SAADA

In November 1985, Cleve Jones, a gay activist in San Francisco, wanted to honor the then more than one thousand San Franciscans who had died of complications related to AIDS, a mysterious and deadly disease raging through his community. What started off as a collection of placards with names taped to the walls of the San Francisco Federal Building was the inspiration for what eventually became one of the largest community arts projects in the world: The AIDS Memorial Quilt. Consisting of more than 48,000 hand-sewn blankets (each individual panel is the size of a grave, about 3- by 6-feet in size), and representing more than 100,000 people who have died from AIDS-related illness in the United States, the Quilt is one of the most enduring symbols associated with HIV and AIDS today. According to the National AIDS Memorial, the permanent caretakers of the Quilt, the project’s goal is to “[share] the story of the struggle of HIV/AIDS [and] remember in perpetuity the lives lost…offer healing and hope to survivors, and…inspire new generations of activists in the fight against stigma, denial, and hate, for a just future.”¹

The AIDS Memorial Quilt is a living tribute to a generation of Americans who lost their lives to AIDS-related illness. In the 40 years since the first cases of AIDS were documented in the CDC Morbidity and Mortality Weekly Report, numerous other memorials have sprung up across the country, from the AIDS Memorial Grove in San Francisco and the AIDS Memorial Wall in Los Angeles, to the New York City AIDS Memorial in Greenwich Village. There are even memorials in popular destinations frequented by the LGBTQIA+ community such as Provincetown, Massachusetts, and Key West, Florida. Aside from serving as sacred spaces for remembering and honoring individuals who died, these memorials also educate others about the history and the scope of the epidemic, provide a focal point for contemplation or grief, and commemorate the heroes who resisted and fought back against the “enemy,” both the microbe and the government, as inspiration for future activism.²

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Memorials are not just structures established to remind people of a significant event or a person, they are physical manifestations of historical memory, or rather collective historical memory. While these commemorations allow us to document and preserve history for future generations, every memorial begs the questions: what exactly are we remembering, and who gets to decide the who, where and why?³

Using these questions as a lens through which to examine existing AIDS memorials in the United States provokes some uncomfortable insights. The Quilt originated as a project within the economically secure, pre-dominantly white, cisgender gay male community in San Francisco. It is one of many AIDS memorials that centers the names, stories, and memories of people from that dominant community, and to that end has contributed to a “whitewashed” narrative of the epidemic.⁴ This has resulted in the sidelining of minority voices -- those of people of color, sex workers, people who inject drugs, and sexual minorities. Despite concerted efforts to elevate these “missing” stories by local community activist groups and advocacy organizations, the collective memory of the HIV epidemic is still biased and incomplete.

As I pursue broader questions about the impact of the HIV epidemic within the South Asian American community, it’s hard to appropriately reflect on the legacy of AIDS in the United States when I can’t see myself nor members of my community within the documented historical narrative of the epidemic. In the first phase of my fellowship project, I sought out archival collections at libraries and historical centers, and searched through newspaper clippings, obituaries, and AIDS memorials, hoping to find a glimpse of brown “skin” in the recorded names and pictures. However, this process has been frustrating. Stepping back, I have asked myself two questions: have South Asian Americans been – intentional or unintentionally – omitted from the historical record? Or are some South Asian Americans indeed included in archives, but their names, absent any other identifying information, are not legible as South Asian?

There are many reasons why South Asian Americans and their stories might appear to be “missing” from historical records. One possibility is that South Asian Americans did not want to be included in the historical record due to the stigma around AIDS. Given the association between AIDS and homosexuality, it is plausible that some might not have wanted to disclose their HIV status for fear of “outing” themselves as gay or as someone who engages in homosexual behaviors. Even among those who were open about their sexual identity with their families and broader community, an HIV-positive status was often seen as the last “closet.” The perception by the dominant, prejudiced culture that AIDS was a result of deeply immoral behavior led to additional and deeper levels of shame among those who tested positive for the virus.

The inclusion of any individual within an AIDS memorial project also requires considerable effort on the part of friends and family (e.g., to purchase materials or time spent creating an object for the memorial), which might have been a barrier to some South Asian Americans. During my oral history interviews, several participants mentioned intentions of creating a quilt panel for a friend who died from AIDS-related illness, but the intent was never realized, and no further explanation was given. It is also possible that those who organized and managed AIDS memorials might not have reached out to South Asian American communities for participation. Given the homogeneity of social groups at that time, even within supposedly “diverse” queer communities, those with the resources to organize a memorial were often members of closed, predominantly white and wealthy, social networks.⁵ Inclusion would have depended on unofficial gatekeepers from those networks sometimes having to make conscious decisions to proactively invite participation from outside groups.

