Abstract
Talk and ‘telling’ have assumed prominent roles in preventing HIV and promoting life with the disease at the start of the twenty-first century. Our concern in this paper is to show how social structures and circumstances shape the narrative productions of HIV positive patients whose lives are institutionally managed. We consider what ‘telling’ means when young women with few economic resources are encouraged or mandated to talk about themselves by case managers, researchers, therapists, welfare workers, and clinic staff. We organize our analysis around three such ‘autobiographical occasions’: disclosures to intimate partners prompted by agents of the state; employment opportunities in which women are hired to tell others about living with HIV as peer educators or outreach health workers; and research interviews. We argue that storylines about living with HIV have been laid down by powerful social actors whose illness experiences do not reflect those of many poor patients. These formulations constitute an ‘archive’ which organizes institutional practices and discourses. These matter not only because they provide patients with a language through which to render their actions meaningful, but because they shape the everyday experience of HIV outside the clinic, the welfare office, and the therapy session.
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Notes
The research protocol was reviewed and approved by the Institutional Review Board (IRB) at each of the clinic sites (the University of Miami, Montifiore Medical Center, Cook County Hospital, and Tulane Medical Center) as well as by the IRB at the Johns Hopkins School of Medicine.
Most states, approximately 27, have HIV-specific laws that make it a crime to have sex without disclosing one’s HIV status to one’s partner (see The Body, an on-line source for HIV/AIDS information at: http://www.thebody.com). However these laws differ, sometimes markedly, in terms of what is required in order to prosecute. Even in states without HIV-specific laws, some criminal laws can be applied to cases in which sexual behavior poses some risk of HIV transmission (Lazzarini et al. 2005).
An exception is Crimp (2003), although this account is again based on the experience of a gay man.
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Acknowledgements
This research was supported by the National Institutes of Drug Abuse (NIDA) through grant number R01 DA14706, and by the Adolescent Trials Network (ATN). We would like to thank the following people for facilitating our interviews with the young women at the clinic sites: Elizabeth Enriquez-Bruce, Melinda Marquez, Donna Maturo, Melissa Moo-Young, Trina Jeanjacques, and Hannah Wilson-Major. The paper was improved by very generous and very helpful critiques from the editor and from four anonymous reviewers, as well as from Larry Brown, Veena Das, Joshua Garoon, Aaron Goodfellow, Siba Grovogui, Heather Huszti, Todd Meyers, Lindsey Reynolds, and Emma Tsui. Finally, we are deeply indebted to ‘Crystal,’ to ‘Howie,’ and to all of the young women who participated in this study for everything they have taught us.
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Leonard, L., Ellen, J.M. “The Story of My Life”: AIDS and ‘Autobiographical Occasions’. Qual Sociol 31, 37–56 (2008). https://doi.org/10.1007/s11133-007-9086-5
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DOI: https://doi.org/10.1007/s11133-007-9086-5