Wednesday, December 16, 2015

Brief comment: Disclosure and silence among HIV activists in Zanzibar

by Gideon Lasco, MD, MSc

"The desire to live a normal life demands silences in particular social contexts"  - "Faidha gani? What’s the point: HIV and the logics of (non)-disclosure among young activists in Zanzibar by Eileen Moyer

In the advent of antiretroviral therapies in Zanzibar, what are the challenges that are faced by young activists with HIV as they 'live positively'? In this article, Eileen Moyer identifies disclosure and non-disclosure as an important issue for these individuals. Responding to the notion that non-disclosure is a response to stigma, she draws on the life of a couple - Miki and Zainab – to make the point that more is at stake in the ‘silence’ of people living with HIV. This is in spite of the global assumption that disclosure is good and disclosure is a way to flight stigma (p. 68) that the activists themselves ‘subscribe’ to – but Moyer recasts this subscription as more of acquiescence (p. 70).

Moyer points out that "the desire to live a normal life" is a key struggle for people living with HIV, and spends a good part of the article illustrating what a ‘normal life’ means. Components of a normal life she identifies include “marriage, family relations, work and child bearing” (p. 73). Disclosure disrupts these components in many ways. For instance, she cites an informant who says that “informing a loved one of one’s HIV status still brings pain” and she narrates issues of trust and mistrust in Miki and Zainab’s marriage that has to do with their respective (non)-disclosures.

In a sense, there is ‘performativity’ in having HIV/AIDS: disclosure has a (disruptive) social impact even if people already have previous assumptions of what an individual’s HIV status is. Thus, the global discourses on the importance of disclosure notwithstanding, it is understandable that for people living with HIV, there is no point  - Faidha gani  - in disclosure, when what is demanded of them is silence.

What I find interesting in this article is that there is so much at stake in individuals’ notion of what constitutes a ‘normal’ or acceptable life. When Alex Edmonds speaks of a ‘necessary’ vanity in Brazil, he is also drawing on norms of beauty – a ‘particular standard of living’ that makes plastic surgery socially acceptable in Brazil. But with HIV and plastic surgery being both recent phenomena, how do we the chart the genesis – and the evolution – of these ‘normatives’? How does ‘normal’ change? This I believe is an important and enduring question for medical anthropologists as we reconfigure our lenses to deal with both illness and wellness; both suffering and ‘desire’ and as we confront new medical technologies and challenges.

REFERENCES

Edmonds, Alexander. (2011). A ‘Necessary Vanity’. New York Times, August 13, 2011 Available: http://opinionator.blogs.nytimes.com/2011/08/13/a-necessary-vanity/?_r=0 Accessed 6 Nov 2013

Moyer, E. (2012). Faidha gani? What's the point: HIV and the logics of (non)-disclosure among young activists in Zanzibar. Culture, health & sexuality, 14(sup1), S67-S79.

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