Beyond the lab: Eh!woza and knowing tuberculosis

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Abstract:

Eh!woza is a public engagement initiative that explores the biomedical and social aspects of tuberculosis (TB) in South Africa. The project is a collaboration between scientists based in an infectious disease research institute, a local conceptual/visual artist, a youth-based educational non-governmental organization (NGO) and young learners from a high-burden TB community. The learners participate in a series of interactive science and media production workshops: initially presented with biomedical knowledge about TB and, in later sessions, are trained in creating documentary films and engage with ideas around visual representation. The participants are encouraged to make use of this newly acquired knowledge to tell stories from their chosen communities in Khayelitsha, a township in Cape Town. Through its engagement with the complex manner in which TB is experienced, framed and understood by biomedical scientists, young people, and those who have been affected by the disease, Eh!woza presents alternative ways of exploring the complexities of human illness. The integration and interrogation of biomedical understandings, lay narratives and the young participants’ framing of the disease poses questions about ’knowing', and the meanings people attribute to ways of ’knowing' and the actions they impel. The project also presents contrasting reflections on cure—from a biomedical perspective, and care—from the perspective of TB-affected young people and community members. In this article, we describe the Eh!woza project, present thoughts from the participating students on the science and media workshops, and detail the narratives of ill-health and disease from people within their neighbourhoods. We conclude with a critical analysis of the complexities of knowledge communication, notions of cure versus care, and a consideration of the potential contribution of this project to the growth of medical humanities in Africa.

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Publisher: Institute of Medical Ethics Section: Original research