5 Conceptualising disease and disability

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Diseases and disabilities are predestined to become objects of everyday-theories, because they are manifestations of insecure situations. Moreover, they are a threat to one of the most highly regarded goods, namely health, and with this a threat to life itself. It is therefore not surprising that a great variety of interpretations and coping strategies have been developed, particularly in those cases of disability or chronic disease where medicine has little to offer. These interpretations are culturally embedded as well as personalised notions. Studies around the world about lay concepts, often also called “folk beliefs” and the special category of “cultural bond syndromes” (Rivers, 1924;Mechanic, 1982;White, 1982;Simons, 1985;Good, 1994;Turner, 2000), deal with peoples’ perception of health and illness and reveal crucial factors such as pronounced fears of getting infected, attributions of guilt and the need to explain the sense and the special nature of the disease or disability. Beginning with a general definition of disability and a clarification of how the term will be used in this thesis, the following chapter will provide a deep insight into the way people explain disability in KwaZulu-Natal. The focus of this chapter lies within the microcultural and individual experience of disability (McElroy and Jezewski, 2000).

5.1 A concept of health, disease and disability

5.1.1 The social and cultural dimension of being different

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Concepts of health and illness stand at the core of social values and cultural influences because they give expression to many of our fundamental assumptions about the meaning of life and death. Disability within this discourse has been interpreted with different models, as there are the social, cultural and medical versions (compare chapter 2). It has been often argued that it is important, while studying how people in a particular society perceive and react to disability, to know something about both the cultural and the social attribution of the society in which they live. Culture is a term often used in explaining the different ways of handling disability. But what is culture? Helman (1994), reflecting on various definitions, postulates culture as “a set of guidelines (both explicit and implicit) which individuals inherit as members of a particular society, and which tells them how to view the world, how to experience it emotionally, and how to behave in it in relation to other people, to supernatural forces or gods, and to the natural environment”. Culture in this sense provides people with guidelines to understand the world they inhabit and how to live within it. In the context of disability, cultural imaginations about an abnormal condition help to understand the condition and at the same time these notions can stereotype people with disability. As culture is not part of the natural world, so it is learned through the process of enculturation, the acquiring of a “cultural lens” through the process of growing up, and acculturation, the process of incorporating other attributes of a larger society.

The individual experience of disability, however, differs very much and there is a difference in the perception of disability between the people with disability and those without. This experience is conditioned by the way people behave towards the abnormal feature. Kleinman and Seeman (2000) use the term “experience” to describe the “inter-subjective, felt flow of events, bodily processes, and life trajectory which always takes place within a social setting. Experience is the outcome of cultural categories and social structures interacting with psycho-physiological processes such that a mediating world is constituted”. Cultural concepts of illness and disability experiences have taken a while to be accepted within the medial world. One of the first branches to incorporate the cultural concepts was the mental health sector. Cultural specification has attained a level of formal recognition in the field of medicine through the notion of cultural bond syndromes. Cultural bound syndromes are those types of disease or syndromes which can only be found in certain ethnic groups and are related to the local value and belief system, anorexia being one such example (Simons, 1985). In the mental health field the cultural influence has therefore already long been accepted and even found official recognition in the medical classification system within diagnostic canons like the DSM-IIIR or the DSM-IV34. It is therefore also not surprising that the results of Ethnography and the more political discussions around the field of disability studies have been recognised by international bodies like the World Health Organisation as an important tool in the design and analysis of successful strategies for intervention in the area of disability.

Over the last four decades, a gradual shift in the conceptualisation of health and disability from a medical model towards a combined model of disability has been carried out. The focus has moved away from a diagnostic based approach and towards a deeper understanding of the phenomenon of disability. This pays tribute to the realisation that a certain feature does cause different reactions in different social and cultural environments. On May 22, 2001, after nine years of international revision, efforts co-ordinated by the World Health Organization (WHO), the World Health Assembly approved the International Classification of Functioning, Disability and Health (ICF) (WHO, 2002).

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With this classification the world managed to synthesize the medical and social model of disability. Up until then the medical model viewed disability mainly as a feature of the person caused through disease, trauma or other health conditions which required professional medical care. Disability based on that model called for medical treatment or intervention so as to “correct” the problem within the individual. On the contrary, the social model saw disability as a socially-created problem and demanded a political and social response. Disability in this understanding is caused by physical barriers, personal attitudes and other features of the social environment. With the ICF both models were integrated into one “bio-psycho-social” model and this has paid tribute to the complex phenomena of disability (see figure 5.1).

Disability is now understood as “a complex phenomenon that manifests itself at the body, person or social level. According to this model these three dimensions of disability are outcomes of interactions between health conditions, other intrinsic features of the individual and extrinsic features of the social and physical environment” (Üstün et al., 2001). The WHO model will be the basis of this thesis, as it sufficiently deals with the complex construction of disability and it is possible to explain the different reactions to the phenomenon of disability in relation to the social and environmental context.

