“Positive Heroes visited the Bergsig Clinic in Robertson yesterday for an HIV/TB Awareness event. I did a general chat about disclosure and stigma. And Willie, their guest of honour for the day, told his story.

“It was one of those events that make me so happy that do what I do. This community – ravaged by poverty, HIV, TB, diabetes and drug/alcohol abuse – is served by a clinic manned by 8 dedicated staffers… who deal with everything from testing, treatment, hospice care, through forensic medicine. They were blunt, outspoken, honest, open, generous, gentle, hilarious – but most of all – each one of them shone with pride in what they do. There was real passion in each of them.

“Their patients packed the room to the rafters, kids pressing their noses against the windows. The children from their outreach program provided the entertainment, a marching band, spoken word poetry, singer, dancers, actors, drum majorettes…”

“I had a fantastic time. Willie was incredible – by turns serious, raunchy, emotional. He taught them so much yesterday – I don’t think anyone could have done more. What a morning …. This is why we do what we do. Sue.”

“When I heard about the Positive Heroes Fashion Show, I thought, wow, that sounds wonderful, but it is happening all the way in Cape Town. I will never get there for it. However, I am an HIV activist, working for a radio station in Mpumalanga called Emalahleni FM, and where there’s a will, there’s a way. I realised this Fashion Show, might make a wonderful story for the station, so I spoke to my station manager, and he agreed to pay for my fare to get to Cape Town.

“It was my first time visiting the Mother City. The journey was by bus, and it took a whole day and night. However, when I arrived, I fell in love with this beautiful city, the warmness of the people, and I felt like I was home.

“At the fashion show I really enjoyed myself, helping out on the day of the show, and then watching the incredible fashion on the runway during the evening. It was such a buzz just being there. But it was also an eye opener for me. It reminded me that if you are living with HIV, you need not feel low self esteem.

“I myself have been at that low point. My life as I knew it crashed down in 2004, when my husband committed suicide. He had just found out his positive HIV status. However, despite the fact that I was already getting sick myself, I still couldn’t face the truth, and ended up waiting until 2008 to confirm what I already knew – that I was also HIV positive. In the depth of my sickness, I too wanted to die.

“The Fashion Show was a wonderful thing. It showed that living with HIV is not the end of your previous life, but the beginning of new experiences living with HIV. You can still go out there and look good, and be attractive to people. And to steal Sue’s words, “If you feel good you look good and if you look good you feel good.” I just had to look around the many happy, smiling faces at the show, and those of my fellow Positive Heroes, to know that HIV is a manageable disease.

“I found the experience of the Fashion Show very interesting, and ended up holding some great interviews, which aired on Emalahleni FM on 7^th November. Thank you Positive Heroes for the wonderful experience of being in Cape Town and coming to the Fashion Show!”

BLOOM fashion 

The suit has recently been completed by award-winning, Durban-based designer Terrence Bray, who pieced together over 400 individual pattern pieces to create the Green Suit, sponsored by Green Office to raise awareness of environmental issues. Each piece has been hand beaded by over 40 members of the Hillcrest AIDS Centre’s Woza Moya group in Kwa Zulu Natal. The craft group at Woza Moya is made up of people living with HIV, who create craft items to generate desperately-needed income.

“We wanted to make something spectacular that speaks strongly about green issues,” says Paula Thomson, manager of Woza Moya craft shop. “We wanted an artwork that would stop people in their tracks, while getting them to think about our environment, and then get them to make one positive change in their life.”

The suit, weighing in at 8kg, was worn with flair by model Vincent Ntunja. The outfit was topped off with the hand-beaded hat, and green staff. The beadwork is so fine that Jenni Button, founder of Philosophy, one of the designers on the catwalk at the Positive Heroes show, plans to collaborate with Woza Moya on the creation of a line of beaded evening bags.

Vincent was joined on stage by the voices of the Treatment Action Campaign choir, singing the Positive Heroes theme song ‘You’re Extraordinary’. In addition, they were joined by just some of the amazing individuals who are working hard to change attitudes to HIV in South Africa, our own fabulous Heroes.

We were also honoured to be joined by staff of Yabonga, a Cape Town-based non-governmental organisation which provides education, support and skills development to empower women, men and children who are infected or directly affected by HIV/AIDS. This is the workplace of some of our Heroes, Ana Mdoda, Khuthala Makeleni and Noncedo Gulwa.

As the choir and the Heroes danced down the runway, there was hardly a foot in the house that wasn’t tapping, or a face that wasn’t smiling. Truly, it was a joyful celebration of the zest for life exhibited by people living with HIV.

