Positive women's workshops in Swaziland and Lesotho

Monitoring the political commitment of governments in response to the needs of women living with HIV. ICW, in collaboration with the Action Aid-managed initiative SIPAA (Support for the International Partnership against AIDS in Africa) held two week-long workshops in Swaziland (30th January - 4th February) and Lesotho (6th - 11th February) to monitor the political commitments to combating HIV and AIDS in the two countries and to measure the gender implications, specifically the implications for HIV positive women, of the governments' response. Click on 'read more' to view more about the workshops and ongoing project.

TThe workshops aimed to develop a monitoring tool that can be used by women living with HIV and AIDS to hold governments and service providers to account and to strengthen advocacy messages. The workshops focused specifically on the commitments undertaken through accession to the UNGASS and Abuja Declarations of commitment, and the GIPA principle, with regard to policy, programmes and practice relating to the three areas of sexual and reproductive rights, gendered aspects of access to care, treatment and support, and violence against women.

The workshops involved the participation of 20 – 25 women living with HIV from each country. We began with a broad look at the issues facing positive women. In Swaziland, these ranged from stigma and discrimination, blame within the household and community, and issues of confidentiality within the health care setting, to violence from partners, victimisation from in-laws, property grabbing and lack of control over areas such as reproductive and sexual decision-making, attendance of support groups, health care and household finances. In Lesotho, stigma and discrimination was also a major feature of the life of women living with HIV and AIDS, as were lack of access to information on treatment, human rights and reproductive choices, violence and disempowerment, loss of dignity and self esteem, the lack of a platform from which to speak out, and competition, rivalry and discord between positive people's associations. The inaccessibility of certain areas of the country was a particular disadvantage to communities in hard-to-reach places, especially as regards the passage of information and awareness, and access to health care services.

In both countries the impact of HIV and AIDS was compounded by illiteracy and a lack of education, and ironically, due to the general paucity of information available, people living with HIV are often made to feel illiterate and under-informed in a very real way in terms of awareness of their own condition. In both countries too, the social status of women as minors leaves them vulnerable to abuse from husbands, fathers and other family members, health care workers and other authority figures, and lacking in decision making power over factors affecting their life. Furthermore cultural practices and the traditional roles of women continue in both countries to increase women's vulnerability to infection and to the impacts of HIV and AIDS on a family and community level.

The focus was then narrowed to look at the particular women face with regard to sexual and reproductive rights, access to care, treatment and support, and violence against women. Common themes in these areas included the lack of sexual decision making and high incidences of sexual violence in both countries; a focus on prevention rather than positive mothers' well-being in PMTCT programmes; judgemental attitudes of health care workers; centralised services making access to and quality of care in rural areas very limited.

A contextual analysis began with a broad overview of the global pandemic, before narrowing down to examine regional and national aspects of HIV and AIDS, with a focus on the impact on women in particular. This set the scene for introducing the three declarations of commitment: the GIPA principle, the Abuja declaration and the UNGASS Declaration of Commitment. Of these, only GIPA was a familiar term to the majority of the participants, and an exercise was carried out to look at what kind of activities women were involved in and to plot these on a continuum from no involvement to meaningful involvement in decisions that affect our lives, and where we would like to see ourselves in terms of an ideal level of invovlement. A common feature in positive women's involvement in both countries was that the main area of involvement was in care, support and counselling of other HIV positive women and men. While this was felt to be meaningful and important work, it was also work that was very much restricted to the local community level and contained within the positive community. It was largely voluntary and invisible to the broader society, received very little external support or recognition, and took up a lot of time. There was need for this kind of work because of the lack of facilities and resources provided by the government to health care settings where some of this could alternatively be carried out. Furthermore, it was very time consuming and left women with little time or resources for work on a national or international level. In terms of decision making in the design, implementation, or monitoring of policies and programmes that target people infected or affected by HIV and AIDS, the involvement of HIV positive people, and particularly women in both countries was negligible. In both countries, women expressed a desire to be involved in this level of decision making in an ideal sitaution.

Another type of involvement was the appearance of HIV positive people to give speeches or personal testimonies. Women from both groups were sometimes called upon to give personal testimonies, invariably at very short notice, so that they had no time to prepare for the event, or gather the views of other women and men living with HIV such that they could truly act as their representatives. In testimony-giving, women were rarely given an opportunity to present their concerns.

We then looked at the Abuja and UNGASS declarations of commitment, both of which documents were unfamiliar to most of the participants. Participants were encouraged to engage directly with the documents to find out which areas they covered and whether the commitments specifically addressed the concerns of HIV positive women.

On the second afternoon of the workshop, government representatives were invited to come and give their views to the participants as members of a panel discussion. They were given plenty of notice and guidelines for the presentation. In Swaziland, representatives from the Ministries of Gender and the National AIDS Programme were present, as well as panellists from WILSA (Women in Law in Southern Africa), NERCHA (the National Emergency Response Counsel on HIV and AIDS) and CANGO (Coordinating Assembly of Non-Governmental Organisations). This was the first ever forum to give HIV positive women in Swaziland an opportunity to question government officials. In Lesotho, despite the notice given in advance of the event, no government representatives were available to attend. Instead, the panel discussion focused on civil society influence, involvement and strengthening, with representatives of UNAIDS, SIPAA, CARE International, and Positive Action support group. In both workshops, the participants demanded to know what was being done for them, especially in terms of representation of women and gender equitable access to resources, especially in rural areas. However, more was gained form the discussion in Swaziland, where the participants were able to ask direct questions to the relevant representatives regarding some of the commitments that they had learnt about that morning. Afterwards the participants expressed they felt empowered to hear about and question officials on declarations that they previously knew nothing about.

