Previous writers have observed the necessity for approaching the investigation into human behaviour from a holistic perspective (Albrecht et al., 2001). The ability to draw established theories from other academic disciplines into the research is one of the most important factors in the study of disability. It is this approach that helps researchers to cast their investigative nets broadly, in an attempt to decode human behaviour and notions about phenomena such as disability or HIV/AIDS. While literature about HIV/AIDS in southern Africa is plentiful, the field of disability still provides large areas to be explored. This chapter will discuss those parts of the current literature that help to analyse the relationship between the cultural construction of disability and HIV/AIDS in KwaZulu-Natal. It is written from a perspective that looks across disciplines and relates to different types of literature. The concepts of disease and disability are interlinked and therefore literature referring to both phenomena was chosen. In reviewing the literature relevant to this thesis the following bodies of literature will be discussed:
The beginning of the disability studies lies within the political movement of people with disability (Dederich, 2007). Its original purpose was to shift notions about abnormalities or disorders and press rights for people with disability. For a long time the disability studies created a front against the medical model of disability and contributed to the development of the social and cultural model of disability.
For most of history however, disability has not been viewed as a medical phenomenon. As close as the 17th century we find the discussions around the term “monstrum” and “monstrosities”, which referred to an abnormal, deformed body. As Moscoso (1995) describes, the deformed newborn was seen as a sign of sin and ungratefulness in 17th century Europe. Moral misconduct represented itself as deformation and therefore the disability stigma affected parents and the person with the condition alike. Reviewing western concepts, Turner (2000) writes that “beliefs about health and illness in traditional or pre-modern societies were inextricably caught up with notions of religious purity and danger”. These moral notions were only lifted during the period of enlightenment in Europe (Dederich, 2007). In the ´enlightened society´ the notion of sin and moral misconduct were slowly replaced with a naturalised imagination of disability. The ´monstrosity´ or abnormality was not the subject of religious practice anymore but became the object of scientific interest and medical intervention (Dederich, 2007). Anomalies were seen with scientific eyes and not with theological or mystical ones anymore (see also Teratology). Scientists believed that they were replacing the pre-justice of the middle ages with scientific knowledge, metaphysical speculation with a rational picture of the world and myths with the truth. People wished to explain life on earth in a new way, therefore the scientific world undertook the huge task of structuring and classifying nature. In an attempt to place disability within a natural order, different classification systems evolved and categories of disabilities were developed. These efforts occurred within a general new definition of the world and an attempt to classify and structure nature. The monstrosity or abnormality represented, in this context, a deviation from the natural order (Foucault, 2003). Scientists, at the time, studied human bodies from the background of Darwin’s evolutionary theories and Mendel’s laws of inheritance. As a result, abnormalities as well as certain races were categorized as an in-between form of humans and animal (Dederich, 2007). Scientists of the 19th century found this theory very striking as it challenged old religious concepts of a strict separation between humans and animals. Some even hoped that by studying abnormality and race they were able to study human evolution as well. The perverse interest in the physical aspects of human nature at the time found its peak in the freak shows of the 19 century in Europe (Cook, 1996), where people with disability were displayed like animals in a Zoo. At the end of WWI deformations became “normal” and the sensational interest in “freaks” wore off (Cook, 1996). The focus shifted from fascination to pity. Science and medicine shifted their interest away from assuming the role of spectator and recorder, towards a more rehabilitative view. Creating artificial limbs for instance became part of the medical profession. The deformed body was no longer an object of the open space but rather a symbol of loss and was hidden away. Medicine and Rehabilitation began to dominate the field of disability and a medical model was applied to disability in which abnormalities were categorized and appropriate treatment prescribed. People with disability got attributed passive roles where they were receivers of medical and educational interventions, denied decision making, preventing them from taking their lives in their own hands and sometimes even denied the right to live at all.3
As a counter movement, in Great Britain, attempts were made in the 1970s to redefine disability (Dederich, 2007). In opposition to the medical or social-welfare model, which shows disability either in an individualised pathological sense or as an object of social welfare, the idea was developed that disability is actually a form of complex social oppression (social model of disability). Disabled people began to organise themselves in an attempt to protest against their coerced institutionalisation, their exclusion from the labour market and with this the denial to support themselves independently. They demonstrated against their forced dependence and the resulting poverty they had to live in (Thomas, 2004). Around the same time the political movement around people with disabilities in the USA was making similar progress. Now that a social science approach was eminent in the field of disability, so the focus shifted very quickly towards a more culturally orientated interpretation of disability (Mitchell and Snyder, 1997). The cultural model of disability was born.
About ten years later than in Europe and America, people with disability organised themselves in South Africa (DPSA, 2001). The motivation was also of political origin as quite a number of people became disabled through the struggle years. What made the disability movement in South Africa unique in comparison to other disability movements was its involvement in a bigger class struggle against apartheid. As a result of this class struggle the social model of disability was adopted and is therefore still favoured in the disability movements in South Africa of which DPSA (Disabled People South Africa) is the biggest organisation (DPSA, 2001).
From a theoretical point of view the Symbolic Interactionism in the tradition of George Herbert Mead and Herbert Blumer contributed to the reinterpretation of disability. Fundamental in their perspective is the theory that people don’t engage with the world directly, but connect the world with social meaning, structure it and react on the base of these interpretations to the world. Scientists that explain human behaviour with Symbolic Interactionism therefore imply that we live in a symbolical as well as in a physical world. Life is a never ending process of attribution to our own as well as other peoples’ actions and appearances. For this reason social science does not see the disabled body as an object, but rather as the result of cultural meaning and social attribution.
Extending this view, Albrecht points out that disability and the institutionalised answer of the Reha-Industry, is more than a social construction. The interpretation of disability does not depend only on economic factors, but is also a result of a cultural value system (Albrecht, 2003). He argues that individualism, capitalism and the American way of democracy provide the ground for the personalisation of disability. Disability in such a culture becomes a personal problem for which services are provided for on the free market. In opposition to many ´non-western´ societies disability has been attributed with mystical meanings. It is an issue for the whole group or extended family and involves everyone around the person with the condition. ‘Treatment’ could therefore affect people or objects other than the person with the abnormality. The social and cultural constructions of disability become eminent in this comparison and this is often used as an argument against the medical model.
Central to the discussion of the social and cultural model is the term stigma. It is often used, if not overused, and often understood as a negative attribution. In their cross-cultural study, Room and others (2001) summarise that stigma is differently attributed to various disabilities, however the research team concluded that in general the extent of the stigma depends on the cause and severity of the disability. Disorders associated with mental health conditions and addictions were, across cultures, the most stigmatised and people with these conditions were the least likely to receive adequate services or funding. On the other hand the interpretation of disabilities varied and stigma depended on this process. When a disability was seen as a curse from god or a sign of sin the stigma attached to it would be comparably large. A disability that was interpreted as an accident was much more likely to earn sympathy. Room, like others, is using the term stigma without giving it a precise definition, it is however important to explore its meaning (Room et al., 2001). Goffman (1963;Room et al., 2001) in his sociological analysis of the term describes stigma as an attribute that triggers social discrediting. The implications are a denial of privacy, only a superficial acceptance in a group and the perception as being a non-person. In the context of disability, stigma has also been widely discussed in the field of HIV/AIDS, as people with the virus experience substantial social discrimination and avoidance. Esses and Beaufoy (1994) found in their study that negative attitudes towards people with depressions or HIV/AIDS were more severe than the negative attitudes towards amputees. The element of control influenced these negative attitudes tremendously.
While the concept of stigma is relatively static, Murphy’s theory of liminality opens a more flexible approach to the social model of disability. Murphy, himself a disabled anthropologist, published in 1990 his eloquent self-study of the disability experience. Among other things he linked the social experience of disability to the anthropological concept of liminality. Murphy understands liminality as the status of individuals that have not yet been accepted as a full member of society due to social restrictions. His construct is therefore more open to change and can also explain why stigmatising factors do not apply for all people with disability in the same way. For Murphy the permanent exclusion from life in its ordinary form and the denial to participate in society as a full member characterise the social experience of people with disability (Murphy, 1990). He therefore defines disability also as a “disease of social relations” (Murphy, 1990).