Using the WHO model (see feature 5.1) a certain feature (body structure) like Albinism, can limit a persons activities. For example it would be the time one can be exposed to the sun without special protection. Provided the affected person has access to the necessary creams and lives in a country with less sun (environmental factors) and in the case of visual impairments is offered the appropriate visual aid, then he/she will hardly feel any consequences of his/her disorder. This will be very different in a hot, sunny country, where the person is not provided with the necessary aid. The person might not be able to participate in many every day activities as he/she needs to stay out of the sun and might even suffer from loss of eyesight.

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Feature 5 1 ICF Model of disability (ICF intr o duction guide p. 9)

If the cultural interpretation in a country stigmatises Albinism, however, then the person might experience exclusion to an even greater extent and be denied the opportunity to participate accordingly. Stigmatisation is usually based on presumptions about the affected people. These presumptions and the following reactions are often some of the reasons that make people with disability vulnerable to HIV/AIDS.

The model also includes personal factors like one’s own attitude and the limits a person can set on him/herself. This could be caused by a lack of confidence or the adoption of the cultural interpretation of being useless because of the disability. Also the feeling of loneliness and refusal can cause people to develop attention seeking behaviour, which in turn can be exploited by others. This exploitation, especially when it occurs in a sexual sense, makes people with disability vulnerable to HIV/AIDS.

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Extending the model one can also explain how a certain feature (body structure), that might not even be a disability in a medical sense, can be negatively interpreted and cause exclusion of the affected person. Depending on the cultural circumstances, features like red hair, skin problems or a certain skin colour have been described to have such effects. People react according to their Subjective Theories about the condition.

In the tradition of “meaning centred” medical anthropology (Good, 1994) however, one must critically remark that the model includes a mind-body dualism, that is alien to indigenous knowledge in Africa. Many anthropological writings, particularly those written in an “empiricist tradition”, are based on the separation of body and mind (Good, 1994). Soma (the body) is seen as juxtaposed to psycho, and disease as well as disability are attributed to the body. Contradicting this assumption, Good argues that “for the sufferer the body is not simply a physical object or physiological state but an essential part of self … It is at the same time a disordered agent of experience” (Good, 1994). Merlau-Ponty analyses, in this context, the body as the ultimate medium of experience and thus of our understanding of the phenomenal world. ”Sickness subjects man to the vital rhythms of his body” Merlau-Ponty wrote (1962). Mind and body are therefore not juxtaposed to each other. In his phenomenological view, our body and its sensory functions correlate with each other. Indigenous knowledge often accounts for this correlation and therefore their cosmology does not know the separation of body and mind. A similar argument comes from the disability studies. Dederich (2007) wants to include Embodiment into the theory about disability and in this way extend the bio-psycho-social model of the WHO. The concept of embodiment in this connection is used to press the point that disability is always a physical and social experience. Physical and social experiences are to be seen in mutual reference to each other, without prioritising one side chronologically, ontologically or logically.

For the reader, the WHO model is used to clarify how disability is caused through social interaction and environmental settings. In addition to this I will discuss disability as an embodied experience (Good, 1994) and the cultural issues emerging from that. For the emical understanding of disability another model will be developed further down. In this context it is necessary to look at the features, that decrease the level of activity and participation.

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In Cloerkes (Neubert and Cloerkes, 1994) cross-cultural analysis of disability, comparing 400 different cultural studies, those features are called “Andersartigkeit” - abnormalities – (see appendix 11). He categorised reactions to certain abnormalities as universal (everywhere the same), inter-culturally variable, culturally uniform (in one culture the same) or intra-culturally variable (Neubert and Cloerkes, 1994). This may largely be due to the choice of Cloerkes’ samples, which are all studies conducted before 1980. The development of culturally diverse societies have, however, exposed people to a number of interpretative models, so much so that today’s results would be different, as cultural settings have moved on and different cultural explanations have hybridised to a more diverse understanding of the world. Studying my data I would rather suggest, that in KwaZulu-Natal reactions to abnormalities are inter- as well as intra-culturally variable and that people interpret and react according to their personal notions of disability. This notion however, is influenced by the person’s cultural background and the traditional explanatory models of the cultural group as well as personal experiences. Interpretive studies in medical anthropology have, particularly in the 80´s and 90´s, focused on the latter and created the term “embodied experiences” as the basis of illness representations. In these studies it is understood that history and social relations leave their “traces” in the body and as Pandolfi (1990) writes, “this body becomes a phenomenological memoir that opens a new way of interpreting distress, suffering and illness”. Studies of the phenomenology of disease experience and “embodiment” have become ways of investigating the relation of meaning and experience as a subjective phenomenon (Frank, 1986;Wikan, 1987;Ots, 1990;Good, 1994). Researchers, however, often experience difficulties in representing suffering and subjective experience in ethnographic accounts as well as the relation between this experience and the local moral worlds (Kleinman and Kleinman, 1991;Good et al., 1992).

