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The Care-Advocacy Paradox: How Social Movement Organizers Strategize in Support of People Living with HIV/AIDS


Social movement organizations, such as AIDS Coalition to Unleash Power (ACT UP), have had an impact on the health and well-being of people living with HIV/AIDS (PWHAs) (Chambré́ 2012; Elbaz 1992; Gould 2009; Lune and Oberstein 2001; Wolfe 1994). These groups left their mark on the discourse surrounding HIV/AIDS and laid the groundwork for non-profit organizations to sustain the important work of making health services for PWHAs accessible (Best 2017; Brown et al. 2004; Chambré́ 1997, 1999, 2012; Chavesc 2004). These groups face uncertain times, as evidence points to decreasing funding and advocacy for communities affected by HIV/AIDS (Best 2017; Kaiser Family Foundation 2017). This thesis explores strategies deployed by ACT UP for garnering resources for PWHAs and developing leaders by analyzing interviews collected from the ACT UP Oral History Project (n = 55, 2002-2015). Deductive and grounded theory coding are used to analyze the interactional-level contexts of social movement organizers’ perceptions of the state, their successes, and how they advocated for PWHAs. The data revealed the “care-advocacy paradox” through organizers’ perception of the state as repressive while also attaining new services at the threat of violence. Future research and non-profit practices can learn from the racialized collective identity developed by the organization while garnering resources. These resources were used in service of advocacy practices that developed constituents’ access to care through legal, political, and health knowledge. This contributes to a multi-institutional politics approach to health movements (Armstrong and Bernstein 2008; Taylor and Zald 2010).

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