The stories we tell: Qualitative research interviews, talking technologies and the ‘normalisation’ of life with HIV

Abstract

Since the earliest days of the HIV/AIDS epidemic, talking about the virus has been a key way affected communities have challenged the fear and discrimination directed against them and pressed for urgent medical and political attention. Today, HIV/AIDS is one of the most prolifically and intimately documented of all health conditions, with entrenched infrastructures, practices and technologies--what Vinh-Kim Nguyen has dubbed 'confessional technologies'--aimed at encouraging those affected to share their experiences. Among these technologies, we argue, is the semi-structured interview: the principal methodology used in qualitative social science research focused on patient experiences. Taking the performative nature of the research interview as a talking technology seriously has epistemological implications not merely for how we interpret interview data, but also for how we understand the role of research interviews in the enactment of 'life with HIV'. This paper focuses on one crucial aspect of this enactment: the contemporary 'normalisation' of HIV as 'just another' chronic condition--a process taking place at the level of individual subjectivities, social identities, clinical practices and global health policy, and of which social science research is a vital part. Through an analysis of 76 interviews conducted in London (2009-10), we examine tensions in the experiential narratives of individuals living with HIV in which life with the virus is framed as 'normal', yet where this 'normality' is beset with contradictions and ambiguities. Rather than viewing these as a reflection of resistances to or failures of the enactment of HIV as 'normal', we argue that, insofar as these contradictions are generated by the research interview as a distinct 'talking technology', they emerge as crucial to the normative (re)production of what counts as 'living with HIV' (in the UK) and are an inherent part of the broader performative 'normalisation' of the virus.

“Not Taking it Will Just be Like a Sin”: Young People Living with HIV and the Stigmatization of Less-Than-Perfect Adherence to Antiretroviral Therapy

“…Far from wishing to engage with a "confessional imperative" that sees talk as automatically generating inherent benefits (Nguyen 2013;Mazanderani and Paparini 2015), our findings underscore rather that non-talk also has challenges and ramifications. Despite the absence of discussion in many of our participants' experiences of growing up with HIV, they could and did talk about these at length in interviews.…”

Problematising the Discourse of ‘Post-AIDS’

“…The estimated overall HIV prevalence rate in South Africa is approximately 11.2% (SSA July Despite the now well-rehearsed impact of ART in South Africa, two immediate questions arise from this and other data. The first is the extent of ART coverage and uptake in South Africa (and other sub-Saharan Africa countries), and the second is adherence to medication and the ongoing challenges these pose -both of which point to some of the well-established, but ongoing, limitations of the biomedical approach -limitations and challenges which apply in different social contexts -the richest as well as middle and low income countries (Squire 2010;Mazanderani and Paparini 2015).…”

“…Despite the drive to normalise HIV and to transform it into a disease 'like any other' (Moyer and Hardon 2014, 263;Mazanderani and Paparini 2015, 66;Murphy et al 2015), people continue to live in what might now be termed a liminal illness space wherein normalcy and exceptionality are uncomfortable, yet ever present, bedfellowsit is, thus, simultaneously normal and exceptional (Mazanderani and Paparini 2015), which makes for a tension filled experience for people diagnosed, as they are expected to embody and perform the 'normal (chronic illness)' whilst, perhaps, often experiencing their own condition as entirely exceptional. As such, a further pressure is also brought to bear, as those people who fail to achieve normalcy in either their understanding or performance of HIV risk a new and unanticipated form of stigma which is grounded in the increasingly demanding biomedical prerogative and expectation that someone with HIV will respond 'appropriately' to treatment both psychologically and physically.…”

“…For, if a condition is 'normal, 'everyday' and 'unexceptional', then the need for 'exceptional' support is no longer present. There is, thus, a clear political imperative at work here in both the Global North and South where it manifests differently, which allows for, with disastrous consequences, a potential withdrawing of social, political and, perhaps most importantly, financial assistance and support (Squire 2010;Mazanderani and Paparini 2015). Perhaps the impact of the drive to 'becoming ordinary' and to 'normalcy' is that 'the discursive normalisation of HIV as a disease like any other' (Mazanderani and Paparini 2015, 66) may ironically constitute a further mechanism to generate silence, fear and a continuation of old, and generation of quite new, forms of HIV related stigma.…”

“…It is an illness journey that is complex, socially and culturally formed, characterised by the existence of many co-morbidities, and continues to remain more than 'just a virus'. The danger of the language and practice of 'post-AIDS' and the rhetoric of 'zero discrimination' is that the voice of complexity is not heard; the voice of longterm chronicity may be silenced, and those who may be unable to articulate their account of HIV and AIDS because of social and health inequalities run the risk of being ignored in the era of 'post-AIDS' (Mazanderani and Paparini 2015). The extraordinary efficacy of ART has both made possible, and ironically eclipsed, everyday life with HIV and AIDS; yet, we need to be cautious of taking for granted, or embracing, a new era, underpinned by an uncomplicated and uncritical language of normalisation which may ironically undermine the very efficacy which facilitated the discourse of 'post-AIDS' in the first place.…”