Editors’ Note: Dan Royles guest-edits the following post, which features five perspectives on the HIV/AIDS History Collaboratory, hosted by the Rockefeller Archive Center.
In June 2017 the Rockefeller Archive Center (RAC) convened a meeting of scholars, grantmakers, and AIDS activists to discuss new directions for the histories of HIV/AIDS and the ways that a better understanding of past philanthropic responses to the epidemic might inform approaches to new and emerging crises. Participants discussed the state of the field of HIV/AIDS historiography and traded insights about the ways that foundations and donors reacted to a rapidly evolving public health crisis before heading into the Archive Center’s Reading Room to dig into some grant files. Here the historians in the group got to examine documents alongside those who had helped to create them, while the grantmakers and activists got to see how historians make sense of the past through fragmentary evidence. For many in the group, the research experience was the highlight of the meeting.
Participants in the meeting—subsequently dubbed the HIV/AIDS History Collaboratory—agreed that the experience had granted them new insight into their work around the epidemic. Here they share their reflections on the meeting, including lessons for both historians and grantmakers, and suggestions for replicating the meeting model in other contexts. A full report on the meeting can be found here.
From Small Donors to Big Institutions
Elizabeth Alice Clement, Associate Professor, Department of History, University of Utah
It is a truism in the literature on HIV/AIDS that, because the federal government ignored the epidemic through much of the 1980s, most of the initial funding came from philanthropies. As a result, many of our conversations at the RAC started with the question of how institutional priorities at philanthropies shaped the response to HIV. My experience at the RAC workshop gave me a fresh perspective on my own research in the papers of the Utah AIDS Foundation (UAF). A merging of two early AIDS Service Organizations, the UAF formed in 1988. It conducted prevention and education and provided support services to people with AIDS. The UAF received funding from a variety of sources, including small individual donors and big philanthropies like the Robert Wood Johnson Foundation. My work in their records indicated that philanthropies might want to think about the priorities of individual donors who sustained early AIDS organizations. The UAF annual budgets (which I learned to read with help from participants in our working group) reveal that private donations from individuals seeded the organization and later sustained it as foundation grants came and went. The oral histories I have conducted indicate that local donors preferred to fund client services such as the UAF’s food bank, AIDS hotline, and buddy program (trained volunteers who offered support to people with AIDS), rather than prevention programs. That probably related both to the reasons people would donate—knowing someone with AIDS—as well as the more general desire for their money to go to concrete things like food, rather than prevention, which seems more abstract. If that is the case, foundations might want to think about how their money could best be used to complement, rather than to duplicate, the priorities of individual donors. It would behoove granting institutions to know about patterns in small private donations and think about funding projects not likely to be supported by local communities.
A second issue raised in our discussions lies in the impact of philanthropic funding on small community organizations. UAF’s most important services, including the buddy program, hotline, and speakers bureau, ran for years on the volunteer labor of the gay community. When the organization received its first big multi-year grant from the Robert Wood Johnson Foundation in 1989, it suddenly had to document its work in the formats required by the grantor. This created a tension between the community from which the UAF emerged, and the need to professionalize in order to win grants and expand much needed services. Rick Pace who had AIDS and also ran the UAF in the mid-1990s described the chaotic situation he walked into as a volunteer bookkeeper. “Any time you get a non-profit like that, accounting and bookkeeping is the last thing people are worried about.” After all, he elaborated, “people are dying, we haven’t got time. So it’s just all thrown in a box.” Tensions arose between professionally trained staff, who understood the need to document program activities in funders’ technical language, and the volunteers who felt that professionalization threatened the values that brought them to the organization in the first place. As UAF shifted to more professional practices many felt that doing so sacrificed its connection to the community. The lesson here is that money does not come without strings, nor does it always have a positive impact. Funders might want to consider including funding for the work of assessment itself. Obviously explaining how an organization spent money is crucial to grant-making agencies, but it can also be an unfunded mandate to groups struggling to do vital work. New organizations, in particular, would not know to request funding for this vital process, which puts further pressure on already stressed people and groups.
Reflecting on the Past and Looking Ahead
Dázon Dixon Diallo, Founder and CEO, Sisterlove Inc.
