The Centre for Narrative Research in the Social Sciences

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Abstracts - Dr C. Squire

Paper given at the Crossroads Cultural Studies Conference, Tampere, Finland, Jul 2002

Personal experience as cultural genre: the case of HIV

Corinne Squire, Centre for Narrative Research, University of East London

Clinical psychological work on people's stories of living with HIV have pointed to a common narrative progress from diagnosis through resistance and despair to acceptance. This narrative sequence resembles many other personal narratives of coming to terms with death, illness and stigmatised conditions, and narratives of self-realisation in general. However, stories are told within cultural matrices of narrative possibility. Drawing on studies done in the UK, South Africa and Zimbabwe, this paper examines the cultural situating of stories about the 'self' and HIV, and the genres which these stories both draw on and reinvent, from the coming-out genre, through romance, to religious 'conversion' narratives and the 'Socratic' dialogue genre. The paper also examines aspects of subjectivity that are at risk of falling out of narrative, remaining unstoried, and the place which different genres may allow them.

Paper given at the International AIDS Conference, Barcelona, July 2002

'Let's talk about the Big Thing': South African narratives of HIV support
Corinne Squire and Lumka Daniel
School of Social Sciences
University of East London
Longbridge Road, Dagenham, Essex RM8 2AS UK

Issues: About 1 in 9 South Africans now live with HIV. With relatively highly developed infrastructure, health and social services, the country is an important model for African HIV strategies. After initial silence and stigma about the condition, awareness and service development are increasing, and will expand following the government's recent decision to roll out some treatments. However, HIV support services remain limited, and open communication about HIV problematic.

Description: In 2001 36 semi-structured interviews about HIV support experiences, expectations and requirements were conducted with people infected or affected (1/12) by HIV, 4/5 of them women, recruited through AIDS service organisations, clinics and chain referral. In May 2002 followup telephone interviews were conducted with a subsample. Interviews were content and narrative analysed to ascertain types of support used, wanted and valued, and narrative forms deployed.

Lessons learned: Interviewees valued non-time-limited, though intermittent, support from HIV positive peers. They also valued peri-diagnostic support from counsellors, material support (skills-building, HIV-sensitive employment), and support from family over friends. They exhibited good knowledge of medical support and sophisticated strategies for maximising treatment opportunities. Interviewees used culturally powerful story forms that drew on popular media, religion, traditional medicine and political struggle.

Recommendations: HIV positive, negative and unknown-status South Africans could benefit from extensive development of diverse, open and ongoing 'interpretive communities of support' (Plummer, 1995) (including virtual, media 'communities'), that allow HIV storytelling, promote disclosing and non-disclosing acceptance, and encourage testing, risk reduction and treatment adherence. Providing more medical treatment, and training and income generation schemes, would also promote these goals.

 

Squire, C. (2000) Can HIV Positive women find true love? The Bridget Jones genre in the stories of seropositive women. Paper presented in the ‘Gender, Social Psychology and Popular Culture’ symposium, International Congress of Psychology, Stockholm, July.

This paper explores how HIV positive women living in Britain, produced, when talking about heterosexual relationships, forms of ‘Bridget Jones’ narrative. This genre is perhaps the dominant women’s story in contemporary popular culture. In it, ironised romance is married to a narrative of personal development with feminist inflections. HIV challenges the conditions of possibility of this narrative because illness and potential death are part of the story from the start. Moreover, many women living with HIV are from quite different backgrounds and dealing with different problems than those of the white middle class women in the Bridget Jones stories. The paper argues that the genre can be useful for women who are not ‘in’ the narrative but who give it new meanings.

Squire, C. (1999) ‘Neighbors who might become friends’: Selves, genres and citizenship in narratives of HIV. The Sociological Quarterly 40: 109-37

HIV is a condition that seems powerfully to define identities and communities. In some cases it appears to have generated new, culturally and politically radical forms of both. Drawing on a series of interviews over two to three years with people infected or affected by HIV, this article examines how interviewees describe their communities and identities as determined by HIV, though in partial, limited ways. The article explores how the "self" operates in the interviews, not as a consistent, reflexive project but as an occasional, situated resistance. I argue that the narrative form of the interviews was what enabled provisional, variable identities and communities to be articulated. The "coming out" genre was widely deployed to describe negotiating HIV stigma and fatality, as well as accepting and to some extent disengaging from serostatus. This genre's allowance of incompleteness also gave a place to HIV's abjection, to horrors that cannot be storied into subjective meaningfulness. Finally, the article looks at how, rather than focusing on identities or communities, interviewees told stories of citizenship, of subject positions shaped by neighborhood, national and transnational, as much as individual or group concerns.

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© 2002