The social model of disability also argues that disability is a result of social oppression and discrimination (DPSA, 2001). However a weakness of the social model is its centralisation around the critique of the medical model. To some degree we cannot escape the fact that impairment is visible and objective. Within the medical model it is therefore easy to argue that impairment is not socially constructed as it is seen as a-historical, pre-social and just a natural fact. Hughes and Peterson (1997) therefore argue that in the social model the Cartesian dualism of body and soul is still present. They therefore suggest that we see impairment as a medical problem, an individual experience and a cultural construction. Instead of concentrating on a general critique of society they base their theories on Foucault’s discourse theorem of power and Maurice Merleau-Ponty´s phenomenology of the body. With this they managed to create a much more effective critique of the medical model. They are able to show that medicine keeps power over the discourse of disability because this discipline holds the monopoly of naming dysfunctions. The body in this sense becomes the object of diagnostic labels, constraints and regulations. This power can only be challenged if common labelling is challenged.
Merleau-Ponty´s (1962) phenomenology of the body contradicts the common body and mind dualism. In this sense the body is not an object of but rather a subject of experience. This is embedded in a cultural system of meaning and perception. Embodied experience, of which disability would be one form, can therefore not be interpreted without the social and cultural system. So writes Merleau-Ponty simply “I’m my body” (1962), and emphasises the strong connection between speech and body, which in his opinion can only be understood in connection to each other. The phenomenological view ranks speech secondary to embodied experience and sees speech as incapable of fully describing this experience. Merleau-Ponty sees the body rather as something that is sensible towards all other objects, something that gives resonance to all sounds, colours and words and something that gives all perceptions their original meaning (Merleau-Ponty, 1962). Therefore our world is always an embodied one that has already been interpreted. Exploring this thought more deeply Plügge (1967) writes that “the body and the world around it will never be two different or dividable things. The world is only created through the body, in other words it depends on the existence of the body. The body therefore belongs to both at the same time: the self and the individual world”. The last comment from Plügge also reflects that the body is not only a material object but also a social one. In other words the body has a social dimension which becomes visible to us when perceived by other people. This perception usually includes the interpretation and involvement of the body into a complex network of interactions, relationships, attributions and evaluations. Our self understanding develops on the base of social relations, self image evolves only in relation to the ´other´ (Foucault, 1984;Levinas, 2004). The other therefore holds a key position in the interpretation of body and disability for the disabled person, however the ´other´ is dependent on the way a person has internalised common concepts about body and disability. Discourses about nature versus culture, normal and norm as well as discourses around identity influences this position.
The differentiation between nature and culture is very important in the discourse about disability. Different models of disability give different importance to the two terms. Reflecting on this Waldschmidt argues that while the medical model reduces disability to the naturally visible fact: the impairment, the cultural model interprets disability as an historically and socially based construction (2003). In this sense Baumann postulates his interpretation of social order as a central aspect of culture. He understands culture as an important part of order in human societies and a driving factor to differentiate between order and disorder, between normal and abnormal. Culture in this sense replaces or adds to the natural order (Baumann, 2000).
What is normal or abnormal? The discovery of the body as a medical object in the 19th century led to the creation of the ´norm body´. Criticism of the medical model is therefore not possible without exploring the terms norm and normal. While several authors don’t keep the two terms apart (Davis 1995, p. 23), Dederich on the contrary gave us an applicable definition. Going back to sociological theory, he explains, that norms are legitimated through general social-cultural values. Social norms structure the expectations of people towards interactions with other people and make, therefore, the behaviour of people to a certain extent predictable. With regard to Foucault’s theory he extends this view and presses the point that norms aren’t only repressive, but that without them social interaction would not be possible (Dederich, 2007). In the philosophical field norm can be applied in four different ways:
The conceptions about normal or normality on the other hand are set through comparison. Being normal is a construction of thought. While norm has a juristic trend to determine where the line lies between right and wrong, wanted and unwanted, the term normal and normality imply descriptive categories. Norms are set from outside and can vary in different cultural settings. Normality is based on comparison. It is that which falls in the middle of a Gaußchen distribution (Dederich, 2007). In relation to this Link (1997) presses the point that norms and what is perceived as normal can contradict each other. He explains through the example of abortion how the religious, moral and juristic norm define exactly if abortions are acceptable at all and if so, when. The acceptance in the public eye can differ tremendously from this and sometimes even initiate a discussion towards a change of these norms (Link, 1997). Normality is strongly connected to the way we draw boundaries, which is either, in the case of ´norm´ a strict juristically drawn line or in the case of ´normality´ a flexible line, which depends on peoples’ perception of the average. While norms can easily be exposed as setting boundaries and discrimination, the concept of ´normality´ is more complex and can’t be separated from the social and cultural context. In this context, particularly, Foucault’s (2000) theory of Governmentality explains this flexible normality as a particular political strategy that mixes individual and social coping strategies. In such a perspective, normality will be perceived by the individual as an internal value of what is ´normal´ in his society. This normality will influence the individual’s perception of the environment and how he or she acts. Therefore ´normality´ has huge power over the individual. In Foucault’s theory power is therefore not an outside influence forced onto the person. It is far more a form of internalisation that dominates internal regulation mechanisms and with this perception, knowledge and behaviour. Through internalisation ´normality´ becomes a self-regulating power. Abnormal in this context is the contrasting term of normal. Even though both terms are relative they are often used as absolute and discriminating, however they are also used as a descriptive term in the disability studies. For instance Neubert and Cloerkes (1994) use this term in their book to illustrate the relativity of abnormality and how different cultural settings react differently to abnormally perceived conditions.
In the last 20 years two different ways of handling normality have evolved. The movement around ‘normalisation’ tried to show disability as part of humanity and insisted that people with disability should live a life as ‘normal’ as possible. On the other side of the spectrum the biomedical field developed a “proto-normalisation” in which the prenatal diagnostic played an important role. The human body was once more pressed into norms and anybody with a disability that placed their body outside of these norms was not considered worth living. The two trends visible up until today. While we see more and more people with disability in public places, schools and at work, we see fewer and fewer people with Down-Syndrome as a pregnancy with a Down-Syndrome child can be terminated even late in the pregnancy term.
In the last three decades the above mentioned discourses have caused a major shift in the conceptualisation of health and disability. The focus has shifted from the medical approach that focused on diagnosis and therapy to a broader approach that also includes the social causes of disability. In recognition of this change the World Health Organisation (WHO) initiated a cross-cultural research study (Üstün et al., 2001) that developed a picture of the functional aspects of individual health experiences (see model in chapter 5) and a classification system now known as the ICF4. Health and disability in the ICF are understood as an outcome of interaction between features of the person on the one side and the social and environmental factors on the other (Üstün et al., 2001). Experts and people with disability alike agreed in the WHO model to see disability as a complex phenomenon with its biological, psychological, cultural and social factors. A certain feature (like red hair or cerebral palsy) can cause different reactions in different cultural settings and therefore what might cause disability in one context might not do so in another. However even this international model of disability from the WHO is still influenced by the concept of normality as the description of disability is not possible without this term.
Preceding this development were ethnological studies that tried to understand the cultural dimension of disability. Cross-cultural analysis has shown that negative attitudes towards disability differ and that medical classification can not sufficiently explain the disability experience.
Analysing disability-related research, which was conducted in various countries, Neubert and Cloerkes (1994) created in their classical work the concept of “Andersartigkeit” (abnormalities). Abnormal in their understanding can be anything that will fall outside of the previously discussed normality as long as it is also attributed with cultural meaning. Their cross-cultural study explored social reactions to “abnormal” features and compared these reactions in relation to their cultural background. Neubert and Cloerkes (1994) understand disability as a negatively interpreted “abnormal” feature. Through their analysis they identified 7 different types of reactions to disability. They labelled them as active killing, exclusion, isolation, partly/reduced participation, modified participation, laisser-faire and emical normalisation. Neubert and Cloerkes discuss how stereotypical reactions to certain features impact on peoples’ lives. Through these a person would experience disability. Disability was interpreted as a social construction. Comparing 24 cultural studies, Neubert and Cloerkes identified 7 patterns (1987 p. 88 ff), which they claimed to be valid in all the cultures that they studied. They found severe impairments to be universally negatively evaluated in all cultures, a similar result was found by Üstum a few years later (Üstün et al., 2001). Extreme reactions like exclusion or killing were only reported in the case of people with very visible and severe impairments. Social reactions to ´abnormal´ features varied within different cultures (inter-cultural), depending on the cultural interpretation of that feature. Within one cultural context (intra-cultural) reactions were found to be uniform. Diverse reactions to the same impairment within one culture were seldom found, a fact that I will argue to be very different in the current trend of globalisation and cultural diversity.
Neubert and Cloerkes (1994) criticised themselves that their work provides only unsatisfactory explanations about the interpretation of abnormalities and the resulting reactions. Although they were able to explain under which cultural background which notions and reactions to abnormalities were common, they could not explain how people developed these notions. The link was missing.
