Olivia Alphonsine Zivot

Introduction

In 1993, the San Francisco Gay Men’s Chorus published a photo (see Image 1) depicting how many of their members had lost their lives to HIV/AIDS. In the photo, those dressed in white represent the survivors, while those in black represent those who died of HIV/AIDS. This image, which was recreated in 2018 (see Image 2) represents more than just a number of lives lost; it offers a visual representation of the sheer scale of trauma that this particular demographic suffered as a result of HIV/AIDS. 

Image 1: The San Francisco Gay Men’s Chorus in 1993 (Photo from Getty Images)

Image 2: The San Francisco Gay Men’s Chorus in 2018 (Photo from Michael Jay Stauffer Joyce/Facebook)

The National AIDS Memorial Grove (NAMG) located in San Francisco’s Golden Gate Park, is a dedicated space that serves as a national tribute to the lives lost to the AIDS epidemic in the United States. It was established as a place of remembrance, reflection, and healing, and it honors the individuals, families, friends, and communities affected by HIV/AIDS. The Grove was officially dedicated in 1996 and has since become an important symbol of both the impact of the AIDS crisis and the ongoing efforts to raise awareness, provide support, and fight against HIV/AIDS. The site includes a serene and contemplative environment with various elements such as walking paths, a circle of pillars, a reflecting pool, and areas for gatherings and events.

Throughout the years, the Grove has been used for various ceremonies, memorial services, and events to raise awareness about HIV/AIDS, remember those who lost their lives, and support those who are living with the disease. It serves as a physical reminder of the importance of continued efforts to combat HIV/AIDS, reduce stigma, and promote education and advocacy. The National AIDS Memorial Grove not only commemorates the lives lost, but it also stands as a place of hope, resilience, and unity in the face of a devastating epidemic. 

Collective memory scholarship on HIV/AIDS examines how societies and communities remember the impact of the epidemic, as well as the ways in which memory and narratives of HIV/AIDS shape public perceptions, policies, activism, and cultural representations. However, problems of remembering and forgetting are especially complex when an event is not technically over. In this particular study, the author will explore the collective memory of HIV/AIDS in America, especially through the lens of gay male ‘Baby Boomers’ who lived through the epidemic. To quote one scholar, “for this subcohort within the Baby Boom generation, the disproportionately high volume of AIDS deaths among gay men aged 25–44 years at the epidemic’s peak (1987–1996) created a cohort effect, decimating their social networks and shaping their personal and social lives during the epidemic, throughout their life course, and into later years,” (Rosenfield et al. 2012: 255). Scholarship on this unique collective experience of those gay men who survived the AIDS crisis has shed light on the complex legacy of the disease. In the words of one scholar:

Problems of remembering have been baked into AIDS culture, as low-grade anxiety and high- octane activity, since its beginnings. How do we not forget what they sounded like, looked like, smelled like, the ‘dense compacted difference’ within the common trauma of HIV and AIDS? How do we remember when many of us are still traumatized, only partially healed, maybe wanting to forget? How do we honor both our dead and our own survival? How do we remember something that is not over? Where do we even put the memories so that they are not lost to time? Whose memories are saved and whose are lost? What story is this? Whose story is this? (Gamson 2018: 35).

It is clear that the collective cultural trauma shared by the survivors of the HIV/AIDS epidemic holds a significant place in the very identity of gay male Baby Boomers. In the words of Alexander et. al, “cultural trauma occurs when members of a collectivity feel they have been subjected to a horrendous event that leaves indelible marks upon their group consciousness, marking their memories forever and changing their future identity in fundamental and irrevocable ways” (2004: 1). Collective memory itself has been defined in various terms. In the words of Corning and Schuman, collective memory is “a memory shared by the members of a group, with the memories helping to create and sustain the group, just as the group supports the continued existence of the memories,” (2015:1). Similarly, Conway refers to “what social groups select out of the happenings of their lives that they consider important and worthy of preserving,” (2010:443). Sturken describes it as “a field of cultural negotiation through which different stories vie for a place in history” (1997:1). Schwartz’s view is similar, calling collective memory “the distribution throughout society of what individuals know, believe, and feel about the past, how they judge the past morally, how closely they identify with it, and how much they are inspired by it as a model for their conduct and identity” (2005). 

