How do dominant ideas about HIV/AIDS get established, maintained, and proliferated? If we are in a moment of AIDS-Crisis Revisitation, as Theodore Kerr argues,[1] where the dominant narratives about HIV/AIDS are rearticulated and challenged in new ways, then this paper asks how did these narratives get produced in the first place? As a political scientist, I’m interested in the ways in which U.S. public health institutions have helped forge these dominant narratives about the crisis. While media scholars, critics, and creators have shown the way in which popular media produces a false narrative about AIDS—where helpless minorities stricken with a new disease were saved by a benevolent apolitical public health system—this paper looks at the ways in which institutions, like the National Institutes for Health (NIH) and the Centers for Disease Control (CDC), have curated their histories amidst this crisis to help produce this dominant narrative.
Within the NIH and CDC’s earliest efforts at self-historicization is the evidence of omission—a consistent and repeated effort to tell a story about AIDS that excludes the people most affected. I begin by bringing some of the latest scientific research on memory into conversation with insights on collective memory and identity. This opens into a discussion between the relationship between memory, identity, and history through an analysis of the NIH’s “In Their Own Words” online history project and the CDC’s David J Spencer Museum. This is not an attempt to find the best version of this history, but to try to evaluate the context within which these projects came into being. In doing so, we can better understand how dominant narratives were influenced by the CDC and NIH telling their institutional histories.
Viruses, Memories, and History
In a January 16, 2018 press release titled, “Memory gene goes viral,” the NIH announced that research they funded at two separate universities demonstrated a novel way in which genetic material is transferred between neurons (nerve cells). The research suggests that a gene that “play[s] a vital role in the brain’s ability to store new information,” and employs a “virus-like strategy” to transmit information between cells.[2] I’m less interested in the specifics of the biology of memory, and more interested in the way in which thinking virally, going viral, and virology have come to influence the way we think and talk about the history of how our bodies and societies work. Biologists talk about cells in terms of behaviors, structures, and information—in terms that often sound like social practices rather than biological interactions. In the cellular world of memory then, it wouldn’t be too far a stretch to understand the difference between short- and long-term memory to be one of different practices between neurons. Where short-term memory is established through one type of interaction between cells, and long-term memory is established through a different set of interactions involving repetition (knowing how to get home by driving the same route every day), context (life-changing events), and neuroplasticity (the ability for these neural connections to change over time).[3]
At the risk of generalizing and oversimplifying the distance between our brain cells and our social worlds, some of these aspects of cellular memory are useful in thinking about individual and collective memory more broadly. Centrally, the roles of repetition, context, and change seem to be at work both in our brain’s ability to create long-term memories and communities’ ability to create collective memories over generations. The connection between the individual and the collective or the short-term and the long-term has to do, in part, with 1) repetition, 2) context, and 3) surviving change.
Repetition, in terms of collective memory, happens at individual and institutional levels. Memory scholars William Hirst and Gerald Echterhoff argue that collective memory should be studied from an “epidemiological perspective,” where “collective memories are widely shared individual memories, not just socially maintained public symbols.”[4] The sharing of the interpretation of symbols, events, and experiences between people and communities over time lays the path for recognizable collective memories. Days of remembrance, saying the names of those who have passed, and annual Pride celebrations are all examples of practices of memory that use repetition to transfer memory. This works on the institutional level as well: the repetition of statistics, talking points, the churning of political bureaucracy, national holidays, annual budgets, etc. These everyday practices created the context within which dominant and counter narratives are created about the crisis.
To understand the second notion outlined above, context, within memory and historical practices, it is crucial to understand the relationship between the speaker, the audience, and the institutions that produce these memory and history projects. Why were these projects produced at the they time they were? To what ends, towards what goals, and for which audiences? For Hirst and Echterhoff, central to understanding context is the role of reception. Whose stories are transmitted and to which audiences is a crucial aspect of the transmission of shared memories. They note that, “What a speaker says will influence what a listener remembers.” The creation of collective memories requires a shared sense of reality to be received.[5] The corollary of which might maintain that what a speaker omits also influences what a listener remembers. These institutional projects often seem at cross-purposes with activists and community projects, not because one side is telling an accurate story and the other is telling a false story, but rather, because these stories are being told by people situated at different levels of power. These discrepancies in reception help explain why mainstream cultural representations of HIV/AIDS rely on institutional sources over community sources. Institutional stories about HIV/AIDS are “official” and are taken up, repeated, and reprinted by the media and serve as the main source of HIV/AIDS education in the public sphere. This version of HIV/AIDS history is buttressed by reception of these stories as “official” and works to create a collective memory of HIV/AIDS in this image, one rooted in perspectives from officials managing the disease, rather than people living with the virus.
