Thick times – transformation, activism and HIV in Poland

ABSTRACT

In this paper, the author explores the entanglements between time and HIV/AIDS activists’ biographies in Poland. More specifically, the aim is to analyse how people living with HIV, activists, professionals, therapists – all of them engaged in constructing and shaping HIV/AIDS policy worlds – experienced the first years of responding to the epidemic and how they frame these past experiences from the present perspective. By looking at different biographies and trajectories of engagement in the HIV/AIDS field, the author examines how various actors conceptualize and reflect upon the ‘thick times’. The intersection of the first responses to the epidemic with transitional changes taking place in Poland in the early 1990s is crucial for understanding the notion of ‘thick times’, its ambivalences and ways in which activists frame their experience from that period.

KEYWORDS:

• HIV
• time
• activism
• transformation
• Poland

Introduction

At the beginning of the HIV epidemic, Poland, being part of the Eastern Bloc, was partially isolated from the transnational exchange of knowledge and practices with respect to HIV/AIDS. Internally, during the socialist period of the epidemic, the state did not undertake any serious responses due to the general inefficiency of its institutions.¹ Although in the 1980s society experienced mass social mobilization under the Solidarność flag, other areas and forms of potential activism were strongly controlled by the state, leaving little room for self-organizing from below. Such pre-transformation initiatives like the Warsaw Homosexual Movement or the gay magazine Filo, which provided readers with news about the HIV epidemic from all over the world and promoted safer sex using the language of the community, were crucial in shaping queer counter-cultures, yet they did not necessarily reach a broader audience.² Thus, unlike in the Western countries, in Central and Eastern Europe (CEE) the HIV epidemic was not preceded by liberation movements (i.e. gay and lesbian or feminist movements), at least not on the same scale.³ Yet, just after the political and economic transformation of 1989, civil society started to emerge. An intensive collaboration between foreign (mostly Western European) social initiatives and newly established organizations and collectives, working in the fields of HIV, human rights, sexual liberation and drug use in Poland, came into existence.

The 1990s also brought many deep structural and systemic changes to society.⁴ Interestingly, during the interviews I conducted with HIV/AIDS, harm reduction and LGBTQ activists and policy-makers, the first years after the transition were described by some of them through the lens of an atmosphere of hope and carnival, especially for civil actions that had been strongly controlled by the authorities in the previous regime. The period was named by some of them as their ‘HIV romanticism’, a ‘community’ period or the time ‘when we all were together’, even though at the same time it was presented as ‘heavy and cruel’. From the present perspective, activists described their experiences from that time as ‘turning points’ in their biographies, as ‘anchoring’ events or ‘emotional’ incidents that provoked new ways of thinking about and framing their own lives, as well as enabled them to establish synergistic relations between different actors in the field (i.e. non-governmental organizations [NGOs], people living with HIV/AIDS, public governing bodies and medical doctors).⁵

By analysing these various recollections of the past in my paper, I want to explore the entanglements between time and HIV/AIDS activists’ biographies in Poland. More specifically, the aim is to analyse how people living with HIV, activists, professionals, policy-makers, therapists – all of them engaged in constructing and shaping HIV/AIDS policy worlds – experienced the first years of responding to the epidemic and how they narrate these past experiences from the present perspective.

Although HIV was diagnosed in Poland for the first time in 1985, as already mentioned, in the 1980s almost no systemic responses were undertaken, and bottom-up activities were very limited.⁶ Only the next decade brought both an increase in HIV infections and more structured responses to the epidemic from civil society and government bodies. The 1990s in Polish HIV/AIDS activists’ accounts have thus often been depicted through the prism of their intensity, urgency, and dynamic and informal dimensions. While a sense of urgency and emotional engagements in responding to the epidemic within the ‘social ferment’ stage have been widely analysed in different contexts and regions worldwide,⁷ in the Polish case study I want to focus on ambivalent perceptions of this period, articulated in the collected narratives and evoked by both structural political and economic changes and AIDS-related social fears.⁸

To discuss the contradictory and complex character of that period, especially in the context of emerging HIV/AIDS politics, I offer the notion of ‘thick times’. It designates ways in which the 1990s are remembered: through profound social changes in terms of policies and social structures and waves of protests and demonstrations; also, concerning HIV, with the appearance of the first community and civil society responses to HIV and intensive collaboration across borders. In this context, ‘thick times’ is meant to reflect a certain congestion of actors, events, emotions, actions and ideas, which are in progress and remain fluid. The inspiration for analysing the past experiences entangled with temporalities came directly from oral history interviews with activists, people living with HIV and policy-makers, who, in their narratives, unfolded a contradictory, complex and heterogeneous portrayal of the beginning of HIV/AIDS activism in Poland, assembled from different social realities. Their stories unravel a specific, tense atmosphere of the 1990s, built upon, on the one hand, hope and a sense of belonging to a community, ‘a feeling that you have an influence’, and, on the other, on the politics of uncertainty and fear and a sense of being rejected from society. By looking at different biographies and trajectories of engagement in the HIV/AIDS field, I want to examine how various actors conceptualize and reflect upon ‘thick times’.

Structurally, this paper is divided into several main parts. It starts with a short presentation of the methodological background of the research. Then, I explain how temporalities are analysed and conceptualized in social movement studies and discuss the proposed notion of ‘thick times’ in more depth in relation to my fieldwork. In the third part, the main empirical findings are explained through exploration of a phenomenon outlined in the activists’ accounts: transnational cooperation. The final parts consist of the discussion of the results in the context of current HIV/AIDS policy developments and crucial conclusions and reflections stemming from the research.

