History

Mobilising a queer theoretical framework, by which we mean embracing unhappiness, ephemerality, and instability, this chapter reflects on processes of archiving oral histories as part of the European HIV/AIDS Archive (EHAA). It presents selected challenges and tensions that lie at the heart of remembering, narrating, and archiving the HIV/AIDS epidemic in the broader European region. The EHAA, an online collection of oral history interviews and digitised materials, has been developed to further establish HIV/AIDS history as part of the broader social memory, so as to work through the trauma of mass death and social discrimination and to document innovations, tensions, and inconsistencies in engaging with the epidemic across the region.

Building on a growing interest in archiving histories of HIV activism across Europe and North America, the EHAA project dates back to efforts by the ‘AIDS History into Museums Working Group’ to preserve such histories in Germany. The project was further developed and expanded in two research projects: ‘Disentangling European HIV/AIDS Policies: Activism, Citizenship and Health’ and ‘Don’t Criminalize Passion! The AIDS Crisis and Political Mobilization in the 1980s and early 1990s in Germany’.

Explicitly deviating from an investment in offspring as a route for the transmission of memory, the EHAA joins other queer archival work imagined as sites for handing down queer history. This chapter argues that the EHAA contributes to queer memory work as a necessary revision of public remembrance and current perceptions of the epidemic, and, at the same time, as a source of inspiration for future activism.

This introductory chapter provides an overview of the timeline of HIV/AIDS in Western Europe, and the dominant Anglo-American historiography to date. It uses the idea of the ‘AIDS capital’ to explore the collection’s primary innovation: drawing together new histories of HIV/AIDS that are attuned to the importance of place and to lesser-known experiences and activities, including those of sex workers, drug users, mothers, nurses, social workers, and those living and working in prisons. This chapter then discusses the key themes examined by the chapters: local and national contexts, transnational interactions, heterogeneous forms of policy, activism, and expertise, and the challenges, opportunities, and risks at the heart of how we archive and remember this epidemic. The eight chapters within the collection are then introduced and summarised, demonstrating some of the possibilities offered by interdisciplinary approaches and attention beyond the familiar Anglo-American national histories of HIV/AIDS.

As part of the United Kingdom’s response to the escalating HIV/AIDS crisis during the 1980s, special wards and community-based services were established to care for people living with HIV/AIDS (PWHA).  Much of the pioneering and innovative care developed at these centres can be attributed to nurses. However, UK nursing history has hitherto neglected to tell their stories. This chapter rectifies this omission by drawing on a wealth of source material including previously unseen, enlightening, and frequently moving oral histories, as well as archival and news media sources, to explore the actions and perceptions of the UK nurses who cared for PWHA, alongside the reflections of PWHA and their loved ones who received this care.

This chapter reveals how assertive PWHA took control of their own care, often becoming experts on their condition – a phenomenon that challenged ideas of medical paternalism by reclaiming decision-making power in the name of the patient.  We explore questions of ethics and socialisation by analysing how nurses were similarly tasked with deciding what actions were permissible in times of crisis – decisions made along the frequently blurred lines that this crisis drew between private and professional lives. Appreciating the personal draw that HIV/AIDS care had to nurses who identified as queer in particular, and the sense of duty this often evoked, offered a meaningful way of interpreting the research gathered for this chapter.  Last, this makes an important contribution to the documented history of nurses’ experiences and constructions of the care of individuals belonging to stigmatised groups.

In recent years there has been a resurgence of museum exhibitions on the history of HIV/AIDS. While many assumed that there was enough awareness of the historical significance of this new disease to ensure the careful collection and conservation of relevant material, it is increasingly clear that a narrow range of items have been saved. As historians and curators turn to these holdings for analysis and exhibition, they find that archival and museum collections inadequately represent the impact of HIV/AIDS across diverse groups and places.

This chapter considers some of the factors that have shaped museum responses to HIV/AIDS, from the accession of objects to the framing of narratives. It discusses the role of national contexts and pays close attention to the role of Dutch self-image in the framing of HIV/AIDS history there as a story of consensus and success, and the implications of this for museums and exhibitions in the Netherlands. Analysis draws on ongoing discussions with Dutch curators and a workshop with curators from museums across Europe, as well as an exhibition in Amsterdam at the International AIDS Society conference there in July 2018. This chapter highlights some of the issues that have limited museum collections and explores the potential consequences for public history. It argues that the current situation is problematic not only because archives and museum objects fuel inaccurate perceptions of the past about who was as risk and why, but also because these histories feed into responses to HIV/AIDS – and Covid-19 – in the present.

This chapter takes as its central theme the relative absence of HIV/AIDS in the 1980s and 1990s in Wales, together with the social, cultural, and political consequences. Described as a ‘phoney war’ by a leading public health consultant, the non-appearance of the HIV/AIDS crisis across Wales fostered a struggle between medical practitioners, campaigners, and administrators under pressure to implement spending cuts. The result, in many parts of Wales, was relative complacency.