Communities most devastated by HIV share a different perspective on this history, which is not documented within these government institutions but rather through stories, community histories, and rituals focused on remembering the crisis. The communities who confront the virus are heterogeneous, and so HIV/AIDS community histories are nested in longer struggles against poverty, racism, sexism, and homo- and trans-phobias. The community within which a person develops the virus; the place in which a person encounters the virus; and the time in which a person seroconverts create different constellations of collective memories reinforcing different shared realities with the same virus. The picture from an institutional perspective is unified by comparison, so much so that we speak of institutions having voices, when we are really talking about people in positions of power making choices. The idea of reception helps to explain why institutional memories are understood as histories and community histories are considered memories.
The third aspect I isolated above was the notion of neuroplasticity, which has become a buzzword, but I’m fundamentally interested in the idea behind the buzzword—the ability to negotiate change and remember over time. For philosopher Ross Poole, temporality is central to the ideas of memory and identity. He notes the way in which memory is central to accountability: “We could not have a practice of holding other people accountable for what they did in the past unless we also had a practice of holding ourselves accountable.”[6] Memory, then, is crucial in aspects of justice but complicated by what Poole calls “temporal complexity,” where the offending event or action takes place in the past, “but the ‘I’ who performed the action is not located in the past: it is the very same ‘I’ that exists now—and for that matter, will exist in the future…memory involves the sense of a continuant self, a subject of experience that not only exists in time, but also exists through time.”[7] This notion of “temporal complexity” is exemplified in the multiple histories of HIV/AIDS produced at institutional and community levels. The idea of a “continuant self” is not only a matter of individuals, but also of institutions. The CDC and NIH use their memory projects to help explain and historicize the choices and decisions made by individuals vested with institutional powers. HIV/AIDS has changed the course of individual lives and the large-scale priorities of public health institutions. Understanding the temporal complexity that surrounds the historicization of the virus is crucial to any push towards a more just public health system. Is the CDC of 1982 the same CDC of 2018? How has the identity of this institution changed over the course of the last few generations? How might it change in the future?
On the community level, Poole’s notion of “temporal complexity” is evident as new generations encounter the virus in different contexts than in previous decades. Media scholar, producer, and ACT-UP member Alexandra Juhasz in collaboration with Theodore Kerr, a writer and organizer, analyzed cultural representations in their 2014 piece Home Video Returns: Media Ecologies of the Past of HIV/AIDS, Juhasz highlights how mainstream popular culture presents the epidemic as a distant threat to most Americans, and emphasizes the difficulties people “inside” the epidemic have in creating a full and accurate depiction of their experiences:
Those of us inside [the epidemic] […] have never been a homogenous group. When there were more of us making media, we used to reach out separately to women, or blacks, or urban women of color as discrete communities within the HIV/AIDS community. Now, add to that, mediamakers must factor in time as a key differential, not just “identity.” That is to say, audience members who are long-with-AIDS, those who are newer to it, and those who are long-with-AIDS-activism-and-culture and those who are newer to it, or even those being invited to join for the first time.[8]
Juhasz and Kerr point to the ways in which cultural production around AIDS often fails to grasp the lived realities of the people who endured the early years of the response and fails to account for its persistence. Many of the productions essentially present AIDS as something from the past and not of the present. For Juhasz, people who are “long-with-AIDS,” and “long-with-AIDS-activism-and-culture” must operate as figures in the past and the present: “We were in the past, and we are of the past, and we want to remember and learn from the past but we are also of the present,”[9] which echoes Poole’s notion of temporally complexity. Juhasz’s re-visitation of the past is not about memorializing, she does not “want to reign in history, like it’s over and it’s mine; I want to know it better inside myself and my community so as to share it, learn from it, and use it as a catapult from which to continue to inspire, feel, and converse.”[10] As Juhasz contends, time, when one encounters the virus, is a crucial intersectional dimension that historians of the virus, in any capacity, must deal with.