Other authors who explored the social attributions to disability likewise did not theorise as to where these attributions come from. Usually certain elements of these attributions, for instance the curse of god, are mentioned but the exploration into the field remains descriptive. Room and his co-authors (2001) show in their in-depth study for the ICIDH-25 version that attitudes about “etiology”6 and presumed causal history determine societal attitudes towards disability and programmes of assistance. They particularly explore the problem of awareness and conclude that the threshold of noticing a condition, as well as the threshold of identifying disability, are culturally related. The study, very convincingly, concludes that stigma is attributed to disabilities and drug abuse. It also describes intellectual disabilities and drug abuse as the most stigmatised across cultures, however the study does not fully analyse the hidden meanings, attributions and subjective theories that cause the stigmata or discrimination. Room (2001) only explains the attributions for severe stigmata in the case of drug abuse and HIV/AIDS infection, as these are attributed with personal guilt. In other words people with HIV/AIDS and drug addicts are seen as responsible for their situation. People therefore have less sympathy and understanding for them than they would have for a person who became disabled through a car accident. Room (2001) also briefly mentions the notion of a cursing god and sin as a cause for disability. These two facts are the only part of the study where hidden meanings are more deeply explored and described. Besides that the linking process between the threshold of awareness and the interpretation process of the abnormal feature are not further explored. For this purpose I will use literature from the field of Medical Anthropology and Social Psychology.
The above mentioned link between the threshold of awareness and the interpretation process of the abnormal feature can better be explored with techniques used in the field of Medical Anthropology and Social Psychology. Originally researchers in both fields tried to understand common notions about diseases and their relations to cultural norms, traditions and practice. Studies in Medical Anthropology inquire into the culturally related interpretations of diseases and try to explain the cultural and subject related roots of individual health-belief models (HBM), while the field of Social Psychology explores more how the individual is influenced by cultural concepts and social settings.
Medical Anthropology is a sub-branch of Anthropology. It, however, finds its roots not only in the classical social and cultural approach of anthropological studies but also within medicine and other natural sciences. Medical Anthropology is about the ways in which people in different cultures and social groups explain the causes of ill-health, the types of treatment they believe in, and to whom they turn for help if they get ill. In Foster and Anderson’s definition it is: “A bio-cultural discipline concerned with both the biological and socio-cultural aspects of human behaviour, a discipline particularly concerned with the ways in which the two interacted throughout human history to influence health and disease” (Foster and Anderson, 1978). Almost all anthropologists exploring the field of health pointed out that in human societies, notions and practises relating to health and illness become a central aspect of the local culture. In this context Helman (1994) suggests that the notions of diseases and illnesses are often linked to a wider range of beliefs about misfortune. In some societies these misfortunes are blamed on supernatural forces, a divine retribution or the interference of a witch or sorcerer. Fascinated by the exotic character of such cultures anthropologists began to investigate the notions and meanings of health and disease.
The first enquiries into this field were made by researchers and missionaries that explored these ‘exotic’ cultures. These studies are therefore closely related to ethnology. Three Anthropologists are seen today as the classical writers of ethnological medicine. William Halse Rivers (1924) was the first anthropologist who tried to understand the culturally related theories about disease from an emical7 perspective. He identified in his book Medicine, Magic and Religion three “world views”, namely “magical”, “religious”, and “naturalistic” and described the imaginations about disease and treatment based on those views. His own biomedical approach8 was exempted from this analysis. He pressed the point that “however wrong the beliefs of Papuans and Melanesians concerning the causation of disease are, their practices are the logical consequences of those beliefs” (Rivers, 1924). Although this statement may seem to be quite arrogant, he had at the time acknowledged the influence of the disease interpretation process and its logical consequences thereafter (attribution and reaction). Another classical writer is Clements Forest with his thesis Primitive Concepts and Disease (Clements, 1932). He identified five attributes of disease: witchcraft, spirit intrusion, soul loss, disease-object-intrusion and taboo breaking. Forest and Rivers described the medical systems as separate from each other, while Ackerknecht (1971) integrated them into a bigger social system that is interlinked. This was an important step at that time. Ackerknecht as well as his predecessors described foreign medical systems as “magical and religious” and therefore not rational and scientific. Early anthropological writings on culture and medicine shared much of the embarrassing evolutionary language of other disciplines. Medical ´beliefs´ and practices of ´non-Western´ people were often interpreted as early stages of medical knowledge. Enlightenment convictions about the advance of medical knowledge run deep, and although change is visible, medicine is a domain in which “a salvational view of science” (Geertz, 1983) is still a great force.
Modern, ‘western’, medical intervention is often compared to so-called ‘traditional’ interventions. The first is often described as modern, rational and based on knowledge and the latter as superstitious, irrational and based on beliefs. Striking is the polarisation of knowledge and belief. Good (1994) recognises that there is little analysis of the history of the concept of ‘belief’ in anthropology and questions the notion of belief. Belief is seen as something that can be wrong and irrational, while knowledge claims to be the truth. Based on this interpretation anthropological research using the term ‘belief’ is judgemental and seems inappropriate. The famous Zulu shaman Vusamazulu Credo Mutwa criticises, and not without reason, that only very few white people have a clear understanding of African people, because “white people have never bothered to study the African people carefully” (Mutwa, 2003).
Medical anthropologists as well as psychologists and sociologists in the field have been fascinated by so-called “exotic cultures” as well as “Lay concepts of disease” and try to understand why people often prefer popular imaginations and notions about diseases instead of explaining disease with a biomedical notion of science. Moscovici (1995) even speaks of “feeling an uneasiness” by realising that the only intelligent being on earth, “homo sapiens”, appears as such an unreasonable being. He was fascinated to study how quickly and easily unscientific rumours can be spread. This is particularly interesting, if one considers the phenomenon of HIV/AIDS or disability. Since we do not imagine human behaviour to be completely unreasonable, there is a need to explain the phenomenon of religious and magical notions, popular and general thoughts and ideologies as well as behaviour in groups.
Recognising a wide spectrum of illness and disease definitions, and the fact that professional criteria differ from lay concepts, anthropologists find it helpful to distinguish between illness, disease and sickness. McElroy and Jezewski (2000) define disease as the “deviation from a biomedical norm”, illness as the “lived experience of cultural constructed categories” and sickness as “a patient role”. The differentiation of illness and disease seems to be used continuously by anthropologists, while the term sickness occasionally appears, as for example in the classification by Kleinman and Seeman (2000). While disease is a central focus of biomedical practitioners, factors affecting illness and sickness, and the transformative power of illness and disability, are more pivotal concerns for the social scientist.
Medical Anthropology tries to explain human notions and actions towards health with cultural influence. Jezewski defines culture as “a system of learnt and shared codes or standards for perceiving, interpreting, and interacting with others and with the environment” (McElroy and Jezewski, 2000). Using their model, cultural influence can be studied on different levels: the macrocultural, the microcultural and the individual level (). Illness and disability experience cuts across all three levels. The cultural understanding of illness and abnormality can differ markedly between people in different social positions (e.g. patient and doctor), educational backgrounds as well as social and cultural groups. Hellmann (1994) illustrates in the example of oral dehydration therapy in Pakistan, how contradicting concepts between patients and health advocates can effect the intervention strategies to serious epidemics. The study in Pakistan reflects the importance of addressing medical concerns as well as involving the affected community and understanding of local culture. In the previously mentioned study in rural Pakistan mothers tended to ignore the Oral Rehydration Therapy (ORT) while their children got seriously sick through diarrhoea. The mothers did this despite the fact that the use of ORT was widely promoted and freely available. Through an anthropological approach scientists found out that diarrhoea is interpreted by the local community as a natural and expected part of teething and growing up and not as an illness. Some mothers were even convinced that it was dangerous to stop diarrhoea as “trapped heat” would otherwise spread to the brain and cause fever. Others explained diarrhoea as a folk illness caused by evil spirits, which can only be treated with traditional remedies. In general diarrhoea was seen as a ´hot´ illness, which required a `cold´ form of treatment. As Western medicine, such as antibiotics, ORT and vitamins, are classified as ´hot´, they were therefore seen as unsuitable for the diarrhoeal child. Similarly the importance of a cultural understanding of epidemics has been particularly and often described in the context of HIV/AIDS (Helman, 1994;McElroy and Jezewski, 2000;Whiteside et al., 2002). This cultural understanding can help to provide more effective interventions through the reductions of misconceptions.
