Histories of HIV/AIDS in Western Europe: New and regional perspectives

By Manchester University Press

The early 2020s marked the fortieth anniversary of the first confirmed cases of AIDS and a new wave of historical interest in the ongoing epidemic. This edited collection showcases some of this exciting new work, with a particular focus on less well-known histories from western Europe. Featuring research from social, cultural and public historians, sociologists and area studies scholars, its eight chapters address experiences, events and memories across regions and nations including Scotland, Wales, Italy, Norway and the Netherlands, paying careful attention to often-overlooked groups including drug users, sex workers, nurses, mothers and people in prison. Offering new perspectives on the development and implementation of policy, the nature of activism and expertise and which (or whose) histories are remembered, it is essential reading not only for historians of health but also for all those working in HIV/AIDS studies.

• Language: English
• Publisher: Manchester University Press
• Release date: Aug 9, 2022
• ISBN: 9781526151209

Book preview

Histories of HIV/AIDS in Western Europe

SOCIAL HISTORIES OF MEDICINE

Series editors: David Cantor, Elaine Leong and Keir Waddington

Social Histories of Medicine is concerned with all aspects of health, illness and medicine, from prehistory to the present, in every part of the world. The series covers the circumstances that promote health or illness, the ways in which people experience and explain such conditions, and what, practically, they do about them. Practitioners of all approaches to health and healing come within its scope, as do their ideas, beliefs, and practices, and the social, economic and cultural contexts in which they operate. Methodologically, the series welcomes relevant studies in social, economic, cultural, and intellectual history, as well as approaches derived from other disciplines in the arts, sciences, social sciences and humanities. The series is a collaboration between Manchester University Press and the Society for the Social History of Medicine.

Previously published

Migrant architects of the NHS Julian M. Simpson

Mediterranean quarantines, 1750–1914 Edited by John Chircop and Francisco Javier Martínez

Sickness, medical welfare and the English poor, 1750–1834 Steven King

Medical societies and scientific culture in nineteenth-century Belgium Joris Vandendriessche

Vaccinating Britain Gareth Millward

Madness on trial James E. Moran

Early Modern Ireland and the world of medicine Edited by John Cunningham

Feeling the strain Jill Kirby

Rhinoplasty and the nose in early modern British medicine and culture Emily Cock

Communicating the history of medicine Edited by Solveig Jülich and Sven Widmalm

Progress and pathology Edited by Melissa Dickson, Emilie Taylor-Brown and Sally Shuttleworth

Balancing the self Edited by Mark Jackson and Martin D. Moore

Global health and the new world order Edited by Jean-Paul Gaudillière, Claire Beaudevin, Christoph Gradmann, Anne M. Lovell and Laurent Pordié

Accounting for health: Calculation, paperwork and medicine, 1500–2000 Edited by Axel C. Hüntelmann and Oliver Falk

Women’s medicine Caroline Rusterholz

Germs and governance: The past, present and future of hospital infection, prevention and control Edited by Anne Marie Rafferty, Marguerite Dupree and Fay Bound Alberti

Leprosy and identity in the Middle Ages: From England to the Mediterranean Edited by Elma Brenner and François-Olivier Touati

Patient voices in Britain, 1840–1948 Edited by Anne Hanley and Jessica Meyer

Medical histories of Belgium: New narratives on health, care and citizenship in the nineteenth and twentieth centuries Edited by Joris Vandendriessche and Benoît Majerus

Histories of HIV/AIDS

in Western Europe

New and regional perspectives

Edited by

Janet Weston and Hannah J. Elizabeth

MANCHESTER UNIVERSITY PRESS

Copyright © Manchester University Press 2022

While copyright in the volume as a whole is vested in Manchester University Press, copyright in individual chapters belongs to their respective authors.