Even though the WHO as well as Cloerkes model accurately explain that the interpretation of a feature leads to a certain reaction, they cannot explain why and how people interpret this feature in the way they do. The link is missing. Cloerkes (1994) even criticises this about his own study. He presses the point that the particular weakness in his study, is that they did not distinguish between the interpretation and the reaction to an abnormal feature. This link was missing.

Feature 5 2 Missing link in the interpretation process of abnormal i ties

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Anthropological studies about “lay concepts” or “folk beliefs” have contributed to an understanding of this link in connection with diseases35 (Good, 1994). Early anthropological studies and studies in the empiricist tradition (Rivers, 1924) have used the models of belief and illness behaviour in this context. Disease and disability in this tradition is understood as part of nature, external to culture. Differences form the rationality of the physician and are seen simply as the result of lack of information or “superstition”, through which “false belief” unfolds. Belief is seen as a false proposition, juxtaposed to medical knowledge36 causing adaptive strategies and choices that might contradict “rational” behaviour. Belief in this context served as an unexamined proxy for “culture”. Correcting these “false beliefs” is and was the top priority of public health in the so-called “western world” as well as in the colonies (Turner, 2000). The offensive language and the arrogant way of presenting biomedical knowledge as superior has caused problems up until today, where attempts are taken to acknowledge indigenous knowledge37 (Ashforth, 2005). However critically one analyses these early studies (Good, 1994) they have contributed by explaining why people in a different cultural context react to the same biomedical phenomenon differently. By the same token they can not explain how these ´beliefs´ evolve and how they fit into the broader cultural context. Going one step further, cognitive anthropology has taken the attempt to understand lay concepts from an indigenous perspective. Frake´s classic study among the Subanun of Mindanao was conducted without the reference to biomedical categories. He purely argued that the “emic” understanding of disorders and diagnosis is a “pivotal cognitive step” in understanding lay concepts (Frake, 1961). Studies following his tradition identify indigenous illness categories and use these for further studies (Fabrega and Silver, 1973). An important step for cognitive anthropology was also the evaluation of indigenous knowledge as such and with this bringing it out of its dubious corner of “belief systems”. Cognitive anthropology also found that the causation is often more closely linked to treatment than are the symptoms (Good, 1994). This proved to be an important discovery as it gave a deeper explanation why people interpret disease and disability differently from the biomedical view, which interprets disorders based on the symptoms. As it will be shown later, the notion of disability and disease in KZN is also deeply affected by identified causes. Cognitive studies of illness representation are also serving increasingly powerful critics of many generalised accounts of health representations and assumptions that “cultural beliefs” are consensual. With other words, illness representations are influenced by culture, but different people can come to different conclusions.

Some authors also see illness and disability representations as culturally constituted realities (Good, 1994). In the juxtaposition to the empiricist tradition, they placed the relation of culture and disease/disability in the centre of their analytical work. Good argues that disease in this tradition is “not an entity but an explanatory model... Sickness is constituted and only knowable through interpretive activities” (Good, 1994). In this interpretation people have, as Good calls them, developed “semantic networks” (1994). These “constitute illness as a syndrome of meaning and experience.” His research also suggests that these “networks of associative meanings link illness to fundamental cultural values of civilisation, that such networks have longevity and resilience, and that new diseases (such as AIDS) or medical categories acquire meaning in relation to existing semantic networks” (Good, 1994). Beside semantic networks, the already mentioned “embodied experience” influences a persons interpretation of disease and disability. How these “semantic networks” and “embodied experiences” unfold themselves has to be discovered for every cultural background, community and individual. To understand how the individual acts in these networks an excursion into psychology seems appropriate at this point.

5.1.2 Social Representations and Subjective Theories

Dederich (2007) argues that the disabled body is not a physical object but rather the result of cultural attributions and social reactions. As discussed in chapter 2, the theory of Social Representations and Subjective Theories about health and disease may be used to explain, how people interpret disease in accordance with their cultural heritage, their individual situation and their life experiences. Due to the fact that disease and disability are closely related to each other (Neubert and Cloerkes, 1994) I have chosen this theory to explain the interpretation process of culturally relevant, abnormal features. Those features that are regarded as being different in a certain cultural context, I will call abnormalities. Abnormalities that effect a person’s social interaction shall be understood as disability. My particular interest in this regard is focused on the notions people have about abnormalities, what attribution they give to the causation and how these attributions evolve.

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In general, attributions are the result of an interpretation process (Hewstone and Augoustinos, 1995). This process is initiated through confrontation with an abnormality. Only if an abnormal feature is noticed as ´out of the norm´ the need for explanation will emerge. Room labels this level “thresholds” (2001). In their cross-cultural analysis, Room (2001) demonstrates that there are considerable variations between cultures and the set threshold at which a behaviour or condition is defined as problematic or may not be noticed at all. Thresholds can also exist on various levels and, as the authors argue, there is a threshold for a condition to be noticed and another one for it to be classified as a disability. The threshold level might also be influenced through functional aids, environmental modifications and the social acceptance of diversity. What might otherwise be a big problem, can under different social settings, be only a minor issue. Thresholds are, in other words, socially and culturally influenced and they in return influence the need for explanation and with this the need to build up Subjective Theories about a condition.