Methods of the study

My study was part of a broader international research project implemented between 2016 and 2019.⁹ The main aim of the Disentangling European HIV/AIDS Policies: Activism, Citizenship and Health (EUROPACH) project was to investigate how HIV/AIDS policies are created, negotiated, lived and understood through time and space by various actors involved in them in different European regions and countries. In the project we applied the notion of ‘policy worlds’, which had been introduced by social anthropologists and defined as a term which ‘does not imply essentialised or bounded entities’, but rather proposes to see politics as ‘windows onto political processes in which actors, agents, concepts and technologies interact in different sites, creating or consolidating new rationalities of governance and regimes of knowledge and power’.¹⁰ Such an approach to studying politics and activism allowed us to explore them as ‘productive, performative and continually contested’¹¹ processes.

Susan Wright and Sue Reinhold emphasize that exploring ‘policy worlds’ requires ‘studying through’ collected materials.¹² The approach of ‘studying through’ is composed of three main elements. The first involves applying multisided ethnography and a wide definition of the research field.¹³ In my study, oral history interviews were preceded and then accompanied by extensive participant observation during conferences, meetings and public events organized in the field of HIV, as well as by archival research conducted in several different archives (including the LGBTQ Archive run by the Lambda Warsaw Association, the Q Foundation Archive in Warsaw, the London School of Hygiene & Tropical Medicine Archive and the Central Archives of Modern Records in Warsaw – AAN). The second element assumes that ‘“studying through” involves a history of the present, with an awareness that each event has multiple potential effects with unpredictable significances for the future’.¹⁴ According to such an approach, a singular event should be seen as a ‘starburst with effects radiating in all directions, across sites and scales’.¹⁵ Looking at the narrations of HIV/AIDS activists regarding how they experienced past events, we can explore different – often contradictory – elements constructing HIV/AIDS policy worlds. The last component of ‘studying through’ is an openness to the wider political, historical and social context of the given event. In my study, analysing the first responses to HIV, from civil society organizations and affected communities, is linked with the political and economic transformation of 1989.

The research on HIV/AIDS policy worlds in Poland included archival research, participant observation and oral history interviews. The latter are crucial for the analysis presented in this article. Interviews (22 in total – 12 with women, 10 with men) with people living with HIV, activists, policy-makers and civil society organizations’ representatives were carried out in the largest Polish cities, with 14 of them conducted in Warsaw. I invited to participate in the study both long-term activists, who responded to HIV as early as the end of the 1980s and the early 1990s, and those who joined the movement later – usually in the early 2000s.

The majority of the collected narratives, however, pertain to the beginning of activism in the field of HIV, drug use and sexual rights. Some of the research participants were involved in early gay activism, while the others were working primarily in the field of drug use and harm reduction. However, all of them described their involvement with reference to HIV and AIDS. Applying oral history interview methods created an opportunity to collect individual biographies of activists and follow their ways of framing time in the context of their engagement. The interviews started with a question about the participants’ first memories and experiences related to HIV and AIDS. Then, the questions followed the narratives of the research participants, ending with issues pertaining to current experiences. The tense atmosphere of the transformation period, presented in the activists’ and policy-makers’ recollections during the interviews, was also noticeable in the archival materials I analysed. Popular dailies in the transformation era, for example, alternately published alarming news about HIV from different parts of the world and calls for tolerance and respect for people living with HIV. Thus, I treat the notion of thick times as embedded in materials and narratives collected by using various research methods.

Theoretical background and conceptualization of thick times

When it comes to activism and social mobilization, time seems to play a crucial role. It is not only about a need to respond to certain urgent social, political and economic events and changes in the ‘right’ moment: it is also about the capacity of activists to navigate through different times and temporalities. Social movement scholars have already documented different ways in which activists, civil society organizations and movements experience, organize and frame the life cycle of the movement (e.g. through the lens of increasing mobilization or as a routine of daily activities).¹⁶ Virginia Berridge, for example, in her study on HIV/AIDS politics in the UK, has argued that we may analyse AIDS history through different processes happening temporally, involving different actors and revealing complex dynamics of power in doing politics.¹⁷ Berridge points to a cyclical dimension of the policy developments, in which some processes and elements are recurring. She also underlines complex and sometimes contradictory processes happening within the policy worlds.

Considering different agents, standpoints and a dynamic distribution of power, Berridge distinguished four phases in responding to AIDS between 1981 and 1994. The first phase – policy from below – pertains to early activities among gay men and some clinicians in the UK, who, being ‘outside the normal policy-making circles’,¹⁸ were given an influential position in the policy worlds despite the sustained power of traditional health policy-making. That period, named by Berridge as ‘a period of incoherence, of absence of knowledge, of “groping in the dark”’,¹⁹ has often been left out in the discussions of HIV/AIDS policy history, yet it is important as it demonstrates how AIDS became a ‘policy problem’ and how gay men together with medical professionals created a ‘policy community’. Doing politics from below was followed by the second phase, wartime crisis, in which the topic of AIDS received much attention in media informing the public about the epidemic in an alarming and moral-panic manner. Even though AIDS became a national emergency, the government response promoted a rather liberal approach, consisting of safer sex messages and harm reduction. The late 1980s brought, on the other hand, a normalization of the disease, which started to be seen as a chronic condition with palliative care available. But normalization also meant, to a certain extent, the depolitization of AIDS, which started to be questioned at the beginning of the 1990s. Some voices coming from the gay community were calling for a ‘regaying’ of AIDS. What seems to be important in this periodization of HIV/AIDS policy developments is a focus on a variety of actors, their dynamic relations, the complex distribution of power, and the influence and non-monocausal explanations or interpretations of AIDS policy formulation. Such an approach is also crucial in my study.

