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- Convenors:
-
David Ribes
(University of Washington)
Stephen Molldrem (University of Texas Medical Branch)
Andrew Spieldenner (California State University San Marcos)
Marika Cifor (University of Washington)
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- Format:
- Traditional Open Panel
- Location:
- HG-14A00
- Sessions:
- Wednesday 17 July, -, -
Time zone: Europe/Amsterdam
Short Abstract:
This open panel seeks presentations that synthesize across the social, historical and sociotechnical studies of HIV/AIDS throughout the past 40+ years in North America and the world.
Long Abstract:
This open panel seeks presentations that synthesize across the social, historical and sociotechnical studies of HIV/AIDS throughout the past 40+ years in North America and the world. This panel builds upon the scholarly network building endeavor www.knowledgeofaids.net and a 4S panel in 2023. We seek papers that build on the previous year’s theme of “the archive,” and this year’s primary focus on “expertise.”
STS scholarship on HIV/AIDS has distinct phases. Prior to 1996, before effective HIV treatments became available, it was marked by widespread social and humanistic inquiry. With the advent of antiretroviral treatments, public attention waned and scholarly fragmentation occurred, particularly in the US context. The mistaken underlying rationale was that this pandemic was over (or at least well-managed). Biomedical innovation, inflected by activist engagement, did result in treatments that can enable people living with HIV to live near a full lifespan. However, antiretroviral therapies come with side effects, require resources and stability to remain in care, and are dependent on the pharmaceutical industry and strained health systems. HIV has become a long pandemic – one that is both exceptional and intersects with ongoing human rights, socioeconomic, and public health crises. We seek submissions that take a long view, bridging historical STS work with contemporary trajectories in the field, including about the nature of expertise, knowledge production, archives, and activist and community participation in technoscience. Beyond this panel, the organizers aim to foster long-term intellectual community formation around synthetic understandings of the long pandemic of HIV/AIDS.
Keywords: Social Movements and STS, Forms and Practices of Expertise, Medicine and Healthcare, Histories of science; Queer STS; Feminist STS; Pandemic; Archive; Information technology
Accepted papers:
Session 1 Wednesday 17 July, 2024, -Paper short abstract:
This paper investigates alternative medicine in ACT UP. Based on research from AIDS activist video archives, this paper explores a particular action called the “quackbusters” in 1990, exemplary of the terrain of debate over knowledge of AIDS and alternative treatments.
Paper long abstract:
This paper investigates something that has often been relegated to the “scrapheap” of history: alternative medicine in the AIDS movement. “Investigate garlic!”, a refrain of AIDS activists in the early 1990s who wanted the federal government to fund research on alternative treatments, flourished in the AZT moment and all its toxicity, yet from today’s standpoint is subject to cringe. I examine how uncertainty surrounding the future and efficacy of AIDS treatments created discursive space for debates over scientificity. Leaders in ACT UP’s alternative medicine caucus created reverse discourses. As researchers critiqued these activists for prompting “snake oil” treatments without evidence, AIDS activists in turn critiqued the scientists for denying rigorous research on garlic, Vitamin C, and acupuncture as treatments for AIDS. (Will the real scientists please stand up?) Based on research from AIDS activist video archives, this paper explores a particular action called the “quackbusters” in 1990, exemplary of the terrain of debate over knowledge of AIDS and alternative treatments.
Paper short abstract:
This presentation delves into how governments, pharmaceutical companies, NGOs, and PLWHA shape the chronicity of HIV/AIDS in Taiwan. Through ethnographic data, the temporal logics of pharma practice, data production, and digital narratives reveal the dynamics in knowledge production of HIV/AIDS.
