditioning [LDS gay conversion therapy], how friends of mine have had these dark nights of the soul with their religion, being told they were these awful things—I don’t know why we scare them [the church authorities] so much. Part of what I think is this: to be a real dominator society, you have to be real machismo. I think we [gays] shine a light on what they can’t—that machismo is a weakness, that it’s too hard. It’s too rigid, it’s close-minded, and it needs to be more flexible.

Religion did not play a positive or negative role in the childhood development of

Marla is a 55-year-old Jewish Latina straight woman from San Francisco, CA.8 She experienced a childhood with no religion, minor connection with Jewish-American culture, and an aversion to God or spirituality. Marla explains:

My mother was raised in an orthodox Jewish home and she was overburdened with religion, and she kind of rebelled, and my father was not Jewish. He was raised by—well, actually my step-dad raised me since I was five, and he was raised by a Southern Baptist minister, so he also was raised with a lot of religion, so I was raised in a home with no religion at all, and not only no religion, but I kind of grew up within an aversion to God.

Marla, will later explain the nuances of being a woman living with HIV. She explains that though she is heterosexual, she received socialization regarding sex and gender nonetheless. For example, when discussing her family, Marla referred to her mother as a “women’s libber” of the 1960s, who taught her feminist values:

She would clean houses on the weekends to make ends meet, and so I saw her work ethic, and she always told me, ‘Women can do whatever they want,’ and she always encouraged me to make a way for myself and I was—from a very early age, six years old on, I was pulling weeds for the neighbors for a penny a piece and selling stickers. My dad would bring

8 Marla Allen, interview by Kyle Desrosiers, September 25, 2019, via phone call between San Francisco, CA and Waco, TX, transcript, Baylor University Institute for Oral History, Waco. 31

home stickers from work, and my sister and I would go door to door and sell stickers, and we were selling lemonade, so I never saw any limits. So, in that way, there were really no limits in my life.

Yet, as Marla later explains–and as many other participants have voiced, the HIV virus would indeed come to put significant limits on their lives. If parents or culture had told them anything was possible as children, many of them would later hear from the same communities that they were no longer welcome or broken beyond repair. For many, finding a way to separate the wheat from the chaff of childhood faith and cultural life proved difficult, but others were able to find ways to reclaim practices in ways that were healthy and beneficial. This will be explained more in later sections.

II. Exploring Sexuality: Discovery, Liberation, and Trauma

For many of the participants, especially those who identified as gay or queer, or who were socialized a woman (in the case of Marla, who was born in the 1960s), religion and American culture in general had a profound impact on the way sexuality came to be viewed, and how participants responded when they came of age, gained autonomy to move where they desired, earn an income how they desired, and could participate in cultural movements of the time, such as sexual liberation and gay liberation. This second category generally relates to a period of awakening or exploration that participants experienced in terms of sexuality’s relationship to religion or culture.

One, participant, Michael, told about the time he came out to his parents, who grew up under the dark shadow cast by the horrors of the Holocaust, and lived with the social norm of persecution. Because of–or in spite of–their own background, they wanted

their son to assimilate and lead what they viewed as a “normal” life. It took them years to understand Michael’s sexuality as normal, and not view him as flawed or sick:

When I came out to my parents, my mother said, ‘Anybody that’s sick and is not willing to get help is not a part of this family,’ and that was very hurtful. We didn’t talk for a long time. And even after my HIV diagnosis, I didn’t disclose my diagnosis to my parents. Even though we were speaking again by that time, I didn’t disclose my diagnosis to my parents for ten years... I told them, and the way that I said it was that I had HIV and, ‘I absolutely need to know if you’re going to be there for me.” And at that time, I had a boyfriend and I said, ‘Don is my partner. He is family, and if anything should happen to me if I were to get sick, I would certainly want you to be there, but if you can’t accept Don as my family, you would not be welcome.’ It took them a minute to digest this new piece of information, but they came around and really latched onto that unconditional love that really broke through whatever other feelings they might have had—and I think, Wow. If I hadn’t disclosed that to them, how much love I would’ve cheated myself out of.

Michael’s parents, as Holocaust survivors, were eventually able to develop an ethic of solidarity with their son who was persecuted for being different, in spite of their

Eastern European cultural norms:

I think that my parents’ experience with the Holocaust maybe doubly instilled in them that idea about how careful you have to be, and what things are okay, and the price that you pay for being anything other than what’s right, and so, they didn’t ever really want to know all the details about my test results and what I was experiencing; they just wanted me to be well.

Similarly, another participant, Robb, explained that for him it was also because of his tradition–and not in spite of it– that he was able to find liberation. He began his journey of discover within orthodox framework while he was abroad with the Church of

Jesus Christ of Latter-day Saints on a mission to evangelize in Japan–a commitment

Mormon men in good-standing are expected to make:

I thought, ‘I’m gonna be obedient, and maybe God will help me.’ Here I am on my mission. I start to get a crush on my companion, who was a

Japanese Elder9. He was so sweet. The Japanese people are beautiful. About halfway through my mission, I lost my urge to push my message on others. I was getting more curious about them, observing how harmonious they are with nature, how considerate they are. I thought, ‘I could really pause a moment to understand them better before telling them what they need to know.’

Robb explains that his experiences with beauty, kindness, and new and different philosophies while in Japan inspired him to think more broadly and find goodness and beauty where he had previously been told he could not. When he came back, he was still

“going through the motions”, and attending Brigham Young University:

I’m going to these sermons and stuff and they’re telling me, ‘Now, your next mission is to find a fine young daughter of Zion, and get married and fill the earth with your spawn—your children. That’s your next mission.’ (laughs) ‘Okay, but I’m not sure I’m really the one to do this.’ So, I submit myself to the reconditioning, and it just destroys your self-esteem and just makes you numb.

The way that Jesús first began exploring his sexuality as a youth was different.

For him, there was no religious stigma which he internalized so much as social ostracization and lack of knowledge of anything positive about gay people, in Mexico–or in the USA at the time. Jesús remembers never seeing a single positive depiction of gay people, and never experiencing dating or relationships , because of fear of physical violence and social ostracization. There was only sex in secret and the only community was at gay bars, which were frequently victim to police raids and would all be shut down during election years for the sake of “enforcing morality.” He remembers his first time learning about anything that had to do with homosexuality occurring when he was a child:

One of my aunts was very close to my age, she had this very handsome boyfriend... [who was] very involved in politics, and government, and the whole thing. Somebody saw this guy kissing another guy somewhere and

9A title for men in the Latter-day Saints Church polity. 34

they literally drove this guy out of town, and nobody else ever spoke one word about it. Even talking to you, I hope he’s alive and he wasn’t killed or something.

It was in this culture that Jesús understood that he was gay. He said he knew since age four, though because of messages of society, did not think that sexuality could be expressed in public. This was a sentiment that many of the older generation of gay men shared. Because Jesús did not have the option of dating or relationships or meeting boys his own age, he describes his first sexual experience:

So, I had sex for the first time when I was twelve years old and, again, you might doubt or you might think that somebody did something to me, but the reality is that it was me that I wanted to seduce someone that was about eighteen and for me, it was somewhat like—there is a movie somewhere like this little kid talks about, ‘Well, I have the option to have sex with this other kid with freckles or have sex with a handsome soldier,’ so I think, in my case, I’m one of those people that had sex with a handsome soldier, (laughs) and this guy—he even felt really guilty about it after that and for a long time until the last few years or something, finally, because he was very—obviously, he was still feeling uncomfortable with me, and I told him, ‘If anything, you were part of something good for me,’

For Michael, who identifies as a lover of film and pop culture, it was only appropriate that the first positive (and indeed, only) messages he saw about homosexuality was from television in an era when these things were only just beginning to enter public discourse–and very seldom portrayed in a positive light. He was also twelve years old, and it was 1972:

It was a film on TV called ‘That Certain Summer’ with Hal Holbrook, and Martin Sheen and Hope Lange, and it was about a gay couple living in San Francisco and one of them had previously been married and had a child, and the child comes to visit them, and they try to hide the fact that they’re gay, but the child somehow finds out, and gets scared and runs away, and they have to scour the city to find this little boy, and then, to bring him home and to explain to him that his father is gay, and what this all means, and that this is about love and this isn’t something to fear or to hate. It was not only the first real—the first time that there were real gay characters on a television movie, but the first time that gay characters were also

portrayed in a positive light, and sitting there on the sofa with my parents in the living room in York, Pennsylvania, I realized that that’s who I am. But, I also learned that it’s something that I’m supposed to keep secret until I can move to the big city.

III. Understanding the Diagnosis

In this project, there are two distinct population groups. First, there are the long- term survivors, who constitute the bulk of the participants this author interviewed for the oral history archive. From the participants this author has chosen to highlight in this paper, Robb, Marla, Jesús, and Michael constitute this generation, who were first diagnosed with HIV in the late 1980s. Second, there are the persons who were diagnosed with HIV after 2000, such as Ron. The older generation–as shown in the literature review and historical overview–experienced a time period without medication, where the likelihood of long term survival was slim, and an HIV diagnosis generally meant the development of AIDS and associated conditions, and a painful and drawn-out death over a period of years. Thus, this generation constitutes distinctly different social and scientific conditions from the latter generation. Nonetheless, all the participants had to confront diagnosis–learning that they had tested positive for HIV–from an emotional and spiritual or philosophical perspective. This turning point represented for the older generation, who had come of age as gay in a generation without AIDS, when there was the sexual liberation movement, lost their innocence and realized the epidemical effects of how the virus spread. This was transition from life with innocence before AIDS (esp. concerning the oldest interviewees who came of age before the epidemic).

Michael discusses the mid 1980s, when HIV first came on “the scene,” and he began to see the widespread horror and trauma that was decimating the gay community.

It came slowly, then in the fashion of epidemics, it got worse and worse. For Michael, and for other gay men participants, the growing epidemic represented a tremendous loss of innocence after a few decades of increasing sexual liberation and improved gay rights:

I lived in Hollywood and West Hollywood, where there were huge numbers of gay people. I felt safe and sort of at home, and it really changed me... And then AIDS came along. I remember, in 1981, I used to go with a bunch of friends. We would work out together at a gym in West Hollywood, and then afterwards we’d all go to this local coffee shop and we’d eat. One night, somebody at that table—there was a group of eight of us that you see, and one guy that was at the table asked if anybody had seen the article in the New York Times about what was called the gay cancer. We talked about it and we all dismissed it as, ‘That couldn’t be. That’s impossible.’ It wasn’t plausible. That was in 1981, and I’m the only person, by the way, that was at that table that night who’s still alive.

But, unfortunately, as Michael, the gay community, and all of America eventually discovered, it was indeed plausible. But as more and more people got sick, information, service, and governmental aid was slow to follow the epidemic flood:

I read about it in the newspaper, I just remember that as the first time that it appeared on my radar, and then, slowly, you’d start to hear about people getting sick and dying in New York and in San Francisco. It seemed, at least, in my experience, that it happened in those places first, and then, all of a sudden, the first person I knew was sick. His name was Adam... I remember when we had to get into the hospital and we called the ambulance. As soon as the ambulance people knew that he had AIDS, they wouldn’t take him. They left him on the pavement, and so, we had to get him to the hospital another way and we really had to fight for him to get care—for people to even touch him, rather than just leave him in the hallway. At that time, when you visited an AIDS patient, there would be instructions on the door about how to visit an AIDS patient, and you’d have to put on a gown, and a mask, and gloves, and in some instances, that’s how people—that’s sometimes how family members found out that their son, their child, or their sibling had AIDS, because they arrived at the hospital and found those instructions on the door. And then, after Adam, soon, it was another one and another one and another one. That would’ve been, like, 1984, and then I got my own diagnosis in 1985.

In the midst of the horror and trauma of the onset of the AIDS crisis, Marla discussed how tragedy inspired her to grow in empathy and compassion, and become comfortable with gay people. She reports unlearning the bias she was raised with. This was beneficial, because in not a long time after the crisis onset, Marla would test positive.

She identifies the difficulty women had in getting tested for HIV in the late 1980s. This was primarily due to false notions about how the disease was spread, the thought that it affected “immoral” others–promiscuous gay and bisexual men, drug users, and sex workers. Though gay men constituted the largest statistical population of HIV-positive people, and faced unique marginalization due to their identities, women living with HIV faced their own distinct forms of marginalization.

Marla said that because she was not “highly sexually active” and also because she was a women, she had difficulty getting the doctors to test her. She explains how coincidental it is that she even got tested when she did:

So, it was 1988, I was twenty-four years old, and my—I was working in a law office as a legal secretary, and my friend that worked in the mail room—they were called the ‘David’s.’ They were a couple and they were both named David, and they asked me if I would give them a ride to the testing center and I said I would give them a ride, but to make me an appointment too because I didn’t want to be bored and wait in the car, and so, they made me an appointment and they were negative and I was [HIV] positive.

Robb, who would test HIV-positive a few years later in 1994, reflects that he had just buried his partner after watching him suffer and decline for several years. He was attending funerals for friends and partners of friends every week. At this time, AZT had only just been released and began to be used–though the public would later learn it was a toxic drug and not an effective way to treat the HIV virus.

Ron, who is in his thirties, and was diagnosed after 2000, had a different cultural perspective on HIV, but nonetheless confronted a difficult range of emotions, from terror to apathy to nihilism to guilt to anger:

I was actually dating someone and I calmed down a bit because I really liked him, and when you’re really young, you’re like, ‘No, I think he’s the one,’ and you decide that monogamy is the thing that you need to try in order to make sure that they stick around, and so, I did, and what actually led me to the doctor was I had an STI and the symptoms were there, and I went and I was like, ‘I think something’s wrong.’ They actually told me, at the time, that I had gonorrhea, so they treated me right there on the spot and sent me on my way, but, of course, when you’re treated for an STD, they test you for—they also test you for HIV. Well, I never went back… I want to say it was sixty days later when I received a phone call and it was from the Tarrant County Health Department: ‘I need you to come in so that we can give you some information about your health,’ and I knew, and that night was like floating through clouds. Damn it. All those times that I did all those things finally caught up to me,’ but I’m a guy who’s never done drugs… So, I had to just—was arrogant enough to think that it could not get to me and it did, so I went in, and when I got an official diagnosis, I was very numb... I had already freaked myself out and gone through every scenario in my head of how I was going to die.

