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The European HIV/AIDS Archive
Building a queer counter-memory
in Histories of HIV/AIDS in Western Europe

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.

If you noticed, when you ask me about the history of AIDS… I can talk forever, because there are very few people with whom I share that. The majority of them have died. And even if I have new friends from a younger generation… Sometimes I feel like I don’t wanna put the burden of this history on someone by telling them. I don’t wanna tell the young people who are starting to work in the HIV field unless they wanna know, because they must have the freedom and the space to develop their own ideas, right? And… well, I’m happy to talk to you and share some information, as many people just simply don’t want to know. They don’t want to know. When I tell, told my parents what I’m doing, they said, ‘And is anybody listening to you?’ So I decided, well, maybe I do not go into much detail about my work and I give a list of when I’m at home or not at home, you know? And so with friends, in 1997… people died, that year I lost something like forty or fifty colleagues. When I told this, a friend, the reaction was, ‘Why didn’t they take the new treatments?’ You see how difficult it is to talk about your experiences to someone who is not familiar with the field and who doesn’t really want to be involved? A very good friend of mine has lost a brother, who was an injecting drug user, to AIDS. You know, understanding goes without words. She knows why I’m doing it and she has been through this on a very personal level. But many people just simply say, ‘Oh, is it still a problem?’ … You are isolated in a way, you know? … Sometimes you don’t know where to go with all your memories or impressions, losses, grief, fun situations you have seen. And that is, that is something, which I think an oral history project should capture. That’s why I allowed the filming.1

Mobilising a queer theoretical framework, by which we mean embracing unhappiness, ephemerality, and instability, this chapter attempts to put into words some of what goes ‘without words’ in the understandings and narrations of engagements with the HIV/AIDS epidemic. It explores the tensions, documented in audio, video, and language, between a need to speak and the experience or anticipation of being met with indifference or non-comprehension. The above excerpt from an interview with Stephen Dressler, co-founder of the European AIDS Treatment Group (EATG), the longest existing network of individuals united in responding to the continued impact of the epidemic from across the Europe region, is part of the newly launched European HIV/AIDS Archive that provides the material for the focus of this chapter. In this extract, Stephen problematises his own position as a narrator of history, as a veteran and long-term activist who has witnessed the horrors of mass AIDS-related deaths in the 1980s and 1990s, vis-à-vis new generations of HIV/AIDS activists who have often only recently come to be engaged in the field, and who are faced with unique challenges and different ways of thinking and acting in response to the epidemic. Prompted by this excerpt, and using this chapter to reflect on the process of archiving oral histories, we unravel various challenges and tensions that lie at the heart of remembering, narrating, and archiving the HIV/AIDS epidemic in the broader European region.

The European HIV/AIDS Archive (EHAA) is an online collection of narratives of the past, present, and imagined futures of the HIV/AIDS epidemic in the European region.2 We see the archive as living because it is meant to enhance understanding of HIV/AIDS history, stimulate new readings, and inspire additional oral history work on the topic.3 It brings together a wide range of oral history interviews – personal accounts of living with and responding to HIV/AIDS – complemented by links to policy documents and artworks that allow us to immerse ourselves in the complex history of the epidemic in Europe. The archive opens a space to preserve and share memories of living with or in times of HIV/AIDS. At the heart of the collection are the narratives of people living with the virus, of representatives of communities most affected by it, and of advocates and activists, politicians and policy-makers, healthcare workers, employees of aid organisations, and artists.

The EHAA complements and expands upon the predominantly nationally focused HIV/AIDS archives that already exist in selected European countries.4 Simultaneously, it builds on a conviction that the history of the epidemic in the European region has not been adequately recorded, while acknowledging that it can never be recorded completely. While most analyses and cultural representations of activist engagements with HIV/AIDS and political responses to the spread of the virus have focused on the USA5 and, less frequently, on selected countries of the Global South,6 attention has more rarely been directed towards the unfolding of the epidemic in different parts of Europe,7 especially Eastern, Southern, or Central Europe. It was also not uncommon as we were developing this archive to discover that valuable personal and institutional materials and stories had been destroyed (due to floods, such as with parts of the World Health Organization-Europe and EATG archives), abandoned (as activists moved houses, countries, or continents), or otherwise lost. In those contexts where HIV/AIDS narratives have already been partially preserved, we felt that there was a need to render these histories more complex, to account for the stories of groups of persons, such as migrants, sex workers, people who use drugs, prisoners, and members of religious communities, whose perspectives, lived experiences, and struggles in the context of HIV/AIDS have often been rendered singular, marginalised, or forgotten.8

We hope that the framing and existence of this archive will enable reflection, using this and other collections, to better understand the histories of HIV/AIDS and, generally, the politics of health and the imagined futurities of existence in the European region. With the EHAA, we aim to commemorate, document, and learn from activist, civil society, and other policy-maker efforts in the field of HIV/AIDS, or in closely related areas, such as in sex work, drug policy, LGBTQI+ rights, or the health and legal status of migrants or prisoners. We believe that it can also illustrate how HIV/AIDS activism has been built upon and led to unique forms of solidarity, empowerment, political intervention, and organising, and suggest what sought-after futures reveal about the perceived possibilities and constraints of the present. As a social and political practice, the archive has been developed to help work through the trauma of loss and social discrimination – a process that can often be met with only limited understanding by friends and family members, as the opening interview excerpt illustrates.9 The archive also documents innovations, tensions, and inconsistencies in engaging with the epidemic, up to the present. By creating a space to share, compare, and gather these stories, the EHAA offers a living memory of recent and contemporary HIV/AIDS history in the twenty-first century.