Subjective Theories are defined as an aggregate of thoughts about the self and the world. They are theories explaining phenomena around us with an implicit argument structure, that is comparable to scientific theories (Groeben and Scheele, 1982). These theories help us to interpret phenomena, provided we need an explanation. This need only occurs when we notice a phenomenon or condition as unusual or threatening. The threshold for this can rely on different levels of intensity and values. In social settings that are predominately influenced by the scientific revolution, the symptoms and physical characteristics of a person will determine if a disease or disability is noticed or not (see feature 5.3). In societies where the magical world and myths still play a substantial role, Social Representations of the causes of disease and disability may play a stronger role in the interpretation process and overshadow the actual symptoms of the condition.

Feature 5 3 Subjective Theories about a b normalities adopted from Becker (1986)

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In the interpretation process certain determinants play a role. Personal life experiences (also embodied experience) as well as the necessity for an explanation (what happened, why me or why him?) influences if and how a person looks for answers. In the attribution process people are influenced by a variety of variables that depend on their social, cultural and educational background. People could explain abnormalities with a biomedical, spiritual, magical or a common approach and so find their individual answer as to why a particular person has got a particular feature at a particular time in his/her life. This individual answer is a Subjective Theory. Subjective Theories are influenced by Social Representations about the conditions. In other words the notions about a condition that are common in the person’s environment, influence to a large extent the person’s own theories about a condition.

 

Referring to Moscovici, Social Representations are certain, re-occurring and extended models of images, notions, beliefs and symbolical behaviour, which are common in a certain social community (Moscovici, 1995). They are a system of values, ideas and behaviour that wants to create order and enable communication. Under a more static approach, Social Representations can be seen as theories that summarize and bring order into a particular topic (e.g. women are inferior). As a consequence these theories offer common value systems and widely accepted behaviour patterns (women do the minor work, while men are the boss or manager). Under a more dynamic view, Social Representations can be seen as networks of loosely connected concepts, metaphors and images which are, because of their loose connection, more flexible than scientific theories. People carry these concepts, metaphors and notions with them and base their interpretation of the world on them, often even unconsciously. Moscovici in his interpretation of Levi-Bruhl’s work has postulated that there are Social Representations in modern and pre-modern (they use the word ´primitive´) cultures but that they differ in their social significance. According to Moscovici the differences lie within the following few points.

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The point that Moscovici wants to press with such a comparison is that Social Representations in pre-modern and modern societies differ, that they value different aspects differently, but that this does not mean that the one is inferior or superior to the other.

Social Representations are often seen as the basis for social attributions and Subjective Theories (Hewstone and Augoustinos, 1995). I want to use them here as a tool in explaining the link between the threshold of noticing abnormality and the attributions that are connected to disability.

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Every culture has culturally and socially accepted explanations or Social Representations. Based on these Social Representations and a person’s individual situation, Subjective Theories are formed and assumptions about characteristics and causations emerge. These assumptions or attributes focus on personal or situational factors (Hewstone and Augoustinos, 1995). As Social Representations are influenced by culture, it is not surprising that Hewstone and Augustinos concluded that people in ´western´ cultures tend in general to overestimate the individual factors (1995).

Feature 5 4 Inter-relationship between Social Representations, Subjective Theories and Attrib u tions

Both authors researched Social Attribution in `Western Societies´ or modern societies. As these societies tend to be more individualistic it is not surprising that attributions to disease and disability tend to be on a more internal, personal level. The attribution process in another cultural context, particularly one that focuses less on individual development and more on the ´survival of the group´ or has a rather holistic approach to life, could look very different. The so called “Attribution-mistake” could fall on the other end of the spectrum.

5.1.3 ‘Western’ versus ‘Traditional’ concepts

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In medical anthropology the ‘western” and ‘traditional’ world are often shown to oppose each other, the one being scientific and the other spiritual or magical (Finkenflügel, 1999). The dualism of western versus traditional medical concepts is problematic for many reasons. It forces people to choose between the two and does not show the diversity that medical systems have to offer. However, in the time of globalisation and cultural diversity, it is debatable if there is still such a clean cut between western and traditional medical systems and if they are really as opposing as so often shown. Turner (2000), for instance, describes that even though the European Renaissance lifted the myths of many diseases, medical notions still continued to evoke and be connected with paradigms of moral behaviour and a search for the answer to the critical question “why me?”. This question is often thought to belong to pre-modern culture only. For this very reason it is often argued that even though Africans will consult a ‘western’ practitioner for symptom treatment, he or she might also consult a traditional healer to look behind the reason of the disease or disability (Nattrass, 2005). In modern times, however, the western world has also posed this question, which shows that we are not so different after all. The opposite is the case if one uses Moscovicies theory of Social Representation and his explanations about “modern” and “pre-modern” (primitive) cultures. The so often emphasised difference between the two “blocks” of culture is probably not an absolute one but rather a gradual one. As described earlier (see chapter 5.1.2) people in pre-modern cultures have fewer problems with incorporating contradicting elements in their theories about disease and disability. Theories are more emotionally filled and the causation of the condition is attributed with more meaning than the symptoms. As a result people do not only want to overcome the symptoms of a condition, but they also want to know why they were affected at that particular time. People in modern cultures will also ask such questions, but to a lesser extent. In addition to that, people in pre-modern societies will not see it as contradicting to consult a traditional healer and a medical doctor as they attribute different practical skills to the two professions and therefore look for different advice from each.