Though Ron tested positive in the mid 2000s decade, he still experienced feelings of fear, apathy, and hopelessness, fearing imminent death, though that was not and would not increasingly be the scientific reality at this point in history. Perhaps this is also why

Ron has since chosen the path he is on, HIV nonprofit advocacy. He remembers the difficult first few months understanding his positive diagnosis:

I felt the responsibility to tell this person that I was dating, ‘Hey, I got a positive diagnosis,’ but I had to do it quickly. I couldn’t just sit on that. I was like, ‘Oh, my God. What if I give it to him?’ That was my thought, and so, I told him after processing that, and he sort of cut me off and I just thought of myself as shit. That was probably the other reason why I felt like, ‘Okay. I can just go die now. It’s fine,’ because I’m twenty-three and I just affected someone else’s life, in my head.

Jesús remembers feeling in denial of his diagnosis. Indeed, people who are diagnosed as HIV-positive–as others who receive terminal diagnosis sometimes do–often

go through the stages of grief similar to those who have lost a loved-one.10 Indeed, these people have lost a good degree of their optimism about the future:

In those days there were many false positives and many false negatives, so I tried to do that test afterwards, like, four more times thinking it would come back negative... But no. It was positive, and that’s another part that, again, I don’t know—honestly, I don’t know how I did it because I keep asking, sometimes, people, ‘Man, what is worse: really be with a community and see all your friends and lovers die, or to know that you might die next day and have nobody to tell that you might die?’

Jesús also remembers the surrealness of the mid 1980s, when he recognized that the man who he believed passed HIV to him died. He knew his prospects were similar and had to make the most of confronting his mortality. He reflects that while the imminent threat of mortality was immediate, it also took him a long amount of time to both be comfortable with his diagnosis and formulate a plan of how to move forward:

The guy that passed it to me... It happened that we were part of this one tour of a play and we were traveling. I really liked him. Of course, sex happened, and that was it, and he died and I’m still here, but I really didn’t have much of a community or something until I moved to San Francisco in 1990. All those years in L.A.—I mean, my family didn’t even know I was gay; neither the family in L.A., neither my family in Mexico, so even on top of that, to tell them that I was HIV-positive—no way. So, it took me a long time to really—until I moved here that I started to feel more comfortable with saying, ‘Yes, I am HIV-positive.’

IV: Picking up the Pieces:

Expanding Worldviews in the Face of Mortality

People living with HIV/AIDS frequently must confront their own mortality, and often cope with loss and suffering among whom they love. Being stigmatized by religion for any reason results in the need for the reexamination of religious doctrines and status

10 See Elisabeth Kübler-Ross’s book On Death and Dying (1969). 40

quos their communities taught them. For HIV-positive people, and those with other mortal illnesses, there is a further necessity to understand spiritual meaning, because for many survivors, especially before 2000 there was a profound fear of imminent death.

These findings have been broken up into sections entitled A) Answering Tough Questions and B) Cultivating New Spiritual Practices and Understandings.

A) Answering Tough Questions

These participants have had to answer tough questions that those who have not been “othered” have not needed to answer in the same ways. Amazingly–in spite of all the alienation, trauma, and pain HIV has meant to many people–some of the participants voiced some kinds of gratitude, not for the illness itself but for the ways in which they had to open up in compassion and understanding, as a means to cope and survive. One participant, Michael, reported:

I think that having lived with HIV/AIDS, and having lost so many friends and having been through all of that—I think that I have a depth of compassion that I would not have had otherwise. In that respect, maybe it’s, in some ways, a gift. I mean, I would never wish it on anybody, but that is something that is—my depth of compassion, my capacity to have that kind of compassion is something that I really value and I genuinely don’t think I’d have had it without those experiences.

Similarly, Robb reported that he was also able to draw upon compassion and understanding in spite of circumstances. He voiced that he indeed still carries anger and hurt from the experiences he had in his Latter-day Saints (Mormon) denomination. Robb endured conversion therapy and the cultural trappings of a patriarchal and conservative church. Nonetheless, he explains that his experiences motivated him to continually seek compassion, forgiveness, and understanding:

My dad thinks I’m antichristian, and I’m just anti-hypocrisy and I don’t like how Christianity has been appropriated by people who really don’t understand what it even is. So, anyway, I’m not against it. I just—I hate how it’s being used by an oppressive tribe right now to appropriate an authority and a power that doesn’t belong to them.

In this way, Robb and others have been able to reclaim the spiritual framework they were raised in to find forgiveness, draw upon the values that contribute to healing and flourishing, and at the same time voice outrage at what deserves outrage–but with grace and compassion. Robb explains that paradoxically, the service he was required to contribute to the Latter-day Saints Church–through a mission in Japan, and later as an attendee at Brigham Young University, he actually learned to protest the injustices and harmful status quos he feels the church taught. In his words, he was not indoctrinated but liberated. For this, he is even thankful. He is especially grateful for his epistemology course at Brigham Young University, which set him on the first track toward developing a liberation theology. Robb also cites popular theologians, Terrance Mckenna and Alan

Watts as major steps on his journey toward an expanding worldview.11

Indeed, for Robb it was the very structures intended–in his words–to control and force ideological conformity–that led to his spiritual and personal liberation as a marginalized gay man and later as a marginalized PLWH. It was while on his mission in

Japan that he first experienced the joy of attraction and romantic interest. He had a crush on one of his companions who was also a missionary. He connects his first crush to the love he developed for the way of life of the Japanese people:

So, I had a crush on one of my companions. He was so sweet, and the Japanese people are beautiful, and about halfway through my mission, I really lost some of my urge to push my message on others. I was getting

11 Terrance McKenna was an American ethnobotanist, mystic, author, and lecturer. Alan Watts was a British philosopher known for popularizing the Buddhist, Taoist, and Hindu traditions for western audiences. 42

more curious about them; observing how harmonious they were with nature, and how considerate they were, and, ‘I could pause a moment to understand them better before telling them what they need to know!’ and I started to see some beautiful things, and one of them was embed[ed] in my companion: his love of nature. I remember spitting out some gum sometime. It was supposed to go into a grate and it missed, and he stopped us and he says—and went, and picked it up, and put it in his pocket in some paper and said, ‘We don’t do that here,’ and then, I look around and the country’s beautiful! It’s so clean and so natural, and it’s because they take care of it and they love it. I was like, ‘I need to learn from them.’

Ron, a Black man raised Roman Catholic, experienced a similar journey out of the messages of inadequacy and worthlessness he felt from the church–but especially the people in the church–were being given to him. Ron, however, initially responded with anger at the church, as he was not able to find liberation from within its framework, as

Robb was able to do to some extent.

Ron explains how he felt tremendous sadness and betrayal and confusion at the ways in which he thought that the God who was supposed to love him was said (by church leaders and laity) to be punishing him for being gay and living how he did. He explains the spiritual trauma that continued to persist even after he felt that God–at least not how God was said to be in Catholicism–did not exist:

When I graduated high school and left home… and got diagnosed, I think I had spent so much time warding off God like, “Fuck God. There’s no God. What are you talking about?” and being so angry at how I felt about myself as a result of this God that I was supposed to fear. Part of my guilt was linked to that too because I was like, “Well, maybe if I had just lived a more wholesome life, then—,” and I apologized to God. I did. I remember praying and apologizing, and I even felt ridiculous at the time because I was like, “You don’t owe me anything,” and I had a breakdown. It was in my car. I was on my way home from a rehearsal and I had a breakdown, and I remember yelling on the side of the road and a cop pulled up because I was hysterical on the side of the road, like, “You don’t owe me anything!” and, “I know I’ve been terrible to you!” I thought that that was a punishment. I thought that an HIV diagnosis was punishment for my being gay and for living the life that I was living, and I thought it was God’s doing.

Yet, Ron, who is among the younger generation of men living with HIV, expresses the tremendous change in worldview he has undergone, as he has grown in compassion, empathy, and forgiveness–and continued to learn about other (and more liberating) ways to view the world, meaning, purpose, and spirituality:

This day and age, I am a very, very different person, and it’s the thing where I am very comfortable stating that I am not a religious person, and I am very comfortable talking about religion, and I respect those who have faith in a God or whoever or whatever deity they decide to meet. I think about four years after my diagnosis would be the time when I really started questioning like, ‘Okay. I’m here. I’m clearly not going to die. What can I learn? What can I teach? How can I change me?’ Dealing with—I had stopped drinking for a while and I really took the time to really, truly study. What is religion? What does it mean? What does it come from? Why do we place so much emphasis on it? Why does it guide us to do anything? Why does it guide us to take action in any way, and why can’t we guide ourselves to take actions to do good? Why can I heal myself of the anger that I felt that affected the space around me?... I don’t strive for perfection. I just strive to be the best version of myself for myself, and in turn, I believe that the energy you put out is the energy you get back.

Robb also found liberation through learning. The Roman Catholic and Latter-day

Saints traditions are similar, insofar as both traditions–at least as the hierarchy intends them to be followed–are patriarchal in nature, and afford a great degree of honor to authority, hierarchy, and tradition, all things that maintain a status quo of those in power.

Thus, it makes sense that both men found liberation through criticism of the shadow sides of their own faiths and the examination of different faiths, to arrive at the ongoing process which they are still participating in today. In addition to the way the Robb felt shaped by popular intellectuals, spiritual guides from all over the world, and in particular

Buddhist-Daoist writings, he also expressed that “happy accidents” were indeed responsible for catalyzing some of his journey toward liberation and freedom:

Sometimes I wonder how many people get those accidents; bumping into that first kiss. I mean, that epiphany—that could’ve taken a lot longer. That class where I was introduced to epistemology and where they made us conduct controlled experiments to realize just how hard it is to really form an experiment where you can qualify things and really understand things, and how much of your personal bias messes you up, and how many things you have to control for to see things clearly—I’m grateful for that. They [the LDS Church, who Robb cites as the impetus for emotional and spiritual trauma] didn’t realize they gave me that. Also, you really need help from other people, and so, I was very grateful for the friends that were wiser than me that helped me see myself and give me other ideas that I could experiment with and use in my life.

Another participant, Michael, though with different language, referred to such happy accidents to express the experiences and relationships that led him back to a healthy and helpful understanding of spirituality. He explains that the impetus for the journey back to faith was the death of his devout Jewish father, with whom he had made peace only just before he died. Michael explains that though he was not an observant

Jew, he decided to go to a temple in Los Angeles to say Kaddish, the prayer for the dead, for his father:

Because I stumbled into Kol Ami12 that day just to say a prayer for my father—I mean, what could’ve been more meant to be? So, the dots all seem to connect, sometimes, in a way that I think is with all of the good, as well as with all the things that have been horrible. It all seems to connect in a way that has sort of made my life meaningful, even with the things that have been terrible, and I think that’s really the full spectrum of a full life is that you have—maybe when you have the deepest of depths in despair and the heights of joy that—maybe having that full spectrum of experience is a really rich life. I tell myself that, anyway.

Other participants–many of whom had lost their faith or religious practices due to experiences of stigma and bigotry–found their way home to rediscovered spirituality or found new spiritualities through different impetuses. For example, Robb explains that in addition to learning about his own and other worldviews, healthy friendships allowed him

12 Kol Ami is a well-known LGBTQ-affirming Reform synagogue in Los Angeles. 45

to express what he believed about meaning and purpose in the world, in order to seek compassion and forgiveness, and chart a new way forward:

My friends were the immediate crutch I needed to reassure me, and to be there for me and not be alone. I had friends and I was loving my spiritual journey. I was opening up more and more. I’m 180 [degrees] of what [where] I started. I was close-minded, from a close-minded paradigm, from people that really didn’t know what spirituality was. They were just raised, ‘This is what you think and that’s the end of it. You don’t question because we just accept that by faith and we move on.’ The daily spiritual thing is that it is a continual discovery. It’s a continual opening up. It’s amazing and it’s so much more interesting than that journey, which was just kind of a dead-end, one-way street. I mean, it’s much more interesting to stay spiritually alive, and just keep asking and keep revising your scope.

In a world in which HIV-positive and gay people face legal inequality and social ostracization, chosen families–often friends who share similar experiences–can provide profound sources of community, in addition to creating a partnership system by which ideas, comfort, and a brand new kind of pastoral care can be exchanged. Robb, Ron, and

Marla especially cite the importance of friendships in their personal development, which

Jesús explains that his commitment to having friends of all kinds in all kinds of backgrounds and communities has contributed to his expansive worldview. Most participants identified the continuously unfolding and long-term nature of spiritual growth, as Robb summarizes: “Nobody knows any better than you do. It’s your journey... to start where you are and continue to grow your whole life.”

According to Ron, and likewise in the tradition of mystics and intellectuals across many religious traditions, the largest obstacle one faces in their spiritual journey towards growth and peace is one’s self. Ron explains the alienation he faced in America growing up poor in the Black ghetto, the alienation his expressed for his effeminate expressiveness in Roman Catholicism, but also the emphasis on beauty and achievement internal to the

gay community–and how these things contribute to a complicated relationship with ego.

Yet, despite the emotional, physical, institutional, and spiritual warfare that HIV-positive and queer people may bombarded with from the outside world, Ron nevertheless asserts the significance of the internal processes needed to advance his spiritual journey:

Once you remove that ego block… and everything comes tumbling down, it’s all on the table, so then, when you start to build, the table is the foundation. So, if you’re picking from what’s on the table and actually learning about everything that’s on the table, nothing is beneath you. Just stand on the same foundation with everything else, and you can open your mind and the experiences you can have are limitless, and an experience doesn’t have to be something tangible.

As queer theologians have asserted13, there was never anything wrong or evil about the participants. Rather than being flawed or disordered, they later discovered they were whole and good from the start. But for many, like Ron, it was a long and arduous process to begin this discovery. For Ron, it is also precisely new, healthy, loving, and equitable relationships which produced the good fruit he needed to partake on a healthy and open-minded spiritual journey:

I’ve been with my husband now for eleven years… but for the first three years, we were rocky and I was still trying to meet people, but I still had this sense of shame, and guilt and everything, so as I started to learn these things and started to try to apply some of the teachings [about Buddhist spirituality, selflessness, seeking understanding, etc.] to my life, I discovered that I started making more quality connections because I stopped looking for validation, or for attention, or for a lot of the things that we, as humans, look for.

Ron’s husband, however, continues to be the strongest force for healing, support, and flourishing in his life. He explains that through overcoming his ego: examining pain and trauma, practicing forgiveness and self-accountability, and seeking peace, Ron was

13 See: Shallenberger, 1998; Guest, 2006; Shore-Goss, 2013; Alpert et al., 2001; Tonstad, 2018; Cheng, 2011; Boisvert & Johnson, 2012; Knauss & Mendoza-Álvarez, 2019. 47

able to produce a whole and healthy love with his soulmate. He says that some relationships needed to end to arrive at this point.

