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The University of Chicago Hiv Stigma and Gender THE UNIVERSITY OF CHICAGO HIV STIGMA AND GENDER: A MIXED METHODS STUDY OF PEOPLE LIVING WITH HIV IN HYDERABAD, INDIA A DISSERTATION SUBMITTED TO THE FACULTY OF THE SCHOOL OF SOCIAL SERVICE ADMINISTRATION IN CANDIDACY FOR THE DEGREE OF DOCTOR OF PHILOSOPHY BY SAMEENA VASEEM AZHAR CHICAGO, ILLINOIS AUGUST 2018 DEDICATION Dedicated to Mr. Bruce Hockman; Jack Fertig, the original Sister of Perpetual Indulgence; Sitara, and all the other people whose lives were cut short by this devastating epidemic. “It is better to speak remembering we were never meant to survive.” ~Audre Lorde ii TABLE OF CONTENTS LIST OF TABLES…………………………………………………………………...……...…….v LIST OF FIGURES……………………………………………………………………………….vi ACKNOWLEDGEMENTS……………………………………………………………………...vii ABSTRACT…………………………………………………………………………………….....x INTRODUCTION AND SPECIFIC AIMS…………………………………………..…………...1 BACKGROUND AND OVERVIEW……………………………………………………………..6 METHODS…………………………………………………………………….………………...27 STRUCTURE OF THE DISSERTATION……..…………………………………………..…....37 IMPLICATIONS FOR POLICY AND PRACTICE…………………………………………......40 REFERENCES…………………………………………………………………………………..47 PAPER 1: Sex Work, Hijra and Neocolonialism in South Asia..……………………………64 REFERENCES…………………………………………………………………………………..92 PAPER 2: The Secret Lives of Hijra: How HIV-Positive Hijra and Gender-nonconforming People in Hyderabad, India are Defining and Redefining Themselves…….…………….....97 REFERENCES……………………………………………………………………..…………..125 PAPER 3: HIV Stigma, Social Isolation and Depression among Cisgender Women Living with HIV in Hyderabad, India………………………………......129 REFERENCES…………………………………………..……………………………………..166 PAPER 4: Associations between HIV Stigma, Gender, Depression & the Utilization of HIV Medical Care in Hyderabad, India………………….….........175 REFERENCES…………………………………………………………………..……………..225 iii APPENDICES APPENDIX A: Questionnaire for People Living with HIV - English………………………….232 APPENDIX B: Questionnaire for People Living with HIV - Hindi ……………………………265 APPENDIX C: Semi-Structured Interview Guide - English ……….……….....……...………..290 APPENDIX D: Semi-Structured Interview Guide – Telugu…………...……………………..…293 APPENDIX E: Consent Form for Survey…………………………………………………....….297 APPENDIX F: Consent Form for In-depth Interview……………………………………..…....300 APPENDIX G: Certificate of Translation - Hindi…………………………………...……..…...304 APPENDIX H: Certificate of Translation - Telugu………………………………………….....306 APPENDIX I: Recruitment Flyer for Cisgender Women - English……………………………..308 APPENDIX J: Recruitment Flyer for Hijra/Transgender Women -Hindi……..…………...…...309 APPENDIX K: Recruitment Flyer for Cisgender Men -Telugu………………………………...310 iv LIST OF TABLES TABLE 1: Descriptive Statistics of Hijra Living with HIV in Hyderabad, India………………..124 TABLE 2: Descriptive Statistics of Cisgender Women Living with HIV in Hyderabad, India....165 TABLE 3: Descriptive Statistics of People Living with HIV in Hyderabad, India………..…….214 TABLE 4: Bivariate Relationships between HIV Stigma and Covariates………………….......216 TABLE 5: Associations between HIV Stigma (Zelaya, 2008) and Depression………………...217 TABLE 6: Stratified Analysis of HIV Stigma (Zelaya, 2008) and Depression………………….218 TABLE 7: Associations between HIV Stigma (Jeyaseelan, 2013) and Depression……………219 TABLE 8: Stratified Analysis of HIV Stigma (Jeyaseelan, 2013) and Depression…………….220 TABLE 9: Associations between HIV Stigma (Zelaya, 2008) and Medical Care Utilization...................................................................................................................………….221 TABLE 10: Stratified Analysis of HIV Stigma (Zelaya, 2008) and Utilization of Medical Care……………………………………………………………………………………………..222 TABLE 11: Associations between HIV Stigma (Jeyaseelan, 2013) and Medical Care Utilization………………………………………………………………………………………223 TABLE 12: Stratified Analysis of HIV Stigma (Jeyaseelan, 2013) and Utilization of Medical Care……………………………………………………………………………………………..224 v LIST OF FIGURES FIGURE 1: Model for Direct Effects of HIV Stigma on Depression…………………………..…31 FIGURE 2: Model for Direct Effects of HIV Stigma on Utilization of Medical Care…………....32 FIGURE 3: Conceptual Framework of Study…………………...…..………………………….184 FIGURE 4: Model for Moderation of Gender on the Association between HIV Stigma and (1) Depression and (2) Utilization of Medical Care………………………………………..