Reflections on women living with HIV/AIDS in contemporary Britain

Okoronkwo, Catherine Chinyere (2018) Reflections on women living with HIV/AIDS in contemporary Britain. Doctoral thesis (PhD), Manchester Metropolitan University.

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Abstract

Paula Treichler’s assertion that ‘the question is how to disrupt and renegotiate the powerful cultural narratives surrounding AIDS’ (p. 37) underpinned this research. Meaning and experience changes over time and because the novel is less about plot, and more about contributing to extant HIV literature and discourse, it was determined that the use of fiction to engage and develop contemporary cultural understandings of living with HIV was germane in that due to medical advances there has been a significant shift in the lived experience of HIV in the Global North. The decision to use creative writing as methodology was pertinent because this research provides portraits on lived HIV experiences that are multi-layered, complex and evolving, as women live more positively and into older age with HIV. In that this was not meant to be a phenomenological piece of research, that is, one that sought to discover knowledge which accurately and faithfully reflects processes and experiences of complex social phenomena, it was felt that creative writing as methodology provided an avenue in which to explore the importance of choice, meaning and responsibility in lived HIV experiences. This is because life contexts and histories vary from person to person, and the meanings we ascribe to such experiences are complex and diverse. Fiction not only has the ability to allow for the interplay between a person’s external and internal worlds, it also has the capacity to clarify and magnify emotionally charged experiences. In illustration, people living with HIV are often excluded from fictional narratives and therefore creative writing as a methodology offers a platform to explore sex and HIV diagnosis, and has the capacity to dignify the characters of the novel. Creative writing as methodology provided a means in which to explore existential themes - such as loss, meaning, identity. Thus, in seeking to honour the subjective experiences of the women interviewed for this project, and indeed, the characters of the novel, Purple Lilac, it was felt that the use of fiction was a valid methodology in this project. This thesis consisting of both a creative and critical component investigates the lived experiences of women living with HIV in contemporary Britain. The creative element, a novel, Purple Lilac, considers the lives of three female characters, two who happen to be HIV positive. Nkechi explores ordained ministry with the Church of England in the process of re-evaluating what it means to live with HIV in the context of her Christian identity. Maya, in journeying through grief and loss, reassesses her priorities as a woman living with HIV who has just lost her daughter. Anna, although not living with HIV, is bullied; and her experiences are narrated through the subtext of having a mother (Maya) who is private about her HIV status. All three characters in the novel explore themes echoed in the critical element of this project, Reflections on women living with HIV in contemporary Britain. A chronic condition, such as HIV/AIDS, can threaten a person’s sense of self and identity in relation to the spaces that person occupies. Therefore, a person living with HIV often experiences a shift in life priorities. Drawing on interviews of five women living with HIV in Birmingham, Coventry and London, this critical reflection engages with scholarship on HIV/AIDS and on illness narratives in order to examine the complex reality of living paradoxically with HIV. An analysis of the stories of those interviewed for this project reveals common themes of migration, stigma, silence, sex, intimacy, motherhood, religion and spirituality. Thematic connections have been made between the creative and critical work where the narratives offered by interview participants and characters in the novel give insight to different understandings of self and identity in light of living with HIV as a manageable chronic condition in the Global North.