Thembelihle is a little girl growing up in rural KwaZulu-Natal. She is not the type of girl who will one day skip happily through the fields of her forefathers. In fact she might never walk at all. Thembelihle is severely disabled as a result of her premature birth. She spends most of her days lying on the couch in a little cottage that her foster mom occupies. Maybe she is looking at her surroundings, maybe she is studying a little spider web at the top of the roof, but how much she perceives is a secret to us all. Thembelihle is 3 years old and maybe she is proud, now that she can at least hold her own head. In some ways she is lucky. Unlike other orphans she has found a home and a caring foster mom, who does everything to develop her little muscles. Her foster mom sings for her while doing her physiotherapeutic exercises. It is this singing that she enjoys the most.
This Thesis was dedicated to Thembelihle as her case reflects the story of HIV/AIDS in KwaZulu-Natal and possibly in South Africa. Neither Thembelihle nor her mother were ever given a fair chance in life. Thembelihle´s grandmother died of an AIDS related disease leaving Thembelihle’s mother behind at the age of twelve or thirteen. Left all on her own, Thembelihle´s mother had to look after herself and her siblings. Life must have been tough for these children and particularly for Thembelihle’s mother, who was no more than a child herself and the head of the household at the same time. What chance did she have and how was she supposed to support herself and her siblings? It was probably then that men took advantage of the girl and infected her with HIV. A further result of the abuse was that she soon became pregnant with Thembelihle. At this time Thembelihle´s mother was already growing weak as a result of the virus and malnutrition. She gave birth to Thembelihle when she was only just in the sevens month of her pregnancy. The father of her child was nowhere to be seen. She died three days later at the age of fourteen. Her baby was left in a pit latrine near the hospital. There, Thembelihle was found and later brought to the orphanage, where she now lives. At first it did not look as if she would survive for very long; her immune system was very weak as a result of the HIV infection. The people at the orphanage took good care of her and soon her condition improved. It was here at the orphanage that she found hope, despite the fact that the severe disability and the HIV infection will persist to be a burden for the rest of her life.
The story of Thembelihle, in closing this thesis, provides an ethical as well as personal reflection. Qualitative research is usually chosen to avoid the reduction of the respondents to the status of an object (David and Sutton, 2004). The researcher will try to present the ´respondents´ story from ´their (respondents) point of view´. This however, as Becker argues, will often be taken as advocating rather than simply representing the topic (Becker 1967, p. 240). In the case of researching two phenomena, disability and HIV/AIDS, which are both highly stigmatised, it was not possible to be completely free of bias. This thesis is therefore written to give people with disability a voice and an opportunity to bring their case forward. It is also a critical reflection of society in KwaZulu-Natal. The attempt was made to understand this society from within, in other words from an emic perspective, without compromising basic ethical standards and personal values. The thesis might not always reflect popular opinion in KwaZulu-Natal. Nevertheless it reflects the ´truth´ as it was told by my participants and the experiences I had during three years of research. While as a qualitative contribution this thesis might be accused of bias in favour of those that were researched73 (Hammersley 2000), the research was however conducted as objectively as possible and the results have been presented in a truthful way.
Thembelihle´s story is true. Even though we might not like it, her story is not a rare case but a representation of the destruction within KZN’s society. It has to remind us that we have not done enough to change our world for the better and that the struggle in South Africa is far from over. It also needs to reinforce in us, that besides all the obstacles, there is hope and that this hope lies within the African community itself. It lies within all those people, of whatever race and nationality, that open their eyes and hearts and are prepared to change themselves and give a chance to others. The old African “gogo”74 can be heard saying that “ubuntu75 is dead”, but maybe this old African way of life needs a modern revival in the hearts of all South Africans.
72 Name has been changed to protect Thembelihle’s identity. Thembe means hope in Zulu.
73 I refer here to people with disability and not to people in KwaZulu-Natal in general.
74 Gogo – Zulu for an old woman or granny
75 Zulu saying for helping, respecting and supporting each other.
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