Building bridges and forming understanding between different groups is described by Jezewski as “cultural brokering” (Foster and Anderson, 1978;McElroy and Jezewski, 2000). In this theory problems, strategies and resolutions are adjusted to create understanding and successful strategies for intervention. Researchers in this context always underline the point that it is important to understand local cultures within their own medical classification system. Several anthropologists have tried to develop a classification system that categorises different approaches to health, disease and illness. One of the often quoted classifications is Turner’s typology of domain assumption. Turner (2000) argues that health concepts can be analysed along two dimensions: the sacred/profane and the collective/individual orientation to health and illness. The categories of sacred and profane can be compared to the classification of natural/unnatural causes of disease that other researchers have established (Ngubane, 1977).
|Figure 2 1 Typology of domain assumptions (Turner, 2000, p.11)|
Illnesses that are explained with a sacred or unnatural cause are often those diseases that are attributed to divine punishment, evil spirits or sorcery. Thus the suffering person, a family member or a witch can personally be held responsible for the misfortune. Alternatively human illnesses explained with profane or natural terms is usually explained with the presence of germs, viruses or accidents for which the individual cannot be held responsible. Turner’s dimensions of individual and collective explanations of illness reflect the attribution of disease on a personal or social level. The individual/secular concept forms the basis of allopathic medical approaches of empiricist Cartesian medicine. Disease in this context is caused by malfunction of the human body. Individual interventions are seen as necessary. On the contrary, the collective model attributes human suffering to social causes, for instance the deprivation and alienation in working class slums (Turner, 2000).
While Medical Anthropology has contributed predominately in a descriptive and categorising way, the field of Social Psychology has developed some useful theories about the origin of socially dominant notions on illness. Social Psychology therefore studies, more closely, the cultural effects of illness. The ideas of Subjective Theories on health and disease as well as the idea of Social Representations (Moscovici, 2001) have the ability to deepen our understanding of the individual and societal understanding of diseases.
Moscovici first introduced the theory of Social Representations in 1961, after he analysed the reception of psychoanalysis in France during the 1950s (Moscovici, 1995). The theory of Social Representations is unique because it tries to combine a general theory of social life with a specified theory of individual psychology, a link that only the psychoanalysis is able to make. Moscovici based his theory on Durkheim’s concept of individual and collective representations, on Freud’s psychoanalysis and on developmental theories from Piaget (Durkheim, 1968 / 2005;Piaget, 1969).
Influenced by Durkheim’s concept of collective representations and driven by the goal of explaining the “irrational” behaviour of “homo sapiens” Moscovici (1995) began to understand knowledge and ´belief´ systems as a power that binds people together and which has the capability to activate passive members of society. He understood them as necessary to maintain the social way of living in a society and to pass on values and norms to the younger generation. In this way he disagreed with Durkheim, who interpreted everything cultural just as a naïve notion and misconception (Moscovici, 1995). However, Durkheim introduced, with his anti-thesis the idea, that people acquire their knowledge and thought categories from society, a radical change in Sociology and Anthropology at the time. In his original work he explains, that according to human perception and in an attempt to add other representations of reality to the individual interpretation, one had to develop a new way of describing this phenomenon – “the collective thinking or representations” (Durkheim, 1968 / 2005). Elsewhere he argues that a human being, which does not think in such concepts, is not a human being as it would not be a social being. It would have to depend on its perception only and this would be not very different from an animal (Durkheim, 1968 / 2005).
In this context Moscovici argues that one should pay less attention to the collective character of these representations and rather explore the “mental life” of these imaginations more deeply. Here Moscovici (1995) mentions three pillars, that formed the background to his theory of Social Representations: the preference of representations or common beliefs as an explanation, the social origin of these representations and the occasionally absolute role of these notions. He argues that beliefs, in Durkheim’s sense, are only perceived as irrational when measured against the physical world. In other words, if a person idealizes a plant or animal he is seen as a victim of illusions. If however everyone recognises this plant or animal as a symbol, the notion about it becomes reality and this is the phenomenon Moscovici describes as social representations (Moscovici, 1995).
To study these representations further, it was however necessary at the time to initiate comparative research of myths, legends, traditions and language so one could better understand how representations are interlinked or oppositional to each other. Levy-Bruhl (1951) seems to have been the first person to have undertaken the attempt to compare different cultures and their collective representations. Placing emphasis on cultural differences and interpreting Levy-Bruhl’s writing, Moscovici (1995) postulated four aspects of collective representations:
One might not like Levy-Bruhl’s terminology of “primitive cultures”, a term he used for cultures he found ´exotic´, but one has to see his work in its historical context. While scientists in the 1920s were still able to work with the term evolution, particularly with the evolution from primitive to civilised cultures, this was no longer possible after Levy-Bruhl. Levy-Bruhl also analysed the differences between the so-called “primitive” and “civilised” cultures in precise detail. Particularly impressive at the time was his ability to analyse the connections between religious or ritual behaviour and certain sayings, word phrases, number systems and the behaviour towards the sick or dead. In a summarising conclusion he postulates that collective representations in “primitive cultures” are less scientific and more emotionally attached as in “civilised cultures”. Social memory is, in these cultures, of more importance and the people using these representations have fewer problems with contradicting elements within their personal theories (Levy-Bruhl, 1951). At the time this was a boundary breaking discovery and Levy-Bruhl’s theories therefore influenced people like Piaget and Vygotski9.
While Levy-Bruhl and his contemporaries used stories from adventurers and missionaries in exotic cultures, Vygotski and Luria10 made an effort to explore the theory of collective representations within their own culture. The two Russian psychologists chose as their study field nomads in Uzbekistan and Kirgisien. In particular Luria hoped through the nomad population he would be able to study the changes, forms and contents of human thought, as these people lived at a nexus between traditional and modern culture (Lurija, 1993). However their theory also uses terms like “scientific” and “unscientific” representations and devalued the so called “unscientific culture”.
This is exactly where Moscovici’s critique of collective representations is positioned. He argues that the “norm” presented by scientific approach and the over-generalised logic connected to this stigmatises and devalues, automatically, other forms of thought and belief (Moscovici, 1995). He criticises, that without further explanation, societies are either categorised as scientific or unscientific and collective representations are only studied in ´unscientific´ cultures. Besides this, collective representations are seen as characteristic of ´total´ or enclosed societies in which symbolical and practical relationships between individuals are completely integrated. In such a society all behaviour seems to be guided by mythical and ritual traditions (p. 295). The representations are described as being a general understanding of a social group and very static. Moscovici argues that collective representations can therefore only be applied to very “exotic” or historical societies. They are typical for societies in which institutions, language and traditions rigidly represent the belief system of all individuals. Moscovici therefore created, as an alternative to such a rigid concept, the theory of Social Representations and summarises under this term any form of belief, ideology or knowledge. They are for him the quintessence of Social Representation, which in return are applicable to any cultural background (Moscovici, 1995). Ordinary knowledge that people apply in daily life can be used to study these Social Representations (1995).
Social Representations are generally understood as reflecting social knowledge that has evolved in a particular social group. Another aspect of it is the expectation that knowledge in general depends on belonging to such a group and that this determines what people know and how they know it. Flick writes in this regard that Social Representations don’t just reproduce reality. Moscovicis model is constructive in two ways. Firstly the model implies that reality as such does not exist as it is always constructed through interaction between individuals and groups. Secondly the process of Social Representations itself is a method to construct reality (Flick, Kardorff, Keupp, Rosenstiel & Wolff 1995, p.74).
Traditionally Social Representations are described as a system of values, ideas and behaviour descriptions. Flick (1995) mentions two functions. On the one hand Social Representations help the individual to structure and organise their environment. Moscovici himself presses the point that Social Representations have the purpose of creating a bridge between the known and unknown (1995) so the individual can orientate itself quickly in its environment. On the other hand Social Representations make communication between group members possible in the first place, as they provide a code for social exchange and a code for labelling different aspects of the world. In other words the purpose of Social Representations is to make communication within a group relatively conflict-free (1995). Therefore Social Representations don’t simulate reality but they influence our perception and interpretation of it (Moscovici, 1995). At this point however it is interesting to see how previous writers explained how the mechanisms of Subjective Representations work within the individual and how a person constructs his or her understanding of the world and how this shapes the person’s understanding and imaginations about disease and disability. The concept of Subjective Theories seems to be most helpful in this context.