Electronic versions of chapters 3, 4, 6, 7 and 8 have been made freely available under a Creative Commons (CC BY-NC-ND) licence, thanks to the support of the following: the Wellcome Trust (Chapter 3 under grant number 103341/ Z/13/Z, Chapter 4 under grant number 222230/Z/20/Z and Chapter 6 under grant number 219747/Z/19/Z); Humanities in the European Research Area (Chapter 7 under grant HERA.15.093); and NWO, the Dutch Research Council (Chapter 8). This permits non-commercial use, distribution and reproduction provided the editor(s), chapter author(s) and Manchester University Press are fully cited and no modifications or adaptations are made. Details of the licence can be viewed at https://creativecommons.org/licenses/by-nc-nd/4.0/

Published by Manchester University Press

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www.manchesteruniversitypress.co.uk

British Library Cataloguing-in-Publication Data

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

ISBN 978 1 5261 5121 6 hardback

First published 2022

The publisher has no responsibility for the persistence or accuracy of URLs for any external or third-party internet websites referred to in this book, and does not guarantee that any content on such websites is, or will remain, accurate or appropriate.

Cover image: Fred Guiot, ‘Europe against AIDS’, advertisement by CRIPS, c. 1990. Wellcome Collection.

Typeset by Newgen Publishing UK

Contents

List of figures

List of tables

List of contributors

Foreword – Virginia Berridge

Acknowledgements

Abbreviations

Introduction – Janet Weston and Hannah J. Elizabeth

1Selling sex in the age of HIV/AIDS: activism, politics, and medicine in Norway, 1983–90 – Ketil Slagstad and Anne Kveim Lie

2Drug criminalisation, the Catholic Church, and the 1988 founding of a Rome AIDS care centre – Brian DeGrazia

3Responding to HIV/AIDS in European prisons, 1980s–2000s – Janet Weston

4Nursing a plague: nurses’ perspectives on their work during the United Kingdom HIV/AIDS crisis, 1981–96 – Tommy Dickinson, Nathan Appasamy, Lee P. Pritchard, and Laura Savidge

5A phoney war? Health, education, and popular responses to HIV/AIDS in Wales, 1983–2003 – Daryl Leeworthy

6Recovering mothers’ experiences of HIV/AIDS health activism in Edinburgh, 1983–2000 – Hannah J. Elizabeth

7The European HIV/AIDS Archive: building a queer counter-memory – Agata Dziuban, Eugen Januschke, Ulrike Klöppel, Todd Sekuler, and Justyna Struzik

8Pandemics and national pride: collecting and curating the history of HIV/AIDS – Manon S. Parry

Index

Figures

1.1‘Jeg har aids’, Dagbladet, 29 June 1985. Reproduced with permission from Dagbladet

1.2‘Jeg er en levende dødsmaskin’, Dagbladet, 6 August 1985. Reproduced with permission from Dagbladet

1.3‘Kjøpte sex av aidshore’, VG, 20 May 1988. Reproduced with permission from Verdens Gang AS

1.4‘Du kan kjøpe deg AIDS-smitte’, Norwegian Directorate of Health, 1987. Reproduced with permission from the Norwegian Directorate of Health, copyright ScanPartner/Anneks RRA6/Helsedirektoratet

1.5‘Du kan kjøpe deg AIDS-smitte’, Norwegian Directorate of Health, 11 February 1987. Reproduced with permission from the Norwegian Directorate of Health, copyright ScanPartner/Anneks RRA6/Helsedirektoratet

2.1‘AIDS: Non si vede ma sta crescendo’, Italian Health Ministry, 1990

2.2‘AIDS: Non si vede ma sta crescendo’, Italian Health Ministry, 1990

4.1Sean Pert and Darren, circa 1993/4. From the private collection of Sean Pert, reproduced with his kind permission

4.2David (lying down) and Eric (sitting) at their home in Boston, 1986. Reproduced with permission by Sage Sohier, from her series ‘At Home with Themselves: Same-Sex couples in 1980s America’

8.1First panel of the exhibition AIDS in Amsterdam, 1981–1996, courtesy of exhibition designer Jasper van Goor and Amsterdam City Archives

8.2Last panel of the exhibition AIDS in Amsterdam, 1981–1996, courtesy of exhibition designer Jasper van Goor and Amsterdam City Archives

Tables

5.1HIV-positive results in Wales, 1984–94

5.2HIV-positive individuals resident in Wales, 1997–2007

Contributors

Nathan Appasamy is a King’s Undergraduate Research Fellow in the Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care at King’s College London.