Continuing to work on the political commitments, we then examined each of the declarations and agreements in turn through a gender lens, and place them on a gender continuum that stretched from gender stereotypes, through gender neutral, gender sensitive, empowering and finally to transformative. It was found that the GIPA principle is gender neutral, while the Abuja agreement was largely gender neutral but sensitive in places (approximately 5 out of 40 areas), and the UNGASS declaration, despite frequent use of the word "empowerment" actually fell somewhere between gender neutral and gender sensitive. The words weren't always backed up by even proposed actions. The strengths and weaknesses of each of the documents were also examined. We then took the analysis a step further by looking at our own experiences and identifying the reality gaps between that which had been promised and that which was being experienced, and what needed to be done in order to close those gaps. Many of the issues highlighted in this session related to experiences of discrimination in workplaces and health care settings; lack or poor quality of care and support; verbal violence, blame and rejection by partners and family members; physical violence, sexual abuse and rape; exploitation by researchers; and breaches of confidentiality.

The rest of the workshop focused on developing a monitoring tool that could be used by and for positive women to measure the impacts of the three political instruments we had looked at in relation to the areas of Sexual and reproductive rights, violence against women and gender equitable access to care, treatment and support. We began by exploring the concept of monitoring and the need to set indicators; how these could be qualitative and quantitative, gender neutral or gender sensitive, aggregated or disaggregated, and so on. We also did a gender analysis of the UNGASS core indicators, and found that where the declaration as a whole is gender sensitive, the indicators used to monitor the implementation fail to probe the impacts of the declaration for resulting improvements in the lives of HIV positive women. In some areas, the indicators actually reinforce ideas about male control; on the theme of prevention of mother to child transmission, the mother's health is completely neglected while the sole focus is on the production of healthy babies; and several of the indicators fail to acknowledge the difference between knowledge and experience, ability or practice. Due to the fact that the indicators are exclusively quantitative, there is little or no exploration of issues surrounding individuals' failure to meet the objectives to which the indicators relate, or measurement by degree or quality of their achievement.

The participants in both countries then set about developing a three-stage tool to measure implementation at the level of on-the-ground experience of women living with HIV and AIDS, service provision and government commitment. Questions for each of the three areas (the gendered aspects of access to care, treatment and support; sexual and reproductive rights, and violence against women) were designed to be asked at each of the three levels. First, the questions would be put to women living with HIV and AIDS, because they have experienced reality of living with HIV; recognising that these experiences and realities differ, to capture the broad range of issues and concerns of positive women; and in order to influence the development of effective policies and programmes that will meet the needs of women living with HIV and AIDS.

The second stage would be to ask questions of service providers, in order to assess their knowledge of HIV and AIDS and their ability to practice what they know; to link what positive women know with what the service providers know and make sure they are compatible; to see what services are available, assess their adequacy and what barriers service providers face in supplying services; and to find out whether women’s experiences are reflected in what the service providers say.

The final step is to ask questions of the government to thoroughly examine policy, and implementation of policies and programmes to see if they're reaching people on the ground, in the light of the needs and issues expressed in the first two stages; and to highlight areas of inadequacy or lack of robustness in the policies and programmes, their implementation frameworks or their monitoring / reporting tools.

The questions were then discussed and additions were made where necessary. A task team was then set up in each country and in the International Support Office to combine the two sets of questions from Swaziland and Lesotho into one, which will then be produced and distributed throughout Swaziland, Lesotho, Tanzania and Nigeria. It was also agreed that accompanying guidelines would be necessary to enable effective use of the tool.

The workshop closed with individual and group commitments being made by all of the participants to carry the work of the week forward, and to not allow it to stop there. Participants talked about sharing the information they had learnt with other women in their communities and support groups, especially information on women's rights; working to strengthen ICW at national and district levels; encouraging people to test; setting up a women's wing within their organisation; and to use the tools they had learnt about to advocate for their rights. ICW staff attendants, Gcebile Ndlovu, Emma Bell and Luisa Orza also committed themselves to ensuring that that achievements of the two workshops would be taken out beyond the workshop room walls, and that participants would receive support from ICW, but they emphasised that the participants themselves had a responsibility to advance the work. In both countries, follow-up meetings, to which all participants will be invited, were arranged to be held in March. Follow up meetings will be attended by ICW Southern Africa Regional Coordinator, Gcebile Ndlovu.

Comments from participants:

"I learned that if women living with HIV/AIDS can leave conflicts behind, they can do very big things" (participant, Lesotho)

"I did not want to Leave! How about that!!!" (participant, Lesotho)

"At long last being 1 thing and working towards positive change" (participant, Lesotho)

"I learnt that as an HIV positive woman I have a right like any other woman to ACTS, SRR in my country as my government committed herself to the GIPA, UNGASS and ABUJA declarations." (participant, Swaziland)

"I learned self esteem as an HIV positive woman" (participant, Swaziland)

"Thanks sisters and please continue to do it even in other countries. This is really good thank you. Peace!" (participant, Swaziland)

Final report for Lesotho
Final report for Swaziland