Furthermore, concerning time and social movements, researchers have also conceptualized ways in which activists negotiate their relations with the past, present and future in their activist engagement. Social movements are usually driven by elusive utopias from the future, rarely experienced in the present time.²⁰ They can also be guided by events, symbols or ideas from the past and express nostalgia for previous, often lost, social realities.²¹ Thus, activists continuously navigate temporalities by linking their mobilization with symbols, ideas, technologies from the past, present and possible or imagined futures. Other scholars writing on temporal dimensions of social mobilization have questioned the general assumption that there is a linear trajectory of progressive social movements and sexual politics.²² Judith Butler, for example, demonstrates how ways of seeing sexual politics in Western countries are entangled with a certain notion of time. The conceptualization of the ‘time we are in’ or ‘this time’ reveals a hidden expectation emergent in some politics and movements that shows how ‘certain secular conceptions of history and of what is meant by a “progressive” position within contemporary politics rely on a conception of freedom that is understood to emerge through time, and which is temporally progressive in its structure’.²³ This linear vision of progressive development is also questioned by Joanna Mizielińska and Robert Kulpa in their study on temporalities of queer activism in CEE. The researchers proposed to analyse the queer activism that emerged in CEE after the ‘end of communism’ through its coincidental, ‘knotted’ temporalities. The ‘knotted’ time here reveals that in the region various concepts, ideas and ways of organizing and struggling for sexual rights originated at once – after 1989 – while in the Western countries they are rather seen as having developed more linearly.²⁴ The scholars present how past and present endeavours of Western movements and their respected visions of the future are knotted or entangled together in the CEE context.

Concerning CEE, focusing on 1989 as a breaking point in its recent history makes overlooking queer or HIV/AIDS activism happening on a small scale under the state socialism easier. Although in my paper the analytical focus is on ‘thick times’ – i.e. the 1990s – due to how temporalities of the past have been constructed in the collected narratives, it is also important to remember that HIV-related activism and policy measures existed before then. For example, regarding gay or queer activism Tomasz Basiuk explored the narratives of gay men regarding the 1970s in socialist Poland to search for any signs of their political involvement. He argues that although political awareness and engagement conceptualized on the basis of Western experiences did not take place in Poland, we may interpret both semi-public discourses on homosexuality and private networking between gay men in the pre-AIDS era as proto-political sociality which enabled political activism later, including HIV-related mobilization in the late 1980s and early 1990s.²⁵ Thus, focusing on a particular moment of activist history should not lead to the perception of this moment as being abstracted from the broader socio-political context – quite the opposite. Rather, it should allow us to analyse the history of activism as a multi-subject, dynamic, internally contradictory process, composed of different social realities and experiences, anchored in their past, present and desired futures.²⁶

Conceptualization of thick times

These reflections on the dynamics of social movements, politics and time, as well as power relations in constructing the history of HIV/AIDS and the need to look at past events through a broad socio-political context, allow me to unravel the meaning of ‘thick times’. The intersection of the first responses to the epidemic with transitional changes taking place in Poland in the early 1990s is crucial for understanding the notion of ‘thick times’, its ambivalences and the ways in which activists frame their experience from that period. During the transition period, new social problems emerged and became visible, and new groups united into communities and demanded that their voices be heard (e.g. the feminist movement). At that time, LGBTQ communities and HIV/AIDS organizations started to form, and the issue of drug use appeared in public discourses more and more often. The transformation also signalled the opening of borders, thus enabling international cooperation centred around HIV. Although for some people the social and economic changes related to the transition have been advantageous in terms of economic stability and social stratification, as well as for pursuing individual careers and gaining recognition of their rights, within Polish society there were also vulnerable groups for whom transformation meant a reduction in quality of life, long-term unemployment, an increase in poverty and a lack of stability. All these changes were and still are fundamental to the current shape of public policies, including those related to HIV/AIDS.

Jill Owczarzak argues that ‘during the period of transition, when uncertainty surrounded the terms of the postsocialist condition, public debates about HIV reflected more generalized public concerns about the shape of democracy, power, and authority in the new social and political order’.²⁷ Thus, mobilization around HIV/AIDS, as well as rights to health and treatment or to die in dignity, emerged in Poland in the context of on-going changes, chains of reforms and emerging political discourses. Following Berridge’s analysis of power in the processes of producing AIDS as a political problem in the UK, in relation to the Polish context we can distinguish several key stages and ‘milestones’ in the development of HIV/AIDS policies and activism in the 1980s and 1990s. In the collected narratives, the 1980s are often presented through the prism of the failure of the state to provide any kind of care to people living with HIV and AIDS. These reflections concern mainly health care, but they also refer to the lack of a systemic approach to public health in general. Indeed, lack of equipment, lack of knowledge and procedures, and misinformation were often mentioned in the interviews with those participants who were already involved in politics in the 1980. This failure can be illustrated by the first national HIV/AIDS programme (for the period 1988–1990), which was prepared and approved in 1988 as a response to the World Health Organization call for preparing national prevention programmes but not implemented in practice.²⁸

The year 1989 marks a breakthrough, with the early 1990s being characterized by protests by local communities against care homes for people living with HIV, which are sometimes perceived as a specific Polish ‘Waterloo’.²⁹ It is also the time of the establishment of the very first gay-lesbian organization, HIV/AIDS associations and the beginning of international cooperation, which culminated in the mid-1990s with the emergence of, among others, a United Nations Development Programme in the CEE region.³⁰ Organizations like the French AIDES, Deutsche AIDS Hilfe, Swedish Noah’s Ark and the Association of Polish Gays and Lesbians in Canada are often recalled by research participants as demonstrating the significance of open borders and transnational networks. As far as governmental institutions are concerned, 1993 is an important moment, as it is then that the Ministry of Health’s agency responsible for shaping HIV/AIDS policy, the National AIDS Centre, was established and quickly entered into close relations with the emerging NGOs. Research participants indicated that the second half of the 1990s was marked not only by introducing effective HIV treatment (at the end of 1996) but also by international organizations deciding to ‘leave’ Poland (and some other CEE countries) due to the relatively good and stable economic and epidemiological situation in the region.

