Important note: Information in this article was accurate in 2008. The state of the art may have changed since the publication date.
South African Press Association - September 3, 2008
Denise Williams
"There needs to be more research about why some people feel comfortable about being tested and going for treatment and why others don't," said Mary Crewe, the director of the Centre for the Study of Aids at the University of Pretoria.
Crewe, quoting an United States news broadcaster in 1983, said fighting the fear of Aids was as important as fighting the syndrome. This reinforced the belief that a more sophisticated and theoretical understanding of the communities involved was needed.
"It cannot be addressed by calls to reason."
She said there needed to be more debate to look into the shame and stigma associated with HIV/Aids and its links to some societies' beliefs and superstitions.
Crewe also cautioned against people being coerced into getting tested and having their status disclosed to their communities. Forcing someone to get tested could be an invasion of privacy and a violation of human rights.
Crewe said disclosure could lead to people's sexual behaviour being "outed" in public and those actions being deemed right or wrong.
"The demand for testing is a demand to bring sexual behaviour out into the open ... the coercive factor is so distressing."
She said the way in which condoms were marketed created a belief that sex was not for pleasure, but was either right or wrong. Crewe said she was not against testing, but that it should not be forced and form part of a "test-fest". This involved people being encouraged to know their status, sometimes even for a prize, but without support from professionals who understood the person and the society in which he or she lived.
There was too much work involving statistics on the number of people with the disease and not enough "about the soul of the society".
'Dirty' blood
Author Johnny Steinberg -- who has written an ISS monograph entitled Aids and Aids Treatments in a Rural South African Setting -- said a person's beliefs and the society he or she lived in were crucial to understanding the shame and stigma surrounding HIV/Aids.
In a case study he conducted in Lusikisiki in the Eastern Cape, Steinberg said there was stigma surrounding treatment. He said some people felt taking medication was a symbol of "black defeat".
"It humiliates people that they have to get Western medicine from a Western clinic," he said.
Some people were also superstitious about having their status confirmed by a test. They believed that knowing their status would weaken them in the face of their enemies, or that they would leave no legacy because their blood was "dirty". He said the use of the word dirty highlighted the shame associated with the disease and in knowing one's status.
Crewe also referred to a phenomenon of dual citizenship for people who were HIV-positive or had Aids. They belonged to both the kingdom of the healthy and the kingdom of the sick.
"People with HIV seem to represent death before dying. They live death then die," she said, reiterating that it was vital to understand how society responded to people living with HIV/Aids.
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