South African Women Living with HIV

Judy Aulette, Floretta Boonzaier, Anna Aulette-Root

Description

Essential lessons for treating people with HIV

Based on interviews with women who are HIV positive, this sobering pandemic brings to light the deeply rooted and complex problems of living with HIV. Already pushed to the edges of society by poverty, racial politics, and gender injustice, women with HIV in South Africa have found ways to cope with work and men, disclosure of their HIV status, and care for families and children to create a sense of normalcy in their lives. As women take control of their treatment, they help to determine effective routes to ending the spread of the disease.

Acknowledgements
1. Women Living with HIV
2. An Introduction to South Africa with a Focus on the Cape Colored Community
3. Setting the Stage for Exploring a Support Group for HIV Positive Women in a Coloured Community in Cape Town
4. Marginalizing the Marginalized Through Multiple Stigmas
5. Disclosure for Better or Worse
6. Staking a Claim as Normal Through Work and Relationships with Men
7. Care Work
8. Care Work and Violent Men
9. Women's Bodies
10. Lessons for the World References
References
Index

Sujets

• Médecine
• Spécialités médicales
• Women's Studies
• African Studies
• Medical
• VIH
• Sociology
• AIDS
• General officer
• General
• Syndrome d'immunodéficience acquise
• HIV

Informations

• Publié par: Indiana University Press
• Date de parution: 13 décembre 2013
• Nombre de lectures: 0
• EAN13: 9780253010704
• Langue: English