In addition one can argue that in the African medical system, different experts exist for the various diseases in the same way as they do in the so called ‘western world’ (Bichmann, 1995). There are the bone readers, the spiritualists, the shaman (herbalist, sangomas) and witchdoctors. Each of them could also specialise in certain problems and diseases. In the so-called ‘western world’ one also meets various specialists like general practitioners, psychologists, physiotherapists, alternative health practitioners and many others. The difference here is that these practitioners are professionalised and their services and treatments have to be approved by science38. Traditional healing practice, also often referred to as Indigenous Knowledge Systems (IKS), have been undermined under the colonial and apartheid regime in South Africa. The present government has undertaken attempts to uplift its status. This however is often done through pressing the point that IKS is different from other medical systems. The use of the term IKS in post apartheid South Africa is more than ironic. As Ashforth (2005) points out, the term and its surrounding programmes postulate the notion of cultural distinctiveness that the architects of apartheid would have found most agreeable.

Recognising this diversity in ‘both worlds’ one must press the point that a pluralistic understanding of health notions seems to be more appropriate. Recognising this understanding Bichmann speaks of “medical pluralism” and “parallel medical systems” within one culture (Bichmann, 1995). One therefore needs to appreciate that people use a number of different concepts, that are available in their contextual circumstances and that these concepts influence their “semantic networks” (see Good above) and with this ultimately the individuals Subjective Theories about disease and disability. One could also speak here of a hybridising of culture. This approach seems especially appropriate during a time when people are exposed to different ideas. In the new South Africa you cannot categorise people as belonging to a modern or pre-modern society only. People have moved on and in some ways live in ´both worlds´. Notions about disease and disability are therefore built up on the basis of various knowledge. Subjective Theories are influenced by scientific as well as magical Social Representations alike.

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Exploring traditional African thought, especially that of Zulu-speaking people, writers such as Callaway (1870), Krige (1944), Ngubane (1977) and Leclerc-Madlala (1999) reconfirm that imaginations about misfortune involved the question about how and why. The answers to the “how” question are usually based on common sense and empirical observation. For example, a person is run over by a car and as a result is therefore left disabled. A person has sexual intercourse with many people and therefore gets infected with HIV. People do not necessarily dispute these immediate causes of misfortune, but do look for a deeper explanation and the answers to the “Why” question. The question is however about: Why me?, Why here?, and Why now? The answers to this are slightly more elusive. I want to press the point again that people in both the so-called ‘western’ as well as in the ‘traditional African’ societies ask these questions. The difference lies in that African people have different answers to these questions. So-called ‘westernised’ people might tend more often to search for a scientific explanation or look for an answer in god, the concept of stress or simply astrological attribution. African people also have other choices, which will be described later.

During my field research I have found that most people in KwaZulu-Natal roughly categorise the cause of disability into two groups being either natural or spiritual (also supernatural see feature 5.5). Natural causes are understood to be everything that happens without the influence of witchcraft, a superhuman being or a spirit. Disability caused through spiritual influence will be explained with the latter.

These rough categories are very similar to findings by some of the first medical anthropologists like William Halse Richter, who categorised interpretations of diseases into “magical, religious or naturalistic” (1924). Richter’s magical and religious categories may as well fall into one group as they both assume a supernatural being or power. It is interesting to note that the first anthropologists were describing the magical world of indigenous people as superficial, while they were “blind” to their own magical interpretation, which they named religion in the attempt to distinguish themselves from people that they believed to be primitive.

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Diseases or disabilities of a spiritual or supernatural origin are traditionally described as “African diseases” and it is general knowledge that they can not be healed with any “western type of medicine” (Ngubane, 1977). Interestingly enough it is not the origin of the substance that makes it an African medicine, but rather the person who prescribes the so called “umuthi” and the fact that certain rituals have to be followed. Some of these substances may even be imported from China, but prescribed by a traditional healer and hence it will be considered an African medicine.

Feature 5 5 Diversity of Social Representations about the cause of abnormality and/or di s ability

Depending on how the cause of the disability is interpreted, a person will seek advice from different practitioners. If the cause is interpreted as being natural then the person will approach a biomedical doctor or a herbalist. The latter is commonly regarded as being a traditional healer. If the disability is however believed to be a result of witchcraft or neglecting traditions then a person would consult only a herbalist or alternatively a sangoma. Herbalists also often specialise in certain diseases and disabilities. If the disability is believed to be caused by witchcraft or spirits then one would consult a shaman or sangoma (a traditional spiritual healer). Often Africans visit their local herbalist first to find out what may be the reason for their suffering and which person they should consult. In the case that the disability is believed to be caused by a curse of god one would not necessarily go to a herbalist and rather choose a church and prayers.