But such a short periodization could be also problematized or elaborated in a different way, for example, through including another key actor in the field and posing a question about the role of the Catholic Church in HIV/AIDS policies. Jill Owczarzak claims that in the socialist period of the HIV epidemic the public debate on HIV/AIDS was not yet framed through the moral lens. Rather, it focused on relations between the socialist state and citizens, and on how state institutions failed to deliver (health) care services.³¹ The moralized and more antagonized discourse around the virus (and sex particularly) emerged later with the active involvement of the Catholic Church in the post-transformation politics. Another way of looking at the history of HIV/AIDS policy worlds could be in reference to experiences of different populations affected by HIV. Renee Danziger shows that the campaigns from the early 1990s organized by the Ministry of Health or its agencies gave centre stage to information about heterosexual transmission and did not respond to the needs of the most vulnerable populations.³² Materials addressed to men having sex with men and people who use drugs were produced mainly by NGOs with financial support from international agencies. Stories of people who inject drugs and of men who have sex with men also differ significantly. While voices of the first community have been mediated throughout the years by a dominant NGO in the field of drug use – MONAR – which promoted an abstinence-only approach and profoundly influenced restrictive drug policies in Poland, the queer community slowly achieved visibility in public discourses by self-organizing both formally and informally (although it did not necessarily translate into recognition of LGBTQ rights until now). Thus, proposing to call the period of the 1990s ‘thick times’ is not about telling a complex and contradictory story in detail; rather, the aim is to show how this time of social ferment is remembered and was lived through by the research participants.

‘Thick times’ in this article refers to the intersection of three different elements: actors, emotions and articulations of claims. These elements are intertwined and distinguished on a conceptual level to guide the analysis. The first element – actors – refers to narrating past actions through the prism of diversity and changeability of different actors involved in constructing and shaping HIV/AIDS policy worlds. The narratives of the research participants uncover unclear, often blurred, boundaries between public institutions and nongovernmental organizations. This is, for example, visible in the stories which point to the 1990s as the period of ‘being together’ despite different positionalities regarding policy worlds. One of the first people who joined the National AIDS Centre in 1993 during the interview described these relations in the following words:

And actually, at this moment, I think, this boundary between civil society representatives and us – so-called bureaucrats – vanished. We had a lot of meetings, actions together, we were learning together, and together we participated in workshops.

This way of framing ‘the time when we were all together’ can be seen to some extent as an effect of the politics of fear. Research participants stated that uncertainty emerging from the systemic transition, and fears related to the new virus, shaped close collaboration between organizations and government representatives and created strong relationships between them.

Following Matt Cook’s remark about taking the past emotions associated with HIV/AIDS activism seriously,³³ and exploring them as mobilized across ‘those much touted lines between public and domestic, between internal and external experience, between subjectivity and society’,³⁴ we might also read ‘thick times’ through feelings attached to them and explore how memories of the past events are fuelled with empathy, anger, sadness, joy or uncertainty. In the 1990s, HIV and AIDS were framed in public discourses through the politics of fear, rejection and immorality (as one of the research participants put it: ‘We dealt with a total fear of AIDS in the society’). As Cook claims, following Sarah Ahmed, emotions are ‘sticky’ and can be traced in a radically changed context as well.³⁵ They are also archival, as they hold within them social contexts, relations and ephemeral experiences. Hanna (quoted later), an activist involved in HIV/AIDS from the first half of the 1990s to the present day, in answering the question about what HIV meant for her, evokes a oppressive atmosphere of understatements, silence, fear and rejection.

[HIV meant for me …]Oh Jesus, everything, nothing. Because it meant so much to me, I was also one of the first founders of the association[in 1993].[I learned about my diagnosis]in 1987, when you didn’t know about HIV, you didn’t talk about it, people thought it could be transmitted by all routes at the time. I worked in the health care, I was asked to terminate my employment contract. My world was simply completely ruined. I don’t remember many things from that period, I drank an awful lot, and nobody knew, except that everyone knew, nobody knew, because I didn’t officially tell anyone about my infection. But somehow at work they found out.

For Hanna, HIV meant ‘everything’ and ‘nothing’, which became for her a reason for self-organizing and joining the struggle. This leads us to the third component of the ‘thick times’ – articulations of claims. Looking at the examples of civil disobedience in the era of the HIV/AIDS epidemic in the West (for example, due to ACT UP activities in different countries),³⁶ we can ask about similar forms of bottom-up self-organizing in Poland. Although the dominant narrative about activism in the early 1990s is that of international cooperation and ‘being together’, the collected stories also contain ephemeral, not fully traceable acts of rebellion. An illustration of this involves a story of a person living with HIV who, while fighting for access to treatment in Poznań, ‘had to lie down on streetcar tracks’ to force any reaction from the Ministry of Health. However, such stories remain fleeting, often told without details, rather as anecdotes. In the context of social protest, many of the stories and much of the archival materials are covered by the demonstrations of local communities against opening care homes for people living with HIV and people who inject drugs.

