Agata Dziuban, Eugen Januschke, Ulrike Klöppel, Todd Sekuler, and Justyna Struzik
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.
Nurses’ perspectives on their work during the United Kingdom HIV/AIDS
Tommy Dickinson, Nathan Appasamy, Lee P. Pritchard, and Laura Savidge
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.
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.
After the Second World War, major programmes of national recovery and reform across Europe built on pre-war precedents to develop universal systems of medical provision for their citizens. ‘Health’ or at least access to healthcare came to be seen, especially in Britain, as both a symbol of modern nationhood and a tool of social cohesion. The USA, by far the wealthiest and most productive nation to emerge from the war, rejected this approach. Historians and politicians have long sought the origins of this idiosyncrasy and the reasons for its persistence, focusing particularly on political and economic forces. But popular culture too has played an important role in US resistance to state interventions in the medical marketplace. This chapter explores the vexed association in Anglo-American discourse between governmental health provision, ‘socialism’ and the British NHS. Focusing specifically on how the US print media represented the NHS visually and rhetorically to the American public, the chapter suggests that the NHS became synonymous with ‘state medicine’ in US popular culture between 1948 and 1958. It then reflects on British responses, and asks why hostile American visions of a purely domestic British social institution provoked such strong reactions. The chapter argues that fierce British advocacy of the NHS at home and abroad envisioned the service itself as a necessary bulwark protecting the nation from communism in the fervid atmosphere of the early Cold War: welfare, in the form of the NHS, was warfare.
This chapter explores the intensifying political, public, and professional concern with general practice waiting rooms in the first decade of the NHS. It argues that the years after 1948 saw the beginnings of a distinctively ‘NHS’ general practice waiting room emerge in British primary care: a space shaped by the ways in which inter-war professional values and premises were reworked in relation to post-war political promises and the peculiar new dynamics created between state, patient, and general practitioner (GP) under the new health service. However, though GPs’ waiting rooms came in for substantial criticism, material change was neither swift nor immediately radical. GPs retained considerable autonomy over their surgeries and practices. Despite coming under considerable political scrutiny, waiting rooms were only gradually remade while doctors reconsidered how patients’ suspended time in the waiting room could be put to new use. The reflections prompted during this period created the parameters for more incremental change as professional identities and the financial structures of general practice changed over subsequent decades.
The notion of consumerism in health is often seen as controversial. Many regard consumerism, with an emphasis on individual choice, markets, and profit, as antithetical to the universalist, collectivist, free-at-the-point-of-use National Health Service. Yet there were many different understandings of consumerism in British healthcare during the 1980s. This chapter examines how consumerist ideas were manifested in public health policy and practice, and especially the impact that they had on health education and health promotion. Consumerism represented a double-edged sword for health educators. Behaviours linked to consumerism, and especially the consumption of certain products, such as tobacco and alcohol, were linked to significant public health problems. Curbing such behaviours by encouraging people towards practices of ‘sensible’ consumption offered a potential way to address to these issues. Consumption was thus both a problem and a solution. With this in mind, the chapter analyses two health education campaigns from the 1980s, one to promote ‘sensible’ drinking and the other designed to deter children from smoking. Both used consumerist tropes, especially the notion of choice. Looking at how this language of choice was received by the public indicates that consumerist approaches were not hegemonic. Indeed, if health was a choice, it is clear that the public could choose not to choose it.
The NHS is a space in which we encounter through multiple identities: as patients, as friends and family, as employees, as a local community. ‘NHS at 70: The Story of Our Lives’ is a national project which has been recording oral histories with patients and staff, taking a holistic approach to each person and their relationship with the NHS. In these testimonies the everyday and the extraordinary feature across memories of particular places and the reliving of defining moments, from which we can begin to construct shared emotional responses to the NHS. Positioning the NHS as a space which is both public and private and cradles a myriad emotional experiences across generations can deepen our understanding of the public’s changing relationship with the NHS and its central place in British social culture. Using personal testimonies, this chapter explores how memories of spaces that are entrenched in the collective memory have changed in purpose or disappeared, and how new digital spaces of healthcare have emerged. It first examines memories of Park Hospital (now Trafford Hospital), the first NHS hospital, to understand the NHS and its cultural significance in the UK. Second, it explores memories of changing spaces of care – from sanatoria to asylums – in order to understand personal responses to changes in treatments and restructuring. Third, it considers the impact of virtual spaces in the NHS and the ways in which digital technology is creating a new space for patients and healthcare professionals.
In 1948 Boots the Chemists was placed at the intersection of high-street commercialism and public healthcare as its pharmacists took on the role of delivering dispensing services for the new nationalised health service. This chapter investigates how the NHS, as a cultural phenomenon, profoundly impacted the high-street retailer and its cohorts of professional pharmacists after 1948. It follows the changes in the physicality of dispensing in the shop setting, the advertising of NHS services in shop windows, and the enhancement of pharmacists’ professional reputation through their role in public health. While for the pharmacy profession as a whole, state-compensated dispensing was economically risky, Boots incentivised its pharmacists to compete for NHS prescriptions, leading to a massive uptake in service usage and customer footfall. Analysis of prescription service data highlights the importance of a new population of customer-patients who ‘didn’t buy anything’ yet drove Boots’ ‘NHS business’ by taking advantage of free dispensing services. The chapter locates the NHS’s cultural reach in a novel physical and material domain on the high street, in the relationships between pharmacists and patients, and in the expression of professional identity. It concludes that the symbiotic relationship between Boots and the NHS propelled both to become ‘bigger’ cultural players.