There is a veil of secrecy over the Lacey Road informal settlement in Sydenham, Durban: a purdah stitched with denialism and stigma, which home-based careÂgiver Bongi Hlongwa (24) believes is hampering the fight against HIV/Aids in this community of more than 500 people.
‘I’m caring for 10 people, of which only one has admitted to me that she is HIV-positive and is taking [antiretrovirals] ARVs. People say they have TB, or talk of muthi, but not Aids,†says Hlongwa. ‘If people can come out and admit they have Aids then it would make my work so much easier. If people don’t admit it to themselves it’s harder for us to help,†she adds.
Nevertheless, Hlongwa — who has two years’ experience as a caregiver — continues to visit homes where people suffer under the euphemistic vagueness of ‘being sickâ€.
The reticence to discuss HIV/Aids in this community is palpable. Rose Zulu* (58), who lives alone and is helped by caregivers and neighbours, points to her swollen feet and legs: ‘My bones are always paining, I can try and walk but not freely and for the past two and a half months I’m always sleeping,†she says, adding that the doctor has given her medication for the pain. When pressed further on the doctor’s diagnosis she becomes taciturn: ‘Ayike! I told you I have arthritis already, why are you asking me again?â€
Mdu Hlongwa, Bongi’s brother, who coordinates the three volunteers in the settlement, says he feels that Zulu’s fluctuating health and weight cannot be attributed solely to arthritis. ‘I don’t know if she is HIV-positive, but about two months ago her health was so bad, and she was so weak, that she was almost in a coma, and we had to call the ambulance. Some people, even after they have been to the hospital for tests, won’t disclose, but you can see the symptoms,†he says.
Calling ambulances in the dead of night is something that Bongi Hlongwa is getting used to. As is the spectre of death. Bongi — cheerful and vibrant — says four of her patients died last year. When pressed on how that affected her, she shrugs: ‘It’s hard, very hard. But we try to console the families and for me, I don’t really suffer depression because I know that some of them will die because they are not on ARVs.â€
Bongi, who is unemployed and attempting to complete her matric so that she can fulfil her ‘calling†as a nurse, has found herself caring more and more for orphans.
Her day starts at her own mjondolo, which she shares with her mother and three siblings. After cleaning her home, washing clothes and eating breakfast, she starts with the orphans, who range in age from four to 16. ‘We talk, play if they want to play and I will check later with the older ones when they come from school about their homework,†she says. Every Monday, Wednesday and Friday, she heads to the three households where the adults are ill. She fetches water, cooks if there is food or tries ‘to make a plan†if there isn’t, cleans the home and where patients are critical and too weak to move from their beds, changes their nappies.
‘The biggest problem is the shortage of gloves for us and nappies for the patients,†says Bongi.
‘If a patient is critical we visit them daily, we make sure they are taking their medication and if they don’t have any we go to the hospital or clinic to fill the prescriptions,†says Mdu. He is one of the 22% of caregivers in the country who are male, according to a Population Council-implemented Horizons Programme study from 2004.
The study also revealed that 6% of the households visited by volunteers had no source of income, while 30% to 50% relied on pension grants and 28% to 36% on child, foster-care and disability grants. A Centre for Municipal Research and Advice study last year found that ‘increasing financial risks†for volunteers were a concern.
‘I’m looking for a job, but if a patient needs money for food, or needs to borrow something, I give it. If I have headache pills and they need them, I give,†says Bongi, a volunteer who receives a R300 stipend for essentials from the Kennedy Road Drop-in Centre, .
The efforts to combat the spread of HIV/Aids and convince people that it is a disease that can be lived with is harder in mjondolo settlements, with little or no infrastructure. From the patients’ basic comfort to ensuring they take medication timeously, the challenges are exacerbated by a lack of running water, the squalor, high unemployment and poverty, which affect everything from grocery shopping and regular meals before medication to transport for check-ups.
But Mdu asserts that the battle to shift paradigms remains one of the most difficult: ‘We’ve staged plays about HIV/Aids, we’ve organised music groups to tell people about this disease but they still don’t want to act.
‘We try to tell them that there is voluntary testing and counselling available for all of us. If you find out that you are HIV-positive, then the gates actually open for you. You can get medical attention. But if you are not tested, or deny your status, then this virus takes you slowly, slowly,†says Mdu.
He points out a healthy and bubbly 10-year-old girl, Nozipho*, playing with a gaggle of others in the dirt: ‘Her mother died in front of me last year. She wasn’t disclosing until her last days on her sickbed when she admitted that she was HIV-positive.â€
Nozipho and her sister, Zama* (15), ,now live with her aunt, Nompilo*, and her four children. Mdu says Nozipho was raped last year by an HIV-positive man who is awaiting trial — something not many here feel comfortable discussing. Doctors confirmed that Nozipho contracted HIV after the rape.
Later we speak to Nompilo, Nozipho’s aunt. The words that her sister died last year from Aids-related illnesses are unable to leave her mouth. Her face crumples and she eventually nods a confirmation. About Nompilo’s assault she is again unable to talk. Finally, shamefaced, she says her niece has had HIV for a long time, from her mother.
* Not their real names