The dominant way of demanding rights was through setting up NGOs and closely collaborating with the governing bodies. Looking back at the activism from the 1990s through the oral history narratives, we could distinguish two main paths of self-organizing and developing HIV/AIDS politics from below: offering care services for people living with HIV; and prevention actions and promoting safer sex practices. The first was focused (although not exclusively) on delivering aid and support to people who injected drugs, mainly in an abstinence-only manner. A key actor shaping this path was MONAR, an NGO already established in the 1980s, and involved in countering drug addiction in Poland; later it also engaged in the struggle against HIV and AIDS. The second path, centred around prophylactic actions, was developed by HIV/AIDS and LGBTQ organizations which addressed their activities predominantly to gay men and less often to sex workers. The dynamic processes of articulating demands, for the actors involved in HIV/AIDS politics and the communities affected by the epidemics, presented in the narratives shows how activists were struggling with expressing their own voices, ideas and requests. In the context of an anomic atmosphere shaped by the structural changes Poland went through after 1989, the first civil society and community-based organizations took over the state role in providing basic health and social services and support to people living with HIV. In Tadeusz’ story, quoted here, he explains how NGOs taking on the role of the state in delivering healthcare to people living with HIV was a mistake – yet, at the same time, he realizes there was no other option:

And these charity concerts took place. And it was also such a big social event. For example, from the first concert we obtained funds to buy an ambulance to transport HIV patients. At that time, it was very important because emergency services refused to transport people living with HIV. Looking at it in retrospect, it was a malpractice on our side, because it was possible to force the emergency [to take people living with HIV]. But the emergency would not have been possible to force.

Newly established NGOs responded to the most urgent needs emerging at that time. At the same time, they collaborated closely with governing bodies, which made expressing their demands and critical reflections (e.g. regarding the influence of the Catholic Church on HIV/AIDS policies and prevention strategies) more difficult.

These bonds established in the past are today critically evaluated by civil society representatives who perceive their current position within the policy world as strongly entangled in relations with funders and governmental bodies created in the past. These relationships and mutual dependencies thus are sometimes seen by HIV activists as forcing them into constant manoeuvring within the policy worlds and testing the limitations of the activism.³⁷

Ambivalences of thick times

It was this breakthrough, it was 1989, when there was amnesty, there were a lot of homeless people, people leaving prisons in general, because of the amnesty, and we were two steps away from the central station, our clinic was there at Aleje Jerozolimskie [in Warsaw]. […] I remember, I think we started in August, there was one person, two, four, eight, sixteen in the following month, and that multiplied exponentially, among other things because drug users had problems with syringes, and there was a long tradition of sharing equipment. (Ilona)

There were still times when everyone was working together. It was a really very good time. The beginning of every misfortune is very mobilizing, solidifying, even though it is so bad, so heavy and cruel. People consolidate and unite so much that there really was a gleam, gleam in their eyes. Everyone had strength and desire. […] There was a clear enemy and we knew what we were fighting for and what we wanted. (Hanna)

These two statements from long-term activists – Ilona, working since the 1980s with people who use drugs, and Hanna, one of the co-founders of the first organization of people living with HIV – demonstrate tensions attached to the first responses to HIV. Similar stories were also told by other research participants. In the background of the personal narratives, activists often described dynamic and chaotic social changes and structural transformations of the new capitalist society (amnesty, homelessness, the increasing unemployment rate, and so on). They also recounted struggling with homophobic attitudes, tackling the ‘othering’ of drug users and the emergence of a new moral order after 1989.³⁸ This was particularly visible in violent protests among local communities against opening care centres in numerous localities. One of them was described thusly:

In July, there were tumultuous protests against residents of the treatment center for drug addicts, especially AIDS patients and HIV carriers […]. The reason for these conflicts was the fear and psychosis surrounding AIDS that has taken hold in some settings. They called for the isolation of and discrimination against AIDS patients. During the protests, there was a fight and stones were thrown at the buildings.³⁹

At the same time, during the interviews the research participants expressed a certain nostalgic feeling for the moments of working together, collaborating intensively and building close relations with each other. The exploration of how the past events are recalled in the present narratives reveals the ambivalent character of the experiences that took place after the transition. To grasp these ambivalences, in the following part of this paper I will discuss polymorphous experiences described in the interviews in relation to transnational collaboration and its impact on shaping the HIV/AIDS activism in Poland.

Transnational cooperation as an emotional experience of ‘thick times’

One of the key experiences related to ‘thick times’ was the transnational collaboration taking place in the early 1990s between emerging Polish NGOs and Western organizations. Meeting activists from Western Europe and participating in various conferences were often perceived by the activists as a milestone for the movement as they brought new ideas, prevention tools, and novel connections and relations. In the collected narrations, this collaboration was often framed in a very emotional way: meeting foreign activists enabled local groups and affected communities to see their present situation and possible futures through new emerging opportunities and gave them a sense of hope. Wojtek, a long-term activist from Warsaw, used to live in a care centre for people living with HIV/AIDS and people who used drugs in the early 1990s. In his story, Wojtek, quoted here, welcomed a ‘herd of people visiting’ the centre he lived in with a negative attitude – he as a person living with HIV felt tired of the Ministry of Health sending people from different organizations to the centre he lived in. His personal transformation from being a person with no perspective for the future to becoming an activist and a leader engaging in founding the first community-based NGO started due to a visit from the French organization AIDES.