Woza Moya: www.hillaids.org.za

Yabonga: www.yabonga.com

In 2000, Nomasomi learned that she was pregnant, which she describes as a ‘gift from God’. However, the impact of her pregnancy was that her boyfriend left her. “When I was pregnant my boyfriend broke up with me. He was ashamed of me because I have a disability, which is why he never introduced me to his family. He ran away, so I am a single parent.”

Nomasomi also discovered the stigma of being pregnant as a person with a disability. Health workers at the clinic questioned how she could be pregnant. “The nurses told me that a people with disabilities cannot have sex or become pregnant. They told me that I must have an abortion.” But Nomasomi fought to keep her twins, and refused all offers of an abortion. “On the 20^th September 2000 I was blessed with twin boys, which was extraordinary for me because of my disability, and I carried them for the full term of nine months.”

In 2003, Nomasomi decided to take out a life cover policy, and was required to take an HIV test. She was shocked to find that it came back positive. “That was the beginning of the new chapter in my life now. At first I was depressed and I couldn’t tell anyone because of the myth that people have about people with disabilities loving sex. I thought that if I disclose to people they will say I love men.”

Nomasomi realised that she must find some support to help her come to terms with her HIV status. “I contacted NAPWA and went to my support group only to find that there was no one with a disability who I could share my fears with. I looked through the window, and I turned and went home again, because I knew that people would judge me because I have a disability.”

Those were dark times for Nomasomi. “I went to my corner, and went on being depressed alone. I was afraid to disclose to people, because they would say where did I get it, and some will look at me like I sleep around with men. But I was infected by one man who doesn’t have a disability and I did not sleep around. I couldn’t even tell my family who would think the same way, and the community would think I love sex and different men, and that is why I have HIV. But, I wondered if I love sex and men so much like people think I do, then why do the men not love me.”

Nomasomi works as a pharmacist, so she was aware that ARVs would help her to stay healthy. However, she was afraid that her colleagues would see her taking ARVs for herself, and she didn’t want stigma from her colleagues. She says, “having a disability is a stigma, but having HIV as well is a double stigma.” She felt desperately alone: “I met one person from MINDSET and he counselled me, and made sure that I understand the condition that I am in, so I started to look for people with disabilities who are living with HIV but I found no one.”

It took Nomasomi two years to come to terms with her status, and to realise that she must act to save her health. By this time she had contracted TB and her CD4 count had dropped to just 7. She started taking ARVs and her health began to improve. However, she was still unable to disclose to her mother, and told her that the medication she was taking was for high blood pressure.

In 2007, Nomasomi finally disclosed her HIV status to her mother, who found the news very difficult to accept. However, she has now come to terms with the HIV status of her daughter. Nomasomi disclosed her status to her sons last year, and was surprised at their different reactions. One son accepted her, saying “you are still my Mummy, and I still love you.” However the other son was very angry at his father, the man he had never known who infected his mother, but has now also accepted his mother’s HIV status.

Nomasomi is now open about her HIV status with everyone, including her colleagues at the pharmacy where she works. She says, “I can now talk about HIV at my workplace.” However, there continues to be a huge number of HIV positive people with disabilities who are frightened to be open about their status, because of the double stigma surrounding HIV and disability.

She says, “With all the bad experiences that I had after finding out my status, I don’t want anyone with a disability to experience what I have experienced. I saw the need for education about the virus in people with disabilities, because when they die of HIV people say it was the disability that killed them. So I saw the need for awareness amongst people with disabilities to show them that they are not immune to HIV.”

Nomasomi says there is still much education to do in communities who believe in the myth that disabled people like to sleep around. There is also a myth that is spreading which says that someone can cure their HIV by sleeping with a person with a disability. Nomasomi says that it is often hard for people with disabilities to negotiate safe sex. “Men see you as a woman with a disability and they see you as half a woman, who they can use. They are ashamed to be seen with you, and they will come only in the dark when they will not be seen.”

Nomasomi’s message for people with disabilities is this: “Don’t compromise your life – condomise! You must live your life, and do not be afraid to stand up for yourself.”

But as our lives get back to normal, let’s look at what we achieved at this year’s show in numbers:

• Around R120,000 raised for Positive Heroes which will keep our doors open for another year
• Nearly 500 guests, sipping cocktails and nibbling canapés in our lounge
• A team of over 40 wardrobe coordinators, stylists, dressers, hair stylists and make-up artists working backstage
• 39 pieces of media coverage to date, and counting
• 36 stunning professional models
• 21 different collections on the runway provided by some of South Africa’s top designers
• 20 hard-working volunteers to man the door, lay out seating, sell raffle tickets, sort auction payments and just generally trouble-shoot
• 18 fabulous auction items, from designer garments to 5* getaways
• 6 wonderful raffle prizes
• 5 unique and extraordinary entertainment acts
• 3 photographers snapping away
• 3 winning designs in our t-shirt design competition hosted with Springleap.com in association with The Cape Town Fashion Council
• 1 green suit, beaded by the ladies of Woza Moya at the Hillcrest AIDS Trust

Phew, no wonder we are tired!