I began this section by talking about the molecular structure of neurons to think about the way that we talk about memory at individual and collective levels. Structure matters in terms of how information is transmitted to new cells and new generations of people. That collective memories are particular, that they define the borders of communities, and that they denote a shared sense of reality make the sites where they are produced crucial to understanding power relations in the ongoing HIV/AIDS crisis. The central and most obvious difference between the institutional organizational structures of ACT UP and the NIH and CDC is that the bureaucracies were hierarchical and outwardly mono-vocal while the activist group was poly-vocal and decentralized.
The CDC and NIH both fall under the jurisdiction of the Department of Health and Human Services (HHS), which is led by a cabinet level officer appointed by the President and confirmed by Congress.[11] This person is responsible for creating the research and budget priorities that dictate these giant bureaucracies’ agendas, coordinating with Congress on legislation, and working with the executive branch. The other primary component to HHS is the Operating Divisions, which include the CDC and NIH, and nine other “independent” agencies that fall under the directive of HHS, such as the Food and Drug Administration and the Administration for Children and Families. These agencies are supposed to be “non-political” in the sense that their directors, researchers, and bureaucrats often serve during multiple administrations.
These agencies have each played crucial roles in the governmental management of the crisis, and they each have recognized the historical significance of HIV within their own self-historicization. In telling their story of HIV history, they are telling a larger story about the importance of the particular institution, and these histories are made to be proof of their utility.
ACT UP Oral History Project
In 2001, activists and artists Sarah Schulman and Jim Hubbard sowed the seeds of what would become a fifteen-year oral history project interviewing nearly 200 former members of ACT UP NY. The project formed after Schulman heard National Public Radio cover the twentieth anniversary of the AIDS crisis:
I had long been disheartened by the false AIDS stories told in the few mainstream representations of the crisis. […] But now that lie was being extended beyond the arts to actual history. We were being told AIDS activism never existed. Instead, the dominant culture simply “came around.”[12]
The project conducts long-form interviews with surviving ACT UP NY members, recording and transcribing the interviews, posting them online, and touring with the material across the globe. Schulman also notes that the project set out to provide data for researchers so that, “The social universe that ACT UP engaged would be cumulatively accessible to inspire and inform the future.”[13] The project looks backward and forward, and centrally at what drove people to take action, risk their bodies, careers, and lives in sharp contrast with institutional histories that forefront new discoveries and medical breakthroughs.
In providing the opportunity for people to tell their stories and actively working to disseminate those stories, the project offers an important corrective to institutional histories. It demonstrates the everyday, persistent labor necessary for marginalized populations to be heard. The interviews themselves document an array of different actors who made up the social movement, supplanting myths that ACT UP was only made up of white gay men. It investigates their biographies, their beliefs, and their infighting—and seeks to proliferate some of the stories left out of the institutional histories.
In what follows, I explore in-depth the institutional memory projects of the NIH and CDC, institutions that were the direct objects of many of ACT UP direct actions. Although social movement actors helped force these institutions to change, these actors were essentially absent from these institutions’ early self-historicization projects. What is significant for this essay is that the ACT UP Oral History archive was borne out of correcting a dominant narrative, not that it is the correct narrative.[14] That the motivation for the project was an intervention against a repeating story about governmental success in the AIDS epidemic at the twentieth anniversary of the first cases of AIDS is an important moment in the historicization of the epidemic. Understanding how the institutional side of this story was initially presented before this intervention provides insights in this history, but also on the everyday practices by people embedded in these institutions that affect our everyday lives.
In Their Own Voices
In June of 2001, the director of the Office of NIH History, Victoria Harden, PhD, created an online repository for oral histories of twenty-eight of the most prominent NIH and CDC researchers, doctors, nurses and administrators who directed the course of the institutional response to HIV/AIDS, entitled “In Their Own Voices: NIH Researchers Recall the Early Days of AIDS.” Harden was the originator of the Office of NIH history in 1986, developing the office in conjunction with the NIH’s celebration of its 100th anniversary and the twentieth anniversary of the discovery of AIDS. In addition, Harden is responsible for the creation of the Stetten Museum at the NIH, which is devoted to the tools and instruments developed and used by NIH researchers.[15]
The architecture of the NIH “In Their Own Words” project is as revealing as much of the oral history interviews. The project posts full transcripts as organizes them into five periodizations. In addition to the transcripts, the site hosts a number of published and previously unpublished reports, meetings, and talks. Finally, the online project has a small photo archive and a timeline of the CDC and NIH’s actions from 1981-1988, the period the oral history project covers.
