Preliminary Programme

Wed 4 April
    8.30 - 10.30
    11.00 - 13.00
    14.00 - 16.00
    16.30 - 18.30

Thu 5 April
    8.30 - 10.30
    11.00 - 13.00
    14.00 - 16.00
    16.30 - 18.30
    19.00 - 20.15
    20.30 - 22.00

Fri 6 April
    8.30 - 10.30
    11.00 - 13.00
    14.00 - 16.00
    16.30 - 18.30

Sat 7 April
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    11.00 - 13.00
    14.00 - 16.00
    16.00 - 17.00

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Wednesday 4 April 2018 16.30 - 18.30
ZA-4 ORA04 Understanding AIDS Activism and Public Health Policy in Europe through Oral History
Mc Mordie Hall School of Music
Network: Oral History Chair: Beate Binder
Organizer: Christopher Ewing Discussant: Beate Binder
Agata Dziuban, Todd Sekuler : Tracing the Contours of Europe in Oral History Narratives about HIV/AIDS
In addition to the widely-used notions of Central, Eastern and Western Europe, some actors in the field of HIV/AIDS refer to “little Europe” and “big Europe” to distinguish between the limited reach and scope of the institutions of the European Union – which have as logical focus the current (or ... (Show more)
In addition to the widely-used notions of Central, Eastern and Western Europe, some actors in the field of HIV/AIDS refer to “little Europe” and “big Europe” to distinguish between the limited reach and scope of the institutions of the European Union – which have as logical focus the current (or sometimes also future potential) EU member states – and the more expansive stretch of countries that make up Europe as per the definition in use by the World Health Organisation and its European regional office. An actor-focused concept of Europe, alternatively, would allow for Europe to take shape through the initiatives of actors (advocates, community members, funders, institutions or other authors of policy instruments) in the field. Such an approach more fittingly grasps Europe as a contingent and contested entity, the fluctuating borders of which – be they material or symbolic; national, regional or community-produced – embody both the context for and consequence of enforcing, negotiating and disputing the policies that determine Europe’s political, social and economic life. In analysing the process that drove the production of material about European-level policy worlds by the two authors as part of the “Disentangling European HIV/AIDS Policies: Activism, Citizenship and Health” (EUROPACH) research project - together with the oral history interviews that constitute the archive itself -, diverging, interconnected and at times conflicting concepts of Europe take shape. This presentation will explore how shifts (1) in the favoured and available forms of treatment and prevention, and (2) in resource distribution by major international funders affect the on-the-ground concepts of Europe that are mobilised. As we will show, the notions of Europe that emerge in oral history narratives are at times intentionally deployed, uncritically reproduced or emerge in responding to the immediate needs of an individual or group, and reflect the varying subject positions and interests of the diversity of stakeholders engaged in the field of HIV/AIDS. (Show less)

Christopher Ewing : The Emotions of Anti-Discrimination Activism in the Deutsche AIDS-Hilfe
Beginning in 1982, the year AIDS was first identified in the Federal Republic of Germany, the epidemic disproportionally affected already vulnerable and marginalized groups, including gay men, sex workers, drug users, and certain migrant communities. Because of this fact, AIDS quickly became associated with deviant sexual practices, criminality, and racial ... (Show more)
Beginning in 1982, the year AIDS was first identified in the Federal Republic of Germany, the epidemic disproportionally affected already vulnerable and marginalized groups, including gay men, sex workers, drug users, and certain migrant communities. Because of this fact, AIDS quickly became associated with deviant sexual practices, criminality, and racial otherness manifesting in social and sometimes political discrimination against people living with HIV and AIDS. In 1983 the Deutsche AIDS-Hilfe (German AIDS-Help, or DAH) was founded as an umbrella organization of local chapters to both resist this discrimination and combat the disease. By the mid-1990s, however, the work of the DAH had expanded to fighting against all forms of racial and sexual discrimination in Germany, the motivations for which are largely missing from the written record. This presentation will examine interviews conducted by the author with members of the former DAH leadership, as well as current members of local chapters, to chart the reasons for this shift. In doing so, this presentation will uncover the deeply personal and sometimes-contradictory relationships individual activists had with questions of racial and sexual discrimination. While some activists saw fighting all forms of discrimination as a natural development of fighting against AIDS stigma, others described themselves as intervening in an organization that was failing to account for the racial diversity and sexual practices of people living with HIV and AIDS. In some instances, activists related anti-discrimination policies to their own experiences with death, loss, and disease, which require methods from the history of emotions to fully analyze. This paper will examine the emotional experiences relayed in these interviews, the tensions within the DAH as an organization, and the politics of AIDS in Germany more broadly to show how racism and homophobia came to be thought of together in this context and the limitations of the DAH to effectively work against both. (Show less)