Flick (1998) describes subjective imaginations about health and disease as determined by gender, age and individual health conditions. The cultural dimension described above could be added as a fourth factor. Depending on these factors a person is believed to develop an individual theory about health and diseases. These theories have different purposes and are summarized as Subjective Theories. In general Subjective Theories are understood as an aggregate of thought to interpret the self and the world. These thoughts appear in an argumentative structure that is comparable but not identical to the structure of scientific theories (Groeben and Scheele, 1982). Through Subjective Theories the individual becomes an expert in a field, which enables the person to quickly analyse a situation and find orientation (Flick 1998, p. 14). They also provide an explanation for disease and help predict future events.
Raspe and Ritter (1982) conducted research on patients with chronic polyarthritis and found that most of their patients had a combination of explanations synthesised in their Subjective Theory about their disease and Raspe and Ritter called these types of theories “Mosaic theories”. It is very likely that in the time of globalisation these “Mosaic theories” will occur much more often and will become more diverse. This also argues against a dualistic picture of so-called western versus traditional medicine and speaks for a more pluralistic approach as seen in Becker’s (1986) model. His model incorporated theories about culturally related interpretations of disease, the influence of individual situations and the life experiences of a person. All these points are combined in Becker’s understanding of the evolution of Subjective Theories.
In Becker’s model it becomes apparent which factors contribute to the development of personal theories about disease and disability. People will only start to look for an explanation for a disease, abnormality or disability if they have a need to explain it. The threshold of an abnormality influences this to a large extent. In a second step the personal life experience of the individual plays a major role in the interpretation process. In accordance with the person’s knowledge about science or magic, interpretations of the disease or disability are developed. Within a cultural group one can often identify reoccurring interpretations of diseases and disabilities.
|Figure 2 2 Subjective Theories about diseases (Becker 1986, p 318)|
Moscovici’s (1995) concept summarises these “repeating notions” of disease as Social Representations. In Becker’s model they are reflected as the ´main scientific theories´ and the ´magical theories´. These representations form a so-called “Health-Belief Model” (Moscovici, 1995) on which individuals or a whole cultural community will base their knowledge and decision making. Scientific research tries to identify these Social Representations and hopes through them to explain how people make sense of their experiences and life circumstances.
A theory linked to the two theories mentioned above is the theory of Social Attribution. Attributions are assumptions people make about characteristics of humans or objects and the causes of phenomena around them. Hewstone and Augoustinos classified two types of attributions, the personal and situational attribution (1995). Personal attribution relates to internal causal factors like the disposition of a person, while situational attribution refers to the external factors that are caused by the situation and environment a person finds themselves in. The authors press the point that people in general tend to overestimate the personal causal factors, while underestimating the influence of the environment. The two authors have however written the last statement from a western perspective and it is therefore possible that in another cultural context people could attribute more meaning to the situational factors. What Hewstone and Augostinos have postulated is the inter-relationship between attribution and Social Representation (1995). Social Representation is understood by them as the basis on which a person builds attribution. In other words Social Representations explain the origin of attributions, the link that for instance Neubert and Cloerkes did not explain.
The models of Social Representation and Subjective Theories can help to reinterpret work from other scientists. One such example is Ngubane’s findings about the Zulu health belief system. Based on their subjective interpretation of illness and disability Zulu-speaking people in KwaZulu-Natal differentiate between natural diseases and diseases of African people (Ngubane, 1977). Natural diseases are cured purely with medicine which is believed to be potent in itself. Therefore, for those types of diseases, people accept curing techniques and medicines of the so-called “western type”. For “diseases of African people” they will only accept “traditional medicine and advice”. Ngubane (1977) identified for the Zulu disease “belief system” 5 main causes of disease. Diseases are therefore either classified as caused through natural influence, sorcery, ancestors, pollution or evil spirits. As these concepts seem to be widely spread, they can also be classified as Social Representations. These Social Representations influence the Subjective Theory of an individual in this particular culture. Depending on the interpretation of the illness people will choose different specialists and treatment. One and the same phenomenon can therefore be treated differently, regardless of the visible symptoms. With the classifications of the biomedical model different diseases can be treated with similar medicine and rituals, if the cause is believed to be the same. This might be classified as irrational behaviour from an ethical point of view, but it appears to be completely rational from an emic perspective.
From a biomedical point of view irrational patient behaviour can be explained through the person’s individual or Subjective Theory of health and disease. Cassel (1955), who conducted research with a Zulu tribe, describes for instance a disease with pain in the breast region, breathing problems, coughing and bleeding sputum, all of which was attributed to the effects of witchcraft. Special medicine was provided by the local sangoma. Before the colonial era this disease was probably pneumonia and during colonisation tuberculosis was introduced, which had very similar symptoms. The colonial doctors could not understand why the indigenous people did not come for treatment and rather chose the local medicine, which was regarded as primitive. Understanding their interpretation of disease and how it is related to sorcery and witchcraft, one can understand why these local people did not see any need to consult a colonial doctor, who had no expertise in these matters anyway.
Bringing more clarity into the picture, Ngubane (1977) describes sorcery as a deliberate placement of “harmful substances in situations which can harm particular people”. The intention is the crucial point that labels an act as one of sorcery. Africans believe that non-Africans do not understand the notions of health and disease and causations of diseases that are based on their cosmology. Disease or misfortune caused by sorcery would be one of these. Therefore an African medical practitioner or so called “traditional healer” would be the only person to be consulted (Ngubane, 1977).
These cultural discrepancies about health and disease have been carried forward into the present day. International institutions like the WHO11 define health as physical, psychological, mental and social well-being (WHO, 2002). The human body is described as something that people can look after and is seen as being separate from the person’s soul. A person is believed to have one soul. This separation of body and a single soul is a typical concept of cultures influenced by the three main religions. The mental/psychological level is usually given a higher value than the physical one. People will look after their bodies as a king looks after his subjects. Mistreatment leads to revolution and strike, in this case disease. This concept is contradictory to African interpretations of disease such as Gronemeyer (2002) found in Namibia. In his study participants experienced themselves as one with their body and not the body as something they have to look after. Therefore they saw themselves incapable of looking after their body like a biomedical model would suggest. The Zulu shaman Mutwa on the other hand describes that his people have two souls the “ena” and the “moya”. One symbolised the “fight” between good and bad in every human, which is believed to be balanced out in a healthy person. The other one being “the self” made out of a spirit substance, that is in contact with the “other world” and the ancestors through dreams (Mutwa, 2003). This notion is also difficult to include in the WHO model or any other bio-medically based models.
Notions about disability and disease in KwaZulu-Natal are today based on a variety of concepts or Social Representations. Ntombikile and Mazibuko (1989) interviewed parents of children with cerebral palsy (CP) in KwaZulu-Natal and found that those parents had looked for help using a mixture of professionals, like doctors and nurses in hospitals, faith healers, and traditional as well as spiritual healers. As a consequence parents were often confused about the mixed messages they received. The two researchers therefore noticed misconceptions about the child’s problems and abilities. For instance, quite a number of mothers imagined their child to be “mentally retarded”, because it had CP12 (Mazibuko, 1989).
Conducting research into mental health care in the same province, Mkize (2002) found that many people don’t pass through the filters of national health care as they would not consult a doctor but rather attended a spiritual healer. Disorders therefore often took a long time to be diagnosed by the public health system. The decision to contact a doctor was in most cases influenced by the seriousness of the illness, availability of health services, financial implications and personal factors. Mkize (2002) explains that if bewitchment or “ukufa kwabantu” was suspected there would be a delay to seek “relevant mental health care”. She pressed the point that the “belief system” of sorcery as identified by Ngubane (1977) is still entrenched in the way of thinking and the lifestyle of the African people (Mkize, 2002) and therefore influences the choice of treatment immensely. Writings on these notions shall be reviewed in the next body of literature.
Zulu ethnography and recent history is well documented. Travellers, traders, government officials and above all missionaries have been adding to this literature for 200 years (Schimlek, 1953;Steward and Malcolm, 1986). Usually social life, custom, cloth and literature are among the researched subjects. Disease is, except for Ngubane’s work in 1977, a subject usually mentioned in passing. Not surprisingly there are hardly any studies to be found that discuss the cultural interpretation of disability.
Beside Social Psychology, anthropological and ethnological studies also explore subjective health theories or so called “health-belief models” (HBM). The Ethnography study by Ngubane (1977) shows how Zulu speaking people interpret health and disease and how they presuppose a conception of human nature and the human life cycle as part of a totality that can best be designated as the “Zulu-cosmos”. Without this background the characteristic Zulu procedure in the treatment of illness, prophylactic medication and disability cannot be understood. Her analysis of the significance of emetics for the physical and spiritual purification, that is basic to Zulu medication, shows the rationale behind their beliefs about contagion and of mystical affliction. Even so Ngubane does not mention disability, concepts of disease might be comparable. She mentions four major concepts that explain causes of diseases being either natural causes, sorcery, ancestors and pollution (1977).