The five periods are divided into the following categories: 1) First encounters: in this section researchers recall their first interactions with patients with the virus or reports of the first cases; 2) Tip of the Iceberg: this section explores how scientists came to realize the scope and gravity of the case; 3) Mobilizing: this section covers the ways in which the scientific community and public health apparatus mobilized to fight the virus; 4) Discovery of HIV: this section covers the development and implementation of the first blood tests for HIV in 1984-85; 5) Search for Treatments: this section details the early research for antiretroviral therapies.
The timeline presented is based on source material from doctors, scientists, and researchers who worked for these institutions. If we encounter only this version of events, we are blind to the robust social and political forces that were also at work in 1981-88, which framed these scientific discoveries and breakthroughs. The project’s scope ends in 1988, a year after the creation of ACT UP. The project also makes no mention of activist groups and organizations that existed during this period like the Gay Men’s Health Crisis (GMHC) and the People with AIDS Coalition. The only outright reference to activism is in the photo archive section under a page titled: “AIDS Activism.” Here there are four pictures with short descriptions: a picture of the AIDS Quilt, a picture of activist Larry Kramer, a picture of protesters standing behind a line of police with no date simply stating, “AIDS activists organized to promote AIDS research and to make experimental treatments more widely available,” and finally a picture of the Red Ribbon, with no mention of the Visual AIDS Artists' Caucus, the group of people who came together under the auspices of Visual AIDS, who designed and first promoted the ribbon.[16]
It isn’t simply that activists are absent from this exhibit, but more that they are not understood within this context. For example, in James Curran’s interview, then-director of the CDC, he recounts his interaction with activists. He notes that he received nearly 20,000 postcards with a target around his face:
I had an award from the Atlanta Business and Professional Guild, which was a euphemism for the Atlanta gay business community. They gave me that award in 1982, and then my staff, when I moved from one job to another, gave me a blowup of this target with my picture on it. I put that underneath that award in my office. I did that to show the award and the target postcard came from essentially the same community, and I was the same person.[17]
His assertion, made in 1998, that these two groups—the protesters and the business association—are “essentially the same community” belies the fact that he did not understand the various communities that made up the membership of ACT UP in 1990, in addition to the fact that there are multiple different communities of LGBTQ people. Put simply, there is no singular gay community, and ACT UP was made up of much more than gay men.
For Curran, the protests that centered upon the role the CDC had in defining the disease, researching and testing new therapies, and producing accessible and affordable solutions to manage the epidemic were not only misguided but misdirected. He sees no common cause, no opportunity to ally with the activists against public health funding cuts. In the interview he accords no contribution from activist mobilizations to his medical research and breakthroughs; highly trained experts, not ordinary people fighting for their lives, produce breakthroughs and advances from this vantage point. While the NIH’s oral history project may not present a fulfilling explanation for the history of the virus, it does provide essential insights into how the individuals nested within these powerful institutions made decisions and understood—or misunderstood—the people that they were tasked with serving.
What the oral history project does do well is to situate the history of the vast operation of the NIH within a larger system of governmental decision-making and authority. While the NIH and CDC hold tremendous influence, they are not all-powerful institutions; they are constrained by budget choices and research priorities influenced by which party is in power in the White House and in Congress. In this way, the oral history project helps to illuminate the complex layers of the bureaucratic state, and the ways in which these institutions were facing their own political constraints while dealing with an enduring biological threat.
The NIH’s oral history paints the picture of an institution at the behest of conflicting political demands unable to address the exponential problems created in the wake of the virus. This oral history supports Jennifer Brier’s analysis in her 2009 book, Infectious Ideas: U.S. Political Responses to the AIDS Crisis, which makes two central claims: first she demonstrates the ways in which the crisis splintered the burgeoning conservative movement in the early 1980s; secondly, she argues that a movement that started in response to government inaction “became an alternative vision of what progressive politics should and could start to look like at the turn of the twenty-first century.”[18] Taken together, Brier’s work and the NIH’s oral history project present a layered set of politics at work between U.S. public health institutions, political administration, and Congress all creating the field upon which the politics of the virus play out.