At the same time, Marla recognizes the significance of relationships in the process of becoming more open-minded, connected to others, and compassionate in the world, even as a marginalized person who suffers in and because of her society. She explains:

I moved up here and I was scared of gay people. I grew up in Orange County where I didn’t know any gay people, so I’m an immersion-type person, so I thought, Okay, I’m going to do two things. I’m going to get rid of my fear of gay people, and I’m going to help this crisis—this horrific situation that’s going on—in one fell swoop, so I signed myself up for training to be a volunteer to help people with AIDS, and it was an organization called the ‘Shanti Project.’ They had two different programs, and I signed up for the emotional support, and it was a fifty-hour training over two weekends and I immersed myself, and by the end of the two weekends, I was no longer afraid of gay people… and literally three weeks later, I got tested and I got tested because I knew I was negative because I was a straight girl. Straight girls didn’t get—it didn’t happen to straight people. So, I tested positive and that was—that’s how I got tested and that’s my story.

Marla, and most of the other participants voiced that their lives played out in vastly different and unexpected ways. Marla, however, believes that without her experiences, she would have never undertaken the profound, deep spiritual journey which she has. It is this desire to answer the toughest questions of meaning, life, purpose, and mortality, that people living with HIV had to answer. For her, a clear and deeply painful turning point symbolizes this loss of what was to gain what is:

I think if I didn’t become HIV-positive, I would’ve taken a completely different journey. I was—well, this is kind of a weird story, but I was pregnant and I was supposed to deliver a baby. I was supposed to have [that] baby the month that I contracted HIV and my mother bullied me into getting an abortion. My mother’s a big bully. She bullied me into getting an abortion, and that was—the month that I was supposed to deliver that baby was the month that I contracted HIV, so that, to me, is a very clear fork in the road and I chose, on a subconscious level, the HIV road rather than the baby and the family road. So, yeah, my life would’ve been completely different had I had that child.

Jesús also explains in a sentiment that many of the survivors share that a significant catalyst for needing expanding spiritual meaning and purpose was that so many in his community–friends, lovers, acquaintances, neighbors, and rivals–were dying and suffering. A common experience among HIV-survivors is the memory of attending a funeral once a week. Another participant remembered “losing count” of the number of friends he lost after one hundred. So, it is salient that Jesús asked,

Why am I here and these people didn’t? [sic]. So, what I can tell you is I still feel... that I have to do good for others because I’m here, and I don’t have to, but it’s like part of me is like even if I suffer from chronic pain or whatever, I’m still here. I’m lucky to enjoy this view that I’m looking at. I’m lucky to be talking to you. I’m lucky.

It is thus in summation of many of these experiences that the participants and other people living with HIV have desired to cultivate new answers to questions of meaning, purpose, and transcendence. The next section will delve into a few of the answers, or rather–continually evolving answers that the participants gave for their spiritualities and cosmologies at the time of these interviews.

B) Cultivating New Spiritual Practices and Understandings

In the wake of personal and collective trauma, and in most cases, a rejection by both religious institutions and the doctrinal trappings of organized religions, participants sought better, more holistic, and less fundamentalist answers. This search for new answers manifested itself through a variety of experiences, practices, and understanding, ranging from the mystical to the contemplative to the profoundly agnostic. For example, one participant, Robb, explained a metaphysical experience he had while still a student at

Brigham Young University, which he affirms helped him grow and feel at peace in the

midst of uncertainty around his sexuality and his place in the world. As he acknowledges, spiritual and metaphysical experiences are so personal, so internal, that they are hard to articulate with exactness–and sometimes, the act of articulating them results in a truncating of the intrinsic meaning and sacredness of such an experience. Nonetheless,

Robb attempted to share a metaphysical, out-of-body experience he had while still in the difficult condition of being gay and different at Brigham Young University:

This is when I was in college in my dorm room and I was at my desk, and just no one was there. It was a quiet moment… But, just all of a sudden, I saw being in this beautiful, peaceful, interstellar nursery, so quiet and beautiful… and immediately was this rush that felt like a hug on my insides that just said—it didn’t say anything, but it was just like, ‘This is you. You are this everything. This is you. It’s all this. The stars just becoming what they are, and you’re it, and you just feel that love. That’s what it is.’ That’s one of my most sacred experiences, and I hate putting it into words because it was mostly the feeling of love that I got and you cannibalize it for parts when you put it into words, but it did change me. It started to open me up some more. I was so conservative from all that conditioning that when I heard—when I felt that, it exploded my mind a little bit, like, ‘I don’t know anything.’ And out of chaos, anything’s possible.

For another participant, Jesús, spiritual practices and experiences certainly shaped and defined the way he understood the burden that came with being HIV-positive. But he does not profess or cite a single spiritual experience as an impetus for new revelation and contemplation, but rather a culmination of many spiritual experiences that clarified for him overtime what he refers to as a spiritual gift:

I had always felt certain kinds of energies and certain kinds of things that happen around me, and through all my life… but about—I would say, maybe, about six years ago or something like that, many things happened. I was just arriving home. I was at the entrance in the building, and suddenly, this guy that was just passing by, he just told me, ‘You know you’re a shaman, right?’ and I just smiled and I thanked him, but then, I went to the person who has been my acupuncturist healer—the whole thing and everything—and I told her what happened, and she asked me the same question; ‘Didn’t you know that?’ I think many times, we know

things, but it’s very different when you grab a word and you put it in yourself and you really do accept that responsibility and that concept of that. To be very honest with you, I have many times where I feel I forget my spiritual side because I get into the earthly things, (laughs) especially when you deal with chronic pain and things like that. Sometimes, it’s very difficult to stay connected all the time, if you want to call it that way, so I decided to really own it instead of running against it.

For Jesús, shamanism is a transgressive kind of spiritual liberation that allows him to return to the pre-Catholic pre-colonial spiritual practices of his ancestors, a kind of reclamation of ancient spirituality that is parallel to the reclamation of sacredness as a queer person, in spite of the messages of religion and culture, which may suggest differently. For Jesús, he can be a different kind of shaman: deviating from binaries and expectations or norms, because since he has a queer and HIV-positive identity he has already challenged some norms and may feel liberated to challenge others:

Usually shamans are about being a healer or a warrior and still, even in this concept, you still have to decide who are you, and in my case, I have always felt that I’m not exactly neither of those two exact terms, and that’s how life works. It’s not just sometimes one little thing. For me, I always have felt that I am a bridge, a person that makes connections in many different ways between people and other ways of thinking or other kinds of people, and I love doing that maybe because I like it, maybe because it is part of me in my DNA.

For Jesús, like for Ron, humility is a key spiritual virtue. Like Ron, but also because of his unique journey with chronic pain due to peripheral neuropathy, Jesús explains that a compassion for others and the abnegation of his own ego paradoxically empowered him and led to his healing. To Jesús, spiritual practice is more important than belief, though the two are inextricable:

I started to learn about transcendental meditation… Every day, I still always try to at least take a few minutes to have my own praying, if you want to call it that way, and be thankful for things, and have a candle, and just relax for a moment and be one with it—whatever “it” is. In many other religions… faith is a very important part of what they do, and in my

case, I think I do the opposite. I just like to recognize that [the presence] and I turn on a candle, I put some music, and I just kind of be with it. When I just start writing words, or poetry or whatever, and I don’t know where all these thinkings [sic] are coming from many times. I just write certain things… and then I go to people and I tell them, “You know something? I just have to tell you this,” and I just tell them things that I feel. I feel like if I can make them feel good for one second, that can create a wave of good things around, and for me, that’s very important. I do believe a lot that anything that you do is going to create a wave, one way or another.

While Jesús’s journey began from a desire to get into deeper touch with his inner spirituality considering experiences he had had with other humans, Marla’s reasoning was much more practically-focused. It was out of her commitment to agnosticism and practical knowledge that Marla was confronted by a series of spiritual encounters:

My thought was, If I’m going to die, I want to know where I’m going, so for the last thirty something years, I’ve been studying the afterlife. Not only did I not believe in God, but I had an aversion. So, the first thing I did, because I knew I was going to die, is I quit my job, I sold my car, and I sublet my apartment and I went to Israel, and... I went into a kibbutz to be a volunteer and they tested—they were testing for AIDS, and I told them I had AIDS and they kicked me off the kibbutz.

After the abrupt and unexpected roadblock on her journey, Marla continued to travel in Israel, Egypt, and the Middle East. It was not in the Holy Land, but back home where she had her first mystical experience. She says that in 1988, only four months after her diagnosis as HIV-positive she “heard a whisper in my ear, which I believe is my guardian angel or another being or something—whispered in my ear, ‘This is not going to kill you,’ so I knew, on some level, that I wasn’t going to die from this.”

Marla, who before her inexplicable spiritual experiences, said that as she began to become comfortable with her spirituality, she decided to write novels exploring the afterlife, and is currently in the process of having her latest work published. In the years since first recognizing a spiritual presence in her life, Marla said

I tied it all together and I got a really close connection with God and the ascended masters, and I’m really sensitive, and so, I do a lot of communicating with beings and I just—I got real spiritual and I feel comfortable with that now; comfortable enough to write a novel about it and write books about it.

Marla explained the logical wrestles she had with making sense of spiritual experiences:

I think that it was when I realized my own intuitive gift and I realized that there was an ethereal world filled with angels, and ascended masters, and spirits and that I could communicate with them and they could communicate with me...I would try to intellectualize my way out of it. It would be like—I would feel a hand on me and I’d think, ‘Oh, the window’s open. It was just the wind,’ or I would think of something, and then, five minutes later, it would happen and I’d think, Oh, that was just a coincidence, or I’d be thinking about somebody, and two minutes later, the phone would ring and it would be them, but again, ‘Oh, that’s a coincidence,’—stuff like that. That kind of stuff would happen or I would just intuitively know something, and pretty soon, I started taking that in and knowing it, and you can’t know those things and experience those things without knowing that there’s something else going on that we can’t see, so with that knowledge, I was able to accept that there was something else there, and it wasn’t just what I knew and what I felt.

Marla began to read, attend lectures, go to movies, and consume as much information about the afterlife, about spirits, and about different ways of interpreting divine presence as she could. Before this, she never reported any form of spirituality. In her research and spiritual encounters, Marla developed hypotheses about what the afterlife–what originally motivated her study–is really like. Though for her, this is no longer the most important thing to seek. Rather, this is about how to be the most loving and compassionate being on earth and in the afterlife:

And so, my view of the afterlife is basically non-secular. I don’t go with any religion. It’s just what I pick up through everything that I’ve gotten my hands on and everything I’ve experienced, and no religion-based—of no type of religion or culture, and my view of the afterlife is that everybody goes there—everybody’s spirit goes there and their soul. They go there and there’s no judge. There’s no, ‘You were bad. You were good. This is what you do for the rest of eternity.’ It’s our own path, our own— our soul is ours, and we go to the afterlife and we judge ourselves. If we 53

did a good job, then we stroke ourselves. If we did a bad job, then we go, ‘Oh, no. Well, maybe next time, I’ll do a better job.’

Most significant to this theory is the concept of reconciliation in life and in death.

Surely this concept of reconciliation and healing is of especial significance to those both who have been marginalized and deal with illness and chronic pain:

I think that after we die, we can come back here and work with the living to heal ourselves and them in ways that they might not even know, and I think that there’s people on the other side working with us every day here that we don’t even know about. Well, some of us do, but not everybody does. This life was so hard. (laughs) I’m not sure I want to do it again, honestly. (laughs).

In summation, it was through a combination of experiences of the heart and the head that led many of the participants toward cultivating a deeper understanding of what others have speculated about religion, meaning, and the interconnectedness of life–in order to synthesize a track of personal emotional healing with the desire to alleviate pain, trauma, and discord for others and the earth itself. It is an emotionally arduous journey.

Yet, despite this, most viewed their HIV diagnoses and the years of wrestling and uncertainty that followed as a catalyst toward expansive worldviews. This struggle afforded many with greater depths of understanding and compassion.

V. Collective HIV Trauma

The HIV-positive community has been subject to collective stigma, violence, and abuse. This has ranged from social ostracization, to the apathetic response of pharmaceutical companies in offering accessible antiviral drugs, to popular religious mythos of condemnation and apocalypse. These latter religious constructions around condemning AIDS represented a gaslighting experience of double victimization. Often, 54

the religious establishment showed survivors little compassion for their human suffering and instead blamed them for their own situation as gay people or for being

“promiscuous”.

First the collective memories of trauma will be explained, and then individual narratives of trauma will be explored in the following section, VI. One theme common to nearly each interview was the notion that the inaction of the US government in the face of

AIDS represents a kind of collective culpability with collective victims–a sin that is yet to be reconciled. Michael said that the most profound source of hate toward the HIV- positive and gay community came from religious voices, particularly Christian leadership in America, though in other places it is worth noting that a majority religion, such as

Islam in northern and central Africa, was the religious community from which the majority of condemning rhetoric came (e.g., as seen in the work of Balogun, 2010).

Michael explains that HIV/AIDS only seemed like a real concern to the government once it reached “mainstream” populations:

The White House was... at best, indifferent. And I remember once seeing something in a news broadcast that, ‘Well, maybe AIDS might spread to the mainstream population. Maybe now it’s time to pay attention,’ and I’m like, ‘Maybe? Now? Who are we? Who are we? Who are me and my friends? Why is it only now that it’s spreading to, maybe, straight people that it’s time to pay attention?’ Also, and this is something that, I mean, I still have a lot of anger in me about it, did you ever hear of Legionnaires’ disease? I don’t remember where it was, but it was, like, a half a dozen or maybe ten straight people who came down with this disease and it was everywhere on the cover of every paper and every magazine! I mean, it was the hugest news imaginable—this disease that struck about ten people! And AIDS was now—I mean, tens of thousands of people were dying and didn’t get that kind of attention, and clearly, because it wasn’t happening to straight people who had little families in small towns. It was happening to people who were—who could be marginalized, who could be dismissed, who were just expendable.

This incident of Legionnaires’ disease revealed this observable dichotomy–the cultural conditions by which religious mythologies and moral codes were so manipulated to justify apathy and hated of “different” groups, while the mainstream community could face much less globally consequential illnesses and arouse sympathy and compassion.