Positive Heroes is excited to announce that our fabulous Fashion Show will be even more exciting and interactive this year. Get involved with our brand new t-shirt design competition called ‘Inspire Courage’, which is springing into life in partnership with Springleap.com and The Cape Town Fashion Council (CTFC). The winning designer will receive a prize of US$1,250, with two runner-up prizes of US$300 (sponsored by Springleap.com and The Cape Town Fashion Council), and will be featured on t-shirts at the Fashion Show.

The competition will bring designers from all over the world together via Springleap.com’s online community of awesomely creative people to design a t-shirt design that shows the courage that is needed to overcome the stigma surrounding HIV.

To tie in with this year’s Fashion Show theme, Bloom, we want designers to show how individuals can bloom, and turn around the tide of negativity surrounding HIV by their actions and voices. You can already see the fruit of some of those designers at: http://www.springleap.com/designs/vote/.

For more information about the competition, and to enter, visit http://www.springleap.com/posts/view/springleap-and-positive-heroes-inspire-courage-design-competition-win-us-1250.

This is the Team’s first time running in team-member Willie Engelbrecht’s local area, and as always, the Team will take time out to visit schools and clinics in Willie’s community in Robertson. Here, they will speak about their experience of being marathoners,  and living as Positive Heroes.

If you live locally, please come out to support our team, and cheer them along their way. We will bring you more details closer to the time about the route and linking up with other supporters.

Now in its third year, the Fashion Show, which is taking place on the evening of Thursday 3 November, brings together top South African designers in a unique event of fabulous fashion and entertainment, to raise awareness of the stigma surrounding HIV, whilst also raising core funds to ensure that Positive Heroes can exist.

After hosting last year’s show in the brand new Cape Town train station, we thought that venue would be pretty hard to top. But after months of investigation into the more weird and wonderful corners of Cape Town, we’ve found a venue that is slap bang in the heart of our city, that speaks volumes about our mission to make the issue of stigma part of our civic duty – The Cape Town Civic Centre.

The soaring central concourse will make the perfect canvas for some great fashion from Cape Town’s top couturiers, as well as some great entertainment and surprises along the way. This year’s show will see the return of all the great designers who work with us every year, plus some new up-and-coming designers. The show will be in two sections, with two short auctions in between.

Of course, the event couldn’t happen without The City of Cape Town, once again our generous sponsors. Don’t forget to tell your friends about this fashion-fabulous event! More details will be revealed soon.

But running marathons is only part of what our Ultra-Marathon Team is about. Our team was incredibly busy, telling people in communities around KZN about their stories of living as Positive Heroes. They visited WozaMoya Beading project to meet the beaders, sit in their gorgeous Dreaming Chair and share stories (www.dreamsforafrica.org.za), toured the Hillcrest HIV/Aids Respite Care Centre and chatted to patients (www.hillaids.org.za), met the children at Sizimisele Combined School, and sang with the teenagers at Mafumbuka High School.

But not only that, the Team also did a host of press and radio interviews including The Natal Mercury, Natal Witness, Isolezwe ( Zulu regional paper), East Coast Radio, SABC Radio News, Merebank Rising  Sun Community Newspaper, The Daily News (Durban) Comrades supplement and The Witness (Pietermaritzburg). However, the jewel in the crown was appearing on the eTV News on Saturday night ahead of the Comrades to 11 million viewers.

We experienced many things, met many people, sang, danced, laughed and cried little.  But, for me, one moment stands out.  It was almost 5pm on Sunday,  and getting very cold.  The Pietermaritzburg stadium was packed with exhausted runners – there were about 10,000 people milling around.  Evie and I had finally found each other in the crowd when young woman came shyly towards us.  She asked if she might greet Sis Evelina.  Evie immediately hugged her and the girl said:

“Sister Evelina, I am so excited.  I have been waiting for you all day because I was sure I would find you. And here you are! Yesterday I was so sad and I thought my life is finished.  Then I saw you on e-News and you have changed everything for me.  I was giving up and I had no more hope.   But what you said – your words have inspired me and given me the belief that I may also be like you. And I am going to do everything to live and be a strong person.”

This is why we do it.