“In Their Own Words” was created in 2001 and acts as a sort of virtual time capsule, presenting a picture of how the history of the virus was understood by the NIH at one moment in time. The NIH has supplemented this project in recent years through collaborations with the National Library of Medicine in traveling educational exhibitions such as 2008’s Against All Odds: Making A Difference in Global Health, which featured exhibits on HIV/AIDS research, science, and global activism, and 2013’s Surviving and Thriving: AIDS Politics and Culture,[19] which was guest curated by Jennifer Brier and includes the voices and work of activists as an important addition to the “In Their Own Words Project.” These institutional revisitations have been influenced, in no small part, by the development of activists’ archives and stories, such as the ACT UP Oral History Project and documentaries like 2012’s United In Anger: A History of ACT UP. The scope of the crisis is much larger than any one exhibition can hold, but a better understanding of this complex and layered history is possible when these stories, archives, memory projects, and histories cross-pollinate. Without the interlocution of outside experts like Jennifer Brier, and the persistence of activists like Schulman, these self-historicization projects lack a reflective quality that helps position these stories within a larger context.
The David J. Spencer Museum, Atlanta, GA
The David J. Spencer Museum on the campus of the CDC was established in 1996 to commemorate the fiftieth anniversary of the CDC and the opening of the Olympic Games in Atlanta. Coincidentally, the museum was created the same year that antiretroviral therapy was administered as the main biomedical strategy to stem the spread of the virus. The museum recounts the history of the CDC and its work on diseases from smallpox to Legionnaires’ disease, to its anti-smoking campaign. The brochure for the museum asks if visitors have ever “wondered how CDC scientists merge old-fashioned detective work with high tech science to crack the cases of mysterious diseases?”
Unlike the NIH’s easily accessible history project, the David J. Spencer museum is only accessible after passing through security and metal detectors. From here, you are led down a spiral walkway that begins the permanent exhibit, The Story of the CDC. Beginning in 1946, the exhibit walks you through the history of the agency, beginning with fights against malaria and typhus, charting the expansion of the agency’s mandate towards broader public health issues. The final and largest section of this exhibit is dedicated to the CDC’s work in the AIDS crisis, called The AIDS Epidemic in the United States: 1981 to the Early 1990s.
The AIDS Epidemic in America mirrors the periodization of the NIH “In Their Own Words” project, moving visitors across five black and red circles that detail the discovery of the disease, the naming of the virus, early prevention strategies, the development of HIV testing, and antiretroviral drugs. At each point, the CDC is seen as leading the way; the exhibit “chronicles CDC’s historic role in investigating the first cases of AIDS.”[20] Like the NIH oral history project, the exhibit excludes the role outside actors had in the advances of the CDC. Activists are only mentioned twice in the entire exhibit. In one case, a framed HIV awareness poster is displayed from the Atlanta-based group. The second case is in a section detailing the CDC’s 1987 national awareness campaign, America Responds to AIDS, the campaign:
America Responds to AIDS, clearly had results: by 1991 more Americans were informed about HIV infection and AIDS. On the other hand, the campaign was criticized by AIDS activists for not including more direct messages to people most at-risk. Throughout the campaign, the issue of HIV infection and AIDS continued to be sensitive and controversial.[21]
This wall text is demonstrative of the how the CDC understands its relationship to the activists and to its own past. The CDC cites the success of their media campaign but misunderstands and mischaracterizes the scope of AIDS activism during that time span. Since this exhibit has been set since 1996, it lacks the addition of new generational narratives from the CDC itself as well as communities most affected by the virus and new scholarship on HIV/AIDS history.
The exhibit also misrepresents the CDC’s role in communicating the effect the epidemic was having on communities of color. In a piece called Addressing Disparities, the CDC claims:
Early in the epidemic, CDC scientists recognized that a disproportionate number of AIDS cases were among African Americans and Hispanics, a trend that continues. In 1988 CDC launched a program that supported HIV prevention efforts by national racial and ethnic minority organizations.[22]
The wall text itself raises an immediate question: if these disparities were found so early, why did it take six years to coordinate with these organizations? The CDC’s own surveillance reports—presented weekly in the Morbidity and Mortality Weekly Report, and blown up and put on display in this exhibit—did not offer a comprehensive report breaking out AIDS cases by race until 1988.[23] Again and again, the credulity of the institutional story is difficult to maintain when compared to their own archival documents and coupled with community history projects. This should not be understood as the CDC simply getting the history wrong, but as an important way of understanding how dominant narratives of the virus proliferated in the 1990s. The exhibit seems outdated, namely because it stops at the development of antiretrovirals in the mid-nineties even as the science and politics of the virus continued into new debates and controversies. Unlike the NIH project, which offers internal documents and long-form interviews, this exhibit was created in part as a celebration of the CDC itself, for its fiftieth anniversary and the Olympics. The exhibit then should be understood less in terms of what it says about HIV/AIDS than in terms of how the CDC perceives and presents its vitality and importance as a public institution through HIV/AIDS.