He–and other interviewees–noted a developing awareness that, if they did not “act up,” then nobody else would act on their behalf. Later, as many historians indeed have,

Michael compares this complicity of the American people during the HIV/AIDS epidemic with the inaction of non-Jewish bystanders during the Shoah, which was faced by Michael’s parents. For Michael, participating in corporate protests, acts of civil disobedience, and fellowship with ACT UP became a spiritual practice of protest, even before he was diagnosed as HIV-positive:

That’s what was the source of my activism, at least, was I decided that it was a matter of life and death to put AIDS in the faces of people who didn’t want to know about it, to make noise, and to never shut up. And I remember when I started showing up for demonstrations and things like that, that many of the people that were there at those demonstrations—I mean, I could see on their faces that this was—it was too late for them. So many of those people were so sick that it was obvious that it was too late for them. They were doing this for somebody else. So, I don’t know how to describe the combination of anger, outrage, upset, sadness, and inspiration. It’s very, very hard to describe that time, but I still—I can never forgive the religious leaders and the government leaders who twiddled their thumbs and did nothing while my entire community died.

Because of the vitriol, hatred, and ignorance of those in power–who happened to generally be WASP Christians–Michael, and many others interviewed have understandable anger at the Christian faith and the rhetoric of harm many of its leaders spread regarding HIV and queer people. Christian people, the Christian religion, and even talk of Jesus have been so polluted in the mind of many survivors, that they are the cause of trauma, pain, and distress:

Most of the hate that I have had pointed at me, religious-based hate, has come from people who call themselves Christian...this kind of hate in America, anyway, expressed in the name of Jesus, and that, to me, is sickening. And I have to say that to this day, there’s a lot of things that haven’t changed in that respect, but a lot of that fueled—and the coining of the expression ‘family values’, which, of course, meant—that was code language for hating people who didn’t live the way that they liked, the way they did; people who were gay or lesbian. ‘Family values’ was language that expressed hate for LGBT folks and this whole idea of AIDS being some kind of divine retribution punishment from God, and even at the time that then-president Ronald Reagan—he didn’t mention the word ‘AIDS’ for years, and when he did, it was in the context of, ‘This is something that people could avoid by living a moral lifestyle,’ so I not only—I mean, I had a lot of reasons for not, at that time, having any religious or spiritual activity in my own life because I only witnessed so much hate, so many expressions of hate coming from religions communities.

Notably, all three Jewish participants interviewed for this archive as of April

2020, (3/9 participants were Jewish, including one convert), had all maintained, developed, or rediscovered some kind of Jewish identity. On the other hand, out of the seven participants who were raised Christian, only the two were still Christian-identifying

(Metropolitan Community Church and United Methodist; one had converted to Judaism).

This is probably due to the extensive stigma and bigotry inordinately associated with

Christian faiths in America against HIV and homosexuality. About this, a Waco, Texas pastor, the Reverend Charley14, who is not HIV-positive, but offers pastoral care to many

HIV-positive survivors at his parish through support groups and a food pantry, voiced profound hurt and disgust at the way the Christian gospel has been used to justify negligence, violence, and apathy by those in power. Due to this, Charley offers a

14 Charley Garrison, interview by Kyle Desrosiers, October 29, 2019, in Waco, Texas, transcript, Baylor University Institute for Oral History, Waco.

compassionate Christian response to those who can no longer trust Christianity, or any religious tradition because of the harm it caused them and those they love:

All we knew was our friends were dying, and so, there was a lot of questioning, and certainly, when you’re harangued by religious fundamentalists who are saying, ‘It’s because God is killing you and for good reason, ‘yes, there will be people who abandon religion, and I can understand why that would be the case. That’s still the case today, not necessarily because of HIV, but there are still religious fundamentalists who oppress the LGBT community and because of that oppression, they walk away from any form of organized—especially Christian—religion, and all I can say is, ‘I understand.’

Other interviewees, such as Robb, who came out and came of age in the early

1980s, explain that they never knew a time in which they could enjoy dating, sex, and relationships without a climate of fear, death, and suffering. He said he never knew a time without HIV as a looming threat to the gay community. This particular kind of apocalyptic fear is a trend that is present in the interviews with the survivors who are currently in their 50s, 60s, and 70s, who, in contrast to the younger generation, lived without any real hope of the epidemic getting better for two entire decades:

So, I was about your age when I came out and—let’s see. That was early eighties, so AIDS was just starting to hit the news and people were scared, and I grew up—I did not know a time when we weren’t terrified of AIDS, and so, I immediately knew that it was dangerous, sex was dangerous, and that you had to protect yourself, and it was not to be messed with or trifled with. You were very careful [with sexual intercourse] and respectful of yourself and others.

Yet, in this impossible climate of fear, love persisted. Gays and lesbians joined

ACT UP and advocated, held weddings–in the eyes of God and not the state, and attended funeral after funeral to honor the deceased among them. Romance persisted, soul mates nonetheless found each other, and built love and life. But, as many interviewees explained, gay relationships came with many challenges heterosexuals never

had to confront. Robb remembers falling in love with his first partner and eventually moving in together. Because of the inherited shame and fear, his partner felt he needed to keep his HIV-status a secret:

He didn’t tell me he had AIDS, but he was also very protective about what we did sexually... I remember when he finally told me when he couldn’t hide it anymore, how he just collapsed on the floor just riddled with shame, and guilt, and the horror of it all, and the fear that I would leave... We went through a marriage ceremony between friends, but, of course, it wasn’t legal. It was just something we did that we wanted to do with each other. And then, he died.

Another participant, Jesús, who also comes from the older generation of survivors included in this project, remembers coming to the United States from Mexico, with little experience of any connection to the gay community, only to see it soon decimated. He remembers, “It was almost part of my welcoming committee to this country.” Jesús remarked on his confusion and periodic guilt in having survived the epidemic–while so many others did not:

‘How is it that you survived, and all these people didn’t?’ We didn’t, period. So, every day until 1996 or 1998, almost until 2000 when they could tell if medicines was better and everything, the reality is that we were still thinking, I might die tomorrow. People were getting sick of pneumonia, or some cancers, or this and that and die in a few days or weeks, sometimes, and I didn’t took [sic] medications for fifteen years.

Jesús’s sentiment that survivors did not really outlast the epidemic unscathed was echoed by Marla, who before she was diagnosed or even had a chance to educate herself on all the intricacies of evolving HIV information (as she later did), immediately noticed to horrors of the imminent plague, upon arrival in San Francisco as a young woman in

1986:

I was watching all of these men around me with purple swatches on their skin getting skinny, and then, you just didn’t see them anymore, and it wasn’t one or two people. It was, like, literally everybody. The obituaries

went from one or two pages of old people to pages, and pages, and pages, and pages of twenty-somethings, and thirty-somethings, and forty- somethings of dead people. Baristas, and flower people, and dancers, and librarians, and everybody—the population was thinning out.

And so, while society discriminated against LGBTQ+ people and those living with HIV, the HIV virus itself did not discriminate against whom it could affect: young and old, rich and poor, Black and white, all segments of (largely queer) society who were sex-having people, were at risk of contraction. It was statistically mostly gay and bisexual men, but these were people from all parts of society.

Rejection by outside society was harmful, yet intellectually understandable. Even more perplexing, HIV-positive people were subject to prejudice, xenophobia, and exclusion by members of their own communities (e.g., also seen in the work of

Courtenay–Quirk et al., 2006). This was true within the larger gay community, and also in the case of Marla, who experienced the virus in a unique way because of her gender identity. She is a woman, and reports a lack of representation and resources for HIV- positive women to this day. It is important to remember the nuances faced by HIV survivors of all genders. That heterosexual women are affected by HIV does not undermine the narratives of gay, bisexual, and queer men affected by the illness. Rather, it contributes to the multifaced discussion of mechanisms of marginalization. For Marla, being a woman was a significant factor in how her HIV status dictated others’ responses to her:

Rejection was every day of my life. I still get rejected, believe it or not. Every time I got asked out, and when I was twenty-four—I mean, when you’re twenty-four, and single and pretty, I mean, you get asked out. I got asked out a couple times a day. I don’t mean to sound conceited, but I was really pretty and very social and out there, and I got asked out a lot, and every time I got asked out, that’s how many times I got rejected. And so, even now, with all that information out there and the medication, and its controlled, and even now—so, back then in the eighties and the nineties 60

when nobody knew anything about it and there was so much fear, then I could understand, but now I’m like, ‘Dude, Google something!’, but people are still scared. They’re still scared. So, the rejection came right away, and it comes, and it’s been coming, and it’s been there every day of my life for thirty-one years. —I’m on antidepressants. I try shutting myself off from everything to—I don’t date. I haven’t dated for—I just don’t date. I can’t take the constant rejection. I just stopped dating.

In addition to rejection by potential romantic partners, HIV survivors like Marla have faced rejection and aggression by others in their communities, which according to

Marla, has not really improved with time–despite notable advances in information and technology. She says that her interactions with people often still include moralizing and judgement, whether conscious or unconscious. She says that it still always hurts:

I would tell people I was positive—HIV-positive—or I had AIDS, they would say to me, ‘Oh, did you have a transfusion?’ and I’d say, ‘No,’ and they’d say, ‘Oh. Oh. Well, oh, okay.’ Like, it was okay if I had a transfusion, but if I didn’t, then I’m either a whore, a junky, or a slut, you know what I mean? So, there was stigma there, but I guess if I were a gay man, then it would be the same thing as saying, ‘Oh. Well, you deserve it because you’re gay.’ There’s stigma all over the place, but if you get it through a transfusion, then, ‘Oh, I’m so sorry. That’s just a shame. I’m so sorry for you and your family.’ And when people would say to me, ‘Oh, how’d you get it?’ It’s like—yeah. I still get that question, and then I just—you know what I say? I say, ‘I got it from having sex with a boyfriend,’ and I say, ‘I didn’t get it from having sex with too many men. I got it from having sex with the wrong man.’ So, I work a lot on destigmatizing my own disease. (laughs) It’s ridiculous.

The stigma fostered by strangers was just as pervasive and frequent as that by potential mates and community group members. Jesús remembers the early years when things were the most difficult:

Just think, in those ten years, thinking every day, I might die tomorrow, and also, again, include that people didn’t want to touch you. People didn’t even want to go to the same bathroom not to be with you. So, what it is to live that way for years, and years, and years—I mean, really, many of us—again, I put myself in the group—of course we have mental issues in some way. It’s not easy to do that. Anything that has a stigma—and sadly, the stigma hasn’t gone away yet.

A final source of trauma and pain common to many was that of not belonging, of being the outsider and stranger. Because of religion and culture–many of the participants were excluded or ostracized in their faith communities from an early age because of their sexual orientation or perceived transgression from gender norms. At least one participant,

Robb, shared that he was forced by Brigham Young University to endure gay reparative

“therapy”–an unspeakably cruel practice seen to this day in some Protestant, Catholic,

Jehovah’s Witness, Latter-day Saints, and other faith communities.

One participant, Michael, reflected on being an outsider as a gay person, a Jew, and a “bad student” as a child. Being an outsider was not his choice then, and it was not his choice to be marked as “transgressive” for being HIV-positive. His health forced him to reprioritize and abandon some of his earliest dreams of being successful as a director or producer in Hollywood–and struggle for survival. He once had a dream of movies and films–a source of escapism and a location of spiritual transcendence, and for years it was in cinemas that Michael found a bit of reprieve:

I went to the movies. That’s where I hid, really. It was my place of escapism. It’s where I was fascinated. It took me—transported me into different worlds and dreams and fantasies, and that was my love. I felt so apart and I was bullied. I practically counted the days until I could graduate and leave this town… I remember my parents being called into the guidance counselor’s office at school because I had an IQ that was way, way up at the top of the range, but I was a terrible student—'Why is he such a terrible student when he’s so smart?’—and I couldn’t articulate then that, ‘It’s because I don’t want to be here. I’m afraid at school.’ The only place I felt really safe and happy was at the movies.

VI. Coping with Personal Trauma

The HIV-positive community has been and continues to be subject to societal stigma and institutional barriers to adequate social services. Unfortunately, the complexity of this multifaceted trauma is largely misunderstood by mainstream society.

The previous section addressed societal-level, collective experience among many of the participants–whose identities represented some overlaps and distinctions in terms of their reported experiences. In addition to larger-scale, more universal experiences, such as rejection and stigma, many participants also reported instances of personal trauma, whether in relation to their romantic partners, family members, or others in the HIV- positive community and gay community, who, in coping with their own horrors and trauma, contributed to the suffering of others. For some, this is a phenomenon whereby the crucible of tragedy instills in others anger and self-centeredness rather than an opening up of the compassionate mind.

One participant, Robb, shared a memory about how he became HIV-positive. He was unknowingly infected by someone else who intentionally spread the virus. The man who he later came to realize spread HIV to him, acted with incredible cruelty. One cannot begin to imagine how much pain he must have endured to desire to spread his suffering to others, as well. And so, it was just months after his partner died of HIV that Robb had this experience. He began to meet new sexual partners:

With the very first person I was with, I was very careful. We would get to an exciting point [in sexual intercourse] and he would act like he was going to do something, and I’d say, ‘No. Put a condom on,’ and then, we’d go back to kissing and getting excited, and I’d say, ‘Oh, you got to put the condom on,’ and then he acted like he put a condom on, and I thought everything was fine, but at the end of that session, he said, ‘I took you to the dark side.’ And so, I did not understand that. I just—I was in the

afterglow—didn’t even think about it until a couple weeks later when I went for testing, and then, they told me, Oh, you’re positive now.

Robb responded to this act of cruelty with compassion and forgiveness, which came gradually as he begin to internalize his new reality. He struggled to understand why another human could be so tormented that they do could inflict a similar fate on others:

I have no idea. I would like to know why. He was a beautiful, interesting man. I don’t know what inside him made him do that. I worry about how many other people whose lives he disturbed that way. I have no idea. I looked for him immediately—you know, ‘Why did you do this?’—and I could not find him. Passing through town on your mission of death? What the hell? (laughs) I thought I was going to die. I had just buried my partner.

For another participant, Ron, one of the greatest traumas linked to sexuality came from his first sexual experience–an incident in which he was raped as a child:

My first experience with a man was by force and I was nine, and so, that was a traumatic experience, and especially now, after living so much life, I realize that traumatic experiences are probably some of the things that shape us more so than anything else in our lives. I just sort of hid behind being a jock and being smart, and I figured as long as I presented that and not the other part, it’s going to be fine.