Ngubane (1977) describes a case in which a young man married and took his genitors name against the advise of all his relatives and without involving his ancestors in the process. As a result he lost the protection from his ancestors and he and his children became sick through witchcraft. Her example shows clearly, how interlinked the notions about disease are for Zulu speaking people.
Studies of other cultural backgrounds show similar intermixtures of concepts. Referring to Evans-Pritchard´s (1937) work, Good describes the cosmology of witchcraft of the Azande using the example of a granary collapsing. “Every Zande knows that termites eat the support (of the granary) over the course of time and that even the hardest wood will decay after years of service”. This explanation is however not sufficient for the Zande, as it does not answer why the granary collapsed at that particular time and affected those particular people. Good explains that although practical reason explains the immediate causes of the misfortune the Azande manage to answer the “Why me?” question with witchcraft (Good, 1994). Another example shows how the Social Representations can influence people’s decision making and get them to take action. Ngubane describes a boy’s illness that was believed to have been caused by angry ancestors. They demanded that a sacrifice be made for having brought the father’s wife into the family. “The baby was ill because the ancestors were asking who the mother of the twins was. The diviner stressed that the medicines she was giving him to cure the illness would have no effect unless Gwala (the father) made peace with the ancestors by admitting guilt and promising to put matters right as soon as he possibly could.” A goat was slaughtered for the ancestors combined with an appropriate ceremony (Ngubane, 1977). The diviner’s Subjective Theory about the disease led to a combined treatment that was based on herbal as well as spiritual treatment. This is something that is seldom found when using the biomedical model. Ngubane, however seems to describe a relatively pure culture that has not as yet been overly influenced by other medical models. These types of cultures are no longer likely to be found, other than in very remote areas.
Since her survey 30 years have gone past and KwaZulu-Natal has gone through some major changes. Nevertheless the “belief system” as identified by Ngubane (1977) is still entrenched in the way of thinking and the lifestyle of the African people. African concepts still exist and have mixed with other interpretations and today we find a variety of concepts and approaches. People choose healthcare, depending on their individual interpretation of the disease or disability. Interpretation and treatment of disability is therefore highly dependent on people’s choice of concept and access to knowledge. As already mentioned, in Mkize’s study (2002), if bewitchment was suspected there was a delay in seeking help from the public mental health care system. In these cases people applied the “traditional” concept and tried to seek help with a traditional healer or “sangoma”. Another study (Mazibuko, 1989) showed that parents often perceive CP as a form of mental retardation. They try to apply a medical model and due to a lack of understanding develop misconceptions about their children’s disability. The treatment was obviously chosen or not chosen in accordance with the interpretation of their child’s problem. Interpretations of disability that negatively affected the person’s life were often reported. Ntuli (2004) for instance explained that blind children in rural areas of South Africa are often kept hidden inside. People try either to protect them or are ashamed, as they believe that the blindness is a curse. Their interpretation of disability leads to a logical and rational reaction, in this case exclusion. Literature on the conceptualisation of disease and disability in Zulu-culture is very rare and beside Ngubane’s major contribution there is only very little available. Therefore my thesis will attempt to explore the meanings and concepts of disability in greater depth.
The above bodies of literature reflect on the different theories about disease and disability. To place disability in the broader context of HIV/AIDS I will in the following subchapters review the literature on sexual culture, gender and HIV/AIDS.
HIV/AIDS is a major Socio-economic issue that affects people in South Africa in many different ways. Especially south of the Sahara AIDS became a pandemic not previously known to the world. Social consequences are revealed through family systems being dissolved and restructured and an increase in the number of orphans as well as prostitution and crime as alternative means of making a living (Harrison et al., 2001). South Africa is one of the most severely affected countries and the province of KwaZulu-Natal (KZN) remains the epicentre of the HIV/AIDS pandemic. Being the epicentre, KZN also seems to attract enough research and has three major research sites, namely: the African Research Centre, the HEARD and the HIVAN organisation at the University of KZN.
Literature on AIDS in Africa represents a vast and ever-expanding area of professional writing. A fair amount of studies on HIV/AIDS in Africa measure the prevalence rate of HIV. Prevalence rates can be quite confusing as almost every study comes to a different result (appendix 5,6,7). The problems seem to lie within the choice of study participants and in mathematical matters. The Nelson Mandela study (2002), which used volunteers and had a sample representative for South Africa in relation to age, income and gender, comes to a prevalence rate of 11,4 % in South Africa and 11,7 % in KwaZulu-Natal. The labour relation council (Rehle and Shisana, 2005) drew similar results with a prevalence rate of 12.8% in educators in South Africa. This study was also based on volunteer testing and had a very high respondent rate (97 % consulted Prof. Samuel, UKZN).
The South African Department of Health, with its antenatal testing, arrived with a prevalence rate, in 2002, of 24 % and in 2004 of 29,5 % for the whole of South Africa and 40,7 % for KwaZulu-Natal. Whiteside and Sunter (2000) obtained similar results quoting a prevalence rate of 22,4 nationally and 32,5 % for KwaZulu-Natal in 1999. An interesting point is that the authors argue that antenatal clinic data can be considered to be representative of the broader population, if a ratio for female to male infections could be established (Whiteside and Sunter, 2000). They also did not see much difference between the urban and the rural areas as reported from other African countries. This, they explain, is as a result of a good transport system and South Africa’s mobile population, which has enabled the virus to spread throughout the country (2000). Analysing the infection rate of adults (15-59 years) for 2001 they calculated a prevalence rate of 26 % for adults and 17 % for the whole population. The prevalence rates would be comparable with the Nelson Mandela study (see appendix 5). Another antenatal study carried out by the African Centre for Health and Population studies in Hlabisa, KwaZulu-Natal, comes to a prevalence rate of 34,6 % of women. The township areas were significantly more affected than the rural areas (Baetzing-Feigenbaum et al., 2004). Using GPS13 the African Centre (Tanser and Le Sueur, 2002) was able to show that infection rates were much higher in clinics attached to townships and along major national roads (2002, p. 44).
The variety of results seems to be confusing. On the one hand studies based on volunteer testing, which approach a broader part of the population, show medium prevalence rates. They are however often criticised as not being representative. The argument lies within the probability that people who know their positive status or who are afraid of being HIV positive will not volunteer. The result could therefore gloss over the true situation. On the other hand studies that use antenatal data come to very different results and have very high prevalence rates. They are often criticised for not being representative on a national level and that they only show the prevalence rates of sexually active middle class to poor women. Even though the prevalence rates show very different results, all studies point to a similar scenario. HIV/AIDS seems to be consistently on the rise in South Africa and KwaZulu-Natal is one of the most severely affected provinces. Infection rates are highest in the age group between 15 and 35 years and women seem to be more affected than men.
The overwhelming majority of studies available on AIDS in Africa are largely quantitative studies produced through the use of various research techniques. Widely used is the Rapid Assessment Procedure (RAP) described by Scrimshaw and Hurtado (1987). Studies based on RAP along with studies based on surveys of Knowledge, Attitude and Practice (KAP) bear the dubious distinction, in the anthropological world, of being ´quick and dirty´. Researchers often used these methods in order to quickly gather qualitative information, which in effect is never really qualitative and brings only a limited insight into people’s complex experiences with disease. Leclerc-Madlala (1999) therefore argues that academic knowledge of AIDS in Africa is still largely “piecemeal knowledge”, and limited in terms of depth and quality. She rather suggests the use of participatory research and favoured Participatory Action Research (PAR). This is, in South Africa, an increasingly popular approach as it enhances the principles of social justice like equality, restitution and procedural justice and this then determines the research process. The researcher will try to intervene and empower participants so that they can profit from the research immediately.
Using PAR Muthukrishna (2006) tried to engage her participants in a meaningful exchange, so that the participant would have the opportunity to talk about the AIDS related topics, that they do not usually get the chance to discuss. The study particularly shows the disabling effects of HIV/AIDS. It is argued that the “safe spaces”, that participatory research creates, enables the participants to share stories and experiences that were in themselves transformative and emancipatory. This does not however mean that participatory research will guarantee the achievement of those ethical qualities. Francis, Muthukrishna and Ramsuran (2005, p.12) show rather that it is the researcher’s attitude and methodological approach that creates these “safe spaces”, in which people feel free to talk.