In all of these dimensions, 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. Explicitly deviating from an investment in offspring as route for the transmission of memory, the EHAA joins other queer archival work that has ‘been fashioned as agentic sites for passing on and handing down queer history’.10 In this chapter we discuss these arguments in more detail, after we first present a brief overview of the archive’s structure.

The archive

The EHAA is a searchable online collection of testimonies addressing the history and unfolding present of individual, social, and political responses to HIV/AIDS in Europe. A limited number of interviews are available to view on-site only; the majority can either be downloaded or viewed online. The archive has been developed as a space to preserve memories of living with the virus, and of activist and civil society engagements and HIV/AIDS policies in Europe, with an aim to share stories and learn from a variety of voices and experiences. The EHAA consists primarily of video- and audio-recorded oral history interviews – a method intentionally selected to grasp the unfolding of historical events and processes from the first-hand individual and personal perspectives of those whose voices are often excluded from usual archival strategies and dominant narratives.11 Oral histories enable a lively and multi-perspective memory. Topics include everyday life with HIV and AIDS, self-help, activism, sex work, drugs, migration, refugees, prisons, LGBTQI+ rights, and queer politics. The oral history interviews are supplemented by digitised photos, grey literature, policy documents, and documentation of activist interventions and engagements with the epidemic.

Inspired by different efforts to account for and preserve the lived experiences of the HIV/AIDS epidemic worldwide, and especially the online archive of the ACT UP Oral History Project,12 the EHAA oral history archive initiative dates back to the AIDS History into Museums Working Group (AKAIM) of the German AIDS Service Organisation (Deutsche AIDS-Hilfe e.V.). Within AKAIM, a subgroup came together in 2015 with the aim of interviewing contemporary witnesses and setting up an oral history archive. In cooperation with this group, the idea was further developed within two research projects: ‘Disentangling European HIV/AIDS Policies: Activism, Citizenship and Health’ (EUROPACH) and ‘Don’t Criminalize Passion! The AIDS Crisis and Political Mobilization in the 1980s and Early 1990s in Germany’. The EUROPACH project, a collaboration between Humboldt-Universität zu Berlin, Jagiellonian University, Goldsmiths, University of London, the University of Basel, and a great number of activist groups and non-governmental organisations, explores the practices of HIV/AIDS policy development, negotiation, and contestation in Germany, Poland, Turkey, the UK, and at the European level. While the research topic for certain EUROPACH researchers was focused on a specific field of HIV/AIDS activism, such as harm reduction in prisons and prisoners’ rights in Germany, other researchers investigated a multitude of grassroots responses to HIV/AIDS to reconstruct histories of activism as broadly as possible. The second project, ‘“Don’t Criminalize Passion!”’, which was based at the Humboldt-Universität zu Berlin, investigates the formation of the AIDS movement during the 1980s and early 1990s in the Federal Republic of Germany. These two projects had different research foci, but also complemented each other well. Oral history interviews carried out by AKAIM and both of these subsequent research projects will be included in the EHAA. As all three projects were inspired by a queer theoretical approach, this has had an impact on the development of the EHAA. In the following sections, we will reconstruct this approach from the perspective of the two contributing research groups, as a contribution to a queer counter-memory.

Collection holdings

The EHAA collection consists mainly of video interviews and, secondarily, of audio interviews or interview transcripts. By interviews we also mean conversations with multiple interview partners, including focus groups and witness seminars.13 Interviews constituting the EHAA are heterogeneous in other ways, as each narrative is shaped by the lived experiences and particularities of the biographical trajectories of each interview partner. As of early 2022, approximately seventy such interviews form the basis of the collection and at least thirty more will be uploaded in the near future. As we continue to develop plans of collaboration with HIV-related researchers and activists from across the region, it is our hope that the EHAA will be continuously expanded with the addition of interviews from other initiatives and projects.

As much as possible, additional resources, transcripts, curricula vitae, personal documents belonging to the interviewees, and personal photos are also included in the collection. Other digital materials, such as photo documentation, recordings of performances, policy documents, or talks, can also be included in the collection if copyrights or licences permit. So far, given the national foci of the participating projects, interviews have been conducted in Polish, Turkish, English, German, and Russian. Although several Turkish interviews have already been translated into German for a German-language oral history publication on HIV/AIDS activism in Turkey,14 most other interviews are only available in the original interview language. That being said, translations of transcripts into other languages are planned but will ultimately depend on resource availability.

The collected interviews address many different topics, including, for example, emotions within political mobilisation, the heterogeneity of the HIV/AIDS movement, and varied positions of power and the consequent tensions between actors. In terms of content, the interview collection can be characterised by the following three dimensions, which were also among the meta-data used to order archive entries. First, through the time period of interviewees’ engagements with HIV/AIDS, which range from the early 1980s to the present. At times, the oral histories also trace activist narratives back to even earlier dates and collectivising movements. Second, the interviews can be grouped by the different – and oftentimes flexible – positionalities of those providing their narratives. The interview partners come from activism, self-help structures, non-governmental organisations (NGOs), government bodies and parties, civil society, the biomedical sciences, and fields of social and care work, all fields of activity that often overlap and merge with one another during an interviewee’s lifetime. Some of the interviewees were first activists, then NGO staff members, and finally politicians or government officials. One interviewee was a doctor who became active in lobbying, promoting, and implementing drug substitution; another was initially involved in a sex worker organisation dealing with HIV/AIDS and later wrote crime novels. Among the interviewees are people who describe themselves as gay, lesbian, non-binary, woman living with HIV, refugee, trans person, former prisoner, migrant, feminist, person of colour, religious person, sex worker, and person who uses drugs – to name just a few self-ascribed labels, which of course also intersect for various interviewees.