Ron also voiced that his relationship with his former partner–one that became tremendously unhealthy and emotional abuse–was based on dishonesty. This directly relates to both HIV-positive and LGBTQ+ experiences; research suggests of partner abuse and relational immaturity is symptomatic of societal marginalization and violence against the two communities, which have resulted in adults with poorer mental health outcomes than their more privileged heterosexual counterparts.15 Queer identities have been stigmatized for generations, and people in LGBTQ+ relationships have not been

15 Psychologist Alan Downs has devoted much of his career meeting the needs of patients who were gay men coping with the trauma instilled in them by society, institutions, and family. One phenomenon he reports is that whereby some respond to tragedy and marginalization by becoming meaner and doing more harm to others–instead of having more compassion. See the Velvet Rage by Downs, 2012. 64

given the same kinds of healthy encouragement and positive representation that heterosexual people are socialized to understand. The product of the collective trauma for being marginalized for queer identities and HIV-status may drive some to understandable, but tragic responses by which individuals choose to spread their suffering to others. Ron shared an episode from this life in the months immediately following his diagnosis, as he experienced this particular struggle:

I felt the responsibility to tell this person that I was dating, ‘Hey, I got a positive diagnosis,’ but I had to do it quickly. I was like, ‘What if I give it to him?’ So, I told him, and he sort of cut me off and I just thought of myself as shit… He died two years later, and the friends that introduced us told me that he was positive and he was never on medication, and they were very upset with him, but didn’t feel like it was their place to share that with me while he was alive. But, he didn’t take care of himself when he spiraled and didn’t take any medications, and they think that he was in a dark enough place to want to die and want to not do what he had done, apparently, to not just me, but other people, and so, that—learning that information two years after the diagnosis, after I had thought that I was going to die, and remembering all of this and how I processed the information—that was tough. Here I was walking around and I was already processing my own anger issues, and here I am now, just learning that I didn’t affect someone else’s life, their life affected mine, and this asshole cut me off because he knew what he had done and he let me walk around thinking that I had done something to someone, and it was that same sense of guilt that you get from religion where you walk around thinking you’ve done something wrong to someone just by living.

Jesús, who was a Mexican national living in California in the 1990s, expressed the unique fears and challenges he had because of HIV and his American residency status:

When I became HIV-positive, mijo, I didn’t have papers here. So, there was the amnesty happening in this country and they were doing the blood test to see if it will affect you for the amnesty, so I knew already I was HIV-positive and I will be thrown out of this country, so that was the first time ever that I had to come out to someone about me being HIV, and once again, I’m very thankful to… this friend—he did his blood test for me because in those days HIV-positive people were not allowed to immigrate to this country.

VII. Identity-Related Experiences

In addition to unique challenges that are faced by many PLWH because of their health status, as well as legal, social, and religious stigma, many participants also explained the unique challenges they also faced because of their other identities, related to sexual orientation, socioeconomic status, gender identity, and ethnicity/race.

One participant, Michael, a white Jewish American, is the child of Eastern

European immigrants who were Holocaust survivors. According to Michael, the collective memory of the Holocaust shared by his parents and many elder members of their Conservative synagogue in York, Pennsylvania, his faith and spirituality is inseparable from this context of overcoming this trauma and history:

My parents were both Holocaust survivors. It was something that I wish they had spoken more about. I mean, these were people who were persecuted for their religion, whose families were murdered because of their religion. Today, looking back as an adult, I wish that I knew more of the details of their experiences. I know some of the facts of those experiences, but not all of the details, and I wonder if, maybe, part of it was they didn’t want their nightmares to be their children’s nightmares. So, there was certainly stress placed on the idea that the Holocaust and what they experienced should never be forgotten, but at the same time, the details weren’t all revealed, and that was a different time as well. It was a time when people didn’t talk so much about their personal experiences or their—people didn’t talk about their emotions, people didn’t go to therapy; all of those kinds of things. We have advanced so dramatically in the last few decades in areas of emotional health and being able to discuss those kind of things, but it informed a lot of my religious experience that as a child going to synagogue in a small town in Pennsylvania, a lot of the people that were my parents’ friends—even my Hebrew school teacher, a woman named Mrs. Ronski—were all people who had come to America as refugees.

Later in the paper, particularly in the section on the national AIDS Quilt (section

VIII, pg. 70), Michael will explain how his conservative immigrant parents eventually embraced his gay sexuality, his partner, and HIV status, because their community had endured terrible persecution and genocide because of their identities. Through the 66

experiences they had with tragedy, they were able to better understand the need to love

their son and his partner in the midst of their own tragedy. Indeed, others have compared

the AIDS crisis to the legacy of Holocaust inherited by Jewish Americans.16 Michael will

continue this explanation on page 93.

Another participant, Marla, discusses her unique experiences as a woman living in

the HIV/AIDS crisis, and the lack of understanding and visibility women with HIV had.

She was integrated into mainstream working class heterosexual life growing up in

southern California, and was diagnosed with HIV after having only had one sexual

partner, her boyfriend, who later died. She explains that though she did not face stigma

for being gay, her HIV-status put her sexuality on display for all people and she was

judged and marginalized for it, but also couldn’t access social services, such as STI and

HIV testing, which were largely reserved for gay men, sex workers, and drug users in

those days.

Oh, yeah, because what happened is the men—they’d shoot up or they’d have sex with other men, and then, when they have sex with women, it’s basically like an HIV injection for the women, so there’s women walking around with HIV that don’t know it because the doctors weren’t testing them unless they were drug users or prostitutes, and then, they get a little pneumonia and they check themselves into the hospital, and the doctors go, ‘Oh, guess what? You’ve got pneumocystis. You don’t check out of the hospital,’ and then they die, and that’s how the women were finding out. The men were finding out because they were getting the purple swatches—the cancer—and then, that’s how they were finding out, but the women—that’s a very common—my story is very common. Nobody knew. That’s why it was so devastating, because—and the thing was, there was a whole movement of women being—there’s always a movement for something, and the women were pissed off because they’re like, ‘Test us,’ and the doctors were like, ‘No. They’re expensive tests. We’re not going to test you unless you’re promiscuous, or a prostitute, or you’re shooting up drugs,’ and the women—the doctors were ignorant, and the women

16 See for example, the Normal Heart by Larry Kramer (1985).

were like, ‘Look! We’re dying in the hospital with pneumocystis. We’re checking in and we’re not checking out.’

Jesús, a Mexican American participant, explains the nuances of being Latino and gay, and growing up in a more conservative country, and confronting the reality of being a sexual “other” in a place with relatively rigid gender and sexuality norms:

Many of my uncles are like the stereotypes of the macho Mexican person that follows Christianity and Catholicism a lot and everything else is bad or wrong….When you don’t have anyone positive [a gay role model] to look at and then you feel like, “If this is who I am, then I am bad.”

But in America, Jesús found support and hope in his Latino gay friends. He joined gay men’s chorus and was one of the founders of a group called ÁGUILAS, a community group for queer Latinos. He says, that despite the lack of visibility or positive representations of gay people in his Mexican culture–and also in the US culture in those days–he misses one key value from his culture:

In other countries, the concept of family and group is higher than here. Here, it’s about the individual, and it’s a great thing. I learned a lot from that, coming from a society that family, sometimes, is too much, but it should not be one or the other. It should be a combination of both. And right now, again, this community of people growing older with HIV and survivors—they’re feeling left out.

If the shadow side to a community group-oriented culture revolving around

“family” is that gays, women, trans people, and other outsiders are neglected, then the shadow side to the individualistic western culture, is that there is a great emphasis on personal success and well-being, sometimes at the expense of others who are less useful or desired as friends, partners, and colleagues. This latter problem has been a challenged in the gay community, which has historically been obsessed with youth–but is also a problem in larger mainstream western culture.

Additionally, another participant explained the nuances of his Black identity in relation to being HIV-positive and gay–especially coming from a low-income Black community. He says this community prioritized rigid religion, because they have so little else that can be taken for granted in a society where they have had to work so hard to make ends meet, and deal with the daily uncertainty of negligence from the government, bad education systems, and a lack of institutions that their white and more affluent counterparts possess.17 He explains that his Black identity both alienated him from what he saw as heterosexist culture in his Black community, and also the white dominant culture. Because of these conditions, faith and religion became very complex in Ron’s struggle:

Especially because being black and being from the ghetto… where you’re poor and the only thing you have to hold onto is faith, and religion, and everything—they stick to religion because that’s the one thing that they do know, and so, when you don’t follow what they see as the word, or the book, or his way or anything like that, you’re looked down upon: ‘Why am I in such fear of something that is supposed to be love, and good, and guide you?’

Ron sees a link between the experience of Blackness in America and marginalization for being LGBTQ+ and HIV-positive. It this marginality that first taught him how to cope with a status quo stacked against him and those like him:

So, coming from a marginalized community before I even knew what gay was, or what it meant, or that I was gay, I can say that you question everything. You question everything because you don’t trust.

17 See: Johnson, M. (2010). The Tragic Vision of African American Religion. Palgrave Macmillan.

VIII. Dealing with Loss

Most participants in this project, and those in the world who live with chronic or life-threatening illness or among loved ones with these conditions, have to deal with loss and mortality. Because of the experiences of losing partners and friends, especially for

HIV-positive and gay people in the 1980s and 1990s, as well as the necessity of confronting their own mortality, most of the participants reported undergoing rigorous evaluation of their worldviews, spiritualities, and cosmologies, particularly with respect to how they understood, processed, and coped with death and suffering.

One example of a collective spiritual mourning endeavor was the AIDS Quilt.

The AIDS Quilt was an American project of pluralist, democratic mourning that brought the spiritual and memorial components of the HIV/AIDS crisis to the forefront to act as a subversive act of love, liberation, and mourning. It served to raise awareness, understanding, and support within the community outside the HIV/AIDS community and the gay community (Cleworth, 2013). The AIDS Quilt embodied a kind of strength that arose in the wake of loss and the ambivalence of American society and government. It was a communal endeavor, both a religiously pluralistic and uniquely democratic method of mourning, activism, and strivings for reconciliation–all rolled into one in the American secular sphere.

In the course of one interview with the participant Michael, the AIDS Quilt was a prominent element of his spiritual journey. He explains what the AIDS Quilt was, and what it meant at the time of its execution:

The AIDS Quilt was started in San Francisco. The quilt is like a—people create quilt panels three feet by six feet, which is about the size of a grave, with somebody’s name on it to commemorate the people that have died of AIDS and we wrote their name. Some people sew into these quilt panels personal effects and mementos or things that represent who that person 70

was, and these panels are all stitched together, and so, they could be laid out by the tens of thousands. The last time it was displayed in Washington, it stretched from the Washington Monument to the Lincoln Memorial. It’s almost incomprehensible how huge this thing was.

The size of the AIDS Quilt, and number of its panels serve as a visual reminder of the sheer volume of humans who suffered and died due to AIDS. According to Michael, it has not been displayed in its entirety since the 1990s, as it has now gotten too big to fit in one location, even the National Mall. Today, organizations, such as schools, order

“twelve by twelves” of panels to be displayed for occasions such as World AIDS Day.

The AIDS Quilt, contemplative, quiet, and with all laid bare, stands in contrast to other demonstrations, such as the ACTUP protests inside and outside of churches such as St.

Patrick’s in New York. Both serve different and necessary purposes. The AIDS Quilt had a strength that even those with hardened hearts could not ignore: these panels do not only represent somebody who died, but somebody who was loved. It was mostly in memorial of gay American men taken by the virus. It was at this Quilt that Michael experienced a profound moment of reconciliation with his father, as they both know they would be possibly confronting mortality–Michael had HIV and his father was aging:

And so, when that last display of the quilt occurred in Washington in 1996, my dad drove from Pennsylvania to meet me at the quilt. So many of my friends are represented on the quilt. I mean, I lost, during those years, everybody from the closest friends, acquaintances; I lost track. I lost over a hundred friends. When I went to the quilt as a volunteer, my dad drove from Pennsylvania to Washington to meet me there, which was about a hundred miles, and that was—to be there to meet me—I told him how important it was for me, but that he drove there to the quilt to meet me was such a beautiful expression of support and love.

Michael explained that he was “consumed with grief [and] so deeply depressed that I couldn’t even imagine that I’d ever be able to claw myself out of it.” He said that the words his father spoke to him at the AIDS Quilt changed his life: “Michael, you are

never going to get over this, but you must learn to live with it so that you can go on with your life.”

In the months and years that followed, Michael explained that his relationship with his father, who was a “very spiritual and religious man” grew stronger for the first time in years. This played a significant way in the role Michael made sense of the carnage around him due to AIDS and coped with collective trauma. He shared a letter from his father, 199618:

“My dear son, I want you to know that I’m thinking of you every minute of the day and night and I’m praying that in the near future, there will be a total cure for this unfortunate sickness that is snuffing out the life of so many young and talented people in our country and the entire world. Michael, please be strong and make every effort to overcome all the odds, and I always pray that you will reach an old age, and when I’m not here anymore, you’ll tell everybody, ‘My father told me that.’”

Ultimately, it was through the moving experiences Michael had at the AIDS

Quilt, and later in reconciling with his father, that he was able to begin figuring out how to “live again” after the epidemic. Others sought to find a way to learn and a new purpose in light of the carnage and suffering, and the cruelty of American society and politicians of the time. Some found meaning and purpose through service, vocation, activism, or other channels. Michael also explained that–in spite of the fear of Christians his treatment by Christians had inspired in him–he saw some displays of love, mourning, and solidarity in Los Angeles in the midst of those days:

A local church in Hollywood, the Hollywood United Methodist Church— to this day, they have a big, big red ribbon on their building that’s been there for years, but when the AIDS quilt was established in the eighties, that church set up quilting workshops to help people make panels for the quilt and, more than that, to help people cope with just irreconcilable grief. I mean, what they did for many people—I’m getting choked up even

18 From the words Michael shared in the audio interview, as transcribed by the Baylor Institute for Oral History. Quotes are used here to indicate that Michael spoke (read) these words during the interview. 72

thinking about it. What they did for so many people was so loving, and they were attacked by religious communities. They were attacked for reaching out to people who were grieving because of the losses from AIDS. They were attacked viciously because it was a church that reached out to people that didn’t fit in.

Another participant, the Reverend Charley, a pastor in the Metropolitan

Community Church, was so distressed by the AIDS crisis in his community that he found a calling in working to build a church that served the neglected, marginalized, and infirm.