Paper long abstract:
Since 2013, the UNAIDS "Ending AIDS by 2030" initiative has significantly influenced HIV science discourse. Innovations like rapid testing, 72-hour PEP, daily and event-driven PrEP, quarterly long-lasting injections, and the U=U campaign have underscored the importance of temporal governance of HIV/AIDS. These advances have transformed HIV/AIDS in Taiwan into a chronic condition, fostering optimism for its control and eventual elimination. This presentation considers the chronicity of HIV/AIDS at a time when the pandemic is biomedically manageable yet socially and sexually challenging. Drawing on ethnographic work conducted in Taiwan and interviews with Asian AIDS experts, this presentation unveils the layered chronicity of HIV/AIDS through three interrelated temporal logics. First, Pharmaceutical Time illustrates how global pharmaceutical firms collaborate with the Taiwanese government to secure market share while extending the patent protection of their products. It also examines how pharma practices improve previously strained relationships with NGOs. Second, Data Time considers how local LGBTQ health centers sometimes embellish data (e.g., testing numbers and HIV-positive cases) to meet the government's stringent Key Performance Index requirements. Third, Chemical Time recounts how individuals in chemsex disrupt treatment regime by resisting ART adherence just to assert personal autonomy and control over their pleasure and intimacy. By exploring the tension of these three troubling temporal logics, the presentation demonstrates how scientific communities, LGBTQ activists, governmental bodies, international pharmaceutical companies, and individuals reshape the knowledge and temporal understanding of AIDS. In Taiwan and Asia, the chronicity of HIV/AIDS is being visualized and narrated in unprecedented ways.
Paper short abstract:
In my presentation, basing on my research in Germany (2023) and France (2021), I will focus on the building of the PrEP and TasP literacy among GBMSM and trans* migrant and refugee communities through the sexual health activism of HIV/AIDS-prevention and LGBTQ+ organisations.
Paper long abstract:
New biomedical technologies, such as pre-exposure prophylaxis (PrEP) and treatment as prevention (TasP), have become scientifically established to be highly effective HIV/AIDS prevention methods. In a radical shift, PrEP and TasP may be seen as providing biomedically informed contexts in which the spectre of HIV is removed from male-to-male and people living with HIV are destigmatized. To work and to bring (social) change, PrEP and TasP, being products of modern biomedical science, have to be "translated" into discourses and languages spoken by the communities that may benefit from using them.
In my presentation, basing on my research in Germany (2023) and France (2021), I would like to focus on PrEP and U=U activism of HIV/AIDS-prevention and LGBTQ+ organisations towards GBMSM and trans* migrants and refugees. PrEP and U=U literacy is part of HIV literacy which is defined as “[t]he ability and skills of individuals and communities that means they are equipped and willing to engage with HIV, have access to and understand HIV information, able to apply learned HIV information within their sexual practice and able to engage with others about this HIV knowledge and related sexual practices” . Thus, it is essential that biomedical discourses of transnational actors (e.g., WHO, ECDC) are translated within the local context, with socio-cultural, ethnic, economic, migrant factors taken into account, by place-based institutions and community-based organizations into languages that could be understood by local GBMSM and trans* communities.
Paper short abstract:
Materialist virology is a queer and trans of color STS method for historicizing virus knowledge. This paper uses it to study the foundational “tobacco mosaic virus” and ask: How have settler colonial plantation economies shaped the emergence of HIV/AIDS and COVID-19 and global medical apartheid?
Paper long abstract:
In the 1980s, US-based HIV/AIDS activists initiated the slogan of “drugs into bodies.” By the 1990s, queer radical thinking and politics transformed their call into “healthcare not warfare.” These activists’ agenda became explicitly anti-capitalist and increasingly anti-war with the aim of building global South solidarity. COVID-19 has prompted present-day activists to build on HIV/AIDS activists’ intersectional and internationalist movements to redouble coalitions and redistribute care for collective survival.
To further intersectional analyses and internationalist solidarities, this paper historicizes the knowledge generated about viruses by using a queer and trans of color STS approach it terms materialist virology. It demonstrates materialist virology, as a method and a historical study of virology by revisiting its emergence, beginning with Dutch botanist Martinus Beijerinck’s late nineteenth-century conceptualization of the inaugural “tobacco mosaic virus” (TMV). Materialist virology is deployed to examine archival scientific literature and media produced on tobacco—a plant indigenous to the Americas— as a model for plantation agriculture and industrial monocropping which together laid the foundation for the twentieth-century US-led field of virology and racial capitalism. TMV presents a blueprint for today’s mass extraction, state-sponsored and military imperial violence, ecosystem dismantle, and globalized crises. What is the relationship between historical tobacco plantation agriculture to viral disease emergence among humans and other animals? Between the racialized labor of settler colonial plantation agriculture and the global medical apartheid maintained by policing and military violence in the age of HIV/AIDS and COVID-19?