Third, the interview collection can be sorted based on the topics discussed by interview partners. The interviews cover a wide range of topics including drug use and harm reduction, prisons and prisoners’ rights, empowerment, loss, death and collective mourning, public sex, lesbian safer-sex porn, gender and sexual identity, the women’s health movement, trans issues, autonomous sex worker and migrant organisations, forced testing of prisoners and refugees, human rights instruments, children with HIV/AIDS, haemophilia, experiences of social inequality and discrimination, criminalisation and law enforcement, professionalisation, transnational relations, sexually transmitted infections, biopharmaceuticals and the pharmaceutical industry, funding, research, prevention, testing policies, palliative care, and art.

Taken together, these three dimensions exhibit the richness of the collection. Potential users of the EHAA can select entries based on these criteria to search for materials that reflect their own interests or respond to their specific questions.

Infrastructure and usage of interviews

With its media repository, Humboldt-Universität zu Berlin offers the technical infrastructure for storing, managing, and making accessible the digital oral history interviews and other contemporary testimonies and digitised documents that make up the EHAA. The media repository is a digital asset management system. It enables the permanent storage and persistent identification of the collection’s objects via unique Digital Object Identifiers (DOIs), metadata that are freely searchable online, the streaming or downloading of specific objects, and differentiated public access to the archival materials. To facilitate use of the archive, topics have been turned into keywords, categories, and other metadata, which make it easier to search the archive’s holdings. Other metadata include language, country, discussed events, organisations and institutions, or the names of interviewees (if they have consented to our including them). The metadata is available in English by default but, depending on time and resources, we intend to make metadata available in at least German, Polish, and Turkish as well.

Interviews might be used for a number of purposes, such as teaching, exhibitions, and research or analyses by activists, policy-makers, or scholars in the humanities or social sciences. The interviews have already been at the focus of a EUROPACH concluding exhibition entitled HIVstories: Living Politics,15 which travelled to gallery and museum spaces in Berlin, Warsaw, and Istanbul. In addition, publications from both research projects based on the archived materials are forthcoming. Most of the interviews are freely accessible online, but some can only be viewed on-site in the university library upon request. Users are only permitted to view the latter holdings if they agree to anonymise any of the viewed materials, in accordance with the wishes of the interviewees.

Queer counter-memory

For us, the potential of the EHAA lies in the idea of contributing to a queer counter-memory. It forms a rich source of materials for queer memory work that intervenes into public perceptions of the HIV/AIDS epidemic and opens possibilities for the political struggles of activists today. Guided by a queer intersectional approach, which is sensitive to the entwinements of multiple power relations, non-hegemonic discourses and practices, the fragility of social categorisations – often taken for granted – and the multidimensionality of experiences and lives, we have worked to assemble a diversity of narratives to make up the initial foundation of the archive. This approach also informed the focus of interview questions, which sought to grasp various, fluid, dissonant, and ambivalent feelings of belonging to social movements,16 and the impact of multiple structural issues on the lives, strategies, and practices of interview partners. With the same methodological lens, we created an archive inventory to make the collection’s resources accessible to queer and intersectional readings.

In the next section, we propose reflections on the notions of ‘queer memory’ and ‘queering the archive’ that inspired our approach. These considerations are not meant to define the EHAA as an archive that is somehow queer, but are instead meant to be stimuli for discussion on the queer theoretical positioning of the archive’s collections, which follows from the different perspectives of the three projects that played a decisive role in its development. For this reason, we do not attempt to smooth out tensions in the perspectives and meanings of what constitutes queer among the variously positioned projects, activists, researchers, and interview partners. If one approach is to identify the political culmination of queer in some kind of reference to non-heteronormative life worlds, then there is also a justification for an understanding of queer as ‘taking queer forms of thought out into non-queer worlds of practices and things’.17 In this respect, our reflections are characterised by meandering tensions and other complex relationships between non-heteronormative and generally non-hegemonic life worlds and queer theoretical forms of thought.

Between queer utopian memory and the unhappy archive

Utopia, writes José Esteban Muñoz, ‘permits us to conceptualize new worlds and realities that are not irrevocably constrained by the HIV/AIDS pandemic and institutionalized state homophobia. More importantly, utopia offers us a critique of the present, of what is, by casting a picture of what can and perhaps will be.’18 Muñoz’s arguments for the necessity of a queer utopian memory that inspires a ‘political desire’ to transform the present has contributed to a rich discussion about queer memory and archival work.19 Conversations with our interviewees inspire such ‘utopian longings’20 about experiences of solidarity and empowerment in self-help-groups, about the importance of community meeting places such as cafés, clubs, switchboards, cruising areas, drug scenes, sex work venues, or community-led drop-ins, about community events like annual meetings of people living with HIV/AIDS as feel-good resources, or about pangs of desire in activists’ meetings.

