Confronting HIV-Aids stigma is at the heart of tackling the challenges of KwaZulu-Natal’s HIV/Aids epidemic.
Stigma Survey and the benefits of disclosure
A new survey sheds light on the issues of internal and external stigma. HIV/Aids Stigma is pervasive and silent and is, according to the survey, almost endemic among the young people of KwaZulu-Natal. Simply put, stigma is killing people.
BUT….. the benefits of disclosure are, “If you can bring yourself to it, two things: the first is that you will be rewarded with love, affirmation, approval. You will not be despised and rejected. And the second is you will have an enormously beneficial effect on other people.” (see below)
In June 2015, the South African National Aids Council (SANAC) launched “The People Living with HIV Stigma Index“, the first large-scale survey on HIV and TB-related stigma in South Africa. It offers an objective view to what is often a subjective issue and is a baseline for future comparisons.
Researchers, surveyed 10,473 HIV-positive individuals, 15 years old and above, and found moderate levels of stigma exists in South Africa.
“The short story is we are making so much progress but we have so much more work to do,” said Dr Fareed Abdullah, CEO of SANAC, There are still 400,000 new infections each year in South Africa and around 200,000 HIV-Aids related deaths. Stigma plays a key part.
Referring to the report, Deputy President Cyril Ramaphosa said, “Sometimes discrimination is not overt. It could be a glance, a whispered remark, a social snub. There are times when people living with HIV internalise the stigma, undermining their own sense of self-worth and dignity. It is for this reason that we are launching this campaign against stigma and discrimination.”
Four types of Stigma
SANAC identifies four different types of stigma. External stigma refers to others devaluing and discrediting those who are HIV positive. Internalised stigma occurs when people living with HIV begin to believe those negative things, resulting in negative views on an identity based on HIV status. Anticipated stigma is the expectation of being treated differently because of one’s status and courtesy stigma is defined as the perception or experience of stigma due to association with an individual or group. The report also looks at stigma related to TB and notes that HIV/Aids stigma often occurs on top of stigmas related to race, class, and gender.
Abdullah said it was important to have HIV-positive researchers collecting the data to open up the conversation. They asked questions like, “How they’re treated by other people, what they think about their own disease and what sort of problems they have if they go to health services, or schools?”
36% of respondents had experienced external stigma. It was highest among young women who were , poor, living in a small town and living with HIV for two to five years. KwaZulu-Natal, featured the highest levels of both external and internal stigma. and also has the highest prevalence of HIV.
“From the very start it has probably been the most stigmatised disease in human history,” said Constitutional Court Justice Edwin Cameron, calling internalised stigma “the great unspoken issue”. “The main effect of internalised stigma is death.” Across society, it remains difficult for many people to talk about HIV/Aids because it is sexually transmitted, but the silence undermines treatment and prevention programmes.
The survey’s results for internalised stigma were higher than for external stigma. 43% experienced internal feelings of stigmatisation and 41% exhibited avoidance behaviour. A total of 39% of total respondents said they feared potential stigma.
The report found those most likely to experience internalised stigma were 15 – 24 years old, living with HIV for under a year and without a formal education;. Again KZN saw the highest figures.
Disclosing HIV Status
Regarding disclosure, 89% disclosed to their partners,and 68% to their children. Worryingly, 28% suggested their status might have been disclosed without their consent, In the main, those who disclosed their status found they were supported after sharing their status.
At the launch in the Gugu Dlamini Memorial Park, (She was murdered by a mob in December 1998 after declaring her HIV status.) Ramaphosa said “In her memory we must bring hope. We must create a world free of stigma and discrimination against people living with HIV. In her memory we must inspire young women to draw strength from her example and to make positive choices. We must end stigma, we must end discrimination. We must build a society of which we can be proud.”
Justice Cameron said public figures could play a greater role. When he announced his status in 1999 shortly after Dlamini’s murder, he was confident other public representatives would do the same. Yet the middle class, politicians and social elite have not followed.
Cameron would never say people should disclose their status, but noted the benefits of doing so. “If you can bring yourself to it, two things: the first is that you will be rewarded with love, affirmation, approval. You will not be despised and rejected. And the second is you will have an enormously beneficial effect on other people.”
“The People Living with HIV Stigma Index” hopes to improve the situation. Then the key thing is to measure again in three years and do something more. Such efforts are at the heart of continuing to confront the country’s HIV/Aids challenge.
Based an article by GREG NICOLSON in Daily Maverick 11 Jun 2015