This volume, third in a series of five on sexuality in later life, brings together the experiences of women, gay men, trans women and hijra from around the world as they describe what it means to live with HIV and navigate the often fraught areas of sex, sexuality, intimacy and relationships in later life. New drug treatments have transformed the lives and expectations of people living with HIV. In this book we hear from people living in Aotearoa New Zealand, Bangladesh, India, Kenya, Switzerland, Ukraine and the United Kingdom who are not only living with HIV but also facing stigma imposed on them by others. Too often they have learned to stigmatise themselves. Since no single approach or way of writing can capture the richly diverse experiences of people in later life living with HIV, the book includes a variety of empirical research as well as personal accounts, poetry and other forms of writing from an array of perspectives and academic disciplines. As always with HIV, we find that poverty challenges our notions about the length, expectations and quality of life.

Sex and Intimacy in Later Life

Series Editors: Paul Simpson, University of Manchester, Paul Reynolds, International Network for Sexual Ethics and Politics and The Open University and Trish Hafford-Letchfield, University of Strathclyde

Older people are commonly characterised as non-sexual, or their sexuality is considered a superficial concern in comparison to health, public services and pensions. This is despite evidence of an increase in sexual engagement amongst older people. Little academic attention has been given to this subject, or to the impact that this may have, such as increased rates of STI transmission or implications of healthy sex lives for care institutions.

This new, internationally-focused series will build on, extend and deepen knowledge of sexual practice amongst older people. Pulling together work by established and emerging scholars across a range of disciplines, it will cover the experiential, empirical and theoretical landscapes of sex and ageing.

Also available

Desexualisation in Later Life

The Limits of Sex and Intimacy

Edited by Paul Simpson, Paul Reynolds and Trish Hafford-Letchfield

Sex and Diversity in Later Life

Critical Perspectives

Edited by Trish Hafford-Letchfield, Paul Simpson and Paul Reynolds

Forthcoming in the series

Resexualising Later Life

Performances of Older Sexual and Intimate Citizenship

Edited by Paul Reynolds, Trish Hafford-Letchfield and Paul Simpson

International Advisory Board

Jill M. Chonody, Boise State University, US and University of South Australia, Australia

Mark Henrickson, Massey University of New Zealand, New Zealand

Ricardo Iacub, University of Buenos Aires, Argentina

Diana Kwok, The Education University of Hong Kong, Hong Kong

Ketki Ranade, Tata Institute of Social Sciences, India

Marjorie Silverman, University of Ottawa, Canada

Suen Yiu Tung, The Chinese University of Hong Kong, Hong Kong

Find out more at

policy.bristoluniversitypress.co.uk/sex-and-intimacy-in-later-life

HIV, SEX AND SEXUALITY IN LATER LIFE

Edited by

Mark Henrickson, Casey Charles, Shiv Ganesh, Sulaimon Giwa, Kan Diana Kwok and Tetyana Semigina

With a foreword by

OmiSoore H. Dryden

First published in Great Britain in 2023 by

Policy Press, an imprint of

Bristol University Press

University of Bristol

1–9 Old Park Hill

Bristol

BS2 8BB

UK

t: +44 (0)117 374 6645

e: bup-info@bristol.ac.uk

Details of international sales and distribution partners are available at policy.bristoluniversitypress.co.uk

© Bristol University Press 2023

British Library Cataloguing in Publication Data

A catalogue record for this book is available from the British Library

ISBN 978-1-4473-6197-8 hardcover

ISBN 978-1-4473-6198-5 ePub

ISBN 978-1-4473-6199-2 ePdf

The right of Mark Henrickson, Casey Charles, Shiv Ganesh, Sulaimon Giwa, Kan Diana Kwok and Tetyana Semigina to be identified as editors of this work has been asserted by them in accordance with the Copyright, Designs and Patents Act 1988.

All rights reserved: no part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without the prior permission of Bristol University Press.

Every reasonable effort has been made to obtain permission to reproduce copyrighted material. If, however, anyone knows of an oversight, please contact the publisher.

The statements and opinions contained within this publication are solely those of the editors and contributors and not of the University of Bristol or Bristol University Press. The University of Bristol and Bristol University Press disclaim responsibility for any injury to persons or property resulting from any material published in this publication.

Bristol University Press and Policy Press work to counter discrimination on grounds of gender, race, disability, age and sexuality.

Cover design: Robin Hawes

Front cover image: Getty/4FR

Bristol University Press and Policy Press use environmentally responsible print partners.