Ulrike Klöppel, Eugen Januschke : Struggling to Open up the Narrative Harmonization of the AIDS Crisis in Germany
During the 1980s, HIV/AIDS provoked diverse forms of political mobilization and self-help structures in Germany: peer counseling, conferences of publicly identified HIV-positive persons, drag shows, exhibitions and other cultural events addressing Aids-politics, church groups, self-help networks of women, drug users or migrants, cross-movement manifestations, die-ins and other forms of direct ... (Show more)
During the 1980s, HIV/AIDS provoked diverse forms of political mobilization and self-help structures in Germany: peer counseling, conferences of publicly identified HIV-positive persons, drag shows, exhibitions and other cultural events addressing Aids-politics, church groups, self-help networks of women, drug users or migrants, cross-movement manifestations, die-ins and other forms of direct action organized by ACT UP-groups, STOP-AIDS-initiatives, initiatives of sex workers, and so forth. These various forms of community initiatives preceded or coexisted with the foundation of the German Aids Service “Deutsche AIDS-Hilfe” (DAH) in 1983 and the beginning of state funding of the Service in 1985 that entailed its institutionalization and professionalization, bringing with it – allegedly – the depolitization of the organization. In cultural and social scientific research, the co-existence of diverse actors and political practices in the field of Aids activism and Aids self-help has gone largely underappreciated due to a state-, institution- and discourse-centered focus. Especially missing are praxis- and actor-focused studies on the emergence, consolidation and frictions of the movement. As a result, the movement’s heterogeneity, varied positions of power and any consequent tensions across actors as well as their emotional struggles have also gone unaddressed in the limited existing research on local or national engagements with the epidemic. The project “’Don’t criminalize passion!’ The AIDS Crisis and Political Mobilization in 1980s and early 1990s Germany” at the Humboldt-Universität zu Berlin (led by Prof. Beate Binder) seeks to better understand these more ‘messy’ aspects of the movement’s history with the support of interviews with former activists that provide a strong and sometimes only source for historical analysis. As with research on other topics that deal with pain and loss, many actors only superficially discuss critical or even painful experiences during interviews. This phenomenon is well known in biographical research: In an intended or unintended striving towards making sense, biographical narrations in general tend to select and harmonize the manifold events of an otherwise complex and contradictory life. However, presenting interviewees with statements by other activists, and asking them to offer their own perspectives on a given event, can open up a given narration and help to evoke more heterogeneous memories of circumstances, struggles and emotional experiences. In this presentation, the author presents one such exemplary interview, and discusses the useful as well as the potentially irreconcilable (ethically) problematic aspects of this method (Show less)

Emily Nicholls : Mapping AIDS Activism and Policy in the UK through Oral History Interviews
Many have commented on the government response to the HIV/AIDS epidemic in the UK as being slow to materialise, with rather little by way of a concerted response until 1985/6, years after the first recorded case in 1981. In this absence, a proliferation of voluntary organizations emerged to fill the ... (Show more)
Many have commented on the government response to the HIV/AIDS epidemic in the UK as being slow to materialise, with rather little by way of a concerted response until 1985/6, years after the first recorded case in 1981. In this absence, a proliferation of voluntary organizations emerged to fill the gap, often set up by those affected by the epidemic and who focused their efforts and energies on peer support, advocacy and education. As much of the voluntary or activist response in the early UK context was focused primarily on services which were not provided by the statutory sector, tensions emerged regarding the simultaneously “organisationalist” and “activist” roles taken up by some of these organisations. The necessity of mobilizing a self-help response in the early days also led to some in the sector to question – often upon later reflection – whether an approach which was more politically antagonistic might have been preferable. However, as many have argued, there was little other option.

Drawing on oral history interviews from the UK research on the project ‘Disentangling European HIV/AIDS Policies: Activism, Citizenship and Health’ (EUROPACH), this paper will discuss the relationship between HIV policy and activism in the UK context, focusing in particular on the voluntary response and the various challenges and tensions facing the sector at the time. In the process, the use of oral history interviewing as a method to unearth, map and understand the early UK response to the epidemic in its complexity will be addressed.
(Show less)

Justyna Struzik : Mapping Tensions: Polish HIV/AIDS Activism through the 1990s
Polish history of HIV/AIDS activism dates back to the late 1980s, a period when a specific knowledge about the virus was still not available in most of the countries of the Eastern Bloc. In that time there was a clear absence of centralized and complex policies at the state ... (Show more)
Polish history of HIV/AIDS activism dates back to the late 1980s, a period when a specific knowledge about the virus was still not available in most of the countries of the Eastern Bloc. In that time there was a clear absence of centralized and complex policies at the state level. In the beginning of the 1990s political and economic transformations taking place in the CEE created new political, discursive and cultural opportunity structures for social organizing and civil acting in the field of HIV/AIDS. On the one hand, it allowed for the strengthening of the Catholic Church and its greater involvement in humanitarian action/social assistance, also with respect to HIV, and on the other it contributed to the emergence of progressive social movements (including HIV/AIDS-related organizations) acting in the field of human and minorities rights. The 1990s also marked the processes of professionalization and centralization of the state policies in the field of HIV/AIDS and created social conflicts and protests around the attempts of building stationary centers for people living with AIDS (in several local communities), undertaken by MONAR - a Polish NGO working primarily with people using drugs. The purpose of the proposed presentation will be to look at activism in the 1990s on the basis of biographical interviews conducted with activists throughout Poland. By introducing voices of activists from different localities (both in terms of geographical differentiation and institutional and thematic diversity of organizations), the presentation will provide the mapping of personal stories of HIV activism. Special attention will be given to tensions and processes of negotiation emerging between various social actors involved in HIV/AIDS activism. Through the lens of individual, insider activist perspectives, selected debates on concepts, terms and approaches concerning HIV/AIDS activism and produced by HIV/AIDS activists will be explored. (Show less)



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