The collective memory of HIV/AIDS in America is a multi-faceted and dynamic phenomenon, especially given the ongoing presence of the disease in society. While modern medicine has made it possible for those with HIV/AIDS to survive and live a relatively normal life, the individuals who survived the first two decades of the epidemic have been unequivocally affected by the loss of so many lives around them. Given the complexity of remembering and forgetting, the National AIDS Memorial Grove itself is a manifestation of collective memory, wherein the legacy and narrative of the epidemic have been legitimized by federal financial sponsorship. To quote the NAMG: “Since the start of the AIDS epidemic, those impacted have felt a collective grief and sought out positive ways to express it. The Grove ensures that lives lost to AIDS are not forgotten. It stands to tell the story of AIDS to current and future generations, striving to protect their communities from the harm of fear, silence, discrimination, or stigma.”

A Heavily Abridged Timeline of HIV/AIDS

For the purpose of this study in collective memory, the author focuses specifically on the case of AIDS in the United States, while recognizing that the social, political and cultural effects of the epidemic are innumerably varied across the globe. In America, the social and cultural ramifications of the AIDS crisis formed a unique crux in the lives of gay men. In the words of one scholar, “for gay men, the early epidemic was a crisis created by social and political inequalities that resulted in numerous unforeseen negative consequences and required tremendous acts of resistance and social adjustments” (Tester 2018: 32). 

On June 5, 1981, the Centers for Disease Control and Prevention (CDC) published an epidemiological report describing “5 young men, all active homosexuals,” who “were treated for biopsy-confirmed Pneumocystis carinii pneumonia at 3 different hospitals in Los Angeles, California.” It was the first official description of what would become the global AIDS crisis. According to the CDC, an estimated 40 million people have died of AIDS since the epidemic first started, and as of 2022, nearly 40 million around the world are living with HIV. The global impact of AIDS cannot be understated or simplified, for the sheer scale and nuance of the epidemic continues to reveal itself. It is important to note that in the early years of the AIDS crisis, there was very little understanding of how the virus was transmitted, but it was clear that those who got sick died swiftly and horribly. The result was widespread panic and confusion, which only contributed to the suffering of the infected and those closest to them. In a CDC report from 1991, it was reported that gay/bisexual men accounted for 59% of AIDS deaths in America. In 1992, the CDC reported that AIDS had become the number one cause of death for American men aged 25-44.

In 1997, the CDC reported the first substantial decline in AIDS-related deaths in the US, down by 47% from the previous year due largely to the use of highly active antiretroviral therapy (HAART) as well as widespread public health information campaigns. A decade later in 2007, the CDC reported that HIV/AIDS had claimed the lives of 562,000 Americans since 1981. In August 2011, the CDC reported that the “annual number of new HIV infections in the United States was relatively stable at approximately 50,000 new infections each year between 2006 and 2009. However, HIV infections increased among young gay and bisexual men, driven by increases among young, black gay and bisexual men – the only subpopulation to experience a sustained increase during the time period.” 

In 2019, The CDC reported that infection rates “remained stable among gay and bisexual men, who continue to account for the largest portion (about 70 percent) of new infections. However, trends varied by race/ethnicity and age:

• By race/ethnicity, infections remained stable among black gay and bisexual men; increased 30 percent among Latino gay and bisexual men; and decreased 16 percent among white gay and bisexual men.
• By race/ethnicity and age, infections decreased more than 30 percent among black gay and bisexual males ages 13 to 24; remained stable among Latino gay and bisexual males ages 13 to 24; and increased about 65 percent among both black and Latino gay and bisexual males ages 25 to 34.

Given this data, it is clear that gay and bisexual men continue to make up the majority of HIV/AIDS patients, but the diversity of victims and those affected by the epidemic is much more complex. For those who lived through the peak of the epidemic, the collective trauma of survival continues to define a generation of gay and bisexual men. In the next section, the author will discuss the ways in which Americans (and more specifically, those who survived) honor, memorialize, process and make sense of HIV/AIDS in modern society. 

Reflexivity in Remembering: Public Monuments, The NAMG and the Ongoing Crisis

In Cultural Trauma and Collective Identity (2004) Alexander et al. discuss the nature of trauma, and how sociologists differentiate between individual and collective trauma. In the case of HIV/AIDS, it is clear that the cohort of survivors were traumatized given the lay definition of trauma itself. The authors state that “the trauma experience occurs when the traumatizing event interacts with human nature…Human beings need security, order, love, and connection. If something happens that sharply undermines these needs, it hardly seems surprising, according to the lay theory, that people will be traumatized as a result” (Alexander et al. 2004: 3). The logical response to trauma, according to this theory, is a collective and organized group effort to retroactively alter the circumstances that led to the trauma. “Memories about the past guide this thinking about the future. Programs for action will be developed, individual and collective environments will be reconstructed, and eventually the feelings of trauma will subside” (Alexander et al. 2004: 3). Given this framework, it makes sense that those who felt most traumatized by the HIV/AIDS epidemic would be at the forefront of public memorials such as the NAMG. 