He explained that his faith was built and strengthened upon the sorrow and pain of the

AIDS crisis. Charley explains the conditions prevalent in American churches of the day, and his denomination’s bold stance for a better story:

In general, the response was either dead silence or it was thought to be God’s punishment to the gay community because at that time, most of the people that we know who were dying or who were infected were gay men, and also, the prostitutes and drug users were—it was showing up there too. The MCC church had been around since 1968, and so, what, maybe about fifteen years or so before the actual—before HIV started showing up in the country, and I remember thinking that we believe within our guts that HIV was not a death sentence from God, but still, there was that thing of, ‘But what if? Why is this only happening to us?’ it seemed like. And so, HIV actually took a great toll on the MCC denomination, both within members of the church, as well as pastors. There are a great number of people who died in the early days of the epidemic. We became known as ‘The church with AIDS’. We were the church with AIDS, and we embraced that identity, believing that we are the body of Christ and that Christ had AIDS at that time.

To Charley, simplistic understandings of theology and scriptures were not enough to cope with the level of suffering and death the LGBTQ+ community was facing. To

Charley, the Christ mystery was everything but simple, and Christ “himself” was subversive to the status quo–just like Charley, a gay HIV-negative minister who represented a “church with AIDS.” After spending time in his hometown Baton Rouge as an ACT UP activist and working closely with gay and lesbian pastors in the MCC church,

Charley explained that a mentor of his, a lesbian minister-activist, first pointed out his 73

call to ministry. Charley was working with AIDS patients in a hospice, providing pastoral care already, so it only made sense to get formally ordained. Charley explained that his care for the sick and dying taught him more about faith, meaning, and purpose than theological tomes ever had. It was through pastoral care and service that he created a new meaning, in spite of the great tragedy and horror of losing hundreds of friends to the epidemic. Instead of fear, he chose compassion:

I remember… whenever I would go into the hospital, for instance, to visit somebody, at that time, you couldn’t just walk into the room. You had to gown up and you had to put masks and everything on, and that had to take place in a changing room before you actually went into the room, so you would go into that changing room, you’d put on the gown, you’d put on the masks and everything, and then, you would go into the patient’s room. The first time that I ever did that, I realized that it was nonsense. I was not going to do that to the patient. I just threw it off, took off the gown and everything in the room. I also did full-body massages for a lot of the HIV patients; people who had lost touch—literally lost touch—with other human beings. Touching someone like that was considered a risk. I say all of this to answer your question. How did that affect my faith? I basically told God, ‘If you’re going to kill me, take me down, because I’m not doing wrong by doing this.’

As some social conditions and medical advances have changed things and other status quos continue to persist, Charley has spent the last decades since focused on HIV ministry. To him, there is nothing more sacred than caring for those on the margins:

It instilled with me a stronger faith, I think, in a God who cared, and loved, and was on the side of the marginalized, and wanted us to do the same thing, so it really did inform my faith a lot. Also, spending time with people who were dying—I liked it. I was—I felt it to be a powerful experience, enough so that even now, I’m a hospice volunteer. You can’t spend time with somebody who’s facing their last days without also dealing with your faith in that, and more times than not, my faith was made stronger as I watched these people enter their last days, so it did have a strong impact on my faith.

Another participant, Michael, explains that a similar role was performed by his spiritual advisor, Rabbi Denise Eger of Los Angeles, and what her new take on faith community meant to him:

I mean, after having experienced so many expressions of hatred coming from communities of—quote, unquote—faith, to walk into a place that was so loving and welcoming, where there were so many other gay people—and when I say gay, I mean that all-inclusively LGBTQ, all the alphabet soup—and the rabbi, Denise Eger spoke so eloquently about things that were relevant for me, and what she did and still does, by the way—I still go to Kol Ami. I’ve been a member now there for over twenty years—what she still does is she makes everything relevant. All of her sermons, all of her—when we talk, when we pray or we read from the Torah, she explains what these things mean in a way that is relevant to my life, in a way that is relevant to our times, and in a way that sort of, I think, inspires me to consider, ‘What is my purpose? What am I called to do? What is my role in the world?’ which also is, of course, providing answers to all of those questions about, ‘Why am I still here?’

Rabbi Eger hosts a monthly Shabbat lunch with HIV-positive community members as a kind of support group. Michael identifies this as the first faith-based HIV support group in the country. Michael says that Rabbi Eger embodies what a faith leader should, because she is in the world, living, serving, and struggling alongside people. For this, he trusts her, and is able to pick up again the pieces of his broken faith:

She was an activist in the HIV community like me since the beginning, so she helps that I’m a member of a synagogue where there’s a rabbi who really understands my experience because she shares a lot of it. She did hospital visits, and she did funerals for many, many, many people during the worst of those AIDS years, so I know that when I—I mean, intuitively, that she gets it. She understands it completely. I feel supported in that by my synagogue that sort of embraces those kind of values of social awareness, activism, really using your voice, being called to make the world a more just place. That is at the core of my Jewishness.

Ron, a participant who does not identify as religious, also finds meaning and purpose in activism and the service of others. Activism and service were recurring activities by which participants coped with loss and tragedy. For Ron, the basis of his

ethical code is a focus on making the present and future better, not dwelling on the loss and suffering of a past that cannot be changed. Ron sits on the board of an organization called Team Friendly DFW, an organization in the Dallas-Ft. Worth area with the mission of “kill[ing] the stigma by educating people regarding how to talk about HIV, to actually help people process the information that they probably already possess—or, at least, expand on the information that they possess.

According to Ron, the group is sex-positive, all-inclusive, and non- discriminatory, not a “gay men only group.” He explains that this group is antithetical to the way he saw organizations and institutions discuss health and sexuality when he was growing up. Shame and stigma do not work to save lives, he said, but instead, an abundance of information and non-judgmental care do. He says he was once more self- centered, and also depressed, before contracting HIV, and eventually forming the healthy relationships and eventual marriage that he now has. He explained that he discovered a vocation for building supportive communities, because of the significant role his support system played in his life:

The things that were most important to me at the time were the things that made me feel a sense of family or belonging, and that was performing. I was a dancer. I performed, I went on tour with the drum core, and I taught and performed in winter guard, and those were things that were seriously important to me, and so, my experiences of being able to go to different cities and meet different people from different regions of the world—those things were really important to me because those people accepted me for me because we had something in common, and there were no expectations placed on me other than to take care of my business in rehearsals and on the floor, and then we can all go and be the same tragic messes that we wanted to be together at the end of the day, so that was great for me.

Another participant, Marla, said the most important part of her religion is the community, not the theology and doctrines. She said that she knows God and spirituality, partly through her service and community:

Judaism is about service and community, not doctrines. I do not worship anymore. I am involved in the community, so, in other words—in fact, just this morning, I signed up for my shift to volunteer at the services, so I’m going to be greeting and handing out prayer books for all four shifts for the holiday services coming up, and I also have volunteer job—I also visit the sick once a month. I visit a woman named Donna. I go and visit her. I’m very involved in the community and that, to me, means more to me than worship. I adore God and my worship is by being good to people, and volunteering, and being in the community at the synagogue.

Jesús, who lives with chronic pain in addition to HIV, explains that he also finds meaning working for and alongside others for the common good:

I have tried socially and everything to really focus in the areas of other people, HIV long-term survivors, and people growing older with HIV. By now, I am the founder of the HIV long-term survivors’ group in social media. It’s the largest group around the world. I just came back from the International Pain Summit in Los Angeles. I work in a local level, national level, and international level to try to keep motivating, and giving information, pass information, and to—at least that people can acknowledge the presence of this community of survivors that—and I’m one of them, but I’m considered, once again, one of the lucky ones that somehow is still able to travel, to go around, to work around. There’s so many people isolated and lonely in their homes that have kind of given up. There have been more suicides, and even through social media, we’ve been able to stop a few.

Jesús explains he found purpose in activism and in his independent spirituality, though not in a traditional faith community. He finds a calling, as a marginalized person himself, in “speaking for so many people that have no chance to speak up because they’re very shy or very sick already to really speak up.

Lastly, he explains that he connects this very practical service to the transcendental reality he has discovered for himself. He views his relationships with

others as a flow and exchange of energy, whether it is positive or negative. Jesús explains that he has been able to find healing and rebuild a new sense of meaning through focusing on generating positive energy the best way he can:

It’s almost like if I just feel like I can send it, I can. I really can share it, and especially if I can feel—if I had those people sick around me or things like that, so that has been very important even in the International Pain Summit that everybody in the building was people with pain. It’s like even if I can make someone smile—or I’m very touchy-feely with a hug or even a just brief touch—like one of the ladies—she was like, ‘Oh, I’m taking all your energy,’ and I said, ‘No, I have enough. Don’t worry,’ because she was hugging me tightly.

IX. Questions about Reconciliation

Each participant had distinct relationships with peace-making, reconciliation, and forgiveness–or the understandable inability to do so. These concepts demand vocabulary not unlike those found in many religious traditions.

Marla answered that because of facing rejection her entire life as an HIV-positive woman, and other challenges associated with HIV, she struggles to be patient when she faces daily reminders of her difference. She said she has found peace with the man who spread HIV to her because he is in the afterlife already. However, forgiving acts of inhumanity every day is much more difficult. She has not yet forgiven the society that will not embrace her:

Every day, I’m working on learning to be patient with the people who are rejecting me today. It’s a daily effort. I just get so upset because there’s just too much information out there and so many levels. First of all, it’s impossible for me to give it to them. It just is, even without protection, and I’m super smart. I am. I don’t mean to brag, but I’m a very smart individual and I—in a way, it’s kind of good because the people because the people that are afraid—and I’m also fearless, by the way, so I— … It’s a daily struggle and I look forward to the day when I have compassion for these people, but today, I don’t, I hate to say. I wish I did.

Another participant, Robb, as a gay man, has directed his anger toward a different entity, the United States government. As Michael explained earlier, the incident with

Legionnaire’s disease19 showed that the United States government prioritized certain lives more than others; and did little to care for its significant gay minority, because they were viewed as “moral” outcasts:

I have a lot of anger and resentment, but not to the person who might’ve given it to me. My anger is more toward the government at the time, who did nothing because they treated it as a moral crisis rather than—as a moral issue rather than as a health crisis. I will never forgive that.

Ron, who views himself as a contemplative person, approaches the question of peace-making and reconciliation from an internal perspective–much in alignment with the Buddhist-Daoist tradition he now identifies with:

People ask me what I would do different, and I say, ‘Nothing.’ I can’t change it and I can’t allow myself to live in a ‘what if’ because, again, that question is rooted right under the idea of shame and guilt, as if I somehow have to think about what I’d do better. My status is a part of who I am. I am just going to move forward and I’m going to live in right now, forward. I can learn from my past mistakes. I can’t change the lesson… [but] I’m grateful to have gone through the things that I went through as a result of my diagnosis because I feel like without it, and without the trauma that was attached to me guilting myself, and thinking that I was going to die, and thinking that I somehow had wronged God and everything, I would have never taken the time—I don’t—I can’t say ‘never’, but I don’t think I would’ve gotten to the point where I am now, where I took the time to dig in and figure me out, figure out things that I’ve never experienced, figure out how to relate to other people who may not look like me, live the way I do, place emphasis on the same things that I do, and especially when it comes to religion.

Participants were also asked how they have found a meaningful contemporary life and continue to redefine meaning and purpose as long-term HIV survivors. Ron found a daily renewal in the peace he has in his relationship with his husband. Particularly he

19 See: Section V., Collective Spiritual Trauma. 79

connects the way in which he manages being HIV-positive and his husband manages being a recovering addict:

So, it’s really fucking awesome to me—like, super awesome—that when I’m having a bad day, I can call him and be like, ‘Husband, just tell me it’s going to be okay because right now, I’m just like, fuck everything. Fuck you. Fuck him. Fuck her. Fuck that. Fuck that dog. Fuck that leaf that’s blowing across right now.’ That’s how I get sometimes. I just need to be grounded, and if we’re close enough to each other, it’s like, ‘Hey, meet me at Starbucks,’ or we’ll meet here in the park, or we’ll meet somewhere and just sit, and I love that. I love that. So, yeah.

Michael expressed the difficulty of aging with HIV, and the way in which stigma and illness because of the virus have stunted his big career aspirations, and the way he once envisioned his life turning out:

A lot of my life has been focused on staying above the ground, and I think that I sometimes resent that I didn’t get to focus on the career that I dreamed of. Especially in the earlier days, I had to focus on just staying employed at places where there was a group health insurance so that I could get medical care, so I didn’t have the same opportunities to take career risks that I might have wished I did. But, I mean, you never know what twists and turns your life is going to take. I didn’t get the chance to really do what I hoped I would do with my life professionally, but my priorities changed along the way.

X. Hopes and Anxieties about

the Future of HIV/AIDS

The final theme surveyed was participants’ perspectives on the future of the collective society of America and the world–particularly in relation to HIV/AIDS.

Participants gave varied responses that ranged from concerns about HIV care for the most marginalized groups: sex workers, the homeless, and drug users–to worries about how citizens navigate political conversations and the future of the environment.

Robb, almost sixty, was one of the older participants, and remembers the state of the gay community before, during, and after the HIV/AIDS epidemic:

Our culture lost something really beautiful. (becomes emotional) We really lost a sense of community, because that pain really knit us together and there was—lesbians came and we were so together helping each other, and we really had a strong community based on caring. We had so much wisdom. We had the older gays that knew things and were passing it on helping each other, and we lost all that. I feel sorry that you didn’t get to have that, and that’s probably why I’m doing this because I want to share a little bit that you may not get anywhere else.

In the loneliness and stigma of the HIV/AIDS crisis, in the face of death and illness, Robb saw good. It is a very spiritual endeavor to perform this kind of introspection and find what is good within the dark times, and even mourn the absence of what once was:

It made us very strong because we had nothing to lose, and we also knew if we didn’t fight, that it was not going to happen. We had to do it. It made us strong and powerful. It was a terrifying and thrilling time to be in the gay community.

Jesús, also from the generation of older survivors, was concerned by the lack of intergenerational LGBTQ+ solidarity, which he views as partially responsible for risky behaviors, misinformation, and the persistence of HIV/AIDS as an American health concern. He connects the values he wishes the gay community maintained with wisdom he hopes to apply to the rest of his life as a human being:

I feel that we’re failing in [doing] the whole intergenerational thing. Youngsters nowadays don’t even know the history of what happened or how it happened. They just think that you can just take a pill and nothing is going to happen. The reality… we are the only proof of what might happen to you in twenty years. Everything that someone might tell you now—'No, nothing is going to happen,’—ask them to show you what is the proof of that. We should communicate more between generations, because otherwise—but it is part of that also, in this country, the ageism is pretty high in comparison with other countries. Here, as soon as you start losing your youth and beauty, then that’s like—it’s like ‘scene’, almost.