Besides these recent studies there have also been substantial studies on AIDS in Africa, which focus upon the social cultural factors, and their influence on people’s behaviour. Caldwell (1996), like many authors, cited cultural forces such as the subordinate position of women in society, including the female economic dependence on men, and a general breakdown of traditional moral and institutional structures that once acted as a constraint to the sexual behaviour of women.
As an anthropologist, Green (1988;1993) has produced studies on a variety of diseases and has centred his AIDS work mainly around traditional healers. He explored their experiences with and responses to the growing epidemic in Southern Africa. He already argued, in 1994, in favour of a closer collaboration between traditional healers and biomedical practitioners as an important strategy for managing the HIV/AIDS epidemic in Africa.
Taylor (1990) and Preston-Whyte (1996) both argued that the cultural framework within which people live needs to be taken into account when designing interventions aimed at influencing sexual decision making. Schoepf (1992) therefore presses the point that HIV in Africa doesn’t spread as quickly “because of exotic cultural practices but because of many peoples’ normal response to situations of everyday life”. Understanding the sexual culture is therefore essential to understanding AIDS in Africa.
Gronemeyer, who conducted most of his research in Namibia, presses the point that HIV/AIDS intervention needs to understand the cultural interpretations of disease and sexuality. In the onslaught of HIV/AIDS old imaginations of “being body” rather than the western imagination of “having a body” doesn’t allow a person to feel that they are able to look after their own body (Gronemeyer, 2002). Sexuality and fertility are strongly connected to each other and in the African cosmology death doesn’t fit into this constellation. Gronemeyer therefore argues that people first need to change their attitudes towards their own body and sexuality before HIV prevention could be successful.
For South Africans this is an especially hard lesson to be learnt considering that they have only recently won their freedom and the efforts of keeping their own long marginalized culture alive are now threatened by an invisible enemy. People want to find their African roots and be proud of them. It is therefore a reality that people often may not want to listen to the westernised professional whom they perceive as telling them what to do.
Gronemeyer (2002) also argues that the modernisation of the African world and the recent processes of globalisation have created a perfect “climate” for the HIV virus to spread fast. The building of highways and streets that reach out into every little village, the migrant worker systems that keep spouses from each other and encourage multiple partnerships, the destruction of subsistence lifestyle and the development of sex as an income stream are all seen by many authors as responsible for the swift spread of HIV (Whiteside and Sunter, 2000;Gronemeyer, 2002). Whiteside and Sunter (2000) also argue that the mobile South African society particularly along the main transport arteries offer great scope for concurrent partners and with this a subsequent increase in the risk for HIV infection. Data from the African centre (see above) supports this theory. The two authors (2000) also argue that countries with low levels of social cohesion and relatively high incomes face the most rapidly growing epidemic with the highest levels of infection and have categorised South Africa as one such country. The grotesque reality is that whoever persists with risky behaviour and does not accept the biomedical dictature will die. Gronemeyer’s conclusion could not be truer than in the case of South Africa. The long denial of the link between HIV and AIDS has unnecessarily mystified AIDS and created uncertainty between South Africans and this is believed to have led to unnecessary infections. In addition to this the gendering effects of the epidemic have been discussed and this shall be reviewed in the following body of literature.
From an epidemiological point of view South Africa is known to have a “Pattern II” transmission of HIV, which means heterosexual transmission of HIV and mother to child infections are common. Statistical measurements show a severe infection rate, especially with regard to women, and AIDS related deaths are constantly on the rise. Although most people in South Africa know what AIDS is, there is still a very slow change of behaviour, as sexual behaviour is determined by economic, social and cultural factors. Various ethnological research has been conducted which tries to understand the inner processes of HIV/AIDS and sexuality. A fair amount of qualitative AIDS research has focused on sexual negotiations and sexual decision-making in Africa. In Southern Africa, researchers have focused on countries like Mozambique, Botswana, South Africa and Zimbabwe.
Exploring sexual behaviour, Machel’s (2002) research in South Africa’s neighbouring country, Mozambique, found that young women aged 14-20 were engaging in risky sexual behaviour due to socio-economic factors and/or patriarchal beliefs and norms. Similar results were found by Campell (2001), whilst conducting research in South African Townships. Despite the high levels of infection and the fact that people are already aware of HIV/AIDS, levels of perceived vulnerability are low, and unprotected sex is still common within townships.
Analysing the problem from a more quantitative perspective, Buga (1996) interviewed teenagers in the Transkei, the neighbouring district of KwaZulu-Natal. He found that 25% of births are from teenagers, 75% of whom are unmarried. In the secondary schools that he approached, 74.6% of the teenagers were already sexually active. Only 182 (23.5%) of these teens had ever used a modern method of contraception and 241 reported at least one pregnancy. Major reasons cited for initiating coitus included: forced by partner (28.4%), peer pressure (20.0%) carried away by passion (15.1%), to prove normality (11.7%) and to prove love of boyfriend (10.1%). The reasons provided by sexually inexperienced girls for delaying intercourse included: religious values (24.4%), fear of pregnancy (23.8%), wish to wait for marriage (20.0%), fear of AIDS (15.6%), not emotionally ready (8.6%) and fear of STDs (6.4%). Knowledge of reproduction was low, with only 19% able to identify the fertile phase of the menstrual cycle. 64% of the experienced and 73.5% of the inexperienced girls disapproved of premarital sex while still in school; only 27.6% and 11.4%, respectively, supported the inclusion of sex education in the school curriculum (Buga et al., 1996). Overall, these findings indicate that early sexual maturity, as well as the early onset of dating, and the poor knowledge of reproductive biology and contraception leads to unprotected sexual activity. Buga suggests a need for school-based family life education and that this should be taught before girls become sexually active. Findings by other researchers such as Harrison (2001), reflect a very similar picture concerning young girls in KwaZulu-Natal.
In the general literature gender roles and the concept of masculinity are examined (Thorpe 2001, Lewis 2000, Murphy 1998). These results also suggested that safer sexual practices and mutual consent are hindered by several factors. These include: sexual violence and coercion, the negative symbolism of condoms, gender imbalance in sexual decision-making, and peer pressure concerning sexual performance.
Of particular relevance are those studies that have focused on explaining the inner meanings and the ´gendering´ of HIV/AIDS in Africa. One of the first people to approach this was Ingstadt (1990). Conducting her research in Botswana, she discussed how informants often used female sexual anatomy as a point of reference, describing women as “dirty” and potentially more prone to carrying disease than men. Ingstadt therefore argued that such notions could ultimately lead to blaming woman for the spread of AIDS. Leclerc-Madlala (1999) proved with her thesis, conducted in the Marianhill area in KwaZulu-Natal, that the theme of ´dirty´ woman plays a major role in the cultural related interpretation of HIV/AIDS. The belief of “umnyama” or pollution is associated with women and this is linked with HIV/AIDS. Women are seen as “dirty” and “dangerous” and often blamed for spreading HIV (Leclerc - Madlala, 1999). She even quotes through her research the notion that “Woman is AIDS”, describing women as the source and disseminator of HIV/ AIDS (1999).
Wood (Wood and Jewkes, 1996) and Leclerc-Madlala (1999) describe how violence often forms part of the ´sexual repertoire´ of young men in KwaZulu-Natal. Abdool-Karim and Morar (Abdool-Karim and Morar, 1994) as well as Hadden (1997) identified the women’s fear of violence and feelings of powerlessness as a major barrier to safer sex practices. Leclerc-Madlala (1997) even describes the phenomenon of young male gangs in the Durban area who raped women with the aim of infecting them as a kind of punishment for their own infection. Similarly Whiteside and Sunter (2000) explain the recklessness of young men that know their positive status with an attempt to compensate for not having long to live.
Early studies in the 1990`s (McGarth, 1993) already suggested that women accept multiple sexual partners due to economic need and sexual satisfaction. McGrath also showed that women did not even consider using condoms as they felt that their partners would never comply with this. Several other studies have strengthened this point. In KwaZulu-Natal Leclerc-Madlala (1999, p. 40) and Preston-Whyte (1996) showed that using condoms is culturally unacceptable as people see this as a sign of not trusting each other. Leclerc-Madlala shows how “condomless sex” is an adaptive practice that helps women to maintain idealised images of relationships and of oneself (1999). Condoms are therefore rather used with strangers or prostitutes than with a permanent partner.
