Faidha Gani? What's the Point: HIV and the Logics of (Non)-Disclosure among Young Activists in Zanzibar

"Although there is arguably much to be gained by disclosing [HIV status], there is also much at stake, including issues of individual and family honour and the possibility of living a 'normal' life."

Starting with the question, Faidha gani? or 'What's the point?' this paper attempts to shed light on motives for disclosure and non-disclosure. The arguments draw from a qualitative study among young HIV-positive adults in eastern Africa and, most specifically, an in-depth case study of one couple in Zanzibar. [Footnotes removed throughout by the editor.]

As stated by the author: "To date, most research on HIV disclosure is framed by the assumption that disclosure is good and focuses on investigating ways to overcome barriers to disclosure to fight stigma.... This paper asks a different question: namely, how do individuals living with HIV use the process and event of disclosure to navigate the social worlds they inhabit? Most specifically, I am interested in understanding how disclosure and non-disclosure figure into individual and family efforts to regain a so-called 'normal life', with access to education, employment and family life, including marriage and having children, as well as efforts to recuperate individual and family reputations of respectability. I argue that returning to normal life requires people to abandon the sick role and conform to social expectations regarding silence (non-disclosure) around HIV.”

The author looks at culturally specific logistics related to disclosure. "show[ing] that …new subjectivities remain forever entangled in existing social norms, consequently also leading to new socialities embedded in family, community and work relationships." Through participatory research involving people living with HIV and organisations supporting them, the author joined with an HIV-positive semi-activist couple for this case study collected over three years beginning in 2007. Following three weeks of training in qualitative interviewing techniques, the couple recruited 20 young HIV-positive and sero-discordant couples, as well as the participants for five focus groups, consisting of health workers and young people from the general population. The author periodically attended interviews and focus group discussions for quality control and to provide feedback to the interviewers and came to know the couple well, such that they became interviewees in a more specific study of the nuances of disclosure, family life, pregnancy, employment, and activism .

The study describes norms in Zanzibar that are likely to affect people's considerations of living positively, disclosing, and seeking support. First, people in Zanaibar, as stated here, have access to "a wide range of services, including detailed information about HIV treatment, medicines for opportunistic infections and training in providing home-based care, peer-counselling and even English and computer skills." There are also income-generating activities, like soap making and sewing. From an outsider's perspective it is hard to imagine a better model for a support group. The author also speculates that the tradition of sexual practice and marital relations education of men by their grandmothers and "socio-cultural norms, together with socialisation processes that emphasise the importance of being ustaraabu, or civilised, and treating one another with heshima, or respect, no doubt help produce an environment in Zanzibar where people with HIV are treated humanely." However, the fear of bringing dishonour to oneself or to one's family is the main factor underlying self-stigma and shame associated with disclosure. One interviewee acknowledged that disclosing helped him to let go of self-stigma, but also that eventually he began to ask what the point of disclosing was when there was nothing to gain (faidha gani?) - possibly related to his desires and partial failures to live up to social conventions related to respect and honour. The author cites instances in which interviewees lose jobs through disclosing their status and are ostracised by family and partners - ways that disclosure can threaten the cornerstones of a normal life, including marriage, family relations, work, and childbearing. However, some activists wished for their stories to be used in research and as examples to give support to others whose status is positive with the aim of making the lives of young people living with HIV easier and more fulfilling, more normal.

A part of motivation to activism, as demonstrated here, may be the desire to see HIV-positive mothers have an HIV-negative child. "To improve the likelihood of giving birth to an HIV-negative child, an HIV-positive woman must know her status though testing, should have access to antiretroviral treatment, and give birth through caesarean section and not breastfeed." The complexity, cost, and risk of caesarian birth and bottle-feeding an infant have caused a change in the World Health Organization (WHO) guidelines, so that they now do not recommend these practices in low-income settings. Often, positive couples are not informed of the advisability of these practices.

In the case of the interviewees in this study, the act of disclosure and condition of pregnancy brought stigmatisation from family and medical staff, who categorised the postiive woman as "sick", thus not fit to bear a child. Her stigmatisaton further galvanised her position on the "rights" of positive people and her role of champion for them. "Giving birth to a healthy child is an index of parental health and also social normalcy....To achieve this activist goal, they work to convince people in the wider community that HIV is no longer an immediate death sentence and that people living with HIV can lead lives like everyone else, and also to convince healthcare workers to provide people living with HIV with the information and services required to have HIV-negative children."

The research suggests that treatment availability encouraged positive people to disclose to partners and family, if at all, but to remain silent in public because, due to antiretroviral therapy (ART) availability, they could lead "normal" lives, living without stigma. "Despite these positive developments, young HIV-positive people interviewed in related research reported consistent stigma from healthcare providers, particularly toward youth and women wanting to have children, which resulted in them routinely lying to healthcare providers." Further, disclosure to families might lead to acceptance and/or reluctance to invest in educating positive children or to provide resources for a business start-up or a marriage and family.

Further, the author suggests that honour and respect, key tenets of much of African culture, are bound up in the reasons for the complexity of the HIV/AIDS epidemic. Respect may be a reason that women cannot ask partners to use a condom, or that they cannot disclose to future or present partners. For some, disclosure is associated with disrespect, but having a healthy child as an indicator of social "normalcy" can restore honour. It also "challenges deeply entrenched societal notions that 'AIDS = Death'....  Whereas, increasingly, we witness HIV in Africa being reconfigured as a chronic disease with which one can live, this falls short of what is needed for people living with HIV to return to normalcy. What is needed is a framing of living with HIV as a lifelong balancing act, which allows people living with HIV to construct life narratives marked by hope and planning."