A Global Community: PWA Conference
The Global Network of People Living With AIDS/HIV (GNP+) held its' 7th International Conference For People With AIDS and HIV in Cape Town, South Africa, March 1995. The theme of the five day conference was "Positive Power To The Global Community", and included workshops and sessions on health, human rights, communication, migration, skills and identities.
The conference brought together 800 people with AIDS and HIV from all over the world. It was the first global conference for AIDS held in Africa. The official conference language was English with simultaneous translation into many African, Asian, Latin American and European languages.
Forty percent of the people came from the continent of Africa, 40% from Asia and Latin America and 20% from Europe and North America. The mixture of perspectives alone made the conference exciting. Imagine talking with a woman or man from Africa living with AIDS, or from El Salvador, Thailand, or Norway. The best workshops were "HIV and Migration - The Plight of Positive Immigrants", "Positive Behind Bars - Prisoners and HIV", "Being Public - Discrimination, Support and The Purpose of Being Public." As a result of these workshops we proposed to the International Board of Directors that they call for all nations to honor the Paris Declaration, which was written at the Paris AIDS Summit, World AIDS Day 1995. The Declaration is a document that looks at the AIDS pandemic as a threat to all humanity and calls for society to combat the disease and to fight the discrimination people with the virus experience. It would protect our rights where we have no rights, always including infected people in the processes to find a solution.
I want to talk about another workshop, "Men Who Have Sex With Men/Gay". This turned into being a frank discussion about unsafe sex and risk taking. To hear that this was being discussed was great news - usually it is done without much discussion. My lover, Carsten, also attended. Since we have decided to have unsafe sex together, he had a lot to say. I write this because it is part of our life together, at this point in our relationship we want to experience all of each other.
I wouldn't recommend this for everyone, we have had to negotiate every step of the way. I know there is the theory of reinfection but most of the participants in this workshop don't believe it is real, I personally don't know. I do know that my friend Ferd's lover, Robert, was part of a study at New York Hospital to identify different strains and he had 5000 mutant strains, go figure.
The best for information and life with the virus in other countries, but the worst because they didn't even mention the word AIDS, was the plenary "Long-Term Living: Different Perspectives." There were four presenters, a woman from Canada, a man from Uganda, a gay man from Israel and a man from Poland. They all talked about how healthy they were. The woman talked about testing pregnant women for HIV and said she supported it, when I challenged her about mandatory testing in any form, she said she supported it being available but not mandatory. She also spoke about long-term non-progressers and long-term survivors. She has remained stable for 6 to 12 years. The man from Uganda said the time it took from infection to death was two years for most Africans. This is due to many factors, such as nutrition, living conditions, access to health care, the lack of prophylaxis, lack of knowledge about symptoms and AIDS-Phobia. Even Aspirin is difficult to obtain. AIDS drugs are nonexistent in most parts of Africa. Imagine some of the painful symptoms without medications. He also spoke of violent discrimination where people are actually thrown out of their villages and their homes are burned. This is a reality in many parts of Africa.
Israel has good medical care and the regional health authorities have begun to fund retreats for long-term survivors groups. The man from Poland was positive for nine years and felt a lot of fear and pain initially.
His wife left him because in Poland there is a lot of ignorance and discrimination. He said he was depressed and wanted to die until he met other people with HIV. He said the key to survival is reading to gain knowledge, treatment and nutrition. Involvement with others with HIV means prolonged life.
Of course, I had something to say. I thanked the presenters and was glad they were healthy, but asked, weren't there any people with AIDS available to speak. Half of the conference was there and not one of the presenters identified as having AIDS. I told them I came to hear something about how to live longer with my 6 t-cells. This created quite a stir and we formed a group for people wanting to explore long-term living with AIDS. We realized we had little information about each other, our treatments, needs, support and desires. We wrote a survey which was presented to the conference at the closing ceremony. We later collected them and they will be analyzed by Phill Wilson at APLA and the results made available to the conference committee.
The conference was actually a success even with the problems, the most obvious of which was the limited health tracts. A few well attended alternative treatment workshops and North Americans and Europeans talking about Protease inhibitors in a country where AZT isn't even available. By talking with Africans I discovered that there are some traditional medicine studies being conducted throughout Africa, though there were no presentations at the conference. From what I could gather there were two possible reasons, first the traditional medicines are primarily used by black Africans who weren't well represented in the conference committee, secondly the studies are being conducted by HIV negative practitioners. GNP+'s rule is that all presenters must be infected. This is unnecessary since the Board of Directors is 100% infected. This excludes a lot of professionals. I know there are a lot of infected professional medical and legal workers, but they weren't at the conference. If people have the knowledge and want to help, we should let them contribute, it doesn't usurp any of our power.
For the closing ceremony we were treated to cultural events from around the globe. Hopefully the conference and all it contained will further carve away at the wall of ignorance surrounding AIDS and Africa today.
This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.