Extrait

SOUTH AFRICAN WOMEN LIVING WITH HIV
ANNA AULETTE-ROOT, FLORETTA BOONZAIER, AND JUDY AULETTE
INDIANA UNIVERSITY PRESS
Bloomington and Indianapolis
This book is a publication of
Indiana University Press
Office of Scholarly Publishing
Herman B Wells Library 350
1320 E. 10th Street
Bloomington, Indiana 47405 USA
iupress.indiana.edu
Telephone orders 800-842-6796
Fax orders 812-855-7931
2014 by Anna Aulette-Root, Floretta Boonzaier, and Judy Aulette
All rights reserved
No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying and recording, or by any information storage and retrieval system, without permission in writing from the publisher. The Association of American University Presses Resolution on Permissions constitutes the only exception to this prohibition.
The paper used in this publication meets the minimum requirements of the American National Standard for Information Sciences-Permanence of Paper for Printed Library Materials, ANSI Z39.48-1992.
Manufactured in the United States of America
Library of Congress Cataloging-in-Publication Data
Aulette-Root, Anna, author.
South African women living with HIV: global lessons from local voices / Anna Aulette-Root, Floretta Boonzaier, and Judy Aulette.
pages cm
Includes bibliographical references and index.
ISBN 978-0-253-01054-4 (cl : alk. paper) - ISBN 978-0-253-01062-9 (pb : alk. paper) - ISBN 978-0-253-01070-4 (eb) 1. HIV-positive women-South Africa-Cape Town-Social conditions.
2. Women-South Africa-Cape Town-Social conditions.
3. HIV infections-Social aspects-South Africa-Cape Town.
4. HIV infections-Sex differences-South Africa-Cape Town.
5. Marginality, Social-South Africa-Cape Town. I. Boonzaier, Floretta, author. II. Aulette, Judy Root, author. III. Title.
RA643.86.S6A95 2013
362.19697920082-dc23
2013018843
1 2 3 4 5 19 18 17 16 15 14
Contents
Acknowledgments
1 Women Living with HIV
2 The Cape Coloured Community
3 A Support Group for HIV-Positive Women in Cape Town
4 Marginalizing the Marginalized through Multiple Stigmas
5 Disclosure for Better or Worse
6 Staking a Claim as Normal through Work and Relationships with Men
7 Care Work
8 Care Work and Violent Men
9 Women s Bodies
10 Lessons for the World
References
Contributors
Index
Acknowledgments
Anna Aulette-Root
When I teach qualitative feminist research methodology to students at the University of Cape Town, I like to emphasize the idea of treating those who participate in research as co-researchers rather than as subjects. In class there is always discussion around the problem of researchers taking credit for studies made possible by anonymous research participants, essentially co-researchers, who because of research ethics must have their identities protected. The problem of the researcher versus the researched remains unresolved. The women who participated in the research that is presented in this book were not just participants. Their words, insights, and analyses are what made this work possible. Although their names cannot be listed here or on the cover of the book, it must be acknowledged that fifteen women who live on the outskirts of Cape Town are the major contributors to this book. I would also like to acknowledge and thank the other members and facilitators of the support group, besides those whose stories appear in this book, who contributed their ideas during group discussions.
Thanks to my family, especially my mother and co-author, Judy Aulette. Thank you for supporting me in all ways and affording me the opportunity to participate in the research that is presented in this book. I am grateful for your invaluable knowledge and insight in the field and in the publication process, and, of course, for your huge contributions to this book. I could not have done this without you. Thank you to my father, Albert Aulette, for all of your support and for providing countless hours of grandchild care. Liz Aulette-Root and Olivia Rodbard-thanks to you both for insightful discussions and life planning. And thanks to my daughter, Azza Aulette-Root-Toyer, for allowing me to sit long hours at the computer and for trying hard to be good.
My supervisor, mentor, and co-author, Floretta Boonzaier-I thank you for taking me on as a student when we met in 2005. Your supervision and friendship have been instrumental in helping me shape ideas into a research project that is meaningful. Thank you for your collaboration in this book, and thank you for the knowledge and opportunities you have offered to me.
My brilliant friends and colleagues in the Men, Masculinities Violence research project at the University of Cape Town have been hugely important in enabling various research projects, including this book. Taryn van Niekerk, Jacque Matthews Mthembu, and Kim de la Harpe-I am lucky to have friends like all of you. Thanks for all the advice, favors, intellectual discussions, jokes, and thanks for letting me rely on you.
Floretta Boonzaier
I would like to reiterate acknowledgments to everyone Anna has mentioned. Most of all, I would like to thank Anna for her hard work and dedication in bringing this book to fruition. Working with you continues to be a pleasure. I am also grateful to Judy, whose input has significantly strengthened the work. I look forward to continuing collaborations.
Judy Aulette
In addition to all of the people Anna has acknowledged as essential to this project, I also thank Anna and Floretta for inviting me to participate in this project. I am grateful to Floretta for her knowledge of the field and her skill in research methods and analysis. I thank Anna for her creativity and tenacity in developing the original ideas and following them through to the final work. And I am especially proud of Anna as a colleague, a co-author, and my daughter.
From all the authors
Thank you to Dee Mortensen and her staff at Indiana University Press for taking an interest in and being patient with our manuscript. And thank you to Mark Hunter, author of Love in the Time of AIDS: Inequity, Gender, and Rights in South Africa, for all of your helpful insights and suggestions in your review of our manuscript.
SOUTH AFRICAN WOMEN LIVING WITH HIV
1 Women Living with HIV
This Book is about women living on the margins. Already pushed to the edges by systems of inequality and oppression through global politics, social class, racism, and gender injustice, they are forced even further from the center by their HIV-positive status. This book is also about women who have devised strategies to bring themselves back to normal and to challenge what is considered normal. The women whose voices we hear in the text are living with HIV in Cape Town, South Africa, an area hard hit by the HIV pandemic. By listening to their stories we are made aware of new ways to think about HIV, and, most importantly, we learn lessons that are essential for understanding HIV and determining effective routes to its demise.
HIV Is a Social Issue
At the February 2010 annual meeting of the American Association for the Advancement of Science (AAAS) in San Diego, research fellow Dr. Brian Williams, of the South African Centre for Epidemiological Modeling and Analysis in Cape Town, announced that if we could aggressively distribute antiretroviral medicines (ARVs) to everyone who is HIV positive, we could stop the virus from spreading and eventually eliminate it from the globe. ARVs reduce the viral load, the amount of HIV detectable in blood, so dramatically that those who are HIV positive become nearly noninfectious (BBC, 2010). This is a bold and apparently valid idea, but it is a goal that cannot be met if we do not take into consideration the social and political character of the human community, perhaps especially the factor of gender injustice.
The women in this book identify the social issues that go hand in hand with Williams s proposal. They tell us what also must be done in collaboration with the medical breakthroughs. From them we learn, once again, that humans are social and that the complex and contradictory web of relationships and social arrangements in which we live our lives is not easily infused with medical breakthroughs. If we are to eliminate HIV, we must pay attention to a vast array of concerns, including gender, intimate relationships, poverty, stigma, paid work, racism, care work, interpersonal violence, and body aesthetics.
Listening to marginalized women opens up a whole new (and large) box of issues to consider. Our next step must be to bring these margins to the center. We need to place real peoples experiences and ideas at the center of our thinking about policies and strategies for addressing HIV-not only in Cape Town but in all corners of the world.
The HIV Pandemic
The origin of HIV is a subject of great controversy. Even the date of when it first emerged is unknown, but physicians began to recognize and diagnose the virus among large populations in the early 1980s (Avert, 2010a). For the past thirty years, HIV has expanded rapidly throughout the world, affecting people in all nations and in all walks of life. The spread of HIV, however, has not been uniform. Some populations are significantly more vulnerable than others. The pandemic is fuelled by the forces of inequality, social exclusion, and economic vulnerability (Piot, 2001, p. 609). Sub-Saharan Africa is one area of the world where these kinds of inequities and injustices are rampant, and thus the region reportedly has the greatest proportion of people living with HIV. By 2011 an estimated 23.5 million people in the region were living with HIV (UNAIDS, 2012b).
In addition to affecting most significantly those people in the poorest regions of the world, HIV disproportionately infects those who are most vulnerable to inequality, social exclusion, and economic challenges within national populations and communities. Gender in