On the other hand, Heather Love has warned against idealised visions of the past that ignore ‘the wounds, the switchbacks, and the false starts’.21 She urges to shift the ‘focus on the negative affects – the need, the aversion, and the longing – that characterize the relation between past and present’.22 Applying the same perspectival twist, Sara Ahmed calls for an ‘unhappy archive’ that counters the recent trend towards the social integration and normalisation of LGBTQI+ persons, and the correlating paradigm of a history of progress.23 Indeed, the oral histories of crises assembled in the EHAA – crises of, for example, AIDS, poverty, rights violations, and criminalisation – are infused with memories and ongoing conditions of injury and vulnerability. Yet, they complicate and go beyond the dualistic notions of happiness and unhappiness, failure and success, progress and backlash. Discussions about community feelings (feelings about community and feelings shared across communities) with our interview partners provide insights into the coexistence of the different affective dimensions of experiences: memories of the power of community feeling that are intertwined with memories of peer pressure, ignorance, internal tensions, negotiations and conflicts, or processes of disidentification and exclusion. The complexity of accounts of the past from interview partners demonstrates how utopian and negative community feelings are oftentimes closely knitted together.

Two examples illustrate this need to complicate the binary of happiness and unhappiness, failure and success, and progress and backlash. First, selected materials from the archive communicate an ongoing feeling of frustration due to stagnation and a never-ending sense of struggle in the face of a constantly changing horizon of possibilities.24 In certain regions and cities of Poland, for example, recently introduced ‘LGBT free-zones’, smear campaigns against harm-reduction activists and organisations, attempts to criminalise sex education, and everyday ‘state’ homophobia contribute to a sense of precarity. As described by several interview partners, this further shapes forms of vulnerability in relation to HIV/AIDS. While some experience this as a backlash, others describe it as a continuity of the same state-sponsored violence. In both instances, these political shifts have provoked self-organising and fierce protests that reveal a striving towards utopian futures despite a sense of hopelessness and fatalism, or what Lauren Berlant has productively termed ‘cruel optimism’.25 From this perspective, even a queer desire to move beyond the binary of progress and backlash might be further queered, in that it presumes that an agreed-upon history of progress already exists in the broader cultural imaginary.

A second example, taken from an interview with an activist from Scotland, also concerns the coexistence of contradicting temporalities of social and political change. While many in the gay community applauded the legalisation of gay marriage and other perceived symptoms of enhanced equality and integration in Scotland in the 2010s, one interviewee described the contemporaneous introduction of new policies and policing strategies targeting men who have sex with men, which included police raids on saunas and the confiscation of condoms. These recent police interventions were described in the interview as though they were moving Scotland back in time to the early 1980s – that is, to a time when public health interventions were hampered by harsh law enforcement strategies and rights violations. Complicating the binary of change and transformation as defined by either success or failure, this coexistence of lived senses of progress and regress in a particular context reveals temporalities of social and political change as contradictory, unstable, and conditional.

The oral history collection of the EHAA presents a range of heterogeneous, context-dependent stories of partial empowerment and bad feelings, failures and successes, progress and regress. Thus, it allows users of the archive to problematise these notions by showing their precariousness, ambiguities, and changeability. Instead of providing psychological reassurance from history, this archive enables, as Tavia Nyong’o has suggested with regard to queer archives in general, a ‘radical defamiliarization of knowledge’ about the AIDS crisis.26

Ephemera as evidence

Another guiding reflection during the construction of the archive has been Esteban Muñoz’s discussion of the queer meaning of the ephemeral in his essay Ephemera as evidence.27 He argues that queer worlds were often hidden and queer battles were mostly fought in secret, which is why their traces had to be blurred as much as possible. This concealment of queer practices is caused by state violence and pressures from the prevailing (hetero-)normative culture, which is reinforced by the exclusionary practices of public archives: from the destruction of files by descendants or archives themselves (for example, because they classify files as not worthy of archiving) to archival classification systems, which make the remaining traces untraceable.28 Finding such precarious remnants often requires a sensitivity to hidden, indirect, ephemeral, and transient clues, based on queer and other non-normative experiences.29 Similarly, Avery Gordon describes ‘other utopianism’ as a quest for the ‘illegible, illegitimate, or trivialized forms of escape, resistance, opposition, and alternative ways of life’.30 This attention to the ephemeral, illegible, and illegitimate necessitates a queer reading – a speculative reading informed by non-normative experiences and a desire for what items or stories could mean or could have meant for marginalised persons and communities.31 From our point of view, oral history is most suitable for tracing such precarious hints of queer life worlds and struggles, both during the interview itself and in the later interpretation of the narrative. Audio and video recordings further help to make these hints audible and visible through pauses, intonation, and body language.

