Voices of Resilience. Stigma, Discrimination and Marginalisation of Indian Women Living with HIV AIDS

This book presents the results of a study that examined the multiple layers of stigma and discrimination experienced by women infected and affected by HIV/AIDS in a low socio-economic area of Mumbai, India. Using exploratory qualitative methods and underpinned by the psychosocial framework and gendered perspectives the study attempts to represent the voices of affected and infected women. The book first focuses on a global overview of HIV, presents data on the Indian context and provides a synthesis of HIV in relation to stigma, discrimination and gender. The second part of the book probes the depth of impact on women's lives using the lenses of gender, economic status, the environment and physical health. The framework was further modified and extended to include threats revealed by and strengths indentified in infected and affected women. The analysis revealed that strategies to address stigma and discrimination need to address the social, cultural, religious and systemic barriers to changing attitudes. The book portrays the resilience of each woman's spirit and the unique capacity of the women to cope, to find strength, to pursue life and to maintain hope when their dreams and the dreams of their children have been shattered through HIV/AIDS. Cover......Page 1 Voices of Resilience......Page 3 ISBN: 9789460914355 (hardback)......Page 4 DEDICATION......Page 5 TABLE OF CONTENTS......Page 7 ACKNOWLEDGEMENTS......Page 10 FOREWORD......Page 12 LIST OF TABLE AND BOXES......Page 14 LIST OF ABBREVIATIONS......Page 16 GLOSSARY OF INDIAN TERMS......Page 18 EXECUTIVE SUMMARY......Page 20 HIV/AIDS IN THE WORLD AND INDIA......Page 22 STIGMA AND DISCRIMINATION AND HIV/AIDS......Page 23 THE STUDY DESIGN AND METHODOLOGY......Page 24 THE CONCEPTUAL FRAMEWORK USED FOR THE STUDY......Page 25 The Somaiya Trust and the Home-based Care Programme......Page 26 Findings of the Research......Page 27 OUTLINE OF THE BOOK......Page 28 A Global Overview......Page 31 The World’s most Diverse Epidemic the Multiple Modes of HIV Transmission in Asia and its Impact on Women......Page 32 Safe Injecting Behaviour......Page 33 Education......Page 34 Medical Interventions......Page 35 THE CONTEXT OF HIV/AIDS IN INDIA......Page 36 Economy......Page 37 Education and Awareness of HIV/AIDS......Page 38 Widespread and Entrenched Gender Inequality......Page 39 Responses to HIV/AIDS in India......Page 40 Interventions Focusing on Children and Young People......Page 41 Workplace Interventions......Page 42 THE NATIONAL AIDS PREVENTION AND CONTROL POLICY......Page 43 Highlights of Initiatives and Achievements by the NACO......Page 45 International Contribution to HIV/AIDS in India......Page 47 THE MEGA CITY OF MUMBAI......Page 48 The Unique Place of Migrants in Mumbai......Page 49 The Sex Worker Industry in Mumbai......Page 50 SUMMARY......Page 51 Some Defintions of Stigma......Page 52 THE INFLUENCE OF GOFFMAN IN UNDERSTANDING STIGMA......Page 55 Instrumental and Symbolic Stigma......Page 56 Prejudice......Page 57 Discrimination......Page 58 STIGMA RELATED TO HIV/AIDS......Page 59 International Experiences of Stigma and Discrimination......Page 60 Stigma and Discrimination in the Context of HIV in India......Page 61 Gendered Dimensions of Stigma and Discrimination for IWLWHA......Page 62 Strategies to Overcome Stigma and Discrimination......Page 64 Mental Illness Approaches to Stigma......Page 65 SUMMARY......Page 66 INTRODUCTION TO THE CHAPTER......Page 68 The Vedic Period......Page 69 Jainism and Buddhism......Page 70 Manu’s Marriage Laws......Page 71 The Arrival in India of Muslim Women and Purdah......Page 72 The British Colonial Period......Page 73 Women’s Role in India’s Independence......Page 74 Women’s Progress in India......Page 75 The Rise of the Middle Class......Page 76 Struggles of Indian Women......Page 77 Woman’s Attitude towards Herself and Society......Page 78 Men’s Attitude towards Women......Page 79 The Caste System......Page 80 Family......Page 81 Structural Considerations......Page 82 International and National Law......Page 83 SUMMARY OF THE CHAPTER......Page 84 Aim and Objectives of the Study......Page 85 The Conceptual Framework......Page 86 The Research Site: The Positive Living Program for People Living with HIV/AID (PLWHA) now Renamed Somaiya Action for HIV/AIDS Su......Page 88 The Home-based Care Program......Page 89 SUMMARY......Page 90 THE RESEARCH STUDY......Page 91 In-depth Interviews......Page 92 Participant Observation......Page 93 Maintaining a Reflective Journal......Page 94 Use of the Framework Analysis to Analyse In-depth Interviews......Page 95 Ethical Considerations......Page 96 Rigour in the Study......Page 98 SUMMARY......Page 100 VULNERABILITY ISSUES......Page 101 Nutrition......Page 102 A LIFETIME OF STIGMA AND DISCRIMINATION......Page 103 