Virginia Berridge is Professor of History and Health Policy at the London School of Hygiene & Tropical Medicine. She was co-director of the AIDS Social History Programme from 1988 to 1994, and later the director of the Centre for History in Public Health. She is the author of AIDS in the UK: the making of policy, 1981–1994 (1996) and has published many other books and articles on public health and health policy, including Demons: our changing attitudes to alcohol, tobacco and drugs (2013) and Public health: a very short introduction (2016).

Brian DeGrazia is an independent scholar and translator. He holds a PhD in Italian Studies from New York university, where he wrote a dissertation about HIV/AIDS, the media, and biopolitical thought in Italy. In addition to his research on HIV/AIDS, Brian has published articles about academic labour and doctoral education in outlets such as Inside Higher Ed and the Los Angeles Review of Books.

Tommy Dickinson is a Reader in Nursing Education and Head of the Department of Mental Health Nursing in the Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care at King’s College London. In 2018, he was appointed as the Endowed Talbott Visiting Professor of Nursing at the University of Virginia School of Nursing. Dr Dickinson is a Fellow of the American Academy of Nursing and a Fellow of the European Academy of Nursing Science.

Agata Dziuban is a sociologist, outreach worker, and Assistant Professor at the Institute of Sociology at the Jagiellonian University in Krakow. Her research projects focus on sex workers’ self-organisation in Europe, the working conditions of migrant sex workers in Poland, and the making of HIV-related policies. Together with Todd Sekuler, she worked on European-level research within the ‘Disentangling European HIV/AIDS policies: activism, citizenship and health’ (EUROPACH) project.

Hannah J. Elizabeth is a historian of emotions and health working at the London School of Hygiene & Tropical Medicine on the Wellcome Trust-funded project ‘What’s Love Got To Do With It? Building and Maintaining HIV-Affected Families through Love, Care and Activism in Edinburgh, 1981–2016’.

Eugen Januschke studied mathematics and holds a doctoral degree in philosophy. He is an activist in the field of AIDS remembrance. His current research, which is based out of the Institute for European Ethnology at Humboldt-Universität zu Berlin, focuses on the history of AIDS activism in Germany.

Ulrike Klöppel holds a doctoral degree in sociology. Her research focuses on the medicalisation of intersex and gender transition in the German Democratic Republic, gender and queer history, and the history of psychiatry. Her ongoing research project at the Humboldt-Universität zu Berlin is about the history of AIDS activism in Germany.

Daryl Leeworthy is the Rhys Davies Trust Research Fellow at Swansea University and the author of several books on modern Britain, including A little gay history of Wales (2019) and Labour country: political radicalism and social democracy in South Wales, 1831–1985 (2018), as well as numerous articles and chapters on the social, political, and queer history of modern Britain.

Anne Kveim Lie is a physician and historian, working as an Associate Professor in Medical History at the Department of Community Medicine and Global Health at the University of Oslo. She is particularly interested in how diseases, medical practices, and medical technology come into being. Among her research interests are the history of (bio)medicalisation, the history of reproduction, and the history of infectious diseases including syphilis and antibiotic resistance.

Manon S. Parry is Professor of Medical History at the Free University Amsterdam and Senior Lecturer in American Studies and Public History at the University of Amsterdam. She was previously curator in the History of Medicine Division of the National Library of Medicine, Maryland. She is co-editor of Women physicians and the cultures of medicine (Johns Hopkins University Press, 2008), winner of the Archivists and Librarians in the History of the Health Sciences Publication Award for Best Print Publication in 2012, and author of Broadcasting birth control: family planning and mass media (2013). Her current research project is ‘Human curiosities: expanding the social relevance of medical museums’.

Lee P. Pritchard is an English teacher at Woodford County High School for Girls in London.

Laura Savidge is a Nursing student in the Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care at King’s College London.

Todd Sekuler holds a master’s in Public Health and a doctoral degree in European Ethnology. Together with Agata Dziuban, he has been conducting research on HIV/AIDS policy worlds at the European level as part of the transnational research project ‘Disentangling European HIV/AIDS policies: activism, citizenship and health’ (EUROPACH).

