Hope, involvement and vision: reflections on positive women's activism around HIV

Introduction

AIDS has been equated with stigma and discrimination since the first cases were identified in the late 1970s. Watney (1994) recorded the traumatic impact that HIV had on gay communities in the US and the feelings of desperation and anger at the lack of concern and support from government. Altman (1994) recalled that governments at that time were reluctant to work in partnership with 'deviants' fearing that their action would be unpopular and misinterpreted as condoning immoral behaviour. An ethos of self-help grew out of the isolation, despair and anger. People with HIV experienced a common sense of oppression and began to speak out to challenge discrimination and force their governments to show leadership. The history of AIDS activism in the US and United Kingdom is well documented (Shilts 1987; Patten 1988; Kramer 1990; Act-UP 1990; O'Sullivan and Thomson 1992; Patten 1994; Watney 1994; Garfield 1994). However, there are very few similar works that examine the early days of community activism in other parts of the world, particularly sub-Saharan Africa.

HIV in Africa was blamed on prostitution and promiscuity. HIV positive people were seen as sexual deviants and social transgressors. The fact that HIV only seemed to affect marginalised and unpopular groups caused disinterest and complacency among governments and the general public worldwide. The response of most governments took the form of mass prevention campaigns which caused panic and often increased hostility towards positive people, or those suspected of being infected. Such campaigns did nothing to change behaviour or address the social impact of AIDS. The first community-based AIDS organisation in Africa was TASO, The AIDS Service Organisation, established in 1987 in Uganda by Noreen Kaleeba whose husband had died of AIDS. TASO provided support, care and counselling and adopted the slogan 'Living Positively and Dying with Dignity' to promote tolerance and respect (Kaleeba 1995).

By the early 1990s a small number of self-help organisations, run for and by people with HIV had emerged in Africa. Body Positive in South Africa was set up in the 1980s to support gay white men. In Kenya TAPWAK The Association of People with HIV in Kenya, was led by men but was officially mixed and the members were overwhelmingly women. In Zimbabwe the Centre for people living with HIV/AIDS had been established to provide nutritional advice and counselling to women and men living with HIV. In 1992 a new type of activism emerged in Uganda, Zimbabwe, Kenya and Malawi - for the first time in the world, it was led and dominated by HIV positive women. An international meeting of positive women provided the impetus for this activism when 59 positive women from 27 countries came together for one week before the World AIDS conference in Amsterdam. I was fortunate to be among the group. As we shared our stories and experiences we grew angry. Why did so many of us have to go through the same feelings of fear, isolation, shame and despair? Many of us spoke out for the first time at that international conference and returned home determined to stand up and make a difference. We created a network, the International Community of Women living with HIV/AIDS (ICW) to support one another and to reach other positive women. We agreed upon 12 statements to express what was needed to improve the lives of women living with HIV and we used these statements as the basis for our advocacy and negotiations with governments, health professionals, media, researchers and conference organisers (see www.icw.org).

Association with ICW gave positive women the confidence and credibility to voice their concerns. They were no longer speaking just as individuals but as part of a recognised network. ICW's real strength was in its members, the women who were speaking out in their countries. Given all the forms of discrimination and exclusion and the vast consequences of poverty that conspire to silence women, these women were exceptional because despite their circumstances they spoke out about taboo subjects of sex, power and death. They fundamentally changed the way their governments...