Printed and bound in Great Britain by CPI Group (UK) Ltd, Croydon, CR0 4YY

Contents

  • Notes on contributors vii

  • Series editors’ introduction xi

  • Foreword: Dare we hope for the erotic? HIV/AIDS, sexuality and ageing by OmiSoore H. Dryden xxi

  1. Introduction

    Mark Henrickson, Casey Charles, Shiv Ganesh, Sulaimon Giwa, Kan Diana Kwok and Tetyana Semigina 1

  2. Part IWomen
    1. 1The ‘disease of love’: trajectories of women ageing with HIV in Switzerland

      Vanessa Fargnoli 11

    2. 2Beyond the biomedical: HIV as a barrier to intimacy for older women living with HIV in the United Kingdom

      Jacqui Stevenson 28

    3. 3‘Everyone is on their own and nobody needs us’: women ageing with HIV in Ukraine

      Tetyana Semigina, Tetiana Yurochko and Yulia Stopolyanska 46

  3. Part IIGay and bisexual men
    1. 4Chemsex among gay men living with HIV aged over 45 in England and Italy: sociality and pleasure in times of undetectability

      Cesare Di Feliciantonio 67

    2. 5Freed from fear: reconstructing older gay male sexuality through PrEP – an account of a generational experience

      Jacek Kolodziej 84

    3. 6In the company of men: gay culture and HIV in Aotearoa New Zealand

      Michael Stevens 102

    4. 7Growing old with stigma: a case study of four older Chinese gay/bisexual men living with HIV in Hong Kong

      Barry Man Wai Lee 李文偉 114

  4. Part IIIIntersectional lives, multiple stigmas
    1. 8Out in Africa: facing the HIV other in Nairobi

      Casey Charles 139

    2. 9Survival of an older Bangladeshi lesbian experiencing intersectional vulnerability

      Kanamik Kani Khan 159

    3. 10Sanjeevani: early ageing and HIV survival in queer Mumbai

      Casey Charles 174

  5. Afterword

    Mark Henrickson 191

Notes on contributors

  • Casey Charles lives in Palm Springs, California, and Missoula, Montana, where he has taught queer studies, law in literature, and Shakespeare. He has published non-fiction, a collection of essays, two novels and a poetry collection. His writing draws on his experience as an activist and attorney. Undetectable, his forthcoming memoir from Running Wild Press, puts the story of an HIV-positive gay man in America next to the long-term survival narratives of positive women and men from India and Kenya. Visit his website at www.caseycharles.com.

  • Cesare Di Feliciantonio is Senior Lecturer in Human Geography at Manchester Metropolitan University, UK. For the period 2018–20 he was the recipient of a Marie Skłodowska-Curie Actions Individual Fellowship (at the University of Leicester, UK). He is a co-editor of ACME: An International Journal for Critical Geographies. His work has been published in, among others: Antipode; Cities; Gender, Place & Culture; Geoforum; International Journal of Urban and Regional Research; Social & Cultural Geography; and Urban Geography.

  • Vanessa Fargnoli is a sociologist specialising in health, HIV/AIDS and qualitative methods. Her PhD thesis (2019) was titled Living with HIV: An Invisible Condition. Trajectories of HIV-Infected Women in the French-Speaking Part of Switzerland and published as a book in 2021 under the title of INvihSIBLES. Trajectoires de femmes séropositives (Lausanne, Editions Antipodes). She is also author of the book Viol(s) comme arme de guerre (Paris, L’Harmattan, 2012) based on her Master’s thesis in health anthropology.

  • Shiv Ganesh is Professor of Communication Studies in the Moody College of Communication at The University of Texas at Austin. He studies communication and collective organising in the context of globalisation and digital technologies. He has done fieldwork in a number of countries, including Aotearoa New Zealand, India, Sweden and the United States. Current projects include a study of advocacy and voice among Indigenous people displaced by the creation of environmental reserves in India, a large-scale survey of digital interaction and engagement dynamics among global networks of activists, and an examination of transparency issues in environmentalism.

  • Sulaimon Giwa is Associate Professor and Associate Dean of Social Work at Memorial University. He has over a decade of experience in research, policy and direct practice at the community and federal levels, in health promotions, community and organisational practice in diverse communities, forensic social work and corrections and policing. His interdisciplinary and applied research programme and professional activities centralise LGBTQ2S+ experiences, intersectional stigmas and health related quality of life, and understanding of structural racism in the criminal justice system, from a critical race transformative lens.

