September 5 2002
"I know my status and you?"
By Brenda Dimbleby
05/09/2002 - Community members from Ennerdale near Johannesburg joined together in solidarity to destigmatise and offer support to those infected or affected by HIV/AIDS. They marched, holding hands and singing, from the Ennerdale Extension 9 Clinic to the SOS Social Centre Ennerdale on Friday, 30 August 2002.
Over 100 Ennerdale community members chose to take a stand against HIV/AIDS, refusing to hide in the shadows of shame anymore. They marched from the Ennerdale Extension 9 Clinic to the SOS Social Centre Ennerdale holding hands, singing and wearing stickers, which said, "My friend with AIDS is still my friend".
On arrival at the social centre a full programme to launch the HIV/AIDS Support Group started. The first speaker was a local pastor who defined love in relation to HIV/AIDS. He said LOVE stood for:
L Listen to the cry/needs of the people
O Overlook their faults
V Value the person and see their potential, and
E Embrace them. Hug those infected.
The resident nurse of the SOS Clinic Ennerdale, Sister Verina, said: "Feel free. Be free." She emphasised in her speech that the social centre belongs to the community, and that the clinic caters for everyone. Verina explained the programmes the social centre ran and invited all to feel free to join in.
Mama Rose is a mother and grandmother with the virus. She heads a locally founded organisation called "Let Us Grow", as well as being a delegate for the World Summit where she challenged the United Nations on the requirements for people living with AIDS. At the launch Mama Rose gave a talk on motivation and encouragement. "This virus is not a death sentence. We have to fight the 'monster'," she said. "I have been living with HIV for ten years and to survive you have to be strong, believe in yourself, don't go into denial and most importantly, get support." She highlighted the need to eat healthy with lots of fresh fruit and vegetables. To great applause Mama Rose ended, "I am not ashamed of my virus anymore. You have to learn to talk about it or you go down. Talking about it keeps you healthy. If we stop discriminating then things will go well!"
Next on the agenda was Mrs Thukwane on the role of clinics on support and care. She emphasised the need for NGO's and the health department to work together. "We are all in this fight and we need to have one goal," she said.
"You killed our mother. You and that disease, HIV/AIDS," shouted Thandi to her sister Lerato.
"We have been kicked out of church and even our neighbours avoid us," cried Thandi.
"I will be there to help you every step of the way," comforted Thandi's boyfriend Jabu to her sister Lerato.
"Why did I have to find help and comfort from strangers? Why did my family not help me?" was the heartfelt questioning from HIV positive Lerato.
These profound statements, among many others, were made in a play hosted by the SOS youth drama group. The play called "When I speak out, I get emotionally healed" was performed for the first time at the HIV/AIDS Support Group launch. The group is made up of eight teenagers who practice their drama every afternoon. They use art, drama and awareness campaigns to make a difference in the HIV/AIDS area. They go to schools, church meetings, old age homes, youth socials, and anywhere else they are invited with a new play/campaign targeted for the audience they are performing for.
Phuleng has been living with HIV for five years. She found out she was HIV positive in 1998 when she fell pregnant. "I denied the disease, but after two years I began to lose weight and get ulcers. I coughed continuously and the smell of food or perfume would make me vomit," she said. "One day I was standing in the shack and I asked my mom to call an ambulance to take me to hospital to die. I did not want to see anyone at the hospital. I wanted to kill myself. I was a skeleton at 28 years-of-age."
Phuleng did not want to tell her mother about her status because she felt she would be rejected. As it was, she was given a separate plastic cup and plate to eat and drink out of after she was diagnosed with Tuberculosis (TB), which is a side effect of having HIV due to a weakened immune system. "I was bedridden for eight months and developed bedsores. It was then that I decided enough was enough. I had children to look after. I dragged myself out of bed and went outside." This was a major turning point for Phuleng. She is now taking her treatment, living positively and healthy, and in her own words says, "There is nothing wrong." Rita, a young mother of four, publicly disclosed her status at the launch. "You can get HIV anywhere, anytime. It's important to help the person infected. Don't break them down, it might one day be you?"
"My younger brother's love seemed to disappear. He wouldn't talk to me. He rejected me," sobbed Joyce. "I am deeply hurt because he is very special to me. I still love him though." Joyce knows that she is going to live with the HIV virus until she dies. She has seen other family members die from it. She proudly stood up at the launch and said, "Please don't discriminate, it hurts." Joyce does not stay at home because she is afraid of what her community will do to her. One afternoon on the way back from the hospital after receiving her treatment a group of men beat her and stole her cell phone because they knew she was HIV positive. Joyce, however, refuses to give up: "My life must go on. You need to tell yourself that you are going to live and you will," she finished. The afternoon of the launch ended with free voluntary HIV tests for the first five brave people. The theme, "I know my status and you?" was the thought left for all participants to take home.
Brenda Dimbleby is SOS co-worker at communications in South Africa.
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