Promoting Women’s Leadership

Strengthening womens rights and health NGOs and supporting women leaders who can mobilize in-country efforts in the interests of women and girls affected by HIV is critical. "...It is not enough for programmes and strategies to be designed on behalf of those living with AIDS; we have much to learn from their experiences, and how they struggle to negotiate being positive and maintaining sex lives and social linkages" (Gupta et al., 2011b: S379). "However, meaningful civil society participation has often eluded HIV/AIDS programs in Africa" (IOM, 2011: 93). And where NGOs are active, "HIV and AIDS NGOs are male dominated" (Bechange, 2010). Fostering social capital among and within these groups is also important. Just as the gay movement in the U.S. spurred activism and cohesion around HIV and AIDS early in the epidemic (Fauci in Goldman, 2008), women in the Global South need support for the NGOs that can provide this mobilization of support and attention (Wellings et al., 2006). However, social capital, through participation in groups, can have positive as well as negative outcomes (Szreter and Woolcock, 2004; Pearce and Smith, 2003). Smith and Rimal put it succinctly that "integration into a social system can serve to smother or inspire" (Smith and Rimal, 2009: 141). For women, integration in groups dominated by male leadership can serve to smother.

Positive Women Deserve Meaningful Involvement in the Response to HIV and AIDS

"While before I had been a victim and doomed, I started to become an actor in the fight against this terrible illness through my active participation in prevention campaigns." --Efficace, HIV-positive woman, Cameroon (Offe and van Roenne, 2007: 7)In most support groups and networks of people with HIV, women make up the vast majority of members of the networks yet the paid or elected positions are filled mostly by men (Manchester, 2004). Women living with HIV want substantial and meaningful involvement in policy and program design and implementation, rather than just to be included as honorary speakers or advisory members. As Fria Chika Islandar, a young Indonesian woman living with HIV put it at the International AIDS Conference Plenary in Toronto, Canada in August 2006, "I learned to demand my rights. I don't want to just be listed in a report. I want to be more involved" (Islander, 2006). Few organizations recognize HIV-positive women's organizations' right to involvement "and often assume either that an HIV-positive man can speak for all HIV-positive people, or that a few individual women on their own can be expected, as token women, to carry the burden of representing the views and perspectives of the vast number of women and girls across the region" (Paxton et al., 2004a: 18).

HIV and AIDS programs need more women involved in leadership positions -- particularly HIV-positive women and women with relevant skills. "There are many innovative responses by... HIV-positive women and girls worldwide. They show that quality of life does not end with an HIV diagnosis, but that given the right support, women and girls living with HIV can thrive and play a vital role in society, in families, and in prevention and support programmes" (ICW, 2004: 2). Despite significant challenges and limited resources, women and girls are responding positively to the epidemic--setting up support clubs, conducting peer education, providing care and support, looking after orphaned children, and engaging in advocacy and policy dialogue--and their contribution needs to be acknowledged and supported.

Women Need Support and Opportunities to Build Skills

However, programs also need to recognize that it is difficult for women living with HIV or AIDS to participate unless their basic needs are met. Positive women need to earn an income and, consequently, have little time or energy available to volunteer with PLHA organizations. Many are widows with children to support. Of the 764 HIV-positive people interviewed in the Asia Pacific Network of People Living with HIV/AIDS (APN+) documentation of AIDS-related discrimination, 50 percent of the women but only 8 percent of the men were widowed (Paxton et al., 2004b).

"...When we meet with someone who is positive, we chat. We give each other ideas" --HIV-positive woman, Malawi (Mkandawire-Valhmu and Stevens, 2010)In addition to support and strengthening social capital, women need opportunities to build skills for advocacy, networking, and participation in policy and program design and implementation. Important interventions include establishing mechanisms for meaningful participation of women in policymaking at international, national, community, and organizational levels; building women's policy advocacy and analysis skills; and ensuring that women are aware of their rights. Positive women also need separate networks to ensure that they have a voice. "Experience to date shows that the active involvement of positive women at all levels of decision-making, including the making and shaping of policy, is essential to treatment preparedness and expanded access as well as ensuring respect for positive women's sexual and reproductive health and rights. Yet, HIV-positive women and decision-making bodies continue to lack practical skills and political commitment to promoting meaningful involvement of positive women in shaping policies and programs" (Mthembu et al., 2006).

[See also Prevention for Key Affected Populations for leadership initiatives among sex workers and other marginalized groups]