How Social Movement Organizers Strategize in Support of Peopl
Total Page：16
File Type：pdf, Size：1020Kb
UNIVERSITY OF CALIFORNIA Santa Barbara The Care-Advocacy Paradox: How Social Movement Organizers Strategize in Support of People Living with HIV/AIDS A Thesis submitted in partial satisfaction of the requirements for the degree Master of Arts in Sociology by Mario Alberto Viveros Espinoza Committee in charge: Professor Victor Rios, Chair Professor Verta Taylor Professor Zakiya Luna Professor Erika Arenas June 2018 The thesis of Mario Alberto Viveros Espinoza is approved. _____________________________________________ Victor Rios, Chair _____________________________________________ Verta Taylor, Committee Member _____________________________________________ Zakiya Luna, Committee Member _____________________________________________ Erika Arenas, Committee Member June 2018 The Care-Advocacy Paradox: How Social Movement Organizers Strategize in Support of People Living with HIV/AIDS Copyright © 2018 by Mario Alberto Viveros Espinoza iii ACKNOWLEDGEMENTS I would like to thank my chair, Dr. Victor Rios, for his continuous support and motivating me to finish this thesis for my doctoral program; My committee members: Drs. Verta Taylor, Zakiya Luna, and Erika Arenas for their guidance and advice throughout this process. My fiancé, Alex Kulick, for his patience and emotional support throughout this process, and for making sure Moana, Nina, and Tigro didn’t distract me too much. And last, but certainly not least, my family, especially my father, Juan Espinoza, and sister, Maria Viveros, for helping keep the fire and resilience alive. Intensive research work often is presumed to be pushed ahead by the author, however, it is thanks to this supportive intellectual community that this dream of mine has come into fruition. Many thanks to all. Funding This project was partially funded by the Robert Wood Johnson Foundation’s Health Policy Research Program Fellowship. iv ABSTRACT The Care-Advocacy Paradox: How Social Movement Organizers Strategize in Support of People Living with HIV/AIDS By: Mario Alberto Viveros Espinoza 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). Abductive analysis is 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). v LIST OF TERMS AIDS – Acquired Immunodeficiency Syndrome amfAR– American Foundation for AIDS Research ATR – AID Treatment Registries DHS – Department of Homeless Services FDA – Food and Drug Administration HANPOs – HIV/AIDS Non-Profit Organizations HIV – Human Immunodeficiency Virus HPD – Housing Prevention and Development KFF – Kaiser Family Foundation LGB – Lesbian, Gay, and Bisexual LGBT – Lesbian, Gay, bisexual, and Transgender LGBTQIA+ – Lesbian, Gay, Bisexual, Transgender, Queer, Intersex, Asexual, and other queer identities NIAID – National Institute of Allergy and Infectious Diseases NIH – National Institutes of Health POC – People of Color POCWHAs – People of Color with HIV/AIDS PWHAs – People With HIV/AIDS vi TABLE OF CONTENTS Introduction ................................................................................................................................1 Research Questions ....................................................................................................................4 Currents of Institutional Domination: The Politicization of Social Actors ...............................5 Body Politics and Bio-power ................................................................................................ 6 Body Politics ..................................................................................................................... 7 Bio-power ......................................................................................................................... 8 State and Control................................................................................................................... 9 New Social Control ........................................................................................................... 9 Public Sphere’s Function ................................................................................................ 11 Social Movement Theory .................................................................................................... 12 Tensions between Institutional Theory and Social Movement Theory .......................... 13 Resource Mobilization .................................................................................................... 15 Leadership and Gender Dynamics within Social Movements ........................................ 20 Collective Identity ........................................................................................................... 25 Theoretical Conclusion: Care-Advocacy Paradox .............................................................. 28 Literature Review: Challenges and Effectiveness of Multiple Advocacy Strategies ..............31 Background of ACT UP...................................................................................................... 31 Nonprofit Advocacy Studies ............................................................................................... 34 Health Social Movements ................................................................................................... 38 Data and Methods ....................................................................................................................45 Data ..................................................................................................................................... 45 Methods............................................................................................................................... 46 Processes ......................................................................................................................... 48 Coding ............................................................................................................................. 49 The Care-Advocacy Paradox: Measuring Social Movement Advocacy using the ACT UP Oral History Project .................................................................................................................51 State Perceptions: Navigating the Care-Advocacy Paradox ............................................... 52 Violent............................................................................................................................. 53 Repressive ....................................................................................................................... 54 Oppositional .................................................................................................................... 56 State Perceptions Conclusion: Care-Advocacy Paradox ................................................ 59 Successes and Failures ........................................................................................................ 60 Collective Identity ........................................................................................................... 60 vii Resource Mobilization .................................................................................................... 69 Successes and Failures Conclusion ................................................................................. 71 ACT UP Advocacy Strategies ............................................................................................ 72 Actions ............................................................................................................................ 72 Education ........................................................................................................................ 78 Leadership ....................................................................................................................... 84 Advocacy Strategies Conclusion .................................................................................... 87 Discussion ................................................................................................................................89