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In KwaZulu-Natal the concept of being vulnerable or dangerous influences the explanation of the causes of diseases and disabilities. Vulnerability is often associated with pollution, a stage where a person is seen as dangerous and weak at the same time and is often associated with the female production system, birth or death. Precautions have to be followed, strengthening “umuthi” can be taken and protecting rituals need to be conducted.

I have found that people follow different routes in their interpretation process of abnormalities and that hardly any presumptions can be taken as to how a person will react under certain circumstances. I rather argue, that a person chooses a way to interpret an abnormality/disability in accordance with the Becker model (see figure 5.3). It is therefore also possible that a person approaches traditional as well as biomedical health care for the same condition, hoping the one would deal with the spiritual causes and the other cure the symptoms. Besides the natural and spiritual interpretation of disability there is a growing number of people that base their interpretation of disability on a social model. They are usually well educated people and often disabled themselves or work/live with disabled people. These notions and interpretations, thus Social Representations, shall be described in the following chapter.

5.2 The notion of disease and disability in KwaZulu-Natal

5.2.1 The notion of natural causes

In regarding nature as a factor in causing diseases and abnormalities, Zulu speaking- people see natural forces operating on different levels. Ngubane (1977) describes two categories. The first deals with the symptoms and the body itself, while the other looks at the role of the environment. After reviewing my data I would like to add three further categories - family relations, sexual habits and a biomedical explanation. The interpretation can shift from one category to another, if the first explanation no longer seems appropriate. Important for people in KwaZulu-Natal is however always to treat the symptoms as well as to understand why a person is affected by a certain abnormality at a particular time. Treatment of body and soul go hand in hand and are seen as a unit not juxtaposed to each other. The five categories of natural diseases will be described below.

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1. ´Umkhuhlane´ - Diseases of general character

Maybe I should have known at that time what is measles, because I’m telling you thousands, millions of women like me who have children today, they don’t know how much damage the measles can do to a child. Because they never experience it. They just think it happens and goes away by itself. And they don’t know, even I today don’t know what are the measles. I just know it is a disease that can cause a person to be disabled. (Interview 2, mother of child with severe learning difficulties)

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Most diseases in this category are referred to as “umkhuhlane”. This term means an “illness that just happens” ranging from serious epidemics like pocks to common colds. Ngubane explains that “Zulus believe that what is natural and alive also ages and dies and therefore has an inherent quality of breaking down”. Malfunctioning of certain organs, like an excessive accumulation of the bile (inyongo), can disturb the whole system and cause headaches and debility (Ngubane, 1977). Diseases in this category are seldom associated with disability and if a young person does not fully recover from such diseases then other powers like witchcraft are believed to have played a role.

Often diseases in this category are also associated with seasonal changes and stages of growth in infants (i.e. measles and mumps) and are seen as being contagious. Concepts are often so general that hardly any explanation is given. Some people seem to also transfer the concept of contagiousness on to disabilities and are afraid of the possibility of becoming infected with the disorder themselves. It is amazing that even staff that work in the department of health can have these misconceptions.

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Health services, some people think it is infectious to play with people who are having disabilities, especially people who are working in the department of health. Sometimes some of them think you are going to infect them with what you have. That is some kind of a myth some of the people are having. (Interview 16, man with albino condition)

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Should such a disease end in a fatality or cause a disability then other influences are thought to have played a role. In the case of the mother with the measles infected child she was able to gain support as long as the child was in hospital. At this stage the disease was interpreted as being of a general nature. However as soon as she left the hospital and the permanent character of the disability became evident, then the father and his family rejected both the mother and the baby. During the interview it became apparent that the family had now explained the disability as a family related problem on the mother’s side, called ufuzo.

2. ´ufuzo´- Family related explanations

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My parents they have no problem, they submit to my kid, they take care nicely, but my other parents especially my father in law, they are talking a lot, lot, lot, they are asking questions like: … Since I have been here I had no disabilities here. This is the first time. Now you tell me the truth about this child…, this child where have you got it from?… Now … the father in law took the lobola, just because the child did not talk, she did not do the normal things. He said: Now this is not our child, now I am going to your home to take the lobola back. (Interview 5, mother of severely disabled child)

One of the most common interpretations of mental and physical disabilities is ´ufuzo´. A disability that is obvious from birth on or has been acquired shortly after is said to be inherited. In most cases the father, or his family, will reject the child with the explanation that the child must be from another man, as they have no family members with disabilities. As a result the mother and child can be rejected and sent back to live with the mother’s family. In the case of a married couple the lobola, the African bridal money, could even be claimed back (Interview 5, see above).