It is rare to have any opportunity to take time away from day-to-day struggles to address the impacts and the potential end of the HIV epidemic. If we are truly moving toward an “AIDS-free generation” within the next decade, then the HIV community must also fight against the related social justice issues that fuel the pandemic, and fight for the dignity, respect, and human rights of people who are most vulnerable to injustice. This is precisely why the HIV/AIDS History Collaboratory is so vital. Understanding the role of philanthropy in the social change that has been the HIV and AIDS movement is critical to the acceleration of bridging science and community to a successful conclusion of the pandemic. It is also the reason the gathering was such a special experience: it gave us the opportunity to reflect on what has been achieved, and how the philanthropic community influenced, advanced, inhibited, innovated, and contributed to the fight to end AIDS.
In June 2017, we came together at the Rockefeller Archive Center to explore the possibilities of investing time, energy and creativity toward building an archive of donor and foundation responses to HIV/AIDS. It was a remarkable and memorable experience from the moment we all gathered in the lobby of our hotel. While waiting for the shuttle, I hugged old friends and met new ones, all on a mission to find and make memories. The meeting and archival experience went way beyond my expectations. It was an incredible series of micro-opportunities to remember and to reflect, and to find intersections with the folks in the room, as well as in the documents and photos stored in that marvelous facility. As we first pulled onto the estate of the Archive Center, I had no idea what I truly expected, but I knew I was feeling an excitement that I could not have explained if asked… and then we got into the reading room.
I did expect to take some hard walks down memory lane that brought pain and suffering to the fore. I did not expect to be able to see into the future through so much of what has already happened, and through what has already been done by so many. I also had no idea that my own thoughts, dreams, and visions are so connected to professionals—historians and archivists—with whom I have no regular associations. Who knew? I think the moment I realized that our archives are in the reproductive justice funding files more so than in the HIV portfolio, my experience in the archives took on another meaning. The story of SisterLove’s funding was dependent on the investment in the intersectionality of HIV and Sexual & Reproductive Health & Rights (SRHR). This was crucial at a time when black women and other women of color were forging the Reproductive Justice framework. I found a document in the files that was a crucial pivot in whether or not the funder would invest in our work. It was a negative review, from someone I trusted deeply, and if it had been heeded, the funding would have surely changed our trajectory at that time. SisterLove has since become a key component to the growth in cross-sectional research, program development and advocacy in HIV and SRHR.
What I appreciated most about the Collaboratory was the level of gratitude for and acknowledgement of the value in my experiences—trials, tribulations, triumphs and testimonies—as part of the digging and diving that we were afforded in those rooms. Admittedly, what I appreciated least was the absence of more voices of women, people living with HIV and other folks of color who also have many stories to tell and retell. While I understood the uniqueness of my role in the overall AIDS movement and how my story plays out in the annals of AIDS philanthropy, I still felt a bit of loneliness as the only woman of color in the entire room, among all the disciplines, among all the privilege that was afforded all of us present.
I am absolutely filled with gratitude and with fortitude. The fight that was begun by so many, nearly four decades ago, continues. We will have an unbelievably BIG (no, EPIC) story to tell when this epidemic is finally over. To know that there are secured papers of projects, pictures of people, pages of philanthropy, files of funding and documents of change as our evidence, brings me great joy and great relief that no one will ever be able to forget what we have done. What I have done.
Two Generations at the Table
Marjorie Muecke, Adjunct Professor, University of Pennsylvania School of Nursing
What stands out the most about our meeting for me is the generational clustering of the participants. Basically there were two cohorts. One was the now retired foundation-based advocates who funded research on HIV/AIDS and programs to support those affected by the disease. This group forged their way through the early days of an epidemic marked by fear, avoidance, and stigma. At the time when this cohort was actively employed, the HIV/AIDS epidemic was emerging in the earliest stages of medical and epidemiologic understanding. The disease at first primarily took its toll on young men, undermining and ending their contributions to society while spreading fear and angst, before doctors began to recognize the AIDS in women and babies as well. The second cohort included actively productive mid-career academics from the humanities and social sciences, plus the founder of an HIV/AIDS service organization. Interest in gender was common to both cohorts. One awesome participant spanned the entire length of the HIV/AIDS epidemic in the United States—that is, spanned the periods of both cohorts. He also had a foot in both the philanthropic and academic camps, so was an important contributor and fact-checker.
While it is common in both foundations and universities to have staff representing a range of years’ experience and ranks in their chosen field, at the RAC workshop, the two cohorts were clustered by age as well as field, with the foundation participants being a generation older than their academic colleagues. This difference brought a variety of perspectives into the substance of the discussion, with views from each generation being shaped or constrained by the sentiments, values, and knowledge of their respective time period. Thus, while the philanthropist cohort’s perspective was retrospective, the academic-activist cohort saw through the lens of current critical theory and contemporary experience. In consequence, the workshop discourse was in large part a query into and critique of the past, insofar as the past was recalled, and possibly recreated in some undefined ways, by the philanthropic cohort.