Paper short abstract:
In this presentation, I will share a series of images from Turkish newspapers (1985-2002) and discuss how the media, politicians, and doctors invented the Turkish patient-zero whose dead body was washed with bleach before he was wrapped in plastic bags and encased in concrete.
Paper long abstract:
“Representation,” writes Stuart Hall (1982, 64), “is a very different notion from that of reflection. It implies the active work of selecting and presenting, of structuring and shaping: not merely the transmitting of already-existing meaning, but the more active labor of making things mean.” This explains how the media representation, especially the printed press, has played an enormous role in the making of HIV/AIDS epidemic. This is particularly true in a country such as Turkey where government’s strategic ignorance and the manufactured silence made sure that the public turned to the press to be informed about HIV announced to be “the plague of the era.” There are no oral histories, no books, no articles, or no exhibitions that would help create an archive of the HIV/AIDS epidemic in Turkey. There are, nevertheless, a plethora of newspaper articles and images through which we can uncover the not-so-scientific meanings attributed to HIV and write the history of Turkish HIV epidemic, while creating a “simulacrum” of an archive. This presentation will focus on the nationalist, heteronormative, sexist, and xenophobic representations of HIV/AIDS which took their power and authority from blaming the epidemic on a wide range of others, varying from Western queers to Eastern European prostitutes to tourists. In this presentation, I will share a series of images from Turkish newspapers (1985-2002) and discuss how the media, politicians, and doctors (1) invented the Turkish patient-zero whose dead body was washed with bleach before he was wrapped in plastic bags and encased in concrete; (2) put the responsibility of the epidemic on the shoulders of Eastern European sex workers and women tourists, who were likened to “ticking bombs ready to explode” and “a danger larger than the Chernobyl explosion”; (3) and, used the HIV epidemic to construct and strengthen the figure of “virtuous Turkish women” whose code of honor was deemed sufficient to protect Turkey from HIV.
Paper short abstract:
This paper analyzes US initiatives to end HIV/AIDS epidemics. I develop the concept of a “sanguine governmentality” to describe naively optimistic strategies for managing HIV that emphasize using routine blood work data reported to public health surveillance systems to pursue unrealistic targets.
Paper long abstract:
This paper analyzes the implementation of recent US federal HIV/AIDS initiatives to develop the concept of a “sanguine governmentality.” This framework draws on the Foucauldian framework of governmentality and theories of datafication to describe strategies for managing epidemics that use routine clinical blood work data reported to public health agencies to pursue unrealistic population health targets. I draw on analyses of policy documents and ethnographic fieldwork in Atlanta’s HIV/AIDS safety net from 2016-2019. I have observed actors enthusiastically promoting datafied public health surveillance systems as vehicles for pursuing unachievable HIV viral suppression targets, given the country’s inequitable healthcare system. Surveillance data are used for epidemic response, including for resource allocation, epidemiology, and outreach to people living with HIV. I call this strategy for managing HIV “a sanguine governmentality” because it is rooted in the naïvely optimistic–or sanguine–promise of a future that never arrives: the “End of AIDS” or “Zero” new infections. Those goals are so utopian that their failure is written into their pursuit. In this future-always-deferred, every person living with HIV is incorrectly imagined as being able to access medical care, physiologically capable of becoming virally suppressed, and personally able to remain adherent to medications. However, datafied strategies for governing HIV are also “sanguineous,” as in “of, relating to, or containing blood,” because they rely on routine clinical blood tests reported to public health. Sanguine governmentalities offer a useful lens for other cases in the governance of biosocial problems that mobilize data systems, blood tests, and forms of optimism.