Two examples will help to illustrate what this could mean, one from ‘Don’t Criminalize Passion!’ and another from the EUROPACH project. In the first example, one interviewee spoke about a dance marathon in Nuremberg in 1994 that engaged with the ongoing AIDS crisis and AIDS-related loss of lives. For the participants of the event, he said, this was a ‘key moment’. Despite the importance of the event as described by our interview partner, there is nothing to be found about it in existing archives. While telling the story, the interviewee burst into tears several times. Yet, he hardly ever talked about personal experiences of loss and grief.32 We, as interviewers (two persons with different backgrounds, in fact), in turn reacted with alarm and emotion, even though the events narrated were, soberly considered, not dramatic in themselves, even more so since they happened a long time ago. But the way the narrator expressed himself echoed with our embodied emotional practices of collective grief and trauma awareness, which served as a compass to dive deeper into details of the story, both during the interview by interacting with the interviewee and by interpreting it later on.33 The interviewee explicitly named moments of collective grief, and his outburst of tears made the emotional intensity of the dance marathon palpable. On one hand, there was hardly anything to be learned about the interviewee’s individual confrontation with the fear of dying and mourning for the dead. Still, his narrative offered breaks and emotional turns that might be read as traumatic effects that dynamise connections between collective and individual grief. At the same time, though, as in a tilted mirror, it is possible to read the interview sequence as provoked by a fundamental disjunction between collective and individual grief, with the latter playing no psychodynamic role at all in the narrative.

Evidence is also made precarious, and reduced to traces that risk becoming invisible, by the privileging of queer understood primarily through the lens of sexuality. As such, the concealment of non-normative practices is caused not only by the pressures of the prevailing (hetero-)normative culture, but by the dominance of gay lives and loss in the imagined and imaginable necropolitical landscape of the epidemic.34 While working towards developing the archive, we could not only see the complex entanglements of individual and collective grief, but also situate those entanglements in the political and social realities of (un)mournability that selectively grant communities the right to be grieved and grieving.35 For example, one interviewee narrated the moment when she came to realise that her own life and the lives of her community members – people who use drugs and are living with HIV and AIDS – were not constructed as worthy of recognition and commemoration in the same ways as other non-normative lives, even as experienced by herself and others in her community. This realisation occurred during a visit to a community space for people living with HIV/AIDS in London where she participated in the much-valued collective mourning of yet another gay male friend who had died of complications related to the virus. While talking to another friend whose husband, a person who injected drugs, had also died of AIDS but whose death went all but unacknowledged by her friends and broader communities, she realised that it did not even cross her mind to commemorate the death of her friends who used drugs. This realisation brought her into drug users’ rights activism and contributed to the development of the first lifestyle magazine for people who use drugs in the UK, Black Poppy, also among the first in Europe.

What her narrative underscores is the fragility and conditionality that lies behind the individual and collective possibility to narrate the epidemic, to engage in recognition struggles,36 or even to mourn. In the early days of the epidemic, before effective treatment was available and when death was taking its heaviest toll in those communities most vulnerable to HIV/AIDS, the opportunity to confront the fact of someone’s death and mourn it individually or collectively could be seen as one of the very few possibilities to make visible, account for, and narrate non-normative lives and experiences. The very construction of someone’s (and your own) life as worthy of being acknowledged is a precondition for it to be remembered and preserved in an archive. Thus, the lives and deaths of some were, and still can be, seen as ephemera in the archive of mourning, coming to light only if mediated by the stories of others.

Destabilising categories

The archive has demanded the development of strategies that help us to navigate through materials, make connections across a multiplicity of sources, and build bridges between dissimilar moments, experiences, and localities. As mentioned above, one such strategy has been the construction and application of metadata: a rich web of categories that label interviews and other sources based on the themes, events, organisations, and self-ascribed identities they include. Categories are, however, always already situated in existing webs of meaning and understandings of reality, which are not necessarily translatable across and within different localities, temporalities, and communities.37 As part of these projects, we explore in this section the intrinsic instability, historical changeability, and contextuality of categories put to use to describe lived experiences, positionalities, and forms of collective and self-identification. To this end, we show how the collected materials exceed the very categories that have been developed from the materials themselves.

Exemplary of such malleability, tension, and instability is the category ‘queer’, which was used by several interviewed activists as a self-definition and also as a form of coalitional politics, not only against heteronormativity, but also against intersecting norms of respectability, ableism, classism, or racism. Yet this notion and its semantic fields are alien to, and viewed with scepticism or differently understood by, a great variety of possible and actual interviewees. This is related to its perceived origins as an initially ‘Western’ concept of critical practice or identification, and also the politics of its usage, where some see it as only superficially or problematically including their perspectives, experiences, and communities. It is also often used in its original English version and not translated into other languages. Even for some of the interviewed older gay AIDS activists from Western Europe, queer was not embraced either as a self-definition or as a label of political practice. And yet these same interviewees offered us enthusiastic descriptions of political coalitions with lesbians, sex workers, or persons who use drugs, with focused actions on cross-identity and intersectional marginalisation processes: an approach that exceeds identity-based activism, which can be grasped analytically as ‘queer’ even if it was not explicitly described or developed as such in the interviews.38 For instance, a slogan from a big demonstration in July 1988 in Frankfurt against repressive AIDS politics expressed this new form of coalitional politics: ‘Solidarity of the Unreasonable’. As an intersectional intervention, narratives of this event resembled the coalition work of ACT UP New York that Cathy J. Cohen described as queer ‘transformative politics’.39

Assigning ‘queer’ as metadata to those interviews, so as to account for discussions about intersectional, coalitional politics, is meant to facilitate research on these queer elements of the archive and of HIV/AIDS activism in Europe, and also, in our practice of assigning metadata to these materials, on the construction of the term queer at this particular historical juncture.

