This picture was taken on a visit to the Treatment Action Campaign office in Johannesburg. I had expected to meet two people to photograph and interview, but twenty-four turned up and all wanted to be included in the project. We decided to make a group portrait of everyone who was in the room, with their statements written onto signs so as not to exclude anyone.
Nobuhle Nunwana, 26. Not on treatment.
“The message I want to give people who are HIV-positive is this: Don’t worry, we are like other people. The doctor says I have TB and the virus is getting to me,” Nobuhle Nunwana.“I wish our leaders would listen to our appeal that we need treatment. Otherwise there is no future in South Africa, because our youth are the ones who are affected. As for Nobuhle, I hope she is going to be given the treatment, although I’m not sure she will because there are such big numbers of young people suffering from HIV and AIDS. I want Nobuhle to be strong. She has self-esteem, she doesn’t hide her status and, you know, she’s bold and strong. We are still looking forward to having her life back,” Mama Dalina, Nobuhle’s aunt.Lost City, Mitchells Plain, Cape Town
The family of Ncane Surprise Xulu, 31, in the room where they had cared for her. Ncane, who had not been able to access treatment, had agreed to be part of this project. She died shortly before I arrived.
“My sister was this girl who liked to talk. She had so many friends because she was open. She really loved her daughter, loved her family. She was a smart girl. That’s all I can say, she was smart. She was a girl who liked to go out, but when she was sick she was in bed with nothing to do.“Just before she died they told me she had thrush in her mouth. She wasn’t able to open her mouth because there were some sores. She didn’t even swallow water, because if she swallowed water you could see in her face that she was feeling pain,” Thulani Xulu, Ncane’s brother, speaking at her funeral.Umlazi, Durban
Gugu Mpungose, 34. She had just begun treatment.
“I decided to be open with my status when I saw people dying in my location where I stay at Kwa Mashu. People were dying left and right but they did not say what it is all about. When I discovered that I was HIV-positive I was seven months pregnant. When I told my boyfriend that I’m HIV-positive he ran away from me.“I got the drug Nevirapine twice, which helps us HIV-positive mothers as it prevents transmission of the infection from mother to child. But it is not 100 percent guaranteed. When my child was 14 months old he was tested and he was diagnosed HIV-positive, but I’m supposed to confirm that test, as he might still convert and be negative. He is healthy and always happy and shows no signs of being HIV-positive so I am still very hopeful. But I am scared to do that test while there is no treatment for him.“My dream is to see myself having a job, driving a nice car, in a beautiful house with my family and see my baby graduating from university. And seeing other people who are living with HIV and AIDS getting treatment and for those who don’t have HIV to stay HIV-negative.”Kwa Mashu, Durban
Matshaidiso Madondo, 29. Not on treatment.
“My husband died in October. He was sick all the time. He was coughing too much, he was vomiting blood. Everything was painful. I don’t have two cents or five cents from my husband. Last November, I discovered I am HIV-positive. After I lost him, his parents chased me out. I stay with my mother and father and family, so my family supports me. I need medication, because I want to live with my children.“‘Be strong with your status!’, I tell everyone. I comfort everyone, and if someone is sick I say, ‘I am with you, go to the doctor’. If you are positive tell everyone. If not, just keep quiet – but know your status.”Orange Farm Squatter Camp
Sindi Sonya Ngidi, 22. On treatment.
“Yesterday was my first time going to a funeral for an activist from the Treatment Action Campaign. I had to carry a coffin for the first time. I was very scared. I was just shaking, but I had to carry it because she was one of us. The funeral was very sad. I just imagined, what if it was me lying in that coffin because I hadn’t got access to the drugs. How would my family take it? I felt like crying. But I told myself I had to be strong for her because she was fighting for others to get treatment.“After I had taken the drugs, they seemed very, very toxic, because sometimes if I took them I’d vomit. And I’d take them again in the evening and it would be just like that—until I got used to them. But now, I feel very, very much better. I don’t have anything. I don’t have any problems.”Umlazi, Durban
Buyiswa Gcwaba, 42. She died on 8th October, 2003, just as she was starting treatment. It had sadly come too late.
“It is very sore because I don’t know when I am going to pass away and who is going to look after the children. Everybody knows about me because I don’t put HIV under the table, I put it on the table. Even the children – they know. I am HIV-positive and it’s not going to help me to hide that. I understand there are these antiretroviral drugs. Some people have them and their health is alright. But unfortunately for me I haven’t got even two cents to buy that medication. I know they work. I know of another lady who was using them. She is perfect – she is living a normal life.”Lost City, Mitchells Plain, Cape Town
Veronica Mgumame, 34. Not on treatment.
