While international rhetoric on HIV and AIDS frequently invokes human rights, putting these ideas into practice in specific settings remains challenging, according to a process evaluation of an intervention in rural South Africa published in the October issue of Culture, Health and Sexuality. Although female health volunteers understood gender inequalities to be a key obstacle to an effective local response to HIV, they had little interest in abstract notions of women’s rights or in directly confronting men. Their efforts to have their work socially recognised or materially rewarded in the local community were frustrated. Project funders prioritised ‘numbers reached’ over longer-term objectives.
Scientists, policy makers and activists frequently emphasise that protecting and promoting human rights is a prerequisite to a successful response to HIV. For example, “Rights here, right now” was the slogan for a recent International AIDS Conference. Appeals to human rights were key to the Treatment Action Campaign’s successful movement to improve access to antiretroviral therapy and are central to discourse on ‘key populations’ (men who have sex with men, sex workers, etc.).
Although freedom from discrimination and the right to health are enshrined in South Africa’s constitution, there is a yawning gap between these principles and the grim realities of people’s lives. This study was conducted in an isolated rural area of KwaZulu-Natal characterised by poverty, illiteracy, women’s subordination, and poor access to health services. The prevalence of HIV was high and antiretroviral therapy was not available at the time of the research in 2003 to 2008, meaning that HIV infection was effectively a death sentence.
Informal care by women was the only support available to many dying of AIDS. There was a group of about 80 volunteers, mostly untrained and working for no pay, travelling up and down hills to homesteads some distance apart. The women fetched wood and water, bathed the sick (diarrhoea was a significant problem) and helped people’s families in other ways. There was little local recognition of their efforts, due to negative attitudes towards both women and HIV. Burn-out was common.
A foreign-funded non-governmental organisation (NGO) worked with the women to establish a community project with three aims: to develop their skills and strengthen their ability to lead the local response to HIV and AIDS; to build a more supportive social environment for their work (including the support of local leaders and the church); and to link volunteers with partners in government departments and NGOs.
Underlying all three goals was an interest in increasing volunteers’ ability to exercise agency over their lives and health. It was assumed that involvement in a community health programme and partnerships with others would lead to increased agency.
Workers from the NGO hoped to use women’s involvement in home-based care as a springboard for supporting women to pursue two HIV and AIDS-related rights: women’s rights and the right to health. The project was imagined to have benefits in terms of gender empowerment, access to sexual health prevention and access to HIV treatment and care. However this concern with ‘rights’ came from the NGO, not the community.
The programme was successful in strengthening volunteer skills and capacity. The women participated enthusiastically in training provided by NGOs and used ‘cascade training’ to share skills with other volunteers. They worked tirelessly to deliver more effective home-based care, organise HIV awareness events, provide peer education, set up a local AIDS outreach centre, and advise people on accessing clinics and welfare grants.
The women were strongly motivated to improve the community’s access to HIV-related services, but were less interested in pursuing a gender equality agenda. They described gender inequalities and masculinities as obstacles to an effective local response to HIV, but ones which could not be changed – these were problems which would have to be worked around rather than directly tackled. In circumstances of economic dependence, directly challenging male authority exposed women to risks of abandonment and violence.
Poverty was seen as having a greater impact on their wellbeing than gender. The women were strongly motivated to use their caring roles in order to assert their rights to material resources. Specifically, they ensured that a key goal of the project was to gain access to monthly stipends for volunteers. This was seen to be vital to recruiting and retaining volunteers, many of whom were demoralised by years of unpaid work.
However, it proved challenging to build the partnerships with public sector agencies that might provide stipends as well as deliver other project goals, such as making health and welfare services more responsive to local needs. The agencies had hierarchical structures, were unused to community outreach and were overworked. Both the NGO and the female volunteers lacked institutional leverage.
In general, agencies expressed interest in the project but did not get involved in a meaningful way. In relation to stipends, they erected a series of bureaucratic obstacles to providing them.
Another goal of the project was to build recognition and respect for the female health volunteers and their work. Most local ward leaders continued to ignore the existence of the volunteers and avoided participation in AIDS-related activities. Church leaders did get involved, as did the community’s traditional chief (a crucial gatekeeper). He participated in several formal project events and spoke publicly about HIV and AIDS, although his style was at odds with project goals – he emphasised his masculinity and polygamy. Additionally, he went to great lengths to insist that the project should not be ‘political’ in any way and appointed a trusted male headman to lead the volunteer women’s group.
The only men who got involved were appointed by the chief or secured a paid job, leaving the unpaid volunteer work to women. There was widespread resistance to female leadership. However, the women lacked the confidence to assert themselves in relation to the male headman, or to assert their right to a greater voice in community decision-making and leadership more generally.
The project’s bottom-up approach to community empowerment was initially supported by the US-government funding agency and by a delegation of American politicians who paid a visit. However, the funder’s protocols for progress reports focused on ‘numbers reached’, with much less opportunity to report back on how the project was empowering poor rural women and strengthening the community’s ability to respond to health challenges. Moreover, during the project’s second year, the NGO was told that the US government had appointed a new financial controller for HIV and AIDS, who was unimpressed by the project’s failure to produce “deliverables of value to the US government”. The project had its funding cut, leaving the volunteers bewildered as to how this decision had been made by anonymous foreign officials, rather than in the local community.
The international discourse on HIV and AIDS frequently emphasises rights, especially women’s rights. The intervention described here is relevant as it sought to empower highly marginalised women by facilitating their involvement in a programme to strengthen local community responses to HIV. The authors, Catherine Campbell of the London School of Economics and Yugi Nair of HIVAN (the NGO which developed the project), question how effective it was to use ‘rights’ as a tool for analysis and action in this setting.
“We have sought to map out how the understandings and norms of key actors and agencies, and the interactions between them, undermined the likelihood either that (1) women would be willing to demand their rights to greater social and economic recognition and respect, or (2) that more powerful groups (ranging from local men, traditional leaders, public sector and donors) would support them in doing so,” they conclude. “Yet these are the two key preconditions for effective use of rights as a tool for HIV- and AIDS-related struggles in the types of poor rural communities least able to respond effectively to the challenges of the epidemic.”
Campbell C & Nair Y From rhetoric to reality? Putting HIV and AIDS rights talk into practice in a South African rural community. Culture, Health and Sexuality 16: 1216-1230, 2014.