To the extent that the meanings and uses of ‘queer’ vary considerably across the broader European region, critical reflection about the categories used in the archive also take on a geopolitical dimension. These geopolitical tensions in the terminology of applied metadata are further evidenced by the question of the EHAA’s scope, regions, and boundaries. This is already manifest in the archive’s title, in which we use ‘Europe’ as a frame of reference for documenting and analysing engagements with the epidemic. While it must be acknowledged that the primarily European focus of the EHAA only adds to the need to ‘provincialise’ Europe in future archiving of the epidemic globally,40 its framing nonetheless also destabilises the cohesion and meaning of Europe in three important ways.

First, the focal countries of the projects that constitute the archive’s initial foundation push up against popular framings of Europe. In particular, they centre countries along the borders of what is commonly termed ‘Western Europe’, even as the precise meaning of what constitutes the ‘West’ varies based on the labelling individual, network, organisation, or governing body. Inspired by postcolonial scholarship, Robert Kulpa and Joanna Mizielińska thus refer to the localities of Central and Eastern Europe (CEE) as the ‘contemporary peripheries’: ‘“European enough” (geographically), “yet not enough advanced” to become “Western” (temporally)’.41 Jill Owczarzak has similarly written that CEE is often grasped as ‘the West’s intermediary “Other”, neither fully civilized nor fully savage’.42 In this dynamic, postsocialist societies, according to Rasa Navickaité, are always going to be ‘just an imitation of what has already happened in the West’.43 Indeed, conducting interviews in different parts of Europe helped us to critically reflect on these ‘East’/‘West’ and ‘North’/‘South’ divisions as malleable, in that they are constructed relationally and variably across time and space, and also as generative, in that they involve shaping practices, political strategies, and forms of individual and collective subjectivities.

Second, while the archive has an initial focus on only four particular countries, the fifth transnational ‘European’ level at which materials were gathered has enabled the collection of stories that extend from Western Europe into the region commonly referred to as Eastern Europe and Central Asia (EECA). The EHAA includes, for example, the voices and experiences of individuals from more than twenty countries and from a wide range of networks that one might see as ‘European’, such as the European AIDS Treatment Group, the International Committee on the Rights of Sex Workers in Europe, and the Eurasian Harm Reduction Association or AIDS Action Europe. Hence, rather than focus exclusively on a single notion of Europe as defined by one particular policy or health-governing entity, the archive’s methodology and resulting collected materials reflect a contradictory, dynamic, and unstable notion of Europe as porous, in-the-making, and remarkable in its multiplicity.

Finally, by documenting the narratives of people engaged in the epidemic who have migrated to or from the European region, and the influence of European policies and activities on the states of politics and of the epidemic around the globe, the EHAA is also global in its scale even as its lens is the European region. As such, the concept of Europe that has been mobilised in the archive’s initial scope intentionally works to undermine the strengthening of borders and the politics of deserving-ness that characterise that which has come to be called ‘Fortress Europe’.44 Precisely these politics were among the topics at the heart of interviews that we conducted with a variety of interview partners, especially with selected members of the European African Treatment Advocates Network. Archived interviews thereby include multiperspective narrations of migration to and from, as well as within, European countries. These reflect and address the shifting terms of admission and inclusion into legality, health prevention and treatment policies, and citizenship rights and entitlements as generally conceived.

With these three aspects considered together, it becomes clear that labelling and metadata are never purely descriptive. Upon their development and implementation, they immediately introduce analytical dimensions to the ways in which we engage with archived materials. ‘What we find is, as ever, contingent on what we set out looking for’, wrote the historian Ben Cowan, ‘and limited by classificatory systems in which we ourselves are ever more agentive participants’.45 This reflection is further inspired by Mathias Danbolt’s discussion in Lost and found: queerying the archive about the necessity to pay attention to the historical discontinuity of concepts and practices, and also to the exclusions that accompany every form of categorisation.46 The indexing of interviews is therefore not a trivial task, but requires an ongoing discussion about the tensions between today’s political claims and historical concepts and contexts.


We regard this sensitivity to the ephemeral, the queer reading, the unhappy archive, and the queering of categorisations as the construction sites necessary to create a queer utopian memory in Muñoz’s sense. In Cruising utopia, Muñoz sees the political potential of utopias in ‘the insistence on potentiality or concrete possibility for another world’.47 We follow Muñoz in his plea for the essential emotional and political significance of queer utopian memories for today’s struggles. We think, however, that the concept of utopia must be complicated by emphasising heterogeneity and dissonances. In addition to empowering and unifying moments of activism, the European HIV/AIDS Archive also documents polyphony, problems, omissions, ignorance, and sometimes the failure of initiatives. It thus allows close readings that unfold the troubling possibilities of thinking that were within reach of contemporary actors, possibilities that the actors skipped over when following the dominant emotional, discursive, and movement practices of their time, when building political coalitions along pre-existing ties and highlighting certain political problems that were near to them but ignoring the realities of other marginalised lives. In this both empowering and critical sense, we believe that the European HIV/AIDS Archive can contribute to what has been termed a queer counter-memory.