Conducting qualitative research Tillotson and Maharaj (2001) described how myths interfere with condom acceptance, when men believe that by using the free condoms from the hospital they could get infected with HIV. Men also fear that by using a condom a sangoma could use their sperm for “ubuthakathi”, witchcraft and harm them. Dlala (2001) also mentions that people refuse to use condoms as they believe that their partner does not want them or that they would reduce sexual satisfaction. Adolescent males in particular believe that they could judge whether their partners were infected or not (Tillotson and Maharaj, 2001), were prone to experimentation and risk taking (p. 87) and only use condoms with so-called affairs and not with their girlfriends (p. 93). Myths about the origin of AIDS and false information about medical cures are also still confusing people. Tillotson and Maharaj report that some of their participants believed that one could get infected with AIDS by eating oranges (2001) and could be cured by sleeping with a virgin (2001). The problematic of “virgin cleansing” (Whiteside and Sunter, 2000) was described by several other authors and will be explained in more detail later.
People in South Africa also engage in sexual relationships from a very early age and accept multiple partnerships. Often fear, coercion and peer pressure mixed with poor guidance by the older generation leads young people to take risks (Tillotson and Maharaj, 2001). Myths about the necessity of early sex also lead youngsters into early engagements with sex. Harrison (2001) describes the fear of young boys that evil spirits could harm then, if they did not have sex close to puberty. In his work one also finds the misconception that possible pain or problems concerning impotence, would arise if they did not start sex early. Some even believed that they would be more likely to impregnate a girl, as they would have more sperm. These misconceptions can possibly be explained with Tillotson’s and Maharaj’s findings that young males often lacked basic knowledge of the human body and its functions (2001). In comparison to Buga’s study in 1996 this suggests that in recent years there has been little improvement in educating people about the human body, while on the other side knowledge about HIV/AIDS has been spread without affecting or changing behaviour.
Women on the other hand were found to hardly consider feelings of love when choosing a partner (Dladla et al., 2001). In addition they were described as either looking for sexual satisfaction outside their marriage or for an extra income or source of material goods.
The consequences of Apartheid led to spouses being separated for months at a time, and this encouraged multi-sex relationships. Nevertheless Preston-Whyte concludes that the “answer condom” may not be suitable for every cultural reality (1996). This comment was now made over 10 years ago and an alternative seems not to have been found. The so often proclaimed abstinence does not seem to be a local solution either as this does not conform to the realities of African life. This leaves Africa in a dilemma and those who do not “condomise” will die. People are only just starting to grasp this concept, while traditional leaders still proclaim, “using condoms is fooling oneself” (Ziba Jiyane, Sunday Tribune 14. Aug 2005). The government only recently stopped denying the connection between HIV/AIDS and sexual violence is still a reality for many African youngsters particular females (Leclerc - Madlala, 1999).
AIDS and sexuality is still described as a taboo topic (Dube, 2004) and this is only changing at a very slow rate. Research indicates that many youngsters find it difficult to get appropriate advice and guidance. For people with disability this is even more difficult. Reflecting this Dube, himself disabled, reported during a symposium on HIV/AIDS and disability in 2004, that people with disability in South Africa are often victims of abuse and at the same time they are not regarded as a proper sexual partner and therefore not in need of sexual education (Dube, 2004).
In her study of people with paralysis from spinal injuries, Seymour (1998) explores the cultural influence on sexuality. She analyses that in sexual terms “ideas of normality and abnormality are tied to the rigid parameters of male-female dichotomy” (p. 153 ). Because of this people with disability have to challenge more than one social category. They have to fight against the perception that they are asexual as well as for the recognition as a woman and a man that will be acknowledged not only as a social being and a contributing individual but also will be accepted as a sexual partner. Comparing the effect of spinal injuries on the sexual functioning of women and men Seymour concludes that women experience much less practical sexual dysfunction than men (1998). Society, however, does influence the ideas, values, bodily manifestations and social practice associated with sexuality and therefore the “physical advantage” women with disability face is only an “empty blessing” in terms of the reproductive opportunities. Their male counterparts, even though physically more affected by their injuries, experience less rejection as sexual partners (Seymour, 1998). Men and women are attributed roles, with women being the care givers and men traditionally being the providers. This influences sexuality to such a degree that a woman will be more likely to care and love a paralysed man than the other way around. Another important point mentioned in Seymour’s study is the influence of parents on their offspring’s sexual development. Often overprotected and dependent on their parents, young women with disability, particularly, find it difficult to enjoy privacy, gain independence and discuss sexual matters as parents might deny their offspring’s sexual development (Seymour, 1998). How this is discussed in relation to HIV/AIDS shall be reviewed in the final body of literature.
At the turn of this millennium it was commonly assumed that individuals with disabilities were not at a high risk of HIV infection. It was incorrectly believed that they would be sexually inactive, unlikely to use drugs or alcohol, and less at risk of violence or rape than their non-disabled peers (Weltbank:, 2003). Despite these assumptions disabled people perceived themselves to be at higher risk of HIV infection due to disability regardless of their awareness levels (report Disabled People International 26.12.2004; AIDS Action issue 35 December 1996).
The World Bank’s Global Survey on HIV/AIDS and Disability (Groce, 2004) was the first research conducted that brought the fields of HIV/AIDS and disability together. A pre-survey cited the lack of data on disabled populations and HIV throughout the Developing World. A survey conducted in Uganda and Rwanda then showed that adolescents with disabilities are actually highly vulnerable to HIV and sexually transmitted infections due to sexual abuse and misconceptions about sexuality and rights (Yousafzai & Edwards, Global survey 2004). Issues of effective control in relationships and sexual decision-making were also raised as a problem. Linked to the same survey was research about the deaf population in Swaziland (Groce et al., 2005) and Nigeria (Groce et al., 2005). Both studies could identify significant differences in levels of knowledge about HIV/AIDS between the deaf and the hearing population. While prevention methods like condom use and abstinence are well know among the deaf population other misconceptions are still widespread among deaf people in general (Groce et al., 2005). For instance people with loss of hearing were found to be more likely to believe that HIV/AIDS can be prevented through hand washing and eating healthy food as well as avoiding hugging, kissing, dirty places and sharing of utensils. They were however less likely to know about infection caused through the use of un-sterilised needles (although not in Nigeria), razors and contaminated blood. In both surveys the discrepancy was explained by the lack of access to health outreach efforts and health facilities because sign language is rarely used by AIDS outreach workers or nurses in the clinics. While the global survey concentrated more on the quantitative measurable data and knowledge of HIV/AIDS it did not state whether more accurate information would change the behaviour of disabled people, expose them to less abuse and decrease the risk of HIV infections. It also does not take cultural grown concepts into consideration and therefore cannot fully explain the cultural influence on the fast spread of HIV and its effect on disabled people.
As the Global survey never included South Africa, there is no data about people with disabilities that can be made accessible in this country. Emily Ntuli and Andrew Dube from Disabled People South Africa (DPSA) however reported similar challenges for disabled people in South Africa (Ntuli & Dube Symposia Dec. 2004) as found by the global survey in other countries. They explained that their people did not have the same access to information due to the lack of disability appropriate material, the assumption of caregivers that they do not need information, less peer education and isolation. Also the access to health services and VTC (Voluntary Testing and Counselling) was problematic because of the long distances to local clinics, the lack of confidentiality and the attitudes of the health workers (Ntuli, 2004). Andrew Dube (2004) explained at the same symposia that people with disabilities can not always rely on the commonly used contraceptives (Gräber et al., 2008). In the case of a physical disability they might not be able to physically use condoms. This applies to both males and females. In other cases medication might interfere with contraceptives. Both representatives made it very clear that HIV/AIDS is a very real problem for people with disability in South Africa and that their needs in this regard are highly neglected by their society. It also became clear that people in areas like KwaZulu-Natal, with a large population of indigenous people, have a different interpretation of disability and that one has to understand these concepts in order to understand the vulnerability of people with disability.
People’s approach and attitude towards disabled people is influenced by their concept about disability. Disability is therefore a cultural construction and its interpretation can have a positive or negative effect on the person. This also affects a person’s ability to protect him/herself from HIV infection. How disability and HIV are conceptualised is the focus of this thesis and the links between the two will be discussed in the following chapters
3 See here the elimination of people with disability in WWII and the Euthanasia debate around Singer in the 1990´s
4 ICF – International Classification of Functions, Disability and Health
5 ICIDH – International Classification of Impairment, Disability and Handicap
6 etiology – US spelling of Aetiology – set of causes or manner of causation of a disease or condition
7 emic - insider view, being the opposite of ethical, which is the ´outsider view´
8 This is often referred to as “western” medicine
9 Vygotsky – German spelling Wygotski
10 Luria – German spelling Lurija
11 WHO – World Health Organisation
12 CP – Cerebral Palsy
13 GPS – Global Positioning System
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