Living with HIV in South Africa

Ondertitel:studying dialogues between visual research methods and illness narratives

As we witness the growing impact of the COVID-19 pandemic and see how governments and politicians have responded, how the virus has been negatively portrayed, and the safety messages which have appeared all over the media, we are reminded of another virus which once had a similar impact, Human Immunodeficiency Virus (HIV) and Acquired Immunodeficiency Syndrome (AIDS). HIV and AIDS continue to remain a global public health issue that has taken the lives of almost 33 million people worldwide (WHO, 2020). Although we have seen a dramatic increase in access to effective HIV prevention and treatment and it has thus become a manageable chronic health condition, the statistics and the societal impact remain alarming (WHO, 2020). Sub-Saharan Africa remains the region most affected by HIV, with 1 in every 25 adults living with HIV, translating to over two thirds (25.7 million) of the people living with HIV worldwide (WHO,2020). Eastern and southern Africa remain the regions most affected by HIV, accounting for 45% of the world’s HIV infections and 53% of people living with HIV worldwide. South Africa is the sub-Saharan country with the highest distribution of new HIV infections and AIDS-related deaths (UNAIDS, 2018). Though statistics give us an objective account of the number of people whom the virus has impacted, they tell us little to nothing about how this virus has impacted on the lives of people living with HIV and AIDS. This PhD study focuses on the dialogue between visual research methods and illness narratives (which includes the experience of sickness and suffering) in the context of HIV and AIDS. Its key ambition is to explore the extent to which an engagement with playful and creative visual participatory methods can allow us to explore new dimensions and angles for understanding what it means to live with HIV. Fieldwork for this study was carried out with a selected number of participants between the period of November 2015 and January 2019 in the Western Cape region in South Africa. Illness narratives were collected by means of an ethnographic approach focusing on both verbal and non-verbal exchanges. A variety of visual research methods were explored using different techniques and tools: analysing visual material; producing body maps; using respondent and researcher-generated and researcher-initiated photography; photo elicitation; internet memes and digital images; and transformational self-portraits. The results of this PhD study indicate that people living with HIV in South Africa experience three layers of marginality: firstly, through the physical impact the virus has on their body; secondly, through the stigma and discrimination they experience by living with the virus; and thirdly, the progressed form of social marginality they encounter through the influence that social, economic and political inequalities have on their lives and how this impedes their wellbeing. These layers of marginality were explored, firstly, by challenging notions that reinforce the visual misrepresentations of people living with HIV in South Africa; this entails producing visual material and verbal narratives that depict the way people living with HIV would like to be seen and heard in society today. This was also achieved by demonstrating how the dialogue between illness narratives and the visual material produced using visual research methods has the ability to transcend communication barriers, creating cultural nuances relevant to broadening the understanding of the lived experience of people with HIV and AIDS. The visual research methods which were used in this study consisted of body mapping, which was proven to be unique in the sense that it was the one method whereby the outcome (the body maps themselves) created a genuine sense of agency among the participants. Respondent-generated material was produced with the use of photography as a means to discover the visual illness narratives about the lived experience of people living with HIV in coloured communities. The photographs that were produced by the participants and the researcher depicted their daily lives, offering glimpses into the social circumstances in which they lived. The use of internet memes was analysed according to content, form and context, and provided a more layered meaning which was used in the interviewing process in the form of a ‘meme elicitation’. Lastly, the transformational self-portraits, a novel visual research method, revealed a simplicity that no other method could match and produced visual narratives that were easily understood by anyone yet containing rich meaning. This PhD study therefore not only illustrates the ability of playful and creative visual research methods to address serious issues such as HIV through its dialogue with illness narratives, but it allowed a group who have been acutely marginalised to feel included, heard and seen.

Jaar van publicatie:2021

Trefwoorden:Doctoral thesis

Toegankelijkheid:Closed