The authors would like to express deep gratitude to all contributors to the EHAA. Thank you for sharing your stories with us. Thank you also to the editors for their helpful feedback on an earlier draft of this chapter. ‘Disentangling European HIV/AIDS Policies: Activism, Citizenship and Health’ (EUROPACH) is a collaboration between Humboldt-Universität zu Berlin, the University of Basel, Goldsmiths, University of London, and Jagiellonian University, Kraków, and was funded by the Humanities in the European Research Area (HERA.15.093, project duration from 15 September 2016 to 30 November 2019) as part of the joint research programme ‘Uses of the Past’. The ‘“Don’t Criminalize Passion!” The AIDS Crisis and Political Mobilization in the 1980s and early 1990s in Germany’ (‘“Keine Rechenschaft für Leidenschaft!” Aids-Krise und politische Mobilisierung in den 1980er und frühen 1990er Jahren in Deutschland’) (AKPMD) project is funded by the German Research Foundation (Deutsche Forschungsgemeinschaft) (DFG-GZ BI 1353/8–1, project duration from 1 December 2017 to 30 November 2020).


1 Video interview with Stephen Dressler, conducted in Berlin on 3 July 2018 (in English), available in the European HIV/AIDS Archive, resource ID 118, identifier id_35_ad_ts. This extract comes at the very end of the interview.
2 The archive can be found at: (accessed 8 November 2021).
3 Daniel Marshall, Kevin P. Murphy, and Zeb Tortorici, ‘Editors’ introduction: queering archives: intimate tracings’, Radical History Review, 122 (2015), 110 (at 9).
4 For example, see the AIDS Collections in the ‘Oral history collections at the British Library on the subjects of disability and health’ of the British Library ( Additional Europe-based transnational HIV/AIDS archives, although not focused on oral histories, include the collection of AIDS artifacts at the Musée des civilisations de l’europe et de la méditerranée in Marseille ( and the Face of AIDS Film Archive at the Karolinska Institutet University Library in Stockholm ( (all websites accessed 8 November 2021).
5 Steven Epstein, Impure science: AIDS, activism, and the politics of knowledge (Berkeley; Los Angeles; London: University of California Press, 1997); Deborah B. Gould, Moving politics: emotions and ACT UP’s fight against AIDS (Chicago, IL; London: University of Chicago Press, 2009).
6 See, for example, Helen Epstein, The invisible cure: Africa, the West and the Fight against AIDS (London: Penguin, 2007); Didier Fassin, When bodies remember: experiences and politics of AIDS in South Africa (Berkeley, CA; London: California University Press, 2007); Vinh-Kim Nguyen, ‘Antiretroviral globalism, biopolitics, and therapeutic citizenship’, in Global assemblages: technology, politics, and ethics as anthropological problems, ed. by Aihwa Ong and Stephen J. Collier (Malden, MA: Blackwell Publishing, 2005) pp. 12444.
7 See, for example, Virginia Berridge, AIDS in the UK: the making of policy, 1981–1994 (Oxford: Oxford University Press, 1996); Henning Tümmers, AIDS: Autopsie einer Bedrohung im geteilten Deutschland (Göttingen: Wallstein Verlag, 2017).
8 For similar considerations regarding an intervention into the dominant narratives of LGBTQI+ history by means of collecting oral histories of diverse populations, see Darnell L. Moore, Beryl Satter, Timothy Stewart-Winter, and Whitney Strub, ‘A community’s response to the problem of invisibility: the Queer Newark Oral History Project’, QED: A Journal in GLBTQ Worldmaking, 1.2 (2014), 114.
9 Cheryl Ware, ‘“Things you can’t talk about”: engaging with HIV-positive gay men’s survivor narratives’, Oral History, 46.2 (2018), 3340; Wendy Rickard, ‘Oral history – “more dangerous than therapy”?: Interviewees’ reflections on recording traumatic or taboo issues’, Oral History, 26.2 (1998), 3448.
10 Marshall et al., ‘Editors’ introduction’, p. 6.
11 Janet Weston, ‘Oral histories, public engagement and the making of positive in prison’, History Workshop Journal, 87 (2019), 21123.
12 Available at: (accessed 8 November 2021).
13 Emily Jay Nicholls and Marsha Rosengarten carried out the following witness seminars as part of ‘Disentangling European HIV/AIDS Policies: Activism, Citizenship and Health’ (EUROPACH, 2019): ‘Women and HIV in the UK’; ‘HIV Prevention and Health Promotion in the UK’; ‘The Criminalisation of HIV Transmission in the UK’; ‘Antiretroviral Drugs up to and Including Proposition of TasP and PrEP’. Available at: (accessed 8 November 2021).
14 Zülfukar Çetin and Peter-Paul Bänziger (eds), Aids und HIV in der Türkei Geschichten und Perspektiven einer emanzipatorischen Gesundheitspolitik (Gießen: Psychosozial-Verlag, 2019).
15 Information about these exhibitions, including the exhibition catalogue in English, German, Polish, and Turkish, is available on the project’s website: (accessed 8 November 2021).
16 Natalia Ruiz-Junco, ‘Feeling social movements: theoretical contributions to social movement research on emotions’, Sociology Compass, 7.1 (2013), 4554 (at 52).
17 Beatrice Michaelis, Gabriele Dietze, and Elahe Haschemi Yekani, ‘Einleitung: The queerness of things not queer: Entgrenzungen – Affekte und Materialitäten – Interventionen’, Feministische Studien: Zeitschrift für interdisziplinäre Frauen- und Geschlechterforschung, 30.2 (2012), 18497 (at 195).
