Expert Witnesses’ Testimonies
Executive Director, SWAPOL, Swaziland
The story of SWAPOL is closely linked with my personal experience. I learned about my HIV status accidentally in 1999 after taking a medical examination as a pre-requisite for the award of a scholarship to study abroad. When I went for the medical examination, I did not know that I was also being subjected to an HIV test and that the scholarship could not be awarded to anyone with HIV. The consequence of my HIV status meant that I could not be awarded the scholarship. Subsequently, I became a victim of stigma and discrimination among family and community members. I experienced pressure that resulted in leaving my in-laws’ home. As a coping strategy, I joined with four other women in 2001 and started an organization for women living with HIV and AIDS who were encountering stigma and discrimination from their families and community members. It was named Swaziland Positive Living which became popular by its acronym—SWAPOL.
While three of us who co-founded SWAPOL are still alive and involved with activities of the organization, two are deceased. We’ve grown a lot since those early days. Now SWAPOL serves 55 support groups in 55 rural communities with a membership of over 11,000 people. We support women living with HIV, orphans and vulnerable children, and the grandmothers. The mission of SWAPOL is to improve the quality of life for people, particularly women and children, infected and affected by HIV and AIDS in Swaziland.
We respond to the health care needs of people living with HIV and AIDS using an integrated approach, that also looks at their food security, the policy changes needed in areas such as health care delivery and health financing, the psychosocial challenges faced by orphans and vulnerable children, and the problems that exist across all sectors because of gender inequality.
Grandmothers face complicated health challenges in the context of the pandemic. Aging with HIV and AIDS is more difficult than aging with chronic age-related conditions such as heart disease and diabetes. We have found that the only way to ensure their health is properly cared for is to engage very directly with the grandmothers in their communities. SWAPOL has established 30 accessible treatment sites, and trained 110 community caregivers who conduct home visits to the grandmothers. We assist them with all of their healthcare needs, from taking medication, to screening for age-related diseases such as heart disease and diabetes. ca I want to give you one very simple example of the difference that community-based care makes. Recently, we worked with a 62 year old grandmother who went to a healthcare centre for treatment; however she was afraid to disclose her HIV status. The nurse asked the grandmother “What is really troubling you?,” but the grandmother would not say anything to her about the sickness. Fortunately, this grandmother was accompanied by a SWAPOL caregiver, who took her aside and had a discussion with her about the importance of disclosing her HIV status. She comforted and encouraged her, and the grandmother was able to disclose her status and get the proper treatment she needed.
Because SWAPOL works in the heart of communities in Swaziland, we can see the whole picture. We understand that the only way to resurrect life and improve the quality of life for grandmothers and the children in their care is to understand them as whole human beings. For example, if you include a grandmother in an animal husbandry project, but she can’t have her own bank account without a man’s signature, or if you’re trying to improve the attendance of girls in school but grandmothers aren’t getting the support they need to talk to girl children about sex and sexuality, you run into problems. You cannot properly implement any programme if you don’t understand the individual challenges, and if you’re not building community support and awareness. Once you do have this understanding, some of the solutions can be easy. With the 62 year old grandmother I mentioned, a few well-timed moments of advice and encouragement was all that was needed to get her into life-saving treatment.
Community-based organizations (CBOs) are deeply connected to their communities, and this is a very important factor in our success in fighting HIV and AIDS. My story and the story of SWAPOL are not at all unusual. Many of the CBOs were started by women who are HIV positive themselves and have a close emotional and personal connection with the issue and decided to take action. In fact, CBOs have provided much of the fabric that keeps communities together. The sort of programmes the CBOs run—for example, helping the grandmothers come together in mutual support groups to strengthen themselves and each other—are part of rebuilding our communities. HIV and AIDS totally destabilized the traditional relationships and interconnectedness of rural life. At the same time as CBOs have been delivering essential services, we have been reconnecting people and redeveloping relationships, overcoming the fear and discrimination that were separating people and keeping them isolated. We’re helping people recreate and rediscover the community bonds that have been there for generations.
International organizations and donors need to better understand and respect the expertise of grassroots organizations. We have people living with HIV and AIDS on our staff and Board, so there is a real sense of community ownership. Our accountability is first to the community, and the community also feels itself to be responsible for making our initiatives successful. It’s because we’re actually consulting with and creating the solutions with the community members that we’re able to come up with effective answers for the challenging problems created by the pandemic. It’s about accountability and commitment on both sides—the CBOs and the communities themselves. That dynamic is essential for making things work.
Grassroots organizations grow and change in response to the new challenges and opportunities people are facing. We still strive to meet grandmothers’ basic needs, but now we also work with the grandmothers to advocate strongly for their rights. In 2006, when the Stephen Lewis Foundation hosted the first Grandmothers’ Gathering in Toronto, the grandmothers were grieving, they were overwhelmed by the responsibility for their orphaned grandchildren, and desperate for counselling and emotional support. They were dealing with the impact of being thrown into deep poverty because of the death of their breadwinners. But now, over the past six years through projects and organizations like SWAPOL, the grandmothers are no longer completely exhausted by the struggle to survive. They are getting just enough support to send their children to school and put food on the table. As a result, in community after community where this support has been flowing, grandmothers and the community-based organizations supporting them have been able to invest energy into bigger, more systemic changes.
Community-based organizations are now mobilizing around a number of key legal and policy changes that need to be made to improve grandmothers’ lives, in areas such as violence against women and housing security. For SWAPOL, advocating for pensions is at the top of our priority list. Grandmothers were hit so very hard by the poverty that followed the deaths of their husbands, sons and daughters, and the demands of caring for the needs of their grandchildren. SWAPOL has been doing what it can to help the grandmothers with grants and income-generating projects, but the reality is that we cannot adequately meet all of the grandmothers’ needs in this way. The long-term solution must be to change the way that pensions are being granted to the elderly in Swaziland.
The reality is that even with the gains that have been made, and those that might come—from treatment as prevention, to the availability of drugs for all who need them—community-based organizations will always be necessary. We are crucial for ensuring access, and for understanding and addressing the challenges faced by grandmothers and others in the community, so that they can benefit from these developments. Whether it is bringing about behaviour change, healing lives that have been damaged by so much loss, breaking through stigma, or simply understanding what works and why, we are—across the continent—the lifeline and advocates for grandmothers and the children in their care. We carry this responsibility with great concern and love, but we have done it without adequate support or recognition of our expertise for far too long. The grandmothers are at the heart of the pain and suffering, but we are also at the heart of the response to AIDS in our countries. It’s time that we, and the organizations run by and for us, had all the support we need.