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.
This contribution brings together the history of psychiatry and the history of disability in Belgium, for the period stretching from the end of the eighteenth century up till the end of the twentieth century. The chapter starts with enumerating several key reasons why such an approach is not only possible, but also valuable and innovative. On the basis of different case studies related to the history of disability and the history of psychiatry, the specificity of Belgian care and medicine is being discussed. Some of the themes being touched upon are the introduction of Belgian psychiatric legislation, the emergence of educational institutes for blind and/or deaf people, the impact of the First World War on representation of otherness and the well-known tradition of family care for psychiatric patients. On the basis of these and other case studies it is, first of all, argued that the Belgian state played an active role in the problematisation of mental and physical differences, but that it actually was private institutions, mainly religious congregations, who managed these populations on a daily basis. Second, the chapter pleads also to take into consideration the agency of the people who were controlled and disciplined; they were not only able to oppose and reinterpret the categories and norms that were imposed on them; they also used these labels to construct new (positive) identities – bringing them into competition with physicians, experts, bureaucrats, etc. By highlighting the variety of different players involved, this chapter illustrates the general theme of this section, ‘Beyond Physicians’.
The epilogue takes stock of the merit and potential of the ‘new narratives’ presented in this volume. As a whole, the volume intends to do two things: empirically, it presents medical histories on Belgium to the Anglophone world while, conceptually, it does so by using the latest methods and perspectives. While ‘traditional’ medical history mainly represented stories about medical science, the medical profession and the state, these new narratives are (also) about patients, alternative healers, clergymen, women and other historical actors. With its contributors writing after many ‘turns’ (social, cultural, performative, praxeological, material and somatic), the ambition of the present volume is to move beyond science, the profession and the state. Like medicine, medical history is not owned by physicians, but by all of us. While in the past, medical history was written by male, Western physicians, today’s medical history is (also) written by historians, women and non-Westerners, producing multiperspective and multivocal stories. While some may regret this development because of the fragmentation it entails, much is to be gained by including all historical actors. Moving beyond the great doctors, decentring the big picture and provincialising Europe leads to a diversity of narratives – representing the diversity of today’s world.
In an era of transnational and global historiography, reflecting on the national frames of writing medical history remains a necessary endeavour. On the one hand, it helps historians to interrogate the metanarratives they use in writing about the medical past, many of which still focus on interactions between physicians and the state and stem from an older social historiography of medicine. By widening their gaze to a history of (health) care, historians may bring a broader range of actors and influences into the limelight. On the other hand, questioning national frames of writing history also shows the complex stratification of local practices, international circulation of scientific knowledge and national structures. Medical histories of modern Belgium therefore consist above all of a variety of entanglements taking place both in Belgium and beyond.
In recent years, medical historians have broadened their analyses of hospitals by looking at the materiality of healthcare institutions and how it ties to the complex ideological, social and economic organisation of society. This ‘material turn’ brought new nuances to a history that had been up to then mostly dominated by the master narratives of teleological progress and social control. This chapter aims to shed light on the material environment of Belgian hospitals and asylums in the nineteenth and twentieth centuries and on the ways that it not only reflected prevailing ideas about cure and care but also responded to evolving moral norms, economic constraints and the slow social levelling of Belgian society. From an ideology of comfortable domesticity to the demands of aseptic cleanliness, from old paternalist charitable ideals to new commercial aspirations, healthcare institutions kept reconfiguring their material forms to match an ever-changing set of scientific and lay expectations. Closely following international trends in hospital design and furnishing, Belgian healthcare institutions were also shaped by national realities such as the stranglehold of Catholic congregations on the healthcare sector. Lastly, by looking at the ways in which objects and material environments were built, used and adapted, this chapter gives us insights into the everyday practices – from dry scrubbing floors with coffee grounds and locking up prostitute patients in closed quarters, to colour-coding elements of the architectural environment – that made up hospital life in the past.
This edited volume offers the first comprehensive historical overview of the Belgian medical field in the nineteenth and twentieth centuries. Its chapters develop narratives that go beyond traditional representations of medicine in national overviews, which have focused mostly on state–profession interactions. Instead, the chapters bring more complex histories of health, care and citizenship. These new histories explore the relation between medicine and a variety of sociopolitical and cultural views and realities, treating themes such as gender, religion, disability, media, colonialism, education and social activism. The novelty of the book lies in its thorough attention to the (too often little studied) second half of the twentieth century and to the multiplicity of actors, places and media involved in the medical field. In assembling a variety of new scholarship, the book also makes a contribution to ‘decentring’ the European historiography of medicine by adding the perspective of a particular country – Belgium – to the literature.