This chapter is the first sustained historical analysis of the public response to the HIV/AIDS crisis in the Welsh context. It draws on both epidemiological and wider English and Welsh-medium evidence, including epidemiological and sociological research, local health authority records, educational materials, and, notably, the call logs of the helpline FRIEND, which had been founded in the 1970s.

Three main themes emerge: the distinctive work of the medical community and public health education; the reactions of the general public and politicians, which were not always as hostile as the conservatives assumed; and the internal anxieties and reflections of gay men captured in telephone logs and interviews. Finally, the chapter also locates the public response to HIV/AIDS in a shifting political context. Rather than a ‘phoney war’, this was a complex and changing series of responses to a developing situation. This, far more than hostility, ignorance, or absence, should serve as the framework for studying social and cultural reactions to HIV/AIDS in Wales.

Edinburgh was disproportionately affected by HIV/AIDS in the early 1980–1990s, and women and children were affected in higher numbers there than elsewhere in the UK. Edinburgh’s AIDS crisis also followed a different pattern, with new infections predominantly occurring among IV drug users and heterosexuals. Because of the high rates of HIV infection among women in Edinburgh, the city rapidly became host to numerous charities and organisations scrambling to meet the needs of HIV-affected women and families, aiming to prevent new infections and meet the emotional, medical, housing, and educational needs of those already affected by the virus.

This chapter traces how healthcare workers and HIV-affected women responded in Edinburgh. This was interdisciplinary collaborative AIDS activism born out of the daily fight for resources, information, space, and empathetic treatment for women and their families. This activism can be traced in texts both academic and creative, and was at the very least a backdrop for many women’s experience of HIV and AIDS in Edinburgh in the late twentieth century. To focus the analysis, the creation of the Paediatric AIDS Resource Centre (PARC) in Edinburgh is examined, alongside some of the items the centre published. The need for PARC is demonstrated not just by placing it in its social, political, and historical context, but by recovering the words of HIV-affected women and healthcare workers drawing on its resources, writing these women back into the history they created as subjects rather than objects.

As the AIDS crisis emerged, prisons were quickly identified as possible ‘reservoirs of infection’, where injecting drug use, sex between men, violence, and poor hygiene might all contribute towards the spread of HIV. Some countries moved to introduce punitive or restrictive measures within their prisons, while researchers and international bodies hastened to promote an alternative approach, based on voluntarism, education, and harm reduction. This tried to acknowledge prisoners’ rights and to position prisons as an integral part of the wider community, and by the early 1990s some regions saw innovations such as methadone treatment and needle exchanges established within their prisons.

This chapter reviews and begins to explain the different ways in which countries around Europe responded to HIV/AIDS in their prison systems. The size of a nation’s prison population and the extent of injecting drug use were both important factors in determining national response, as were pre-existing structures of prison healthcare provision and attitudes towards both homosexuality and crime. Responses in prisons were also closely affiliated to responses in the wider community – perhaps to a greater extent than campaigners calling for greater parity were prepared to recognise. It then compares policies and developments in the Republic of Ireland and Switzerland to explore different forms of activism, with different outcomes. Using international evaluations and research from the 1980s and 1990s, national policy documents, and oral histories, this chapter also raises questions about the kind of activism surrounding HIV/AIDS that is remembered.

In the early years of the Norwegian HIV/AIDS epidemic, three main groups were affected: gay and bisexual men, drug users, and people with haemophilia. However, another group played a dominant role in the political, medical, and public discourse: sex workers. This chapter analyses the early political and medical responses to the epidemic, particularly the position of sex workers, the limits of inclusion in the ‘Norwegian model’, and the impact of the epidemic on sex worker activism.

Using media sources, public and private archives, and oral interviews with sex workers, activists, social workers, and civil servants, this chapter explores how different representations of 'the prostitute' were constructed and mobilised. From the mid-1980s, doctors, public health researchers, and the media constructed sex workers as a potential reservoir for HIV infection. Gay activists were gradually recognised as 'experts' by authorities and medical professionals, while it was much more difficult for sex workers to make their voices heard. This had historical reasons because prostitution was generally recognised as a social problem on different levels of society: by politicians, by the police, by social workers, by feminist groups, and in the media. This chapter examines the remarkable story of a creative group of people in the health authorities who approached sex workers as experts, hiring two women for outreach HIV prevention work. The sex workers reported back to the authorities, who thus had first-hand knowledge about a community which otherwise was hard to reach. This outreach work spurred sex worker activism and led to the establishment of the first Norwegian sex worker activist organisation (PION) in 1990. However, the Norwegian story shows how much more difficult it has been for sex workers to get a seat at the table in political decisions than other marginalised groups.

As the whole book is organised thematically, the conclusion offers to span the evolution of the discourse on spas throughout the long eighteenth century, reprocessing the various notions addressed in the book within a stricter chronological frame. Three main topics are discussed in relation to the evolution of spas and spa towns throughout the century: medicalisation, commercialisation and cosmopolitanism.