“When I got sick in 1996 I went to the clinic and found I had TB. I finished my treatment and then in 2000 my boyfriend got sick with TB and I got it again. After that I had shingles on my body, and the clinic asked me to take an HIV test. They found I am HIV-positive.“Here we have a problem. We don’t get the treatment. Here we are just dying The antiretrovirals don’t cure HIV/AIDS but they make it slow down. They give you time to live. I want to have antiretrovirals, too, because I feel sick. I am a member of the Treatment Action Campaign. I went on a workshop and I saw lots of people who use the drugs – they were healthy and they were fit. I want to say to the government, ‘You must sign the treatment so all of us can get it – because we are all going to die if you do not’.”Lost City, Mitchells Plain, Cape Town
Thobani Ncapayi, 31. On treatment.
“When the Médecins Sans Frontières (MSF) pilot project came along in Khayelitsha in 2001, I was the first patient on the waiting list for antiretroviral treatment. I started on July 11th, 2001. The nurses at MSF told me that if I took my antiretrovirals on time, everything would be all right. In the morning I take my pills by eight o’clock and then in the evening I take them again at eight o’clock. There should be 12 hours in between each dose.“Now I feel like everybody else. I am not thinking all the time about HIV. I do not bury my dreams. When I first heard I was HIV-positive, there was no one educating others about HIV and AIDS. Even at the clinics no one knew about the disease. So I just went back into my bed and waited to pass away.“When I see people who live with HIV and AIDS without antiretrovirals, I feel guilty. I know that I have been so lucky to live in Khayelitsha where there is a pilot project for antiretrovirals. I often think that two years ago I could not speak or stand or wash myself. Now I have a small stall selling fruit and vegetables.”Khayelitsha, Cape Town
Anonymous mother. Not on treatment.
“This is not politics. This is our life. I am HIV-positive and I have two kids, both HIV-positive. My husband died in 2000. I have a name and surname, but I can’t tell you because of discrimination. I want you to know the way I feel about our situation. I need help. I need you to know that we need you to love us. Support us.“I have a dream. I want to live with my kids in a house. I want to do anything I can to give them whatever they want—love, a house, warmth. My son said: ‘Mama I don’t want to die, because I love you and I love my brother and you will see that some day I will be a doctor.’“Mr. President, I want you to know my feelings. My kids are suffering and I am suffering too. So please give us antiretroviral virus drugs because this is not politics, this is our life. We are fighting for our life.”Sharpeville
The family of Ncane Surprise Xulu, 31, in the room where they had cared for her. Ncane, who had not been able to access treatment, had agreed to be part of this project. She died shortly before I arrived. This was her funeral.
“She was everything to me. She went to do a blood test. She came back with the results saying she was HIV-positive, and I accepted that. I stayed with her and loved her even though she was HIV-positive. I stayed with her until she got very, very sick and she died. Now I’m left with her daughter. I am going to take care of her. I think I will take her and do the blood test. Maybe she also will have HIV-positive status. If anything happens, I will try and give her the best that I can because I love her,” Ncane’s mother.Umlazi, Durban
The funeral of Khanyisa Mhizana Eugenia, 15.
“When Khanyisa’s mother told me her five-year-old daughter was HIV-positive, it scared me. At that time I didn’t know much about this illness and, as the principal of her school, I felt responsible for all the other students. I immediately consulted a doctor and she explained to me that there was no danger and that the girl should be treated like any other child.“Khanyisa didn’t show any symptom of her illness until she was ten. She liked singing and she always wanted to stand in the front row of the school’s choir. One day, the conductor of the choir came to me and told me the girl was losing her voice. I feared it was the beginning of her decline. Gradually, Kanyisa got sicker and sicker. Her body stopped growing and she became very weak, but she didn’t want to stay home.“Sometimes, during the winter, she came to school but she refused to do anything. She just sat underneath a desk where it was warmer and hid there for hours. By the time she was 12 years old, Khanyisa’s health was so bad that she was forced to stay in bed for months in a row. Every time she came back to school, though, she wanted us to assess the work she had done and give her some feedback. A few weeks before she died, Khanyisa requested that at her funeral mourners do not throw soil into her grave, but throw red AIDS ribbons instead.“The last time I saw her she was in hospital. I went to visit her with some teachers and we brought her the colored well-wishing cards her classmates had drawn for her. She could barely speak, but with a thin voice she asked us if we could sing her one of the songs she used to sing with the choir. Before leaving, we decorated her room with the well-wishing cards and we promised her we would come back soon with some of her friends from school. But few days later, her sister came to school and told us Kanyisa had passed away,” Khanyisa’s primary school principal.Gugelethu, Cape Town