In his 2011 book Monument Wars: Washington, DC, the National Mall, and the Transformation of the Memorial Landscape, historian Kirk Savage explores the complex and evolving history of public monuments and memorials in the United States. He highlights how the design and placement of memorials have evolved over time and reflects changing cultural and political ideals. Savage argues that public monuments are not merely static sculptures, but rather dynamic cultural artifacts and contested symbols that reflect the values, conflicts, and shifting priorities of American society. He discusses how monuments can both shape and be shaped by collective memory, influencing how historical events and figures are remembered or forgotten.  In the words of Savage, while the “old fashioned hero monument unabashedly made distinctions of value, elevating some men over others,” the more contemporary “victim memorials” hold at bay the “nagging issue [of] why one person’s murder, or one group’s suffering, can be more important than another’s,” rarely reaching out “beyond their own boundaries of victimhood” (2011: 294-85). In fact, The Grove has deliberately decentered white gay men from the memorial presentation, “putting forward a multivocal, pluralistic, often intersectional set of voices” (Gasmson 2018: 43). Gamson explores how the NAMG “operates with surprisingly broad, loose, and porous categories of ‘victim’ and” “survivor.’” He elaborates: 

Even as gay men have occupied much of the NAMG’s leadership and volunteer base, very little energy is devoted to ranking survivors or victim, developing criteria for who qualifies as a legitimate AIDS survivor or victim, or policing the boundaries of who is or isn’t part of the Grove’s memorializing. On the contrary, the official criterion for memorial inclusion casts a wide, loose net— ‘anyone who has been touched by AIDS’—that is maintained across both public and private expressions. The impulse has been to build a ‘coalition of the suffering’ (Savage 2005: 295) rather than to establish a memorial hierarchy. (Gamson 2018: 42-43). 

This brief exploration of the legacy of HIV/AIDS in America has aimed to illustrate the ways in which the survivors of the epidemic both live with and move forward from the collective trauma they have experienced. Given the ongoing presence of HIV/AIDS in society, the NAMG serves as a place of both remembering and planning for the future. As Alexander et al. point out, the process of healing collective trauma necessitates organized group efforts to combat and change the circumstances that led to the trauma in the first place. Modern challenges to eradicating HIV/AIDS hinge upon disparities of race and socioeconomic status, and the NAMG serves as a gathering place and headquarters for the American fight against the virus. While gay men who survived the early days of the epidemic process their collective grief, they also lead the efforts to change the circumstances that lead to HIV/AIDS deaths. Whether or not it is possible to fully heal a whole group’s trauma, the efforts of the NAMG are nonetheless vital to America’s ongoing battle against the virus. In the words of Gamson, “the characteristics of the AIDS trauma itself predispose the NAMG towards an open-ended, multiple, and dynamic sort of collective memory generation. AIDS is a moving target, and the experiences of AIDS are ongoing, widely variable, and ever changing” (2018: 45). As time moves forward, the collective memory of HIV/AIDS and the trauma experienced by those who survived it will continue to evolve.

Works Cited

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Conway, Brian. “New Directions in the sociology of collective memory and Commemoration.” Sociology Compass, vol. 4, no. 7, 2010, pp. 442–453, https://doi.org/10.1111/j.1751-9020.2010.00300.x.

Corning, Amy, and Howard Schuman. Generations and Collective Memory. University of Chicago Press, 2015.

Gamson, Joshua. “‘the place that holds our stories’: The National AIDS Memorial Grove and flexible collective memory work.” Social Problems, vol. 65, no. 1, 2017, pp. 33–50, https://doi.org/10.1093/socpro/spx043.

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Savage, Kirk. Monument Wars: Washington, D.C., the National Mall, and the Transformation of the Memorial Landscape. University of California Press, 2011.

Schwartz, Neal J.Z. Emergent Memory: The National AIDS Memorial Competition. National AIDS Memorial Grove, 2005.

Sturken, Marita. “The wall, the screen, and the image: The vietnam veterans memorial.” Representations, vol. 35, 1991, pp. 118–142, https://doi.org/10.2307/2928719.

Tester, Griff. “‘and then AIDS came along’: A life course turning point and sub-cohorts of older gay men.” Journal of Gay & Lesbian Social Services, vol. 30, no. 1, 26 Dec. 2017, pp. 33–48, https://doi.org/10.1080/10538720.2017.1408516.

United States, Congress, Centers for Disease Control and Prevention, et al. Pneumocystis Pneumonia — Los Angeles, Centers for Disease Control and Prevention, 1981, pp. 1–1. https://www.cdc.gov/mmwr/preview/mmwrhtml/june_5.htm. Accessed 31 July 2023.