Data, Archives and Information in Society (DAIS) Seminar: Marika Cifor, University of Washington
Data Activism Before Datafication: HIV/AIDS Buyer's Clubs and the Politics of Treatment Information
Abstract:
In this talk, Marika Cifor will contextualize her research in critical archival studies, feminist science and technology studies, and American studies. She will share work-in-progress from her second book which examines HIV/AIDS buyer's clubs—grassroots organizations that provide information on treatment regimens and access to prohibitively expensive, experimental, or unapproved therapies—as critical sites of data activism that predate contemporary activist responses to datafication regimes. Between 1987 and 1996, over 40 buyer's clubs in the U.S. alone used bulletin board systems, personal computers, databases, phone trees and more analogue to create transnational networks facilitating treatment information, treatment access and challenging biomedical authority. These organizations developed "alternative epistemologies" that prioritized experiential knowledge over clinical expertise while exploiting regulatory loopholes through sophisticated information practices. The resurgence of similar clubs in the twenty-first century on various digital platforms to address hepatitis C, cystic fibrosis, COVID-19 and other conditions demonstrates the continued relevance of these approaches. Her talk seeks to link how data activism emerges from material conditions of crisis, with implications for understanding contemporary medical misinformation, platform resistance, and alternative information systems in global health governance.
RSVP for in-person is requested.
Featured Speaker
Marika Cifor
University of Washington
Marika Cifor is Associate Professor in the Information School and adjunct faculty in Gender, Women & Sexuality Studies at the University of Washington. She is a feminist scholar of archival studies and digital studies. Her qualitative research investigates how individuals and communities marginalized by gender, sexuality, race and ethnicity, disability, and/or HIV-status are represented and how they document and represent themselves through archives, data, and digital technologies. Her work is motivated by questions such as, what does a society’s conceptualization of and relationship to the past say about its present, and how does this shape possible futures? How are archives, data, and digital technologies implicated in the precaritization of minoritized people? And how do marginalized people document and represent their lives, identities, and social movements as a means of advancing more just and equitable worlds?
Cifor has published widely in critical information studies, gender and sexuality studies, science and technology studies (STS) and American studies on topics including affect and archives, feminist data studies, and community-based information practices. She is the author of Viral Cultures: Activist Archiving in the Age of AIDS (University of Minnesota Press, 2022), which charts how activists, archivists, and curators documented AIDS activism in the 1980s and 1990s, and the ways that contemporary activists, artists, and curators use those records to challenge the injustices that undergird digital age pandemics. Her ongoing research projects include activist information practices in response to the HIV/AIDS crisis; efforts to diversify the archives and libraries workforce; developing a Spanish-language thesaurus to increase access to LGBTQ+ information resources; and community co-design of archives and memory projects around institutional histories of disability. She is currently working on a second book about the networked data activism of buyer’s clubs.These clubs work transnationally to increase access to new, experimental, and alternative treatments, beginning with HIV/AIDS in the 1980s and extending to contemporary efforts around generic drugs to cure Hepatitis C. Cifor’s research is funded by the National Science Foundation, National Endowment for the Humanities, Institute for Museum and Library Services, and the Mellon Foundation.
Committed to building robust interdisciplinary research communities and to advancing the work of emerging critical information scholars, Cifor is active in social science and humanities research communities. As a co-PI of the Knowledge of AIDS Network, she is building an international research community of HIV/AIDS scholars in STS. She serves as Associate Editor of Special Sections for Catalyst: Feminism, Theory and Technoscience, is on the editorial board of the Homosaurus, and has served on the executive leadership committee of the Archival Education and Research Initiative (AERI). At the iSchool, Cifor is co-founder of AfterLab and is affiliated the Technology and Social Change (TASCHA) group and the Center for Advances in Libraries, Museums, and Archives (CALMA).
Cifor regularly teaches courses on gender, race and technology and archival studies. She works mentors and works closely with iSchool students in the Informatics, MLIS, and Information Science PhD programs.
Contact: [email protected]