The South Asian Americans Remembering Individuals (SAARI) Project
A Community-Driven, Participatory, Digital AIDS Memorial
By Nikhil D. Patil |
MAY 6, 2021
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
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
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.
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.
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.
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.
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.
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.