Jesús expresses that experiences with death, illness, bigotry have taught him the significance of recognizing the intrinsic value and humanity of every person.

Additionally, like how Michael expressed the connection between the Holocaust of

European Jews and the HIV/AIDS crisis constituting a genocide for gay men, Jesús agreed that there are crises today which are forgotten and neglected–because of a lack of values, because of apathy, and because of abuse and neglect by those in power:

Mijo, I’m not falling apart, but yes, I am an elder and I still have things to give to society. And also, on the other side, once again, don’t call the older people ignorant, or stupid, or that they don’t know what they’re doing or all these things. Come on! Really? There’s all kinds of people. Give a chance to every person. Now, with what’s going on politically and everything, things are getting worse for many people in many ways and many things in other countries are very bad to get medicines and other things. And just the last thing, mijo, is that we are doing, right now, with [the] opioids epidemic… becoming, once again, another area of stigma and we have to be very careful with those things because the HIV people—they know how it hurts when someone talks badly about you, or don’t want to touch you or don’t want to be with you, so whatever disease it is, just let’s be careful. Don’t go into judgment without knowing or with not separating that if somebody was a whore or if somebody was just a one-time deal—don’t judge too easily.

Another participant, Ron, who was much younger and did not live through the

AIDS crisis as an adult in the 1980s and 1990s, discussed the evolution of what he argues was once called the “gay community” into the “queer community.” This evolution occurred as the way society understood gender and sexual identities was explored and expanded, and as the AIDS/HIV crisis forced LGBTQ+ folks to unite for common causes. Today, LGB activism has only just begun to include transgender and nonbinary identities, in addition to its historic representation of mainly gays and lesbians. In this way, some queers became assimilated in the mainstream society faster than the other queers. About this, Ron expressed the shortcomings that he sees even within the

LGBTQ+ community that others find liberating. As many others have, Ron has developed an ethic of accepting the good with the bad, but not settling for a community culture that is less inclusive, diverse, and informed than it could be. He learned what it meant to be stigmatized for being gay and HIV-positive. This life situation lit a fire in his heart for justice:

I think that it’s important that queer people really start to expand upon those things so that we don’t fall into the trap of what so many people in religion do; you’re not allowed to question certain things. You’re not allowed to feel certain ways. You’re not allowed to process information in certain ways and lead with what you think. You’re supposed to go with this because you identify—I’m supposed to think, I’m supposed to go a certain way, I’m supposed to eat a certain places, shop at certain places, wear certain brands; I’m supposed to look a certain way because I identify as a gay man, and that, to me, is like, ‘No. Why?’ and it’s because someone felt strong enough at some point to ask questions, and then, present themselves as they saw fit. Men, women, in-between, all the way above saw their friends just perish and got to a point where they became numb, and so, now that we live in an age of technology and science and U=U is a thing20, traumatic experiences shaped the ideas in their approach to the subject, and so, it’s hard for me to present a new perspective that is less traumatic that is going to trump that traumatic experience and teach a new perspective.

Many participants, when asked questions about future questions all responded that they were pleased by medical advances in AIDS/HIV care, but also concerned with the lackadaisical attitude many young and affluent Americans have toward becoming HIV- positive. Marla, who spent much of her interview discussing the stigma, rejection, and singleness as a straight HIV-positive woman, expressed frustration with the lack of understanding this generation has–a privilege and a curse:

I have a couple of nephews and a niece and they’re between twenty-one and twenty-five years old, and they have no idea what I went through. No

20 U=U stands for “undetectable means untransmittable.” This means that people living with HIV, who maintain an undetectable viral load by taking an antiretroviral therapy drug, cannot sexually transmit the drug to others. Information obtained from National Institutes of Health (NIH). 83

clue. In fact, they’re out there having unprotected sex! I’m like, ‘You guys! You guys!’

Charley, the pastor ordained by the Metropolitan Community Church, agreed that though in some communities, fears about HIV/AIDS have diminished. As one participant explained, many people in predominately white gay circles refer to it today as “gay cancer” because of its perceived lack of severity. However, Charley expresses that, in his perspective as a pastor in a small city catering to more rural surrounding counties:

There is still that fear that if a person comes out as HIV-positive, that they’ll get fired, and it’s a very real fear, I have discovered, even though it’s illegal. There is the fear that their friends, and family and neighbors are going to shun them; again, a very real fear. So, you have those things in tension against each other.

Rev. Charley argued that especially as a Protestant pastor he has seen the way in which Christian and American cultural norms have contributed to a sex-negative, body- negative culture. Rather than moving against the changing culture and shunning conversations that are scary or even threatening to long-held status quos, Rev. Charley argues that church can be the first place of change:

I think some churches are only willing to go so far in the conversation and no further, and so, how it would take place—I think, if we go back to the true meaning of the word ‘repentance’: rather than ‘mea culpa’ and beating ourselves up on what we’ve done, repentance [is] a changing of direction and if we can really embrace that. I think the other thing is the churches need to stop waiting on everybody feeling comfortable before they make the move. The whole thing about stepping out of faith, doing what you know is right even if it’s uncomfortable, and then, moving into that comfort zone—if you’re waiting for everybody to feel all nice, and warm, and fuzzy about it, and then come out with your statement affirming LGBT, it ain’t never going to happen.

Overwhelmingly, participants shared future perspectives that left room for both realism and optimism about the future. Much of the technology, legal protections, and community that exist for HIV-positive and LGBTQ+ Americans had dramatically

changed health outcomes, assimilation, and life quality. Yet, there are many challenges ahead. In conclusion of this examination of the future, Robb commented that he no longer has religious faith in the traditional sense, but is hopeful about the eventual triumph of good:

It’s hard not to be really angry right now at the destruction of our biosphere and, really, the representation in our government… [but] there is hope. I realize there is a lot of good going on far more than we realize; far, far more than is represented [in media]. There is a lot going on that’s good in technology and mobilization of effort and resources. It is there. I really don’t think we can grasp what could be done that is—it could happen overnight. I do believe that. There is hope.

CHAPTER THREE

Summarizing the Wisdom of HIV/AIDS Survivors

When you fall from a great height, there is only one possible place to land: on the ground; the ground of truth… This was true of Gesar, the great warrior king of Tibet, whose escapades form the greatest epic of Tibetan literature. Gesar means ‘indomitable,’ someone who can never be put down. From the moment Gesar was born, his evil uncle Trotung tried all kinds of means to kill him. But with each attempt Gesar only grew stronger and stronger. It was thanks to Trotung’s efforts that Gesar was to become so great. This gave rise to a Tibetan proverb: Trotung tro ma tung na, Gesar ge mi sar, which means that if Trotung had never been so malicious and scheming, Gesar could never have risen so high.

- Sogyal Rinpoche, Tibetan Book of Living and Dying, pg. 36. 1992.

Limitations and Future Research

There were a few points of limitation in this project. First, this author would have liked a diverse participant pool, which he will prioritize as he continues to interview

HIV-positive Americans about religion, belief, and spirituality. While some ethnic diversity was present, with approx. ⅓ participants being people of Color, and ⅓ Jewish, there was low representation of women, and no transgender or nonbinary participants.

Also, the author was not able to recruit or speak with anyone from outside Jewish and

Christian faith origins, nor Asian Americans. Much time was spent contacting HIV/AIDS institutions and organizations, but due to the sensitive and stigmatized nature of the content, recruitment proved difficult. Additionally, because many contemporary Christian and Jewish sects are far more open to LGBTQ affirmation and a progressive stance on

HIV/AIDS than many American Muslim or Hindu sects, for example, the author–an undergraduate student with limited credential–was only able to obtain interviews with the former. Thus, future research needs to include religions outside of Judeo-Christianity and 86

secularism, especially Islam, Hinduism, Buddhism, and Sikhism, and others that play a significant role in the Unites States.

The author hopes to personally interview a more religiously diverse demographic, but also recommends that other researchers also seek to expand these inquiries of HIV and religion to include these diverse demographics. Lastly, intentional recruitment of ethnic diversity must be a continued priority in future research, especially considering that Black and Latino Americans, especially in low-income communities are most at risk of HIV.

Conclusions

The experiences and beliefs of these HIV-positive participants reveal a

great depth of contemplation and spiritual inquiry. Participants in this project

reported confrontations with marginalization and mortality. They also reported

dealing with alienation, seeking to understand paradox, and coping with death and

suffering. These are all intrinsically spiritual experiences. As professed by queer

theorists and LGBTQ+ liberation theologists, there is radical freedom of thought

that can be found by those who have been told they do not “belong.” The corpus

of these oral history interviews testifies to this argument.

Indeed, as the Buddhist parable of Gesar (above) explains, the religious

institutions and doctrines that can cause harm–whether from hated, apathy, or

misplaced piety–can paradoxically act as a stimulus for deep spiritual

examination. In liminal spaces of existential uncertainty, there is unique potential

to develop new worldviews and challenge the status quo. This experience is reflected in the lives of many human beings who live with HIV/AIDS.

In the exploration of lifespan worldview development of PLWH (people living with HIV), 10 key topics emerged. These are featured in the Chapter 2,

Findings. These were organized chronologically and focused on internal and external stimuli that affect worldview development.

First, childhood and adolescent memories of family, culture, and faith were examined (Theme I). For example, some participants found that the framework they inherited, while contributing to harm and trauma, had components of goodness that were preserved into adulthood. Robb believes that– against the intentions of the Latter-day Saints Church, his experiences abroad on a mission and his courses at Brigham Young University–helped him expand his mindset in life, which later prepared him to cope with HIV. Michael, who was rejected by conservative Jewish Eastern European immigrant parents, later reconciled with his father who had endured his own tragedy in the Holocaust, which motivated him to return to his childhood faith.

Second, religious and cultural paradigms of normative sexuality were investigated. Participants–many of whom identified as gay, queer, or LGBTQ– frequently reported experiences whereby they challenged cultural and religious messages about human sexuality, sex, and normativity (Theme II). It is impossible to examine the constructs of HIV in society without the examination of “norms” of sexuality. Many participants reported feelings of “transgression” in their faith traditions. For example, Ron, a Black gay man explains that growing up poor in

the inner city meant that religion was one of the few constants in his life. The religious alienation experienced by LGBTQ+ people was only exacerbated by

HIV-positive diagnoses.

A third major theme arose from the interviews: how spirituality related to understanding and coping with the HIV-positive diagnosis (Theme III). Long- term survivors, such as Robb, Marla, Jesús, and Michael constitute a distinct generation, as they had to cope with understanding the diagnosis as a threat to imminent mortality to an extent the younger generation of survivors does not, especially as the years after 2000 marched on, and with them, medical advancements. That being said, a younger generation participant, Ron, expressed that in spite of the facts he knew about medical advancements in HIV treatment, he still felt he was going to die based on societal perceptions and a depressed state of mind.

Fourth, participants frequently reported that their worldviews expanded as they strove to cope with mortality, marginalization, and loss (Theme IV).

Participants reported personal fear for their mortality in the wake of diagnosis, and also the necessity of coping with the trauma of losing those whom they knew and loved. Additionally, participants had to cope with the societal marginalization that came with being HIV-positive. These experiences put many of the participants in a position, they reported, where it became necessary to answer tough questions of meaning and purpose, and how to seek peace during chaos.

Many participants reported the struggle that they faced knowing they survived while others with HIV did not. Many participants needed answers to the question

of “why” such horror could happen–and sought more comprehensive paradigms leaving more room for nuance and complexity than those they were taught. Most reported that friends and partners were the most significant influence toward reclaiming a new/healthier form of spirituality or religion in their lives.

Additionally, interviewees reported that affirming clergy, affirming religious congregations, and theological authors allowed others to return to a place where they could once again trust religion and spirituality. Some participants reported a successful reconciliation with parents who had disowned them, while others sought and did not find reconciliation, and others found reconciliation internally.

Additionally, as a means to process the conditions of their lives, many participants reported having developed new spiritual practices or participated in new spiritual experiences. This included transcendental psychological experiences that brought a new sense of peace and liberation, meditation, prayer, seeing visions, and using learning as a spiritual practice. Most participants–though the paths they took drastically varied–reported that their new beliefs, experiences, and practices had taken them from a more closed-minded paradigm, from a place of religious trauma, to a healthy spirituality.

A fifth theme examined was collective HIV/AIDS trauma–and the spiritual response as a means to process it (Theme V). This is the trauma shared by people who are HIV-positive and/or LGBTQ+ in a society where both groups are marginalized. Common to many interviews, such as with Michael and Ron, was an anger at the federal government for its inaction, as well as an anger for the leadership of organized religion for both their inaction and distinct efforts to stifle

HIV care/research and support for gay people living with HIV. Many participants reported that their friends were dying; for two decades the older participants endured an era without effective HIV medication, where AIDS was often a death sentence. Marla, a participant who provided a glimpse of the woman's experience of HIV, explained that to this day, she has endured rejection after rejection by romantic partners, friends, and families. However, sources of peace and comfort were healthy spiritual institutions, romantic partners, family, social activism, friendships, films and art, pets, and learning.

Sixth, participants reported experiences with personal trauma (Theme VI).

They explained how this played a role in the changes undergone in their worldview and spirituality. Some participants voiced experiences of cruelty by those who were expected to love and supported them: partners and lovers, parents, and other members of the gay community. One participant, Robb shared a story where a presumably mentally-unwell sexual partner knowingly deceived him and infected him with HIV. Jesús, a permanent resident in the US, expressed that he experienced years of fear of the government because of the block on citizenship for HIV-positive folk.

Seventh, participants identified identity-related experiences that were at the intersection of their various identities, as being HIV-positive and their identities as Black, Latino, Jewish, queer/gay, woman, etc. (Theme VII). Some reported experiences of how their ethnic identities meant increased stigma for being HIV-positive, particular in the Black and Latino communities. Others, such as Marla, explained the lack of visibility and resources for women with HIV.

Robb saw a link between the socialization of Blackness–knowing he was marginalized already before he even knew he was gay–and later experiences of marginalized for being gay and HIV-positive. In many instances, these identity- related experiences influenced vocational decisions for participants, such as for

Robb who wished to establish a gender and ethnically inclusive HIV/AIDS community education organization.