It wasn’t until ’93 that my adventure with HIV started, in the sense of activism, because a delegation of the French organization AIDES came to Poland. I lived then in Konstancin in the first house for seropositive people […]. Well, there was a whole herd of different people there [visiting us], but they [French activists] were among them. I was already quite tired of the delegations of all kinds sent to us by the Minister of […], and I didn’t even want to talk to them at all, so I locked myself in the room. […] But somebody kept knocking on the door, constantly knocking on it, and in French, he asked if he could have a word or two with me for a moment. So I opened the door, I looked, an elderly man was standing in the door. It turned out that it was Daniel Defert, the founder of AIDES. He said: ‘I know you don’t want to talk to me, but it would be good if you met someone here who is here with us.’ And he introduced me to Bernard Sellier, he unfortunately died last year. And he presents him to me as a person who has been seropositive for many, many years. In fact, it was such a model copy from France to show in general that you can live longer if you have all the opportunistic diseases. So, when I saw Bernard, who was a 40-year-old at the time, he was over 40 years old, and I really saw how vigorous he was and how cool he behaved. I think to myself, damn it, something’s wrong with me, since I’m shutting myself out and I don’t want it, and here people can live with the virus. And that’s how it started. (Wojtek)

In Wojtek’s account, the possibility of meeting people with HIV actively engaging in the French movement despite having the disease gave him a new vision for his own way of living. He was then invited together with his colleague to visit Paris and Lyon to do a volunteering course there. On the plane returning from France, he decided to start a similar organization in Warsaw. But besides the personal and emotional dimension of the meeting, transnational collaboration also brought a novel repertoire of tools for self-organizing. This was particularly visible in the narrative of another activist, Robert, who joined the movement a few years after Wojtek and who described this cooperation with foreign activists as an ‘anchoring’ event in his biography:

Such a breakthrough and most important training for me was a training which was organized here in Warsaw, a few months later, in September [in 1995], by such a French organization as AIDES. It was probably already so anchoring for me, it was such an anchoring training for me, that I already stated then that this is the direction, that this is it, that I would like to work with such people, that I would like to work in this direction and that this is my way and this is how I wanted to take up a mission for life.

This training was so much a breakthrough for me that for the first time I met people living with AIDS, who were also living with HIV. […] But also the techniques that we were trained with, also as if the forms that the association chose to train us, it was something incredible, something unusual. We, I had the opportunity to experience on my skin various kinds of emotions, simulated emotions that can accompany people living with HIV, people living with AIDS and, for me, for a young boy, was something incredible and it was so groundbreaking.

Robert’s story, like Wojtek’s narration, presents the beginning of transnational collaboration as a groundbreaking moment for his engagement in the movement. The present actions of Western organizations, their tools, and their approaches to HIV became future horizons for Polish activists and shaped their respective policy worlds. This transfer of ideas and practices from the West did not happen without a struggle. Implementing knowledge and skills acquired through transnational collaboration produced a need for manoeuvring and navigating a complex terrain of local policy conditions. Although the cooperation with foreign organizations and international bodies was not entirely one-way, the archival research and oral history interviews support the view that Polish organizations were for a while perceived primarily as beneficiaries of Western ideas and strategies (‘they taught us’, ‘their cared for us’). This could be, for example, visible in leaflets which were often translated from foreign languages (English, French or German) to Polish with almost no modifications. Jerzy, an activist in safer sex initiatives in southern Poland, described struggling with translating the Western approach to the local context:

And among the things that I learned [from Western organizations] about the production of safer sex leaflets was that they had to be clear, they have to include sufficient information, so there are no unanswered questions left. Preferably they should use the language of the recipient, which in the West would be the gay ghetto, or whatever you call it, gay subculture, which did not exist in Poland at that time. So I had to manoeuvre between the language which was very medically official and maybe something that would be not so official, to make it less off-putting. […] But I couldn’t employ the language of the gay subculture, because it did not exist. If it did exist, it was not sufficiently developed to have such vocabulary or that vocabulary that could be used. And actually, even if they used certain words, they would object to seeing them printed. So this was a different perspective.

Some narratives about thick times, although fuelled with a similar density of memories about transnational collaboration, various actors involved and emotional experiences, present a more sceptical perception of the impact of this cooperation across borders. For some activists, participating in international events turned out to be dissatisfactory due to a lack of language skills. Others felt that although they were invited, they did not have many opportunities to impact the international policy in any way. For example, one activist based in Cracow mentioned that although he was very active on the international HIV/AIDS scene and participated in numerous conferences and meetings, he did not feel he had a chance to contribute to the discussion by bringing the needs of the region to the front of the stage, as it was already dominated by well-established and more experienced organizations from the West:

I was also involved in the kind of EuroCASO, European Council of AIDS Service Organizations, as a representative of Poland. So I became part of this machinery without having been able to influence it, because it was dominated by people from the West. And I think what they did was actually fine. But it did not represent the needs in some countries like Poland. So it could have worked much better in Germany, in France, or in England or in Sweden, but not here. And there was too little time to discuss it. Maybe if I had – that’s a reflection now – if we had had time to discuss it, then it could have been solved, maybe we would have come up with some ideas.

The dominant portrayal of transnational collaboration mapped out on the basis of the narratives is constructed by a variety of emotions (from happiness and joy through frustration to disappointment), involvement of multiple actors (organizations and governing bodies, but also new prevention technologies and tools), and the emergence of articulations of claims (both internationally and locally). The emotional dimension is strengthened by a nostalgic feeling for the past and a sense of ‘being left out’ which refers to the late 1990s. As the geo-political situation shifted, transnational cooperation also changed its shape. Poland was no longer considered a country in need of international support. Activists like Ilona, quoted here, did not see this moment as a positive change, but rather as something that brought a sense of loss.

I really don’t remember what year it was, but we were left in the lurch, after a few years [of collaboration]. It was not about having money for programs. […] But we had the impression that we were constantly getting information from the West and going to these conferences and they come to us, take care of us. I remember it even hurt, I don’t know what year it was when the French, whom we had the impression about that they were our older brothers, said that they now have Africa to deal with and thank you, goodbye. But there was a lot of friendship with them. Really, when we started to find out that the Noah’s Ark, for example, picked up and left, because we didn’t almost need anything since there is HIV treatment, yes? Or other activities, that some wards, clinics were closing, the whole structure was changing.

