Who Gets a Say? Women and the AIDS Crisis

Abstract

The early 1990s saw the mobilization of women with HIV, healthcare providers, and large activist groups around the CDC definition of AIDS. This mobilization focused on the exclusion of women’s symptoms and illnesses in the diagnostic definition. The implications of this restrictive definition were most visible in low-income communities, among women, and people of color due to lack of access to healthcare, pre-existing conditions, and relative exclusion from medical research and testing processes. This case studies the women who organized to affect change and the role of specialized activists in advocating for marginalized groups. This case focuses on the activist efforts of Katrina Haslip of ACE, Theresa McGovern of the HIV Law Project, and the ACT UP Women’s Caucus. Research for this case draws upon pamphlets from organized activist groups, transcripts of ACT UP interviews, lectures from activists about the events of the early 1990s, as well as legal journals and women’s healthcare literature. This case outlines the processes by which women have enacted change in the HIV/AIDS activist movement, while addressing the challenges they face surrounding political and medical bureaucracy, lack of political will, and bogged down activist networks. The paper concludes that the most important component in activism is the inclusion of those most affected by the struggle, which was difficult due to the devastating nature of AIDS. In the face of the AIDS crisis, Katrina Haslip and Terry McGovern had to balance political gains versus the immediate needs of affected communities.