Girl’s Childhood......Page 104 Child Marriage......Page 105 Lack of Decision-making and Power......Page 106 Highly Mobile Populations......Page 107 Violence towards Women – Sexual and Physical......Page 108 Pollution and Purification......Page 109 Beliefs regarding Sex......Page 110 The Role of Alternative Health Treatments......Page 111 Personal Effects......Page 112 Financial Burden......Page 113 The Vulnerability of Children......Page 114 Families and HIV/AIDS......Page 115 The Position for Widows......Page 116 SUMMARY OF THE CHAPTER......Page 117 INTRODUCTION......Page 118 Threat 1: Overcrowding......Page 119 Threat 3: Communicable Diseases......Page 120 Threat 1: Increase in Workload......Page 121 Threat 2: Illness – Self......Page 122 Threat 3: Illness of Family Members......Page 123 Strength 2: KJ Somaiya Hospital Medical Services......Page 124 ECONOMIC RESOURCES......Page 125 Threat 2: Finances......Page 126 Strength 1a: Strong Family Values......Page 127 Strength 1b: Resourcefulness of Women......Page 128 Threat 3: Malnutrition......Page 129 Threat 4: Lack of Medicines......Page 130 Threat 1: Lack of Religious Faith and Belief......Page 131 Strength 1: Firm Religious Faith......Page 132 Threat 2: Lack of Status of Women......Page 133 Threat 4: Gender Differences......Page 134 Strength 5: Strength and Resilience of Women......Page 135 Strength 7: Healthy Beliefs......Page 136 SUMMARY OF THE CHAPTER......Page 137 Social Ecology......Page 138 Threat 1b: Negative Experiences in Health Care......Page 139 Threat 3: Discrimination in the Community......Page 140 Strength 3: Non-discriminatory Practices at the KJ Somaiya Hospital......Page 142 Threat 4: Discrimination within the Family......Page 143 Strength 4: Positive Experiences in the Family......Page 144 Threat 5: Fear of Discrimination......Page 145 Threat 7: Lack of Support Secrecy – A Double Edged Sword......Page 147 Strength 7: Support from KJ Somaiya Hospital Services......Page 148 Threat 8: Lack of Awareness of the Community......Page 149 Strength 9a: Changing Roles Bring Growth......Page 150 Strength 9b: Support from within the Family......Page 151 Threat 11: Strain on Family......Page 152 Strength 11: Duty of Care......Page 153 SUMMARY OF THE CHAPTER......Page 154 HUMAN CAPACITY......Page 155 Threat 1: Lack of Knowledge and Information......Page 156 Strength 1a: Information about HIV/AIDS......Page 158 Strength 1b: Awareness of HIV/AIDS......Page 159 Strength 1c: Confidentiality......Page 160 Strength 1e: Knowledge of Transmission......Page 161 Threat 2a: Secrecy......Page 162 Threat 2b: Social Isolation......Page 164 Threat 3: Caregiving: A Burden?......Page 165 Strength 3b: Special Cases of Caring......Page 166 Threat 4: Emotional Reactions......Page 167 Strength 4a: Passivity or Acceptance?......Page 169 Threat 5: Unresolved Grief and Loneliness, Denial......Page 170 Strength 6: Active Coping......Page 171 Threat 6: Worries about Children......Page 172 Strength 6: Future Focus......Page 173 COMMENTARY......Page 175 Mode of Transmission......Page 176 Empowerment of Women......Page 177 SUMMARY OF THE CHAPTER......Page 178 INTRODUCTION TO THE CHAPTER......Page 179 My Arrival in the Mega City of Mumbai......Page 181 The HIV Cell (SAHAS) Team at the K J Somaiya Hospital, Sion, Mumbai......Page 183 Biting the Bullet and Undertaking Interviews......Page 185 A Harsh Reality......Page 187 My First Day in the Community......Page 188 Continuing the Research Journey......Page 190 Sharing Some Concerns and Achieving My Target......Page 191 Haldi Kum Kum Celebrations......Page 192 The Eve of My Departure, Going to the Movies and a Final Interview......Page 193 PART 2: USING NARRATIVES TO PRESENT WOMEN’S LIVES......Page 194 Narrative 1 - Kamla: Caring for her Brother’s Children and Educatingthe Community......Page 195 Interpretive Commentary......Page 196 Narrative 2 – Vandana: Triumph over Mental Health and Caringfor a Sick Husband......Page 197 Interpretative Commentary......Page 198 Interpretative Commentary......Page 199 Narrative 4 – Veena: Caring for the HIV Positive Sister......Page 200 Vignette 1. The Children of Mumbai......Page 201 Narrative 6: A Day in the Life of a Housewife in Mumbai......Page 203 SUMMARY OF THE CHAPTER......Page 205 STIGMA AND DISCRIMINATION......Page 207 Women’s Vulnerability to HIV/AIDS......Page 208 Strengthening Women......Page 210 Status of Women in India......Page 211 Better Healthcare for Indian Women......Page 212 Family Cohesion in Supporting Women......Page 213 Men’s Pivotal Role in Change......Page 214 Policy Makers to Address Women’s Issues......Page 215 Human Rights for PLWHA......Page 216 Girls Education and Awareness of HIV/AIDS......Page 217 The SAHAS Programme......Page 218 Message for Policy Makers......Page 219 CONCLUDING COMMENTS......Page 220 INTERVIEW PARTICIPANTS......Page 222 REFERENCES......Page 227 ABOUT THE AUTHORS......Page 242