Grey realities? – framing the present

But I call the ’90s the HIV romanticism in my life. Afterwards it was a grey reality, the prose began. And there the most important ones were the first years. (Wojtek)

Hanna:

In general, there are probably too many other problems to deal only with HIV, because what is HIV now? And then it was new, new … it was like that. But what was HIV, what was it, actually? Threatening.

Interviewer2:

You mean the fear was big?

Hanna:

Well, I think that fear is also now. I have the impression that now we are afraid of too many things and we don’t channel one fear, right? It’s just that fear is so dispersed. Because back then you really lived easier, you really lived easier, damn it, you lived easier.

The two quotes presented here from long-term activists – Wojtek and Hanna – depict how the present is experienced and framed by HIV activists in relation to the past. In their biographical stories about the HIV/AIDS movement, the 1990s play a crucial role as they shaped the identity of the movement (and also the identities of some activists). Termed by some interviewees as their own ‘HIV romanticism’, the emotional and social spirit of the 1990s evolved from the density of actors, feelings and articulations of claims within the emergent HIV/AIDS policy worlds. It was anchored in a multitude of social actions and projects being undertaken in the field of HIV and drug use and demanding tolerance, access to health and human rights. This spirit also unravels emotional dimensions attached to the first responses. Narratives about thick times are sometimes used to contrast the past and present times. Wojtek talking about the grey reality, and Hanna drawing attention to the non-newness of HIV and the dispersed fear that is harder to live with, juxtapose these experiences of today’s virus ‘normalization’ with the ambivalent but compelling past. Hanna also mentioned the current invisibility of HIV among other problems. Other activists also agree that ‘HIV has been forgotten’ and it is hard to mobilize people to act even if the epidemiological and socio-political situation in the country seems to require urgent action. To give a recent example from my fieldwork, in response to the SARS-CoV-2 pandemic, in 2020 the Polish government, as part of the so-called Anti-Crisis Shield, introduced amendments to the country’s Criminal Code and increased sentencing in cases of HIV exposure to up to eight years. This change, which is evidence of a punitive turn in governing society, was included in other measures to combat COVID-19 without any justification or public discussion. However, this amendment evoked almost no response from HIV/AIDS organizations.

In this context, the 1990s gain an additional dimension of ambivalence precisely because they are often cited as the only period in which, despite the difficulties and social fears, so much has been done in the field of HIV/AIDS. The subsequent withdrawal of international organizations from the region, conflicts between organizations created after 1989, and the impossibility of getting out of relationships and bonds established between social actors in the past remain somewhere on the margins of oral histories. Amy Tooth Murphy, by recalling the notion of chrononormativity, draws attention to the norm of linearity between the past and the present which does not match the experiences of queer communities.⁴⁰ A heteronormative order reproduces and sustains certain visions and stages of life which queer people cannot or do not want to follow. Chrononormativity can also be applied to the oral history of social activism, in which talking about failures, difficulties or conflicts can disturb the common belief in the chronology of successes and progress in relation to HIV.⁴¹ Gaps, unfinished anecdotes or silence in relation to the history of activism may help us to understand and disentangle to some extent the complexities of the policy worlds, in which dominant narratives overshadow less normalized standpoints and perspectives.

Conclusions

In this article, the notion of ‘thick times’ pertains to the first years of HIV/AIDS activism in Poland, which took place just after the political and economic transformation in 1989. In their accounts, HIV/AIDS activists presented past events, the atmosphere related to them and their experiences from the 1990s through the lens of a feeling of being part of the community, a sense of working together despite the odds. The method of studying through that I applied in my study is based on certain epistemological reflexivity, which requires ‘awareness of the wider historical and political context in which actors and events are framed, and an analytical openness not only to the conditions that have produced the present but to what the present is producing’.⁴² Following these arguments, one can look at how the present of HIV/AIDS activism in Poland has been produced through constant recalling of the previous sense of belonging to the community. In the oral history interviews, these past events and actions are often contrasted with the present times, in which activism is framed as much more professionalized and stable. Thinking of the romantic atmosphere of the 1990s retrospectively enables long-term HIV/AIDS activists to distance themselves from the present movement, which has become to some extent much more based on professionalized actions. This could be also seen as a way of escaping the chrononormativity of social movements and biomedical success related to HIV.

Acknowledgements

I would like to thank all of the research participants who agreed to meet with me and discuss HIV/AIDS policy worlds in Poland. I also want to express my gratitude to colleagues from the EUROPACH project for supporting my research and ideas. Special thanks go to Dr Agata Dziuban, the Polish team leader in the project. I would like to thank the anonymous reviewers for their critical and generous comments, and Maya Berger for a wonderful proofreading of the article.

Disclosure statement

No potential conflict of interest was reported by the author.

Additional information

Funding

This work was supported by the Humanities in the European Research Area (HERA) [HERA.15.093] under the Uses of the Past (2016–19) programme. This article is made open access with funding support from the Jagiellonian University under the Excellence Initiative – Research University programme (the Priority Research Area Heritage).