An eighth commonality was the relationship between spirituality and loss

(Theme VIII). Michael mentioned the significance of the American AIDS Quilt as a means to process the loss of hundreds of thousands of HIV-positive Americans.

In this section, it was very common for participants to report the difference that affirming clergy had made in their lives as marginalized people who were coping with loss. A minister who was interviewed spoke of the need for compassionate, humble pastoral care for and with HIV-positive persons. Ultimately, mourning defines the story of HIV and AIDS because of its mortality; these individuals have confronted more loss than many Americans, and it has played a deep role in their religious/worldview journeys.

Ninth, many participants expounded upon their personal relationship to concepts of peace-seeking, reconciliation, and forgiveness (Theme IX).

Understandably, many had endured significant spiritual, emotional, and psychological trauma which prevented them from being able to ever fully forgive and make peace with the individuals and institutions that hurt them. Others express the significance peace-making has positively benefited their emotional and spiritual wellbeing.

Tenth and finally, is the theme of how survivors view their personal and collective futures (Theme X). Some of the older participants expressed that they mourned a gay community that was once stronger, tighter-knit, and more united than they say it is today. Others expressed fear and frustration of the younger generation who do not take HIV seriously anymore–viewing it a “gay diabetes” a condition of western privilege, because in the west it is perceived to be easily treatable. They expressed that because they as HIV-positive individuals and queer people have endured such marginalization, they are also especially attuned to the oppression of others, such as refugees and migrants at the southern border.

Ultimately, participants voiced the importance of hope, not a blind hope that trusts in dogma, but a hope that is made consummate through actions of peace and justice.

After examining trends shared among HIV-positive participants in this project, it is ultimately likely that HIV/AIDS status has been the impetus for major spiritual, worldview, philosophical, and social investigation for many people. Being HIV-positive means experiences that intimately relate to health, sexuality, mortality, societal expectations, and ethics. It is a condition that has necessitated a deep spiritual searching for many survivors. This does not mean that a reader should assume that HIV survivors are lucky–nor, are they to be pitied. Rather, these survivors have compelling narratives of loss and hardship– but also stories of tremendous bravery, compassion, and service. This author’s sincerest hope is that these narratives have given the reader a better understanding of the religious, spiritual, and psychological thoughts, beliefs, and opinions of

long-term HIV survivors. Hopefully, these narratives have also influenced the reader to consider their own spirituality or worldview. It is from the marginalized–such as those with chronic illness, and those close to mortality–that one can learn much about the nature of religion.

APPENDIX

An Historical Timeline of HIV/AIDS and Religion (1981-2000)1

● June 5, 1981: The U.S. Center for Disease Control (CDC) publishes a periodical entitled Morbidity and Mortality Weekly Report (MMWR): Pneumocystis Pneumonia.2 The article describes cases of a novel lung infection, Pneumocystis carinii pneumonia (PCP), in five young, previously healthy gay men in Los Angeles. This edition of the MMWR is the first official reporting of AIDS (Acquired Immunodeficiency Syndrome). ● Fall 1981: the New York Times, LA Time, San Francisco Chronicle continue to report on novel pneumonia, Kaposi’s Sarcoma cancer, and other opportunistic infections among gay men in these cities. “Gay cancer” enters to lexicon. The first conferences and meetings are held among medical professionals. At the end of the year, there are 270 reported cases of severe immune system deficiency among gay men, with nearly half of these individuals having died. ● 1982: Gay Men’s Health Crisis (GMHC) is founded in New York City. In May, volunteer Rodger McFarlane sets up a GMHC information and counseling hotline on his home phone—he receives 100 phone calls from worried gay men the first night. ● September 24, 1982: CDC uses the term “AIDS” (Acquired Immune Deficiency Syndrome) for the first time in a new MMWR, and releases the first case definition for AIDS: “A disease at least moderately predictive of a defect in cell- mediated immunity, occurring in a person with no known cause for diminished resistance to that disease.” Later in 1982, scientific publications release the first information about the mysterious AIDS infecting children who received blood transfusions. ● January 1, 1983: Ward 86,3 the world’s first dedicated outpatient AIDS clinic, opens at San Francisco General Hospital. The staff pioneers the “San Francisco Model of Care”, which emphasizes treating patients with compassion and respect and providing an array of health and social services in one facility.

1 This timeline was created from a synthesis of materials used in the Bibliography of this project, newspaper article archives, and the preexisting American HIV/AIDS timelines found on the web resources of the Centers for Disease Control and Prevention (HIV/AIDS timeline by Prejean et al., 2016) and the timeline produced by HIV.gov, also in 2016. The story of HIV/AIDS in America–and the world–is not over. Social, religious, and medical histories must continue to be told regarding HIV-positive people and the LGBTQ+ community. 2 See MMWR periodical published by the Center for Disease Control and Prevention, 1981. Information for access in the Bibliography section. 3 See AIDS Research Institute webpage. Information for access in the Bibliography section. 96

● August 1-2, 1983: The U.S. House of Representatives Subcommittee on Government Operations holds first hearings on the federal response to AIDS. ● November 22-25, 1983: The World Health Organization holds its first meeting to assess the global AIDS situation. ● October 9, 1983: The New York Times reports that new scientific evidence has raised the possibility that AIDS may be transmissible through saliva. This will begin a period of mass hysteria and fear in mainstream America. It will be another two years before proof emerges that this is false. Later in 1983, the CDC reports instances of AIDS in females with male sexual partners. The CDC also reports that AIDS may be caused through sexual transmission. ● April 23, 1984: U.S. Department of Health and Human Services Secretary Margaret Heckler announces that Dr. Robert Gallo and his colleagues at the National Cancer Institute have found the cause of AIDS,4 a retrovirus they have labeled HTLV-III. Heckler also announces the development of a diagnostic blood test to identify HTLV-III and expresses hope that a vaccine against AIDS will be produced within two years. ● Late 1984: St. Vincent’s Catholic hospital, run by the Sisters of Charity in Manhattan, becomes the first and largest AIDS ward on the east coast.5 ● April 22, 1985: AIDS activist Larry Kramer ’s autobiographical play The Normal Heart opens Off-Broadway at the Public Theater. The play covers the impact of the growing AIDS epidemic on the New York gay community between 1981- 1984. The play examines religion, sexuality, and ethnicity as part of gay and HIV+ identity in 1980s America. ● Late 1985: U.S. president Ronald Reagan and the Reagan administration acknowledges AIDS publicly for the first time. The U.S. congress allocates $190 million to AIDS research. Actor Rock Hudson is one of the first high profile Americans to die of AIDS. Lastly, by the end of 1985, at least one case of AIDS is reported in every region of the world. ● January 16, 1986: The U.S. Center for Disease Control (CDC) reports that more people were diagnosed with AIDS in 1985 than in all earlier years combined.6 The 1985 figures show an 89% increase in new AIDS cases compared with 1984. Of all AIDS cases to date, 51% of adults and 59% of children have died. The new report shows that, on average, AIDS patients die about 15 months after the disease is diagnosed. Public health experts predict twice as many new AIDS cases in 1986. ● Fall 1986: The National Conference on AIDS in the Black Community in Washington is held to discuss the disease in minority communities. CDC reports

4See New York Times, Altman & M.d, 1984. Information for access in Bibliography. 5 See America magazine, O’Loughlin, 2020. Information for access in Bibliography. 6 Centers for Disease Control and Prevention archive (U.S.), 1986. Information for access in Bibliography. 97

that AIDS cases are disproportionately affecting African Americans and Latinos. This is particularly true for African American and Latinx children. ● March 12, 1987: AIDS activist Larry Kramer founds the AIDS Coalition to Unleash Power (ACT UP) in New York City. Kramer’s goal ACT UP is a political direct-action group that will challenge governments, elected officials, public health agencies, the pharmaceutical and insurance industries, and religious institutions to act to protect those at risk of HIV, and those who are sick with AIDS. TIME Magazine calls ACT UP “the most effective health activist [group] in history” for pressuring drug companies, government agencies and other powers that stood in their way to find better treatments for people with AIDS7. ● April 19, 1987: Princess Diana makes international headlines when she is photographed shaking the hand of an HIV-positive patient in a London hospital. She goes on to become an advocate for people living with HIV and to speak forcefully against HIV/AIDS-related stigma and discrimination. ● May 15, 1987: The U.S. Public Health Service adds HIV as a “dangerous contagious disease” to its immigration exclusion list and mandates testing for all visa applicants. The HIV ban will not be lifted until January 4, 2010. ● Late 1987: the Federal Department of Agriculture (FDA) approves the first antiretroviral drug, zidovudine (AZT). The FDA also declares HIV prevention as a new indication for the purpose of male condoms. ● October 1987: The AIDS Quilt, the collectivist American spiritual endeavor, is displayed for the first time on the National Mall. It attracts 500,000 visitors. ● Late 1987: The U.S. Senate adopts the Helms Amendment, which requires federally financed educational materials about AIDS to stress sexual abstinence and forbids any material that “promotes” homosexuality or drug use. Second, Randy Shilts’s book about the early years of the epidemic And the Band Played On: Politics, People and the AIDS Epidemic is published. Lastly, the American Medical Associations declares that doctors have an ethical obligation to care for AIDS patients. ● July 23, 1988: The U.S. Food and Drug Administration (FDA) announces that it will allow the importation of small quantities of unapproved drugs for people with life-threatening illnesses, including HIV/AIDS. ● November 4, 1988: President Reagan signs the Health Omnibus Programs Extension (HOPE) Act into law. The legislation authorizes the use of federal funds for AIDS prevention, education, and testing. ● December 16, 1988: Singer Sylvester James, Jr., dies of AIDS-related illness at age 41. He is a cultural icon of Black gay expressions of sexuality, gender, and performativity within the disco genre.

7 From Times, Szalavitz, 2012. Information for access in Bibliography. 98

● 1989: the number of AIDS cases in the US rises to 100,0008. Also, in September, members of more than predominately-Black churches and mosques in Harlem, New York come together to hold the first Week of Prayer for the Healing of AIDS. ● July 1990: the U.S. Congress enacts the Americans with Disabilities Act (ADA). The Act prohibits discrimination against individuals with disabilities, including people living with HIV/AIDS. ● October 26, 1990: the U.S. Food and Drug Administration (FDA) approves use of zidovudine (AZT) for pediatric AIDS. ● November 7, 1991: American basketball star Earvin “Magic” Johnson announces that he is HIV-positive. ● November 24, 1991: Freddie Mercury, lead singer/ songwriter of the rock band Queen, dies of bronchial pneumonia resulting from AIDS. ● 1992: AIDS becomes the number one cause of death for U.S. men ages 25 to 44. ● 1993: President Clinton establishes the White House Office of National AIDS Policy (ONAP). Second, the CDC expands the case definition of AIDS, declaring those with CD4 counts below 200 to have AIDS. The FDA approves the use of the female condom. Lastly, the film Philadelphia, starring Tom Hanks as a lawyer fired for having AIDS, opens in theaters. ● 1994: AIDS becomes the leading cause of death for all Americans ages 25 to 44. In the fall, Pedro Zamora, a member of the cast of MTV’s popular television show, “The Real World,” dies of AIDS-related illness at age 22. ● July 14, 1995: the U.S. Centers for Disease Control and Prevention (CDC) issues the first guidelines to help healthcare providers prevent opportunistic infections in people infected with HIV. ● September 22, 1995: CDC reviews Syringe Exchange Programs. The National Academy of Sciences concludes that syringe exchange programs should be regarded as an effective component of a comprehensive strategy to prevent infectious disease. Also, by October 500,000 cases of AIDS in America have been reported. ● 1996: The number of new AIDS cases diagnosed in the U.S. declines for the first time since the beginning of the epidemic. Also, the International AIDS Vaccine Initiative (IAVI) forms to speed the search for an effective HIV vaccine. The FDA approves the first home testing kits and the first non-nucleoside reverse transcriptase inhibitor (NNRTI) drug, nevirapine.

8 From Centers for Disease Control and Prevention archive, 1989). See Bibliography for access information. 99

● 1997: Highly active antiretroviral therapy (HAART ) becomes the new standard of HIV care. Due largely to this drug, AIDS-related deaths in the U.S. decline by 47% compared with the previous year. ● May 18, 1997: President Clinton announces that the goal of finding an effective vaccine for HIV in 10 years will be a top national priority, and calls for the creation of an AIDS vaccine research center at the National Institutes of Health (NIH). ● September 26, 1997: the U.S. Food and Drug Administration (FDA) approves Combivir, a combination of two antiretroviral drugs in one tablet, which makes it easier for people living with HIV to take their medications. ● Late 1997: UNAIDS estimates that 30 million adults and children worldwide have HIV, and that, each day, 16,000 people are newly infected with the virus. As a greater number of people begin taking protease inhibitors, resistance to the drugs becomes more common, and drug resistance emerges as an area of grave concern within the AIDS community. ● 1998: The U.S. Centers for Disease Control and Prevention (CDC) report that African Americans account for 49% of U.S. AIDS-related deaths. AIDS-related mortality for African Americans is almost 10 times that of Whites and three times that of Hispanics. ● February 7, 1999: The first National Black HIV/AIDS Awareness Day (NBHAAD) is launched as a grassroots-education effort to raise awareness about HIV and AIDS prevention, care, and treatment in communities of color. ● March 1999: Vixen, a San Francisco-based biotechnology company, begins conducting the first human vaccine trials in Thailand. ● 2000 and beyond: In July, UNAIDS (the Joint United Nations Programme on HIV/AIDS), the World Health Organization (WHO), and other global health groups announce a joint initiative with five major pharmaceutical manufacturers to negotiate reduced prices for HIV/AIDS drugs in developing countries. Also, President Clinton announces the launch of the Millennium Vaccine Initiative to create incentives for developing and distributing vaccines against HIV, TB, and malaria. This has yet to be met, but has influenced a time period in which HIV/AIDS research and technology has created advancements such as effective antiretroviral drugs, post-exposure prophylaxis medication, and widely used pre- exposure prophylaxis (PrEP). It is worth noting that while in the west for people of middle class or better socioeconomic conditions, HIV in 2020 is a far more manageable condition than in previous decades, wealth, infrastructure prevent many people in the world–and even the United States–from accessing the HIV/AIDS care they need. By 2020, over 32 million people around the world have died of HIV/AIDS-related causes, though nearly 75 million have been infected. Today, 38 million people–largely concentrated in developing nations– live with HIV/AIDS.

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