In Adam Geary’s 2014 book, Antiblack Racism and the AIDS Epidemic, he argues that poverty, from the vantage point of institutional actors, seems unmovable. That poverty is described as “a relatively static and suffusing environment or condition rather than the resultant of structured relations of domination and violence that have themselves organized bodily vulnerability and incidents of exposure to HIV.”[24] Geary highlights the ways poverty and racism, which can be understood as systemic and changeable issues, are the central drivers for the disproportionality of infection rates. Similarly, these institutional memory projects reflect the limits of institutional thinking alone, as this project lacks any cross-pollination with other voices, and therefore appears stale and outdated. In doing so, the permanent exhibit reads HIV as another foe defeated by U.S. public health institutions, along with polio, malaria, and smallpox.
The David J. Spencer Museum’s reach goes far beyond this singular exhibit. Each summer, young aspiring epidemiologists take courses at the museum underlining the fact that the primary purpose of the museum is to educate the public about the history of the CDC. Field trips, courses, teaching aids, etc., all disseminate from the museum and help to construct the dominant narrative around HIV/AIDS. The repetition of these stories about HIV/AIDS gets taken up not only in the ways in which these institutions educate the public, but they become a primary source for media narratives about the epidemic. The CDC’s statistics alone are a central technology in describing the scope of the epidemic to the majority of people unaffected by the crisis. The question isn’t how to make this exhibition perfect, but how to approach a version of institutional history that is self-reflective rather than self-aggrandizing.
Cross-Pollination
I began this essay by analogizing cellular memory with community memory. I argued that repetition, context, and the ability to withstand change were central to both processes. I have attempted to show how different community-based and government institutions have gone about historicizing the HIV/AIDS crisis, not to discover the final truth, or to paint one side as righteous and the other as malevolent, but rather to think about the numerous forces and the multiplicity of sides that make up this shared reality. Each of these projects came about in response to some combination of anniversaries, the fiftieth and 100th for the CDC and the NIH respectively, and in response to the media narratives presented at the twentieth anniversary of the discovery of AIDS for the ACT UP Oral History Project.
The rise in community and activist-based memory projects over the past twenty years demonstrates the ways in which this institutional story alone is cracking over time. Its explanatory value lacks utility in explaining the complicated multi-generational history of HIV. By breaking the repetition of a singular mono-vocal story, these alternative histories offer a powerful corrective to the institutional narrative, but they also offer much more insight into how to continue to live with the virus, and how to prepare for future environmental and political threats. The ACT UP Oral History Archive, along with the numerous contemporary projects aimed at chronicling this history offer a blueprint for political action and self-historicization—one that should be buttressed by cross-pollination with institutional projects like the ones I’ve outlined in this essay.
While there may be many similarities between cellular memory and collective memory, there is at least one important distinction I want to close on. Though we may be able to shepherd our individual memories, by cramming for an exam, or through mnemonic devices or performance-enhancing drugs, at some point all of our bodies break down. Our inability to remember is often one of the first signs of our bodies and brains slipping from our control. This is one of the central reasons why institutions matter. Institutions may be made of up of individuals, but they are set up to last longer than any singular person. The stories they tell matter. Whereas we can only control our individual memories so far, we have the ability to collectively decide and curate what merits remembrance, what should be repeated, and how best to convey the context of why all this remembering matters.
Ricky Price, PhD, Political Science, New School for Social Research, is currently a visiting assistant professor at Hobart and Williams Smith Colleges in Geneva, NY. His dissertation “Containing HIV/AIDS: The Viral Transformation of US Health Policy” looks at the development of HIV/AIDS policy regimes within the U.S. as a way of better understanding how institutions address the ongoing crisis. It argues that the central strategies to contain virus have led to a de-facto quarantine of marginalized people through disconnection from healthcare networks and rising inequality in health care outcomes. He received his Master’s degree at the New School, working on issues of queer youth homelessness in New York City. He has taught courses on Queer Politics, Science and Technology Studies, American Politics, and writing at Rutgers University, Yeshiva University, and Eugene Lang the New School for Liberal Arts. He was raised in Casper, Wyoming, and currently lives in Naples, NY, you can find more about his research here: www.jrickyprice.com.