Ketil Slagstad is a physician and former Editor of the Journal of the Norwegian Medical Association. His research interests include the history of social medicine, the history of biomedicalisation, and the history of HIV/AIDS. He is undertaking a PhD in the history of science and medicine, addressing the emergence of transgender medicine in Scandinavia in the second half of the 20th century.

Justyna Struzik received her PhD in Sociology from the Institute of Sociology at Jagiellonian University in Kracow with the thesis ‘Queer movements in Poland’. Between 2016 and 2019 she was a postdoctoral researcher on the project ‘Disentangling European HIV/AIDS policies: activism, citizenship and health’ (EUROPACH). She is the co-author of Różnym głosem. Rodziny z wyboru w Polsce (In different voices: families of choice in Poland, 2017) with Joanna Mizielińska and Agnieszka Król, and the author of Solidarność queerowa. Mobilizacja, ramy i działania ruchów queerowych w Polsce (Queer solidarity: mobilisation, frames and actions of queer movements in Poland, 2019).

Janet Weston is an Assistant Professor at the London School of Hygiene & Tropical Medicine. Her research, funded by the Wellcome Trust, addresses histories of health, medicine, and law, with a particular focus on mental illness, prisons, crime, ethics, and sexuality. She is the author of Medicine, sexual crime, and the penal system in England, 1919–1960s (2018).

Foreword

Virginia Berridge

History has played a significant role in the understanding of and response to HIV/AIDS. In the early days, back in the mid-1980s, it was history and AIDS. How could history feed into our understanding of this looming epidemic in the present? How could we use responses to past epidemics or to sexually transmitted disease to help provide blueprints for the present to emulate or to avoid?

Then came the idea that the advent of HIV/AIDS was a memorable historical event in its own right. History of AIDS replaced history and AIDS. The AIDS Social History Programme (ASHP) at the London School of Hygiene & Tropical Medicine (LSHTM), of which I was co-director, began in the late 1980s. Funded by the Nuffield Trust (then the Nuffield Provincial Hospitals Trust), it was set up to study ‘history in the making’ – to study over a five-year period of funding (lavish in those days) events which had yet to happen when the research programme began. That was an unusual situation for an historian to find herself in. Even now, it is uncommon for people to consider the study of such events as ‘history’. At the time, phrases such as ‘journalist history’ or ‘the first draft of history’ were used to denote the difficult terrain our programme was traversing. But of course, we also had the opportunity, situated in a leading UK school of public health, to have a ringside seat as events unfolded, with access to key players in policy and research terms. And historical analysis and awareness is indeed possible, even if one is studying the events of the day before.

At that time, too, there was an archival consciousness. People were aware that they were living through life-changing events and that memories might soon fade. What would be kept to ensure that future generations knew what had happened, what people had lived through? The ASHP had a consultant archivist, Janet Foster, who early on produced a brief pamphlet (before the days of the internet) listing relevant organisations and what they had kept, but also with an advisory function, addressing what to focus on keeping and what was less central.¹

But then came change. As Janet Weston and Hannah J. Elizabeth comment in their Introduction, interest in HIV/AIDS died away as the predicted epidemic in Western countries did not materialise, as treatments came on-line, and as the imagery of chronic disease replaced that of epidemic catastrophe. When my book on AIDS policy-making was published in 1996, it was greeted with sharp-eyed cynicism in one interview with a leading health journalist. Hadn’t it all been a gigantic fuss about nothing, he asked, a complete waste of money? Gay men’s propaganda had diverted government away from the real issues. Why had my book not taken that line? This was an unpromising time to launch a book which did not replicate the then-received opinion but, rather, looked at how the British government had responded in all its complexity to a major health crisis, at how the apparent Thatcherite revolution in government had encompassed a liberal policy response strangely at odds with its public persona.² That type of history was certainly off the agenda in the mid-1990s.

