This thesis is not only the work of a three-year PhD1 study, but it is also the culmination of a chapter in my personal development that started almost 14 years ago. In 1995 I had my first intense encounter with Zulu speaking people when I worked as a volunteer in a mother and child project in Marianhill, outside Durban. I have always been interested in the cultural and spiritual aspects of African society, but following my experiences I developed a specific interest in KwaZulu-Natal. Having spent most of my adult life working with children with special needs in Germany, I noticed that the understanding of disability in an African context differs from the interpretation of the phenomenon in Europe. During this time HIV/AIDS2 has become a serious epidemic in South Africa and especially here in KwaZulu-Natal. AIDS researchers moved quickly to study the disabling effects of HIV/AIDS on previously healthy people, however it has taken a long time for research to acknowledge that people with disability are also at risk to HIV infection. It soon became apparent that the phenomenon of disability is largely mystified in South Africa, which has left space for a tremendous amount of interpretation. In the context of HIV/AIDS for instance, people used to believe that people with disability are not sexually active and therefore don’t need sexual education. Furthermore HIV/AIDS awareness programmes were often ineffective at a local level, as they were designed by outside experts who were ignorant of local realities and who were seldom aware of the particular problems of disabilities (Dube, 2004). As a result little effort was taken to adapt awareness programmes for the needs of disabled people. This ignorance denied people with disabilities the necessary education and therefore placed them at risk of exposure to infections. In recent years, however, attention has been drawn to the fact that HIV/AIDS awareness programmes also need to incorporate disabled people (Groce, 2004).
The lack of sexual education and exposure to sexually related topics was not however the only problem. It almost appeared as if people with disabilities were especially vulnerable to HIV/AIDS, but nobody really knew to what extent and why. The cultural interpretation of disability seemed somehow to play a role. I therefore started to become interested in the hidden meanings and the conceptualisation of disability. Encouraged by both friends and family, I started to research the field and discovered that there was a need for further knowledge and that it would be a good base for a dissertation.
While I found an abundance of literature on HIV/AIDS there was no work available that explored the connection between concepts of disability and HIV infection in KwaZulu-Natal. In fact there was hardly any literature on the cultural meaning of disability in KwaZulu-Natal at all. Motivated to unwrap the link between the two I started to work on this thesis.
This thesis is essentially an attempt to understand the cultural roots of non-medical representations of disability in KwaZulu-Natal. It is argued that these representations affect the way in which people are prone to think about and respond to disabled people and which ultimately affects the degree to which a person is exposed to HIV-infection risks.
Scientists, who turn their professional attention and research activities to disability, start with the understanding that disability is more than a simple medical problem. It is also a cultural construction (Üstün et al., 2001;Dederich, 2007). Disability from an anthropological perspective is heavily laden with meanings that shift, expand and change. This thesis is an attempt to elucidate some of the associations attached to the cultural construction of disability among people in KwaZulu-Natal, many of whom are Zulu speaking. It sets out to understand the words, images, ideologies, myths and the metaphors that people associate with disability.
This study is essentially about conceptualisations of disability and HIV/AIDS. During the pre-research process two key questions crystallised out of the already available material.
My argument is that the cultural construction of disability and the living conditions people with disability face in KwaZulu-Natal puts them at high risk of infection with HIV. I argue in part, that people with disability appear neither to get appropriate sexual education nor sufficient support to protect themselves against HIV and AIDS. Disability is still mystified with notions that often lead to misinterpretation and discrimination. On the one hand this thesis attempts to ‘unwrap’ the world of disability and its connection to HIV/AIDS through:
On the other hand I will try to show that the empowerment of people with disabilities or their relatives changes their position in life. People with disability in KwaZulu-Natal have already created a system, called Community Based Rehabilitation (CBR), to support themselves. This community-based system should receive greater support from the official governing structures, especially financially, so that more support staff could be made available. This in itself would help to empower people with disability and with this decrease their exposure to HIV.
This thesis is divided into three parts. The first part introduces the reader to the context of this thesis. The second part deals with the conceptualisation of disability while the third part looks into the phenomenon of HIV/AIDS and its relation to disability.
Part I consists of chapters 1, 2 & 3. Chapter 1 provides the reader with some basic information about the thesis, while chapter 2 gives a general review of the current literature relevant to this thesis. As an anthropological contribution this thesis draws upon several different bodies of literature and follows an interdisciplinary approach. Chapter 3 discusses relevant methodological approaches and describes the research design for the fieldwork and the analytical work.
The parts thereafter will look at the construction of disability and HIV/AIDS from a macrocultural, microcultural and individual level (McElroy and Jezewski, 2000). This is necessary as both phenomenon are medical as well as socially constructed and this construction needs to be analysed on different levels of society.
Part II consists of chapters 4 & 5 and explores the phenomenon of disability in detail. Chapter 4 explores the macrocultural level and introduces the reader to the study site of KwaZulu-Natal. It provides an overview of the local culture and its historical roots; it explores the problems of finding an African identity in the 21st century and its effects on people in general as well as the immense gender imbalance that is still apparent in KwaZulu-Natal. The chapter also reflects on some facts and figures concerning disability in the province, in particular to clarify living conditions of people with disability. This is necessary to make the reader understand the setting that surrounds disability and HIV/AIDS in KwaZulu-Natal. Chapter 5 looks more into the microcultural and individual level of the disability experience and describes concepts of diseases and disabilities as found in the local culture. Thought patterns relevant to the way people view disabilities are also discussed. It explores the notions of supernatural (spiritual) and natural (body related) causes of disabilities. It also explains the strengthening effects of ancestral worship and a balanced lifestyle as well as the weakening effects of ´pollution´. In addition it is explained what role the interpretation process of disability plays in the treatment and inclusion or exclusion of people with disability, the denial of exposure to education and the mystifying of disability.
Part III of the thesis, consists of chapters 6 and 7, which explore the phenomenon of disability and its connection to HIV/AIDS based on the research results. Macroculturally chapter 6 deals with some facts and figures on HIV/AIDS in South Africa as well as with the historical development of and the government response to the epidemic. On a microcultural level a large part of the chapter looks at the different notions that people have developed about HIV/AIDS and how they related to traditional notions about diseases. Here especially the concept of pollution as expressed through ´umnyama´ is discussed. The link between gender violence and HIV infections will also be explained.
In chapter 7 the problems of HIV infections for people with disability will be discussed on a microcultural level. On a more individual level this chapter will deal mainly with the practical relevance of the HIV/AIDS epidemic and the coping strategies that people with disabilities and their caregivers have developed. It addresses issues of overprotection, denial and empowerment and looks at the results of these strategies.
The eighth chapter of this thesis will summarise results as well as provide prospects for transformation. The analytical concept of McElroy and Jewzeski will reoccur here and provide the guidelines for the summarising analysis. The thesis closes with a personal reflection.
1 PhD - Doctor in Philosophy
2 HIV/AIDS - Human Immunodeficiency Virus / Acquired Immune Deficiency Syndrome
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