Notes
1 See for example: Theodore Kerr, “A History of Erasing Black Artists and Bodies from the AIDS Conversation,” Hyperallergic, December 31, 2015, http://hyperallergic.com/264934/a-history-of-erasing-black-artists-and-bodies-from-the-aids-conversation/.
2 "Memory Gene Goes Viral," National Institutes of Health, January 16, 2018, https://www.nih.gov/news-events/news-releases/memory-gene-goes-viral.
3 Mauro Costa-Mattioli and Nahum Sonenberg, "Chapter 5 Translational Control of Gene Expression: A Molecular Switch for Memory Storage," Progress in Brain Research Essence of Memory 169 (2008): 81-95.
4 William Hirst and Gerald Echterhoff, "Creating Shared Memories in Conversation: Toward a Psychology of Collective Memory," Social Research 75, no. 1 (Spring 2008): 186.
6 Ross Poole, "Memory, Responsibility, and Identity," Social Research 75, no. 1 (Spring 2008): 267.
8 Alexandra Juhasz and Theodore Kerr, "Home Video Returns: Media Ecologies of the Past of HIV/AIDS," Cineaste Magazine (Spring 2014), http://www.cineaste.com/spring2014/home-video-returns-media-ecologies-of-the-past-of-hiv-aids/.
11 “HHS Organizational Chart,” U.S. Department of Health & Human Services, accessed May 28, 2019, https://www.hhs.gov/about/agencies/orgchart/index.html.
12 Sarah Schulman and Jim Hubbard, "ACT UP Oral History Project," May 12, 2003, http://www.actuporalhistory.org/about/statements.html.
14 Just as the institutional histories are contested within this crisis, so are community histories. For more context within activist and community history-making, see: Jih-Fei Cheng, "How to Survive: AIDS and Its Afterlives in Popular Media," WSQ: Women's Studies Quarterly 44, no. 1-2 (2016): 73-92.; Alexandra Juhasz, "Forgetting ACT UP," Quarterly Journal of Speech 98, no. 1 (2012): 69-74; Marita Sturken. Tangled Memories: The Vietnam War, the AIDS Epidemic, and the Politics of Remembering (Berkeley: Univ. of California Press, 2009); United in Anger: A History of ACT UP, directed by Jim Hubbard, produced by Sarah Schulman and Jim Hubbard (2012), film.
15 "Victoria A. Harden, Ph.D. Bio," National Institutes of Health, Office of History and Stetten Museum, June 15, 2016, https://history.nih.gov/about/harden.html.
16 "In Their Own Words: NIH Researchers Recall the Early Days of AIDS,” Office of NIH History, 2001, https://history.nih.gov/NIHInOwnWords/index.html.
17 "Oral History Interview with Dr. James W. Curran," Interview by Victoria Harden, May 19, 1998, “In Their Own Words: NIH Researchers Recall the Early Days of AIDS.” https://history.nih.gov/NIHInOwnWords/docs/page_06.html.
18 Jennifer Brier, Infectious Ideas US Political Responses to the AIDS Crisis (Chapel Hill (N.C.): University of North Carolina Press, 2009).
19 See: "Against The Odds: Making a Difference in Global Health," U.S. National Library of Medicine, April 17, 2008, https://apps.nlm.nih.gov/againsttheodds/index.cfm; and "Exhibition - Surviving and Thriving - NLM Exhibition Program," U.S. National Library of Medicine, September 2013, https://www.nlm.nih.gov/exhibition/survivingandthriving/index.html.
20 “David J. Sencer CDC Museum,” Centers for Disease Control, Accessed August 1, 2016, https://www.cdc.gov/museum/pdf/ghomuseumbrochure.pdf.
21 “The AIDS Epidemic in the United States,” Centers for Disease Control, accessed July 24, 2014, David J. Sencer CDC Museum, Atlanta, GA.
23 Richard M. Seik, M.D., Kenneth G. Castro, M.D., and Marguerite Pappaioanou, D.V.M., Ph.D., Distribution of AIDS Cases by Racial/Ethnic Group and Exposure Category, CDC Publication, SS-3 ed., Vol. 37 (1988).
24 Adam M. Geary, Antiblack Racism and the AIDS Epidemic: State Intimacies (New York: Palgrave Macmillan, 2014), 122.