A third reason why South Asian Americans appear to be missing from AIDS memorials might have to do with attempts to identify South Asian individuals from their names alone, which leads to an important question: what does it mean to have a “South Asian” name, and what are the parameters for identifying someone as a member of the South Asian diaspora without additional metadata such as a picture or a birth certificate? While Hindu-sounding surnames such as Balakrishnan, Chatterjee, Patel, or Malhotra could be assumed to be of South Asian descent, surnames common among Muslims, Christians, and other religious and ethnic minorities in South Asia -- Ali, de Souza, Khan, or Martin -- are more ambiguous and don’t immediately read as belonging to someone of South Asian descent. Therefore, it is possible that South Asian Americans are indeed included in the existing record, but that their ethnicity is obscured without additional data to confirm their identity.

My SAADA fellowship project has highlighted gaps in the historical record for me, and reinforced the urgency for a memorial to South Asian Americans who have died from AIDS-related illness. A memorial dedicated to South Asian Americans will allow us to preserve the memory of our community members who are missing from the official record of the epidemic in the United States, while also expanding the narrative of the broader HIV epidemic. A memorial would also be a shared space for our community to come together and contemplate the trauma of the epidemic, acknowledging that AIDS was not a disease of “others,” but happening to members of our own community. We need a shared space for grief and a shared space for healing. We need a space in which we can acknowledge and celebrate South Asian Americans who have been on the frontlines of social justice and activist movements related to the HIV epidemic so that we can inspire others to action and ensure that a similar crisis doesn’t happen again.

To address this gap in our historical record, I am creating a digital memorial -- the South Asian Americans Remembering Individuals (SAARI) Project -- to recognize and honor the lives of South Asian Americans who died from AIDS-related illness. I will use this platform to build a community-driven, participatory digital space to capture and preserve the memories of and stories about our fellow South Asian Americans, so that we can remember those we have lost as not just victims of a heartless disease, but as human beings who lived rich and beautiful lives. The memorial will document not only those who died, but also allies who fought for equitable healthcare, compassion, and equality. My hope is that by evoking the original image of the AIDS Memorial Quilt, and adding a South Asian twist, the saari, this will serve as an opportunity to collect names and stories of South Asian Americans, ensuring their lives are no longer omitted from the historical record.

As I embark on the SAARI Project, there are many ethical questions to consider. To identify someone as having died from an AIDS-related illness in a memorial is an act of disclosing personal health information to the public. Furthermore, to identify someone as having died from an AIDS-related illness is to potentially “out” them to the South Asian American community, especially if they were still in the closet while they were alive. Consent for inclusion in a memorial from family members will be imperative to respecting their privacy. If consent is not given, or if consent is not logistically feasible or possible, perhaps a pseudonym can be used to honor them without violating their rights.

Another issue to consider when including someone’s name in an AIDS memorial is the potential of reducing a person’s story to their relationship with this disease or framing them as victims as opposed to seeing and valuing their full humanity. To address this, I intend to ensure that the stories and memories will not be solely focused on their lives after they got sick, but also include a celebration of their lives notwithstanding the disease.

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Some memorials ask us to remember; others ask us not to forget. For those who lived through the AIDS epidemic, how can we remember as “past” something that is still happening into the present day? And, is forgetting the trauma of the AIDS crisis even an option?⁶

Memorials are a method for transforming collective memory into historical records. If the memory is incomplete, then the record will also be incomplete. South Asian Americans have had many roles in the HIV epidemic and through the SAARI project, I aim to capture the through-lines and ripple effects, transforming memories of these roles into tangible and formalized records so future generations can be taught a more complete history of AIDS and the HIV epidemic. If you have a story to tell about a South Asian American family member or friend who died from an AIDS-related illness and would like for them to be remembered through the SAARI Project, please get in touch. The beautiful lives they lived are worthy of preservation for eternity.

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1. https://www.aidsmemorial.org/quilt-history
2. During the early years of the HIV epidemic in the United States, the government was seen as an “enemy” because of its silence on the topic and its perceived inaction to stopping the epidemic. Activist groups conducted protests outside the CDC, the Department of Health and Human Services, the National Institutes of Health, and other government buildings to demand funding and political support. See ACT UP accomplishments 1987 to 2012: https://actupny.com/actions/
3. Brett, S., Bickford, L., Šev enko, L., Rios, M. 2007. Memorialization and Democracy: State Policy and Civic Action. Santiago, Chile. 20-22 June.
4. https://www.nytimes.com/2013/08/04/opinion/sunday/how-to-whitewash-a-pla...
5. https://www.aaihs.org/race-homosexuality-and-the-aids-epidemic/
6. https://cmagazine.com/issues/142/how-to-have-an-aids-memorial-in-an-epid...

Nikhil D. Patil, MPH (he/him/his) is a global health researcher working at the intersection of infectious diseases, technology, data, and design. His fellowship project focuses on documenting the lived experiences of South Asian Americans during the beginning of the HIV/AIDS epidemic in the United States, drawing parallels between those early years and the current COVID-19 pandemic. The Archival Creators Fellowship Program is made possible with a grant from The Andrew W. Mellon Foundation.