……….197 vi ACKNOWLEDGEMENTS Six years of my life. Too many people to thank for making this labor of love possible. I first thank that universal energy around us, sometimes called God, who has helped center me and remind me why I study social inequity and why I am a social worker. There is no one who deserves more thanks than my mother, Dr. Azmath Qureshi, who raised me to pursue a life of service, to be fiercely independent, and to fight for what is socially just in this world. There are not enough reams to express thanks for my husband, Pedro Rosado, for moving repeatedly across the country so I could pursue this academic dream and for simply being my rock. I have to thank my brother, Irfan, who calls me religiously on Tuesday mornings to monitor the progress of my dissertation and, lately, to catch me up on March Madness. I want to also thank my sister Rubaina, my brother-in-law Jaques, my nephew Zayd, my niece Layla, my father, and my stepchildren Carlos and Cassandra, for loving me, regardless of how well or poorly I did in academia. I would be remiss if I did not acknowledge my dissertation committee. My chair, Jeanne Marsh, literally saved me from falling out of the doctoral program by scooping me up as her student at the lowest point in my academic career. My longest and most dear mentor in life, Jeff Draine, inspires me every day to be a better scholar and more importantly, a better person. I have learned so much from this humble and brilliant scholar. I also wish to thank my other committee members, Matthew Epperson and Harold Pollack, for commenting on one dissertation revision after another and for writing me countless letters of recommendations over the years. Thanks are also due to the doctoral chairs, Sydney Hans and Julie Henly, for all their support through several rocky moments in the doctoral program. I wish to also thank Kristen Schilt and all the lovely vii people at the UChicago Center for the Study of Gender and Sexuality for believing in my research. I would not have completed the PhD without all of your support. I would like to thank the generous funders of my dissertation research, namely the University of Chicago School of Social Service Administration, the Council on Social Work Education’s Minority Fellowship Program through the Substance Abuse and Mental Health Services Administration (SAMHSA), the UChicago Center for the Study of Gender and Sexuality, the UChicago Committee on Southern Asia Studies (COSAS), Ford Foundation, and the Foreign Language and Area Studies (FLAS) Fellowship through the U.S. Department of Education. I would also like to thank Tony Hollenback, Darren Brown, and everyone at Niles Family Services for being incredibly flexible with my academic schedule and for reminding me to be grounded in the people we serve as social workers. This project would certainly not have been possible without the assistance of Sabitha Gandham and everyone at SHARE India in Hyderabad, as well as my interview coding mate and friend in San Francisco, Jason Vaudrey. Many other people have read drafts and versions of my papers over the years. I am grateful for the support and feedback of my friends and mentors, namely Meghan Jarpe, Julian Thompson, Keith Green, John L. Jackson, Jr., Gayatri Reddy, Amer Ahmed, and Dot Fullwood. Additionally, I have received valuable feedback from scholars in Gina Samuels’ Qualitative Research seminar; in the Gender and Sexuality Studies Working Group; in the UChicago Urban Doctoral Workshop; at the Summer School for Sexualities, Cultures and Politics in Beograde, Serbia; and at Faber Residency in Catalunya, Espana. I would be lost without the support of my friends: Craig Rose, Binh Le, Sunayna Agrawal, Theresa Ick, Smita Mangla, Naomi and Rafi Jimenez, Gustavo Campos, Jen Shockey, Dana McCurdy, Hector Quinones, Dana Todd, Jay Horne and West Duncan. Thank you all for viii keeping me sane. I want to recognize all my cousins and my extended family (there are too many to name individually here!) for being unequivocally supportive through my litany of precarious life choices. And of course, I must thank my cat, Fuego, for understanding that the best way to provide comfort is without words. I love you all dearly. Finally, I must thank those postcolonial feminist scholars, who inspire and guide my work, namely Gaytri Spivak, Saba Mahmood and Sara Ahmed. When women of color aspire to achieve in academia, your thoughtful scholarship serve as guidebooks. Thank you to Thelonious Monk’s album, Straight No Chaser, which was the soundtrack to the writing of this dissertation. I must thank Soren Kierkegaard, who has taught me that happiness is not to be gained in the completion of a dissertation nor the attainment of a tenure-track Assistant Professor faculty position (though that certainly helps financially), but rather in the mundane moments that constitute this messy and wonderful life. Last and certainly not least, I thank those people who participated in this research project, who shared their fragile experiences and warm cups of chai with me, in the hopes that all our lives would be collectively improved by the sharing of their stories. “And this is the simple truth - that to live is to
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