What might help future such endeavors would be to include discussion of how the past as described by the older cohort might be informing present interpretations of the disease, as well as explicit recognition of each cohort’s social, political, and cultural contexts. For me, the workshop also provided opportunity to address the implied but largely unaddressed question: How has HIV/AIDS changed our thinking in larger society?
What Foundations Can Learn from the AIDS Pandemic
In our meeting at the Rockefeller Archive Center, scholars, grantmakers, and activists alike agreed that the history of philanthropic responses to the AIDS pandemic offers a number of lessons for foundations responding to today’s man-made and natural disasters. In light of the recent devastation inflicted by hurricanes on Texas and Puerto Rico, these lessons are all the more urgent.
Generally, foundations are not used to being first responders. Conventional wisdom, including within the funding community, is that disaster relief is the responsibility of the federal government. Yet, as we saw with the AIDS epidemic in the United States in the 1980s and more recently with Hurricanes Katrina and Maria, the federal government can be slow to respond due to homophobia, racism, and partisan politics. Moreover, foundations make decisions at board meetings, which may or may not occur immediately after a disaster or the emergence of a public health threat. It may also be true that the needs of affected communities in the immediate aftermath of a disaster don’t align with a foundation’s particular funding priorities.
One way that foundations can overcome these barriers is to think holistically about disaster relief. Whether a foundation is focused on housing, food security, mental health, inequality, or workforce development, communities that are recovering from a catastrophic event will most likely need help in these areas. Disasters and public health crises are also often triggered or exacerbated by underlying public policy issues, which presents the opportunity for foundations focused on advocacy to play a role in preventing future calamities.
Foundations should also commit to relief and recovery funding over the long term. The immediate process of rebuilding in the wake of a natural disaster is only the first step in a long process of healing. For example, in New York City almost seventeen years after 9/11, we are still dealing with mental health issues facing survivors and others affected by the attacks. Similarly, long-term survivors of HIV now face complications of aging with the virus that were unimaginable years ago. When it comes to natural disasters, funding will be needed for many years in the future, and foundations should plan to phase in grant support for the various stages of the rebuilding effort beyond initial relief.
Finally, grantmakers can strengthen their efforts by collaborating with other funders rather than working independently. For example, in the early 1980s, foundation officers in New York City and San Francisco—the two cities hardest hit by AIDS at the time—banded together to form Funders Concerned About AIDS. Their aim was to galvanize other foundation and corporate funders to support HIV-related efforts in the United States and internationally. Their message was clear: donors could find organizations active in the fight against AIDS that were aligned with their existing focus areas. Three decades later, that message can and should inform other donors looking to maximize their philanthropic impact.
Dan Royles is an Assistant Professor of History at Florida International University in Miami, Florida. He is working on a book about African American AIDS activism, titled To Make the Wounded Whole: African American Responses to HIV/AIDS, and maintains the African American AIDS History Project, a digital archive of HIV/AIDS in black America.
Beth Clement is an Associate Professor of History at the University of Utah, where she has been active in creating the Kristen Ries/Maggie Snyder HIV/AIDS Collection at the Marriott Library. She recently appeared in the documentary film Quiet Heroes, which documents Utah’s early AIDS epidemic, and is working on a book about AIDS and the politics of family.
Dázon Dixon Diallo is the founder and CEO of Sisterlove Inc., an Atlanta-based organization that aims “to eradicate the impact of HIV and sexual and reproductive oppressions upon all women and their communities in the US and around the world.” She has been an AIDS activist for over thirty years, and also serves as adjunct faculty in women’s health at Morehouse School of Medicine’s Masters of Public Health Program in Atlanta, Georgia.
Marjorie Muecke is both a community and public health nurse and a cultural anthropologist, and has conducted extensive research on women’s and children’s health in Thailand. From 1993 to 1998, she served as Program Officer in the Ford Foundation’s Reproductive Health Program, and currently teaches at the University of Pennsylvania.
Michael Seltzer has been an AIDS funding activist since 1985, when he organized the first briefing on HIV/AIDS for foundation officials. In 1986, he helped to found Funders Concerned About AIDS. He remains active in the philanthropy community, in addition to writing and teaching at Baruch College.