From the Project

December 1, 2008, The Campaign to End Stigma, by Jim Newton

Edzimkulu has for several years recognized that stigma is the single biggest issue to be overcome in the global fight against HIV/AIDS. In South Africa, counseling, testing and treatment all are available in the public health system. Every person, at least by law, has access to the health system, and diagnosing, access to medication, and basic care all are provided.

But, for many reasons, some well-known and obvious and some obscure, helping people to get tested and access treatment is often blocked by individual and collective stigma around the syndrome. People are afraid, they are ashamed, and they are in denial. And stigma often comes directly from health care professionals, who themselves haven’t been tested and who themselves harbor fear and shame and who themselves have attitudes of disgust or condemnation toward those who are infected.

Stigma remains in Ndawana among relatively few people or groups, but over the years the Edzimkulu programs virtually have eliminated stigma in Ndawana. This is not true in many or most communities in the Ndawana area, and Edzimkulu began an outreach program in May 2008, to work with a number of communities around the issue of stigma. We were fortunate to make connections with Memeza Africa, the choir from Soweto, while they were touring in Canada in April 2008, and we proposed that Edzimkulu and Memeza work together for a six month period on this campaign.

Memeza doing HIV/AIDS outreach

It became evident that there was significant stigma within Memeza, exemplified by the fact that most or all of their members knew one or more people who had died of AIDS, including relatives, but they did not disclose their HIV status with each other until one of their members became very ill during the tour in Canada. That person came to Underberg and received counseling in Ndawana, and within a very short time she had gone from being mired in her own stigma to being outspoken about stigma and the need for testing and disclosure. Many other Memeza members followed, got tested in Ndawana, and all disclosed their status to each other and to Chris and me. Following that, most of them received training in voluntary counseling and testing (VCT) and wanted to go to other communities to counsel and test and give testimonials about stigma and HIV/AIDS. Along with the testimonials they sang and taught songs to the communities. These trips were made jointly with the Ndawana health workers and HIV support group, so that the choir and the people of Ndawana formed a powerful voice for elimination of stigma outside their own community.

In September Tim Senger came with the intention of making a documentary about what we were doing. It turned out that we had not allowed nearly long enough to produce a full documentary, but Tim did make an Edzimkulu video documenting the work.

It was our plan to have this work culminate in a large “End Stigma Celebration” on or near World AIDS Day on December 1, 2008, and the celebration actually was held on November 29, which was a Saturday and the only logical day near December 1 that would work to get the large crowd we envisioned. The celebration was held at the Himeville Sports Ground. The venue included a tent for 1200 people, 1000 chairs, a large stage, sound systems, etc.

A part of the plan had been for squares of material to be given to each of the ten communities, and on which people would write messages about AIDS and stigma and loss and hope, each an expression of that person’s experience about HIV/AIDS and stigma. The squares were returned to Edzimkulu, and Chris, along with volunteer Margaret Rathnavalu, sewed each community’s squares into a quilt. All of the quilts were displayed in the background to the stage on the day of celebration. And what a day of celebration it was.

Matukiso speaking at End Stigma event

It began late, as these events always do, because the contractors were very late with the sound system. The day opened with a song and a prayer, again as all meetings here do. This was followed by a welcome by Jim, in which I also made a plea to the men in the audience to stop the violence against women and girls (we are in the midst of 16 days of protest against violence against women and girls). Next Matukiso spoke about what the day held and especially about stigma.

By this time the tent was nearly full and most people were wearing the t shirts we had ordered. The shirts are a light blue, with END STIGMA and THE POWER OF KNOWING on the front. On the back is the Edzimkulu logo, along with ALONE WE CAN’T BUT TOGETHER WE CAN. That slogan was to have been Alone I can’t but together we can, but the t-shirt company made a mistake, which turned out to have been a good thing, because the slogan actually on the shirt had more interpretations and more points could be made about it. “Together we can” became the chant of the day, and the power of more than 1000 people chanting Together we Can over and over was amazing.

Next was a tribute to Dr. Les Pitt, given by Chris. Les’s widow Cynthia was in the audience by invitation, and she was very touched with the tribute. We had also taken a declaration from Canadian aboriginal sport groups, brought here by volunteer Margo Mawdsley, and rewritten it to be about what communities here committed to do around stigma, what the communities asked for from the Department of Health, and what the Department promised to do. We had produced English and Zulu versions to hand out, and framed one for Cynthia to take home, to represent how we are continuing and expanding on the work Les had done. The presentation to Cynthia was followed by “The World Shall Love Again,” a song written by Holly Wright and performed by her and Memeza, and the whole tribute was quite moving.

Next, each of the ten communities with whom we had worked most closely and who had made the quilt squares, was invited to perform with song, dance, testimonials, etc. Again, these performances, in front of the quilts, were very moving.

Following the performances the declaration, signed by all the communities, was presented to the Department and accepted by them. That version included both English and Zulu and was framed for display by them. Mrs. Radebe, Managing Director of the Sisonke Health Department, accepted the declaration, agreed to their part, and then gave a long but engaging keynote speech.

The Memeza Choir, sometimes including Holly, then gave a performance which was excellent and received with much excitement and appreciation by the crowd. Following that Chris expressed thanks to all the attendees for their work and attendance, the closing prayer was given, and people were invited to lunch. By then it was four PM, but this is nothing unusual here and people ate, we cleaned up, and the exhausting but very successful day was over. Our six months of work has produced commitment and unity among many communities, and End Stigma and Together we Can is on everyone’s lips and, we believe, in everyone’s hearts. A most satisfying end to this part of the campaign.