It is more difficult to live with the stigma of being HIV-positive than with the disease itself, according to Charles Jacobs, the founder of Change the Stigma Project. This sentiment is the driving factor behind his desire to make a difference regarding the negative perception people have of those infected with the human immunodeficiency virus infection (HIV).
In 2011, Jacobs became the first Mr Gay South Africa finalist to reveal his HIV-positive status publicly while participating in the competition. He describes it as the “big moment” in his life. “It really helps to disclose, to tell other people. It’s part of the healing process of dealing with HIV – to tell other people about it.”
Speaking to news organisation News24, he suggested that those people affected by HIV should also educate themselves. “I think that is one of the best methods to actually deal with it, is that you get to know everything about HIV. Because then it becomes less scary at the end of the day.”
Jacobs is on a quest to find the next Positive Hero 2015 for the Change the Stigma Project. For him HIV “is the face of our country. It’s black, it’s white, it’s straight, it’s gay, it’s rich, it’s poor. It has affected almost every sector in our society in South Africa.”
The project nominated Jacobs in 2012 as their Positive Hero. It invites people who are HIV-positive to share their stories; among the requirements to be the hero of the year, a person must fundraise for an HIV-charity and for a non-governmental organisation of their choice.
Jacobs explains that the aim of the campaign is to address the misconceptions about people living with HIV and Aids. “The Positive Heroes will assist in changing people’s perceptions, their attitudes, and people’s responses to those living with HIV.
“The Positive Heroes will share their stories and experiences of living with HIV and Aids. This is so that the general public can relate, realising that HIV is not something that happens to other people, but the fact that it is all around us. And it can happen to anyone.”
Finalists have posted their stories on the Change the Stigma webpage.
Rachel Nolan, a Zimbabwean living in Gauteng, says she understands what it feels like to be rejected and stigmatised. “I tested HIV-positive on 6 June 2002. It’s a day I will never forget. I was so confident the results would be negative as I had only been with one person after my son’s dad left me – only for the results to come back ‘positive’.
“I took it very badly and cried so much. I confided in people I thought were my close friends only to be rejected and shunned. Another threw away her coffee mug, because she saw me drinking from it,” says Nolan. “I told my mum and sisters who also took it badly, cried. But they never rejected me and stood by me.”
TREATED LIKE AN OUTCAST
Word spread in her community, Nolan says, and she was treated like an outcast. “That broke me and I even tried to commit suicide. I was kept in hospital for about a month with only a handful of friends by my side and my family. My son used to come and visit me every day with my sister, but one day he never came. When I asked where he was she told me he refused to come.
“He said he wanted to see me at home. That’s when it hit me: I need to fight and stop worrying about outsiders and fight to stay alive especially for my son as he still needs me.”
She is writing a book about her journey with HIV and has a Facebook page to help people who suffer in silence, Nolan adds. “We are still human, deserve to be loved and treated equally.”
Nomasomi Limako, from the East Rand, says she wants to be the next Positive Hero in South Africa, because she is disabled and HIV-positive. “You have to constantly fight for your rights. People with disabilities in our country are still experiencing discrimination and stigma in every sphere of life, and adding HIV to the picture makes it even more difficult.
“Society still treats people with disabilities like someone with a mental illness, so they tend to think for you. You are constantly suppressed, When you try to voice your thoughts, you are frowned upon or regarded as a lair or manipulator,” says Limako.
She received her HIV-positive diagnosis on 20 May 2003. “My life changed from the moment when the nurse told me I have HIV/Aids. I thought I was going to die soon and felt hopeless.
“I could not tell anybody because of the myths and the misconceptions that people have about people with disabilities. These include that disabled people love sex too much, and also that having sex with a disabled person could heal one from HIV,” she explains. “I was infected by the guy who thought I could heal his HIV, as I have a disability.”
Limako confided in a friend and four years later told her family. “I stigmatised myself before other people could stigmatise me.” Her achievements on her journey with HIV include participating in the 2010 Positive Convention in Durban.
Gary Allpass, who hails from Midrand in Johannesburg, says that when he was diagnosed, he was given six months to live. “I had a horrendous sero-conversion illness which lasted three weeks, and a weight loss of 30 kilograms. That was in October 1992.”
As a para-equestrian, Allpass has won the South African Para Dressage title twice – in 2010 and 2011 – and he is now trying to qualify for Rio 2016 Paralympics, but needs extensive sponsorship. “I have also received my Gauteng Para Dressage colours and Eastern Gauteng Regional colours in 2010, 2011, 2012 as an able-bodied rider.”
Stigma around HIV has been prevalent since the virus was first identified, and Allpass has felt this since he was diagnosed. “In 1996, I was not allowed to represent Western Province due to my status. Again in 1997, Western Province would not allow me to represent them, but I was asked to ride in the FEI Dressage Challenge, representing South Africa against Argentina, Chile, Brazil and another South American country. I was removed from the dressage judges’ panel.”
In 2008, he landed a job as the stable manager at an equestrian centre. “When they heard about my HIV status 10 days later, I was immediately fired,” he says. “I approached the [Treatment Action Campaign] and they referred me to ProBono, where a lawyer took on my case for unfair dismissal. It took three years to go to Labour Court and I successfully won the case.
“This aided in changing the law in South Africa in regards to small time employers, in that they could not dismiss HIV-positive employees.”