The notion of ufuzo also causes many problems for people with disabilities as they are often not believed to be capable of having healthy children. A notion that is also common in Europe and America (Seymour, 1998). This however makes it very difficult for people with disabilities to find a permanent partner to live with. As a result they are often denied the opportunity to develop a stable, long term relationship. To illustrate this I would like to end this section with a quotation from one of my interview partners who put all his frustration right in front of me and asked:

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Would you go with a disabled man? No, no one wants to be together with a disabled person. We are not attractive and we do not get healthy children. Only if you have money it will change. But then this is not the true love. They only love you for the money.” (Interview 9, man with spinal injury)

3. ´imihkondo´- Environmental causes

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I think the English word is track or trail. Imikhondo is something that is placed on your track. It could be your driveway, gate door or path to your hut. It can make you feel very tired and weak. You can get swollen legs with all sorts of complications even a stroke or death. If it has happened to you, you can call a traditional healer (Nyanga). (Interview 20, traditional healer)

Many miscarriages, stillbirths and infantile abnormalities are associated with the undesirable elements in the environment usually contracted by a pregnant mother and then affecting the baby. Certain animals, especially wild animals, are believed to leave dangerous tracks, “Imikondo”. They can be left on the floor or in the air. Often these tracks are associated with witchcraft and someone that had purposely planted a substance in a person’s pathway so as to ill treat them. These tracks are usually invisible and one can contract a disease or disability by accidentally stepping over or inhaling them. Disabilities that are associated with environmental dangers are therefore often identified by their cause, which is usually a mystery, rather than by the symptoms. In the example from the previous section the grandfather of the disabled child could only accept the child through the explanation of a terrible accident. He believed that the mother had stepped over dangerous “imikhondo” during her pregnancy. This African explanation leaves the grandfather the option of sacrificing to the ancestors and asking for their protection and help. The ancestors are believed to have the power to intervene directly and also to protect them from misfortune. If the imikhondo is caused by witchcraft, a sangoma can give the affected person something that they can use to protect their home. Whoever practices the witchcraft can then suffer from the consequences of their own evil doings (Interview 20).

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Some people are considered to be much more vulnerable to environmental dangers than others. Infants and polluted people are believed to be especially vulnerable. They, and in the case of an unborn the mother, must be especially protected so as to minimize their contact with imikhondo. Traditionally a woman will go back to her mother’s home when she is six months pregnant. After birth the father is not allowed to come and see the child and if he does, he is only allowed to “stand in the doorway” (Interview 3). In this way he cannot carry any imikhondo to neither the child nor the mother and by the same token the mother’s ritual pollution can not become dangerous to him. It is important to note that human beings can be carriers of track components. The “carrier” does not have to be affected themselves as they might be protected well enough. As it is later shown, the system of balance, protection and vulnerability plays a major role in the notion of diseases and disability.

4. Moral and sexual causes

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Many of the diseases that are known are actually sexually transmitted diseases. I have a wife and I am working in Jo-burg as a miner. I will leave my wife in Durban for three, four, five or how many years okay. What happens is that other people who are not working might get into nonsense with my wife so it is possible for me as the husband of the wife to do something on her so that whoever she comes into contact with will have a big problem. A lot of things on that one. People actually die on having sex with someone else’s wife. That one is the big one. There are a lot of things that happen to you. (Interview 9, man with spinal injuries)

Traditionally the union of the sexes is seen as something natural and good and associated with human fertility (Schapera, 1946). Sex is, however, also looked at as something unclean and dangerous and consequently as a source of misfortune. People choose to rather not talk about sexual things and as a result there are many myths around the subject. People believe that they can influence their partner’s sexual habits through drinking umuthi themselves. They could also give their partners love medicine or secretly leave a substance on their genitals so as to severely punish their rivals or even, as the above extract shows, cause death. The umuthi used for such purposes can only be bought through a traditional healer or herbalist as they are believed to be able to deal with “African problems and diseases”. The border between natural umuthi and its combination with sorcery is blurred.

Zulu speaking people distinguish between “General” and “African” diseases. A disease or disability believed to be caused through an “African umuthi” can therefore not be healed by practitioners that are said to use only the so-called western methods. This concept is deeply embedded in the Zulu culture, regardless of the person’s educational background. For instance, one participant, who was a science teacher, went to Hospital to visit his HIV-positive brother. In the same room was a man with a swollen scrotum, which he believed to be caused by an African problem. He therefore concluded that the man had made a mistake by coming to the hospital and said “he should have gone to a traditional healer who understands these things better” (Interview 6). In this instance the participant believed that the disease was caused by the so-called “love medicine.” Generally speaking there is a notion that a man suffering from sexually transmitted diseases caused through “love medicine” needs purification known as cleansing. Purification or cleansing rituals differ in a wide range from masturbation, taking umuthi to intercourse with a virgin child (Leclerc - Madlala, 1999).