Notes on contributors

Justyna Struzik

Justyna Struzik is an Assistant Professor at the Institute of Sociology at Jagiellonian University, Poland. She received her Ph.D. in sociology from the Institute of Sociology at Jagiellonian University with a thesis entitled ‘Queer Movements in Poland’. During 2016–19 she was a Postdoctoral Researcher in the ‘Disentangling European HIV/AIDS Policies: Activism, Citizenship and Health’ project. She has participated in numerous research projects focused on discrimination and inequalities in an intersectional perspective, with special attention given to sexual identity, gender and place of residence. She is a co-author of two studies on the social situation of non-heterosexual women living in the small towns and rural areas of Poland, and a co-director of a documentary about legal difficulties encountered by a transsexual person in Polish society (2008, together with Julie Land) entitled ‘Trans-mission’. She co-authored Różnym głosem: Rodziny z wyboru w Polsce (‘In Different Voices: Families of Choice in Poland’ [2017]) with Joanna Mizielińska and Agnieszka Król, and is the author of Solidarność Queerowa: Mobilizacja, ramy i działania ruchów queerowych w Polsce (‘Queer Solidarity: Mobilisation, Frames and Actions of Queer Movements in Poland’ [2019]). Her current studies focus on how people who use drugs and drug activists in Poland navigate criminalized landscapes.

Notes

1. Owczarzak, “Mapping HIV Prevention in Poland,” 107–17.

2. Szulc, Transnational Homosexuals in Communist Poland, 125–53.

3. See, for example: Chetaille, “Une « autre Europe » homophobe ?” and Struzik, Solidarność queerowa.

4. See Dunn, Prywatyzując Polskę; and Malinowska-Sempruch, “HIV among Drug Users in Poland.”

5. For similar memories regarding the first responses to the epidemic from below in different countries, see, for example: Gould, Moving Politics; Berridge, AIDS in the UK; and Nakayama, “Act Up-Paris.”

6. Some actions were undertaken by the government but with no systemic approach. For example, in 1987 the Ministry of Health and Social Welfare distributed a leaflet about the epidemic to all Polish households. In fact, the information presented in these non-pre-tested leaflets was very unclear. See Danziger, AIDS Public Education in Poland, 5–6.

7. See, for example: Berridge, AIDS in the UK; and Ware, HIV Survivors in Sydney.

8. In her research on ACT UP activism Deborah Gould applies the notion of ambivalence to describe complexities of gay and lesbian politics, based ‘on a simultaneous acceptance and rejection of one’s sexual desires’. While her reflection showing how this ambivalence has been socially structured is very valuable as it allows to understand the first bottom-up responses to HIV and AIDS in the United States, in my analysis on ambivalence of thick times I want to shift attention from nonnormative sexuality and related politics to HIV as such, and include voices from other communities affected by the virus, including people who use drugs. See Gould, Rock the Boat, 137.

9. The Disentangling European HIV/AIDS Policies. Activism, Citizenship and Health (EUROPACH) project was financially supported by the HERA Joint Research Programme 3 Uses of the Past, which is co-funded by AHRC, AKA, BMBF via DLR-PT, CAS, CNR, DASTI, ETAg, FWF, F.R.S. – FNRS, FWO, FCT, FNR, HAZU, IRC, LMT, MIZS, MINECO, NWO, NCN, RANN?S, RCN, SNF, VIAA and VR and the European Commission through Horizon 2020. For more information, visit: europach.eu.

10. Shore and Wright, “Conceptualising Policy,” 2.

11. Ibid., 2.

12. Wright and Reinhold, “Studying Through,” 101.

13. Marcus, “Ethnography in/of the World System,” and Balsiger and Lambelet, “Participant Observation.”

14. Wright and Reinhold, “Studying Through,” 101.

15. Ibid.

16. See, for example, Melucci on visibility and latency as reciprocally correlated phases: Melucci, “The Symbolic Challenge of Contemporary Movements.”

17. Berridge, AIDS in the UK.

18. Berridge, AIDS in the UK, 6.

19. Ibid., 13.

20. See, for example, Muñoz, Cruising Utopia.

21. This could be observed in the recent mobilization in Poland regarding reproductive rights, centred around the notion of ‘strike’ and linking the current protests with past labour strikes. See, for example: Kubisa and Rakowska, “Was It a Strike?”

22. Butler, “Sexual Politics, Torture, and Secular Time”; and Mizielińska and Kulpa, “Contemporary Peripheries.”

23. Butler, “Sexual Politics, Torture, and Secular Time,” 3.

24. Mizielińska and Kulpa, “Contemporary Peripheries,” 15.

25. Basiuk, “Od niepisanej umowy milczenia do protopolityczności.”

26. Regarding contingent and complex genealogies of social movements in Poland, see, for example Grabowska, Zerwana genealogia.

27. Owczarzak, “Mapping HIV Prevention in Poland,” 101.

28. Stapiński, “Jest Program – a Teraz Codzienna Praca.”

29. Janiszewski, Kto w Polsce ma HIV, 227.

30. Regarding harm reduction, HIV and transnational cooperation, see, for example: Coffin, “Marketing Harm Reduction.”

31. Owczarzak, “Mapping HIV Prevention in Poland,” 103–8.

32. Danziger, AIDS Public Education in Poland, 4.

33. Cook, “Archives of Feeling,” 51.

34. Ibid., 48.

35. Ibid., 73.

36. Gould, Rock the Boat.

37. Regarding the notion of manoeuvring and HIV/AIDS activism in Poland, see: Struzik, “Lawirowanie.”

38. Keinz, “European Desires and National Bedrooms?’”

39. Kornak, “Brunatna Księga 1987–2009,” 9–10.

40. A lecture, ”‘The Continuous Thread of Revelation”: Chrononormativity and the Challenge of Queer Oral History” by Amy Tooth Murphy, is available from the Institute of Historical Research: https://www.youtube.com/watch?v=9M3Jjewg4Ow&ab_channel=SchAdvStudy.

41. Regarding termporal regimes of HIV/AIDS activism in Europe and the notion of chrono-citizenship, see, for example: Dziuban and Sekuler, “The Temporal Regimes of HIV/AIDS Activism in Europe.”

42. See above 10. 107.