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Stigma and Discrimination Faced by Women Living with HIV/AIDS

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Publication Date

January 1, 2006

In February 2007, the international human rights organisation Breakthrough launched a multi-media educational campaign in India called "Is this Justice?" in an effort to draw the Indian public's attention to the growing incidence of stigma and discrimination faced by women living with HIV/AIDS (WLHA), most of whom have been infected by their husbands or male partners. This 157-page formative research report on gender discrimination and its effect on WLHA emerged from this process of developing materials for the campaign. The materials and research document were developed with input from the Networks of Positive Women in Karnataka, Maharashtra, and Uttar Pradesh.

From the Executive Summary: "Gender plays a key role in the nexus between HIV-related stigma, moral judgement, shame, and blame. Given women's lower standing in the social hierarchy, this study has developed some basic hypotheses in a bid to understand the dynamics of gender in HIV-related stigma and discrimination. The hypotheses emerge from the central theme that 'women are more likely to be stigmatised in India where women's powerlessness is glorified in a pativrata (dedication to the husband) image'. Key among these hypotheses are: the family plays the biggest role in women's discrimination, a woman's economic status determines her access to support from the family, women are blamed for their spouses’ infection, HIV-positive women are stigmatised as being loose characters. Ultimately, lack of family support, ridicule and stigmatising behaviour of the community, denial to financial independence and a means of livelihood are factors that give rise to internal stigma. Internal or self-stigma is also exacerbated by the Indian belief in 'karma' and destiny."

The research sought to understand attitudes and behaviour of individuals, families, and community towards the WLHA; investigate whether gender differences exist in discrimination and stigmatisation against people living with HIV/AIDS (PLHA); and map stigma indicators through the lens of women's rights. The research used the following methods: transect walks (a technique from participatory assessment methods used to observe conditions, people, problems, and opportunities along a line planned on a village map), in-depth interviewing, and focus groups. PLHA, particularly WHLA, were contacted through networks of HIV-positive people. Families that were not supportive could not be accessed, but willing family members and community members were interviewed.

The research states that: "An underlying blame which can be discerned is the belief that women as sex workers are to be blamed for the spread of infection to men. There is a definite school of thought in the community that men going to prostitutes are not abnormal, but it is the existence of these kinds of women and increase in their numbers which is really responsible for the spread of the disease. The source of the disease is being attributed to women."

The research found that awareness of HIV/AIDS comes from mass media messages. However, it states that awareness levels vary by socioeconomic class (SEC). Higher and middle SECs were found to be aware of the symptoms, possible routines to becoming infected, and characteristic stages of HIV/AIDS. In case of the lower SECs, unsafe sex emerged as the cause most associated with the disease. This group viewed itself as most prone to the disease and felt the need for detailed information on prevention and available treatment.

Communication-related information that resulted from the research came from inquiring in the community about what HIV/AIDS messages they would like to hear. Suggestions included using spiritual leaders to spread messages that "AIDS is not dirty" to reduce the perception that it is a disease of the immoral. It was suggested that stigma could be reduced through interviews with HIV-positive people who could describe their lives as normal. Middle range SECs suggested messages stating that AIDS is not communicable "like other diseases" and that PLHA need family support and care. The research states that some SECs are not influenced by celebrity messages, but that they need constant messaging on television by spiritual leaders, at health centres, small meetings, and through clubs. Community members recommended information about symptoms and messages, particularly focused on elder family members, against shunning and isolating PLHA.

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Breakthrough Campaign website accessed on February 11 2008 and August 5 2009.

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