  • Mark Henrickson is Professor of Social Work at Massey University, Auckland, Aotearoa New Zealand. He worked for many years in HIV-related healthcare. He has published extensively on gender and sexually diverse populations, and led the AfricaNZ Health study on HIV and Black African new settlers in Aotearoa New Zealand. Recent publications include the edited book Getting to Zero: Global Social Work Responds to HIV (available free from the UNAIDS website) and the monograph The Origins of Social Care and Social Work (2022). His current research explores the ethics of intimacy and sexuality in residential aged care. His PhD is from UCLA.

  • Kanamik Kani Khan is Lecturer in Social Work at the University of Essex and a registered social worker in England. He teaches both BA and MA modules, and supervises dissertations and students on placements. He was previously a lecturer at the Eastern Institute of Technology, Aotearoa New Zealand. He holds a PhD in social work from Massey University, Aotearoa New Zealand, and an MPhil in public administration from the University of Bergen, Norway. He earned his bachelor’s and master’s degrees from the University of Dhaka, Bangladesh. His research interests are human rights, healthcare, mental health, gender and sexuality, and social work issues.

  • Jacek Kolodziej completed a PhD at Massey University, Auckland, Aotearoa New Zealand, on the lived experiences of pre-exposure prophylaxis use in Aotearoa New Zealand. He holds a master’s degree in psychology. His research interests revolve around HIV prevention and sexual health along with critical analysis of the cultural contexts and the epistemological underpinnings of accumulation of knowledge of human sexuality.

  • Kan Diana Kwok 郭勤 is Associate Professor in the Department of Special Education and Counselling, The Education University of Hong Kong. Diana was a social work educator with The Chinese University of Hong Kong and a social worker and mental health counsellor at schools and mental health services. Her current research interests include sexual and transgender prejudice, experiences of LGBTQIA+ youth, and school sexuality education. Her publications appear in the Journal of Social Work Education, Children and Youth Services Review, the International Journal of Environmental Research and Public Health, Qualitative Social Work, Sex Education, the International Review of Psychiatry and the Journal of LGBT Youth, among others.

  • Barry Man Wai Lee 李文偉 is a guest lecturer in the Department of Special Education and Counselling at The Education University of Hong Kong. His primary areas of interest encompass masculinities, sexual health, sexual minorities and sexuality. Prior to joining academia, Lee was a senior social worker at the Hong Kong AIDS Foundation for over 14 years, working with people living with HIV/AIDS. Since 2014, Lee has also been a board member for Grey and Pride, a charitable organisation for older LGBTQ in Hong Kong, advocating and promoting social inclusion for the older LGBTQ community.

  • Tetyana Semigina is Professor at the Academy of Labour, Social Relations and Tourism, Ukraine, and a member of the National Qualification Agency. She has extensive experience working for various international projects. In 2011–16, Tetyana was a board member for the International Association of Schools of Social Work, serving as secretary. She has authored more than 400 publications on social work, social and health policy, and HIV/AIDS issues.

  • Michael Stevens has a Masters in Sociology and has been a freelance writer and commentator on the Aotearoa New Zealand Takatāpui/Rainbow communities for over 20 years. He has been living with HIV since 1988. He currently lives in Auckland with his fiancé and their greyhound, and works as a diversity and inclusion consultant.

  • Jacqui Stevenson is an HIV, sexual and reproductive health and rights and gender researcher and advocate with interest in feminist, participatory and creative research. Her PhD research at the University of Greenwich, UK, explored the experiences of older women living with HIV in London. She works internationally and nationally as a freelance consultant in research, training and advocacy promoting gender equality in the HIV response, and has served as a trustee of the Sophia Forum and STOPAIDS.

  • Yulia Stopolyanska is a physician and holds a Masters in Public Health Management from the School of Public Health, National University of Kyiv-Mohyla Academy, Ukraine. She has experience leading international projects to deliver quality care for viral hepatitis C and HIV/AIDS linked to accomplishing the UNAIDS 90-90-90 HIV and hepatitis C virus elimination targets. Additionally, she has comprehensive experience as a medical advisor in the pharmaceutical industry in Ukraine and abroad.

  • Tetiana Yurochko is Head of the School of Public Health, National University of Kyiv-Mohyla Academy, Ukraine. She has experience of working in international projects in the field of HIV/AIDS. In 2010–16, Tetiana worked at the National Institute for Strategic Studies of Ukraine and participated in the development of health policies in Ukraine.

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