Cecile is 33. He left school after failing his matric exam, and is now unemployed. He was diagnosed as HIV positive after being “attacked by TB” in 2000. At first he denied the results – “I did not tell anybody”. But after a second test he joined a support group where he made friends who “made me very strong” and encouraged him to disclose his HIV status.
Cecile first heard of Khululeka in a local newspaper. He found it different from the other support groups he had joined, which were”a mix of too many people, which causes divisions”. Someone at Khululeka motivated him to take antiretrovirals: “he saved me from death”.
Now he urges others not to discriminate against people with HIV. He says the group teaches “self respect… and discipline”. In the future he “would like to see Khululeka working as a hospice, that is helping those men who cannot care for themselves”.
I was born here in Cape Town on the 2nd February 1973. As a child I was naughty most of the time. I liked to cheat on other kids, hit them when playing with them. I liked stealing sugar and small things like loose change in the household… I liked to swim and to play with roller blades and play hide and seek with the other kids.
I have four sisters from my father’s marriage. My mother was not married to my father so I’m her only child. Me and my sisters know each other very well; even when I got sick they were very close to me and when I was in hospital they came to visit me.
My mother passed away. I have only my father. The relationship with him is good. We see each other but there is nothing I expect from him, because he is not working. He is the type of person that helps himself. I do go to him when I’m having a problem.
I started my learning here in Cape Town. My life at school was very fast. I used to like to do things that were out of line… to chat up girls, drink liquor and enjoy myself too much. I studied until I failed my matric.
When I failed my matric in 1992 I went to my uncle in Johannesberg – my father’s younger brother. I got a job in the mine company called GFC. There I worked as a labourer, digging down the mine.
I’m not working [now]. I get financial assistance from the government, and some cash by buying watches and selling them. I’m a hawker. I get a lot of assistance from my family in as much when the government grant is used up, they help me a lot with things like food, and when my shoes are getting old they buy new ones.
My first date? I was very crazy in as much I didn’t want to listen to what they were saying at home. I was so crazy – I didn’t listen when they were telling me about my date, and I used to come home very late which was not accepted at home. I’m not in love with my first date anymore; we parted ways and I’m changing my ways.
The relationship I’m having now is the type of relationship that is associated with my HIV-positive status. The first relationship was over before I knew my status. [I’ve had] plus or minus 25 relationships. I do have children; both boys. They are from different mothers. The older one is 14 and younger one is 7.
I’m not married. I met my partner in the support group after I tested positive. My relationship with her is a very good one because she is a caring person, even when I’m having a problem.
I don’t belong to any congregation. I’m involved in the Social Club Khululeka. In my spare time I watch movies and soccer on TV with my friends or my girlfriend… I’m not drinking – ever since I got sick I realised that drinking is not good for my health and that it doesn’t solve any problems.
‘Meeting my friends made me very strong’
I heard that I’m HIV positive in 2000. I was attacked by TB in 2000 and admitted to Santa Hospital. The sister there told me that TB is mostly attacking HIV/AIDS patients, so she advised me to get a test. I tested and the results came out positive… I denied the results. I did not tell anybody, until at the end of 2001, here in Cape Town, I decided to have another test in the clinic at Guguletu.
Again the results came out positive. [Then] I made friends with the doctors and nurses, because I was treating the TB after I came back from Kokstad. I joined the support group and met my friends, who were volunteering for TAC. Meeting my friends made me very strong… my friends are open about their status… my girlfriend is living the positive life as I do.
It was very difficult [to disclose my status] at first but as I was attending the support group things became easier, and I have found out that HIV is not only affecting those infected, but the country as a whole.
I am on ARV treatment. I started taking it on October 2003. There were no complications with the ARVs. I was introduced by a streetmate to Phumzile Nywagi who is also the coordinator for Khululeka; he motivated me to take these ARVs. He saved me from death.
Unity rather than division
I [joined when I] found out that Khululeka is a male support group, so I can voice my problems, and that members of Khululeka are like parents; they are responsible citizens.
The difference [with TAC and J L Zwane] is very big because these two support groups I used to be in before were a mix of too many people, which causes some division into different groups. So the divisions among us were affecting the support groups, and meant you didn’t feel comfortable voicing your problems.
I knew about Khululeka through seeing it in a local newspaper, City Vision.They were burying another man from KTC who was positive and out from jail. Khululeka didn’t know this gentleman; they organised his funeral with the funeral parlour by the name of Dove, who promised to sponsor them with the funds to bury him.
In the photo in City Vision were their members – members that I know like Phumzile who helped me, Mxolisi, Vuyisile and Nkosinathi. They motivated me to join this support group…
Men are shy
Phumzile Nywagi, together with Professor Stevens, formed Khululeka. When Phumzile came up with this idea of forming a support group he was working in Lusikisiki with Professor Stevens. He started with eight men in Guguletu.
The reason why he started it with men is because he could men dying of HIV/AIDS in large numbers and saw that men were scarce in support groups; the majority was women.
Men are very shy. I would like to see Khululeka working as a hospice, helping those men who cannot care for themselves, washing them, cutting their hair and nails, and feeding them. The people that are doing that job must at least be paid volunteers.
Khululeka does open air education, home-based visits and hospital visits, helping those who cannot care for themselves; some of them just need massage.
The importance of self-respect
The support I can give to people who have recently tested positive is that they should stop differentiating people with HIV. They must seek to know more about HIV by testing and knowing their status, in order to decrease the spread of HIV. We teach [people to have] respect, self-respect, when you are living positive life and also we teach each other discipline.
This interview has been specially edited for the web and cut down by more than half. Some re-ordering has taken place: square brackets indicate ‘inserted’ text for clarification; round brackets are translations / interpretations; and dots indicate cuts in the text. The primary aim throughout has been to remain true to the spirit of the interview, while losing questions, repetition, and confusing or overlapping sections. Extracts from these interviews also appear under the key topics; these extracts pull together relevant comments and in a few cases include sentences that have been re-ordered or cut from the edits.