Now, as our editors have reminded us and the contents of this book demonstrate, there is a revival of historical interest. Years have passed and a historical approach is more acceptable. The contents of the book show that this is the case; there is also a growth in interest in television and radio series focused on HIV/AIDS. That historical interest still has a particular focus, which is primarily on gay men and their experience of the epidemic. Drug users and haemophiliacs are of relatively little interest in that context; they remain ‘hidden from history’. A television researcher who approached the LSHTM archive and myself for access to the interviews which I had done as part of the ASHP told me she was not interested in those groups. The idea of ‘legitimation through disaster’, the process which took place for gay men through HIV/AIDS, had no such enduring impact for them. This is in part because, in their case, the epidemic has not ended, as demonstrated by the Infected Blood Inquiry in the UK and its evidence and the ongoing debates round harm reduction tactics in Scotland. So it is good to see drug users and prison inmates feature in this book. What is remembered and what is not, as our editors comment, is a partial matter.

This book highlights the regional and the local in its study of HIV/AIDS. This was always a feature of the response, right from the start. My interviews from the 1980s and 1990s have contemporaneous material on the local response in Exeter, in Cardiff, in Brighton, and in Edinburgh. The following is a flavour of the Cardiff recollection.

We wanted to establish a helpline because we felt that if we didn’t do it, as members of Friend, then some other organisation may take it on-board and they may not be as sort of understanding and sympathetic to the issue as we felt we were with Friend. I remember we contacted Powys Health Authority who told us that it wasn’t a problem because gay homosexuals didn’t exist in Powys. We were up against that attitude and that is with the people, ‘it is not a problem, it is not going to happen here, therefore go away, we cannot fund you’. Then on the last day of the financial year, it was 31 March 1986, I had a phone call from Bob Goosy, the Health Promotion Officer, who said ‘get down here quick, I’ve got two grand left, get it into Friend’s account today or you lose it’. So he had managed to get two thousand pounds for us, which we put in Cardiff Friend’s account for the purpose of starting Cardiff AIDS Helpline. You see the Health Authority was saying ‘you start the Helpline and then we will see how it goes and then we will fund you’. And we were saying ‘no we won’t establish the Helpline until you fund us’, because we felt that once we established the group, because we were funding Cardiff Friends out of our own pockets. There were about fifteen members of Friend and we were giving five pounds a month towards the running costs of the group, so we were always in dire financial hardship. We were using a room in this hospital, one room that they gave us rent-free.³

Such actions linked into activism, and into national but also international networks, as the editors remind us. One aspect of the early response to HIV/AIDS was indeed this internationalism. In part this was shown through the traditional international organisations such as the World Health Organization (WHO) and later the Joint United Nations Programme on HIV/AIDS (UNAIDS), disseminating an international ethic of non-discrimination and human rights. But there were also international activist networks which pre-dated HIV/AIDS, as in the case of drug users, which is emphasised in this collection. There was also a strong interest early on in the comparative study of policy towards HIV/AIDS. A raft of books appeared in the early 1990s, contrasting the policy response in different countries, a focus which was less obvious as time went on.⁴ Overall, in fact, a shift can be discerned away from policy and towards the cultural aspects of HIV/AIDS, which were also significant in the early days.⁵ The differences between countries are one key feature of this book, with an emphasis on countries in Western Europe. This reflects pre-Brexit academic study in the UK, when European networks were in place and comparisons were possible. The focus had perhaps moved elsewhere after the 1990s, with HIV/AIDS in African countries and in Southeast Asia receiving more academic attention. The Western European perspective will now be more difficult to maintain, as the focus of research and funding moves.

This book’s gestation has weathered the advent of Covid-19 and the impact that it has had on society. It is too early to say what the long-term cultural impact of Covid will be, but there are some interesting reflections and comparisons with the long-term response to HIV/AIDS. Quarantine and punitive social restrictions are so very different from the emphasis on human rights and a non-punitive response which marked many official responses to HIV/AIDS. Covid has been a more traditional public health issue, with these very long-standing methods of coercive control centre stage. Yet, other issues which could not be spoken of in the 1980s have been openly discussed in relation to Covid. Race was deliberately downplayed in official public health work in the case of HIV/AIDS in the UK, for fear of a social backlash. Thirty or more years on, racial disparities in infection have been explicitly acknowledged for Covid. The local has been important for both, although in the 1980s it was local activism around HIV/AIDS which was important, whereas in 2020 it was local epidemiology and local public health teams which figured more prominently. Archives and the nature of remembrance have come to the fore, with Covid initiatives stimulated by the memory of what had been done for HIV/AIDS. Differences between countries and their policies have been much discussed, possibly to a greater degree at a global level than they were for HIV/AIDS. But activism on the scale witnessed for HIV/AIDS has been almost completely lacking for Covid. Only the ‘anti-vaxxers’ take up the banner of opposition to restrictions on individual liberty, but from a different perspective to those who defended human rights in relation to HIV/AIDS.