18 José Esteban Muñoz, ‘Ghosts of public sex: utopian longings, queer memories’, in Policing public sex: queer politics and the future of AIDS activism, ed. by Dangerous Bedfellows (Boston, MA: South End Press, 1996), pp. 35572.
19 José Esteban Muñoz, ‘Ephemera as evidence: introductory notes to queer acts’, Women & Performance, 8.2 (1996), 516. See, for example, Ann Cvetkovich, An archive of feelings: trauma, sexuality, and lesbian public cultures (Durham, NC: Duke University Press, 2003).
20 Muñoz, ‘Ghosts of public sex’.
21 Heather Love, Feeling backward: loss and the politics of queer history (Cambridge, MA: Harvard University Press, 2007), p. 32.
22 Ibid.
23 Sara Ahmed, ‘Killing joy: feminism and the history of happiness’, Signs, 35.3 (2010), 57194; Judith Butler, Precarious life: the powers of mourning and violence (London; New York: Verso, 2004); Judith Butler, Frames of war: when life is grievable (London; New York: Verso, 2009); Jack Halberstam, The queer art of failure (Durham, NC: Duke University Press, 2011).
24 Agata Dziuban and Todd Sekuler, ‘The temporal regimes of HIV/AIDS activism in Europe: chrono-citizenship, biomedicine and its others’, Critical Public Health, 31.1 (2021), 516.
25 Lauren Berlant, Cruel optimism (Durham, NC: Duke University Press, 2011).
26 As cited in Marshall et al., ‘Editors’ introduction’, p. 7.
27 Muñoz, ‘Ephemera as evidence’.
28 Mathias Danbolt, ‘Touching history: archival relations in queer art and theory’, in Lost and found: queerying the archive, ed. by Mathias Danbolt, Jane Rowley, and Louise Wolthers (Copenhagen: Nikolaj, Copenhagen Contemporary Art Center, 2009), pp. 2745.
29 Muñoz, ‘Ephemera as evidence’, p. 10. For further reflection on ephemera and archives of HIV/AIDS, see Chapter 9 in this volume.
30 Avery Gordon, The Hawthorn Archive: letters from the utopian margins (New York: Fordham University Press, 2018), p. viii.
31 Elizabeth Freeman, Time binds: queer temporalities, queer histories, perverse modernities (Durham, NC: Duke University Press, 2010).
32 ‘Describing an emotion did not always mean feeling it; and conversely an emotion not explicitly articulated might nevertheless be deeply felt’, writes Matt Cook with regards to his historical analysis of testimonies of the AIDS crisis in the UK. Matt Cook, ‘“Archives of feeling”: the AIDS crisis in Britain 1987’, History Workshop Journal, 83 (2017), 5178 (at 61).
33 On the psychodynamics between interviewer and interviewee, see Valerie Yow, ‘What can oral historians learn from psychotherapists?’, Oral History, 46.1 (2018), 3341.
34 Achille Mbembe, Necropolitics (Durham, NC: Duke University Press, 2011).
35 Butler, Frames of war.
36 Barbara Hobson (ed.), Recognition struggles and social movements: contested identities, agency and power (Cambridge: Cambridge University Press, 2003).
37 Donna Haraway, ‘Situated knowledges: the science question in feminism and the privilege of partial perspective’, Feminist Studies, 14.3 (1988), 57599.
38 Murphy and colleagues use a similar understanding of the term in their discussion of ‘what makes queer oral history different’, in Kevin P. Murphy, Jennifer L. Pierce, and Jason Ruiz, ‘What makes queer oral history different’, The Oral History Review, 43.1 (2016), 124 (at 17).
39 Cathy J. Cohen, ‘Punks, bulldaggers, and welfare queens: the radical potential of queer politics?’, GLQ: A Journal of Lesbian and Gay Studies, 3.4 (1997), 43765 (at 438).
40 Dipesh Chakrabarty, Provincialising Europe: postcolonial thought and historical difference (Princeton, NJ: Princeton University Press, 2000).
41 Joanna Mizielińska and Robert Kulpa, ‘“Contemporary peripheries”: queer studies, circulation of knowledge and East/West divide’, in De-centring Western sexualities: Central and Eastern European perspectives, ed. by Robert Kulpa and Joanna Mizielińska (Farnham; Burlington, VT: Ashgate, 2011) pp. 1126 (at p. 11).
42 Jill Teresa Owczarzak, Mapping HIV prevention in Poland: contested citizenship and the struggles for health after socialism (unpublished PhD thesis, University of Kentucky, 2007). Available at: (accessed 8 November 2021).
43 Rasa Navickaité, ‘Under the Western gaze: sexuality and postsocialist “transition” in East Europe’, in Postcolonial transitions in Europe: contexts, practices and politics, ed. by Sandra Ponzanesi and Gianmaria Colpani (London: Rowman & Littlefield, 2016), pp. 11932 (at p. 128).
44 Nicholas De Genova (ed.), The borders of “Europe”: autonomy of migration, tactics of bordering (Durham, NC; London: Duke University Press, 2017); Karolina Follis, Building Fortress Europe: The Polish-Ukrainian border (Philadelphia: University of Pennsylvania Press, 2012).
45 Ben Cowan, ‘“A passive homosexual element”: digitized archives and the policing of homosex in Cold War Brazil’, Radical History Review, 120 (2014), 183203 (at 198).
46 Danbolt, ‘Touching history’.
47 Muñoz, ‘Cruising utopia’, p. 1.
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Histories of HIV/AIDS in Western Europe

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