Mapping souls

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The outlines, before they have been filled in and fleshed out with bursts of colour and text are reminiscent of chalk drawings at a crime scene.

But the life-sized body tracings of the 13 HIV-positive members of the Bambanani Women’s Group are not about ‘absence’. They are about lives, loves and losses of the women who participated in a unique therapeutic process.

The Bambanani Group grew from the Memory Box Project, an outreach programme in Khayelitsha that helps HIV positive people come to terms with their diagnosis, communicate with their families and prepare for the future

Memory Box staff later began a collaborative project with Medecins Sans Frontieres (MSF) in which boxes and books are used as research tools to document the stories of HIV positive people receiving anti-retroviral medication at the MSF clinic.

Participants, using recycled materials and photographs, fashion a box and a book that details their personal narratives.

The memory books and boxes are a therapeutic way for people living with HIV and AIDS to prepare for death and are used later for bereavement work and for creating a personal legacy for loved ones.

However, because HIV is a chronic but manageable condition and should not be seen as a death sentence, memory boxes and books are also used to explore political issues such as treatment access and to investigate personal issues with regard to living with the virus.

Psychologist Jonathan Morgan, who heads of the Memory Box Project at the University of Cape Town, explains how the project was transformed into a book: ‘We noticed that people we worked with were facing the future more than the past. Life more than death. Out of a larger group who had begun to sketch their stories and dreams of a longer life in their own handcrafted memory books and boxes, we invited those who wanted to, to tell their stories more publicly. This was the beginning of the book,’ he says.

The artworks are now collected in a book titled ‘Long Life.. positive HIV Stories’ (Double Storey, R185.00) and launched in Cape Town on Saturday.

Woven through the narratives of the Bambanani women’s group are the stories of tireless healthcare workers and campaigners in the community. The body maps were originally viewed as an alternative method for people to tell their stories and deal with issues relating to their HI status. But the painting exercises evolved into a research tool, which helped participants to sketch, paint and find words for their inner landscapes. The women were also given cameras to record and reflect their personal their lives, bringing an intimate perspective to the project.

University of Cape Town Vice-Chancellor Professor Njabulo Ndebele hails ‘the gutsy narratives and participatory research’ as a powerful cry for reason and compassion in the time of AIDS.

Bambanani means to support each other, to lend hands. The women describe why they ‘made’ the book dedicated to a fellow member, Xoliswa, who died before it was completed: ‘We are making this book because we want to teach people living with HIV how to live with HIV. And to also teach those who are not living with it how to survive. And to let people know that we positive people are getting a treatment to help us live longer.’

One of the women who shared her story and whose body map is featured in the book is Babalwa Cekiso. Using earthy colours ‘ greens and browns ‘ Cekiso’s life as an activist is a central theme.

‘I live and work as a Treatment Action Committee (TAC) volunteer in Khayelitsha. One day I saw this white guy hanging photos and huge body maps on the walls of the Mew Way Recreation Hall. I looked at these photos ‘ of my doctor, Themba (MSF doctor Hermann Reuter), of the streets of Khayelitsha and of people taking their medicines ‘ and I looked at the body maps, and then I went up to the guy and said, ‘I really like this work, but who are these people in the photos? Why are they hiding their faces?’

Babalwa, who is HIV positive, says she felt that those who were on the MSF treatment proramme were lucky and that they should not hide their faces. She approached Jonathan and he offered her a job.

‘When I look at this body map I feel like my life is not finished. I feel good actually, explaining how I feel inside, certain feelings and memories that I don’t normally talk about,’ Babalwa explains.

She says she drew her heart because it aches for all those who have died of the virus.

‘There is a mountain on my shoulder. It reminds me that I am strong, that every day brings new hope and meaning. My shoulders are where my strength comes from. We all carry stuff on our backs and heads, but our shoulders support us,’ she says.

Babalwa chose to draw a male face because ‘I see myself as a strong person. I have to fulfill the role of both sexes as I am a single mother raising two children on my own.’

Another Bambanani member, Nondumiso Hlwele, explains that her body map is about how ARVs gave her new life.

‘On my picture I drew the virus ‘ it’s the small blue dot. The white is my blood. The red circles are the ARVs eating the virus, and the virus is going down. The ARVs are strong. I have been on ARVs for five months now. It’s changed a lot since the first month when I took them. By the second month I was well. It’s amazing.’

Member Nomawethu’s (who preferred not to reveal her second name) body map is the first to feature in the book and also one of the most colourful.

‘I wrote Mount Fletcher on my painting because I want to tell the people I come from there. I’m proud of my province. I was born here in Cape Town but I was grown in Eastern Cape. I went there when I was ten and I learned many things there, like how to cook with wood and how to fetch the wood in the forest.’

She explains that the scar she drew on her foot was an injury she sustained as a child.

‘I was eight years. I was playing with the tennis ball in front of the shack and there is a zinc there in the door. We lived in Sisulu Street and most of the houses had walls and roofs of zinc which some people call the corrugated iron. As soon as I start to play the zinc in our door cut me on my foot. I was bleeding and my mother took me to the clinic and they make a stitch. It was very painful.’

She says she drew flames around her heart to reflect the pain of her sister’s suicide in 1998.

‘She drank some paraffin spirits and threw a match and caught alight. Then she died in Jooste. I saw her there in hospital. Her mouth was gone and her breasts. She did try talk to me and say you must look after my child. Then she died. I can’t forget that. It was because her husband was with another woman. He died last year of this HIV illness.’

At the time of writing Nomawethu’s CD4 count was high enough not to warrant ARV treatment.

‘I put the light blue colour and the white dots. It means now I’m sometimes feeling well because I’m going to the doctor and the doctor looks after me fortunately. White dots means I’m healthy and when I’m standing I look like I’m so happy with my hands up and my feet on the snake. In my opinion the virus look like a snake. You can’t see it and it’s moving in the secret ways and the dark ways. I make the virus look like that because with AIDS many people are dying and you can’t point to the people who have the virus.’

The Bambanani project and the resultant book serve as a platform for people living with HIV/AIDS to challenge existing fears and stigma. It also demystifies ARV treatment at a time when government is about to roll out a national programme.

E-mail Anso Thom

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