The editors and authors of this book are to be congratulated for their contribution to ‘second-wave’ histories of HIV/AIDS.

Notes

1Janet Foster, AIDS archives in the UK (London: AIDS Social History Programme, 1990).

2Virginia Berridge, AIDS in the UK: the making of policy, 1981–1994 (Oxford: Oxford University Press, 1996).

3Interview with member of Cardiff AIDS helpline by Janet Foster, 21 February 1991.

4Barbara A. Miztal and David Moss (eds), Action on AIDS: national policies in comparative perspective (New York: Greenwood Press, 1990); Mildred Blaxter, AIDS: worldwide policies and problems (London: Office of Health Economics, 1990); David L. Kirp and Ronald Bayer, AIDS in the industrialised democracies: passions, politics, and policies (New Brunswick, NJ: Rutgers University Press, 1992).

5Peter Aggleton and Hilary Homans (eds), Social aspects of AIDS (London: The Falmer Press, 1988).

Acknowledgements

Funding from the Wellcome Trust, the Humanities in the European Research Area (HERA) network, and NWO, the Dutch Research Council, means that five of the chapters in this collection are freely available under a Creative Commons (CC BY-NC-ND) licence; we are pleased to acknowledge this financial support.

We are very grateful to all those who participated in the symposium that inspired this collection, held at Birkbeck, University of London, in July 2018 and supported by funding from the Society for the Social History of Medicine and the Birkbeck Institute for the Humanities. We would also like to acknowledge the work of all those who contributed to the broader Festival of AIDS Cultures and Histories taking place across London at the same time, under the aegis of the Raphael Samuel History Centre; this festival provided an inspiring context in which to reassess histories of HIV/AIDS. In particular, our thanks go to Matt Cook for initiating the festival and symposium and encouraging us in the production of this collection, and to Katy Pettit for her unfailing good humour and flawless administrative skills. Special thanks are due to all of the contributors to this collection for their patience and commitment in the face of a new pandemic, which caused countless delays and difficulties. Your enthusiasm and dedication to the project have made the potentially tough business of lockdown editing a true pleasure.

Abbreviations

Introduction

Janet Weston and Hannah J. Elizabeth

As we write, the fortieth anniversary of the first confirmed cases of what we now call acquired immune deficiency syndrome (AIDS) is rapidly approaching. This marks four decades of pandemic AIDS and human immunodeficiency virus (HIV), resulting in an estimated global death toll of 32 million.¹ There have now been decades of biomedical research and innovation tackling the virus and its effects, but also decades of activism and campaigning, of creativity and cultural production, of learning and sharing knowledge. At regional, national, and global levels, countless laws, policies, and practices which touch on every aspect of life from immigration to employment to the family have come under scrutiny in the wake of the crisis and, in some cases, have undergone radical change. Most recently, questions of remembering and forgetting have come to the fore through memorials, exhibitions, and newly established archives.² This milestone therefore also marks nearly forty years of arts, humanities, and social science work that responds to HIV and AIDS.

From its earliest days, the political, cultural, and social aspects of HIV/AIDS were recognised, and historical analysis played a central role.³ A revival of historical interest in the epidemic is now taking place, as the distance of decades provides new perspectives, new sources, new anxieties about the ephemera and oral histories that vanish with every passing day, and a new generation of researchers looking with fresh eyes at a crisis older than they are. As we enter the 2020s, salutary reminders of the policies, problems, and prejudices summoned forth by new infectious diseases are abundant and may continue to prompt attention to the crises of the past.

It is therefore a suitable moment to offer a collection that showcases some of this new historical work on HIV/AIDS. Our aim is to introduce aspects of much less well-known histories and legacies, whether that be in terms of place or people involved. Most of Western Europe, our geographic focus, encountered HIV/AIDS at around the same time and responded in broadly similar terms, but these similarities have