Engaging with a public engagement project: Understanding TB from the experiences of the ill

By Bianca Masuku, Eh!woza

Students on a shoot day, interviewing a local resident in the neighbourhood of Nkanini.

Eh!woza is an evolving public engagement project focused on two infectious diseases (HIV and TB) that continue to burden communities within South Africa. The initiative is based at the recently awarded Wellcome Centre for Infectious Disease Research in Africa, and the Institute of Infectious Disease and Molecular Medicine at the University of Cape Town. Previously described on this blog, this piece provides insights into an anthropological investigation of the work of Eh!woza, as well as the personal and lived experiences of persons affected by TB throughout South African communities.

In 2013, Eh!woza was initiated with production of a pilot documentary that drew on the voices of youth within the township of Khayelitsha, a community just outside of Cape Town, South Africa with a high burden of TB and HIV. The film was created in order to share how the illness is understood within the community, and was filmed after a health workshop was held with students from IkamvaYouth, an educational NGO based in Khayelitsha. It opens with an interview with one student sharing a personal experience with a family member who suffered from TB:

“He died…it was…I don’t know. It was scary for him and for us…because we were living in the same roof and then we had to watch him. He was sweating all night. Coughing…sneezing…it was painful” (Eh!woza student, 2013)

From this, the documentary strings together the thoughts and experiences of young people and reflects their understanding of TB illness, how TB and HIV stigma is perpetuated and expressed, and the different ways in which people manage TB illness in their own communities. In doing so, their perspectives are highlighted and prioritised so that the story of TB illness is told from the point of view of those most affected. In its three years of existence, the Eh!woza project has evolved into an interesting platform for young people to document their own perspectives on TB as well as that of the community.

In the mini-documentaries that were produced by students themselves in 2016, youth managed to expose a number of intersecting issues that illustrate the complexities of TB illness within this community. As part of my anthropological engagement with the project as a PhD candidate working with Eh!woza, I have captured different moments spent with the students as they documented their interactions with local residents of the township of Khayelitsha, showing the complex way in which residents navigate the reality of the illness. Working closely with the students during one filming excursion, I made the following notes during a day spent with the students:

“We were lucky enough to find mam’Nokhaya outside of her home that morning. We had met her a few weeks ago during the students’ first filming day in the neighbourhood of Nkanini where she told us about the conditions that the residents had to navigate on a daily basis. On the afternoon of our second visit, we were introduced to her friend currently suffering from TB.

Her friend’s symptoms were misdiagnosed at the local clinic and her infection progressed from drug sensitive TB to multidrug resistant TB. During this conversation, her friend sat quietly with her hand covering her cheek and mouth. It was an anxious moment for me, always aware of and fearing the reality of infection looming around us while trying to relate to the narrative they were sharing. Mam’Nokhaya was upset about the situation because she believed it was caused by patient neglect at the clinic and in local health care spaces which in turn triggered stigma and judgement of TB infected people.

She understood TB as caused by the poor living conditions and dirt that she associated with municipal neglect. But she emphasised that the biggest problem with TB was the unstable relationship between treatment and social welfare support offered to TB patients during treatment. She explained that the treatment drugs required nutrition that many had no access to and that social welfare only provided support for two of the six to twenty-four treatment months. Mam’Nokhaya highlighted the challenges around understanding food insecurity and TB treatment in her township and issues around integrated care.

As she walked us out of her home, she painted a complex picture of how infectious diseases such as TB and HIV were tangled in the many issues that residents faced and required a complicated network of things and people in order to be addressed. Standing outside of a portable toilet that hadn’t been emptied in a month, Mam’Nokhaya said ‘how can we not get sick if this is how we live?’”

Using the Eh!woza platform, the doctoral research that I have developed works to create a more intimate reflection of how TB illness is navigated.

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