WP 5: Enduring social collectives after epidemics in Kenya
Lead by Ruth Prince, Erick Nyambedha and Wenzel Geissler.
Erick Okioma, Kenyan HIV activist of the first hour and leader of HIV community groups that, 2 weeks into the Covid-19 pandemic, use their experience to promote and produce facemasks. (March 2020)(Photo: Erick Okioma ©, with permission)
During the early 2000s, the western Kenyan epicentre of the African HIV/AIDS epidemic became the recipient of unprecedented transnational (mostly US government) funding, global activism and non-governmental support. As a result, hundreds of community-based organizations (CBOs) and patient advocacy groups came into being - all engaged with innovation in prevention and treatment of HIV. By 2020 HIV, although still widely prevalent, has become a manageable chronic ailment –some prematurely speak of the ‘end of HIV’ – and transnational funds have dwindled. Yet some of these social collectives persist, availing their social structures and expertise to emerging health challenges from NCDs to Covid-19. Some groups of ‘People Living with HIV/AIDS’ (PLWHA) have transformed into self-help groups, engaging in income generating activities. Others have expanded their health-related activism to new fields (e.g. water hygiene), or used the skills they gained (e.g. in home-based care or family counselling) to support patients with other ailments, e.g. in cancer support groups. In 2020, some HIV activist networks turned their attention to the new Covid-19 virus, mobilising their networks to convey information and produce and distribute facemasks. Introduced during the HIV epidemic, the fundamental concept of forming social groups, making claims and taking action around a specific disease entity persists and is adapted to new health challenges and emerging epidemics.
To engage with the diverse biosocial collectives associated with HIV/AIDS and explore their present activities, also in relation to the management of emerging diseases, e.g. cancer, diabetes, and Covid-19.
Which CBOs and patient groups persist beyond the ‘end of AIDS’ - or rather of transnational HIV prevention funding? How is their social and economic cohesion maintained? What economic activities and social and political activism do members engage in today? How are some of these groupings, and their technical skills, experience and expertise adapting to emerging epidemics and health challenges?
Building on 20 years of ethnographic research in western Kenya, first on HIV interventions and subsequently on NCDs, the researchers involved in WP4 will draw on long-term networks and engagement with organisations and their protagonists, in order to find the traces of patient support groups and forms of activism and claim-making. WP4 will extend long-standing collaborative work with these localised groups, pursuing the hypothesis that HIV/AIDS was a game changer in relation to public responses to epidemics and citizen-state relations, and that health-related forms of collective organisation and activism outlast HIV and make a durable imprint on post-HIV health system and disease control futures. We will identify community- and patient-support groups by examining archives and official reports, identifying key informants, visiting health centers and NGOS, and using snowballing sampling. Using a participatory approach with group members, we will map out the range of activities, locations and relations they engage in. Ethnographic methodology, participant observation, interviews and focus-group discussions will be used to trace histories and biographies of past and present group members, explore their legacies, and follow current activities.