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Adultery and moral misconduct is not only believed to cause disease and death. It can also cause permanent damage and disability to children. This is only believed possible if one has lost the protection of the ancestors, who probably do not approve with the morally loose behaviour of their descendants. Ngubane reports a case where a young man, who had been adopted, married and took his “genitor´s” name. This was done against the advice of his relatives, “who pointed out that one does not simply change one’s name without including the ancestors in the process. He soon experienced a number of misfortunes. His first child died. His second child suffered from a disease that makes him unable to use his lower limbs, he is partially paralysed …” The father himself became ill with swollen feet and died at the young age of 32. Both his and his children’s misfortune were associated with lack of ancestral protection (Ngubane, 1977). In this case things could only have been put right again, if the man would have consulted his ancestors with the appropriate rituals. This example serves to clearly show how interlinked medical concepts can be. The relatives of the man accepted the fact that the misfortunes were caused by biomedical means but believed that this was only possible because he had lost the protection of the ancestors through his moral misconduct.

In other cases abnormal body functions, which are linked to moral misconduct, are believed to be reversible. One participant explained that if a child is born normal and after two years becomes blind this could be caused by the mother not telling the truth about the child’s father. Family members will “persuade the mother to tell the truth” and the mother will “feel guilty and confess” (Interview 1). Depending on the interpretation of the disability, the choice of treatment will differ. It is important to note that if a disability is believed to be caused by the mother having lied about the real father, people will no longer feel the necessity to consult a biomedical doctor. Up until the mother’s confession, the child will be seen as a shame and be treated accordingly. This is however different if the cause of a disability or disease is believed to be a result of moral misconduct that has upset the ancestors. A traditional ritual combined with a treatment, which can also be of biomedical origin, will then suffice. It is however also possible that the blindness is interpreted as a combination of facts. For instance, the initial lie about the father causes not only the blindness, but also the loss of protection from the ancestors. The mother would then be asked to confess as to the name of the real father, conduct a ritual to the ancestors and take the child to a herbalist or biomedical doctor.

5. Modern science and biomedical models

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We can say it is a genetic disorder. Where the particular genes do not become able to produce the white colour and then that affects the skin, the skin and the eyes. That is the only thing that is affected in the whole body. With the mental structures it is really not affected, not unless if it was going to be affected even if you are a different colour. Those genes that fail to give a brown colour or a white colour they give this colour which we call it an albinism condition. It is so sensitive to the sun but it is manageable. (Interview 4, man with spinal injury)

An increasing number of people are exposed to biomedical models and explanations about diseases and disabilities. This is often based on knowledge acquired through formal education. It is therefore not surprising that this knowledge is taken into account, when people explain the cause of disability. Words that have their origin in anatomical and physiological studies, like “genes”, “spine” and “brain damage” are used to explain the cause of disability. People that use these kinds of explanations will consult a formally educated doctor or practitioner, if they conclude the problem belongs in this area of expertise. Usually these doctors are said to use western types of medicine.

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People who only use the ´western kind of treatment´ seldom ask the ´why question´. As a result there seems to be less shame and stigma attached to disability and people can move more confidently in public. In the above mentioned albinism case, the person was not hidden at home. This was however typical for his area in an attempt to protect the “white person” and the “luck” that was associated with them39. If people choose to follow the biomedical model then a treatment with protective creams would be prescribed or bought at a local chemist. The person will be seen as being ´normal´ and the disability as “manageable”. It will not then be necessary to perform any rituals. The biomedical concepts are however not always properly understood. One participant who was shot during a raid in the apartheid era explained his story to me. He remembered that he was paralysed as a result of the shooting but claimed that his spine was not injured. As the participant had only sketchy anatomical knowledge, he could explain the disability as having “weak legs” (Interview 16). Even though he tried to explain his injuries in a biomedical context, he did not fully understand the connection between paralysis and spinal injuries.

Most people that explain their disability using the biomedical model are depending on their practitioner’s opinion and abilities to explain the disability, which is very similar to people in Europe (Interview 3).

Diseases and disabilities that are believed to have a natural cause are usually treated with medicine that is thought to be potent and effective in itself. There therefore exists a readiness to experiment and also use the so-called western type of medicine. People do not have to have a biomedical understanding of diseases and disability to choose biomedical treatment. In the African mind it is possible to combine the “western type of medicine” with rituals that have their origin in African tradition. This is similar to the combination of spiritual and medical based treatment that some people choose in Europe. In the African context the identified natural cause of the ‘problem’ is crucial. The combination of biomedical and traditional treatment could be used as a possible method particularly when increased vulnerability is suspected.

5.2.2 The concepts of protection and vulnerability

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For Zulu speaking people the source of good health is not only a healthy body, but also about being in balance with everything around them. This balance is crucial in their concepts concerning health matters. The notion of one’s surrounding includes the world one lives in as well as the world of the dead. Balance is created through taking preventive, strengthening medicine and through rituals that keep the person in touch with the ´spiritual world of the dead´.

Some people are considered much more vulnerable than others. Ngubane (1977) lists people that are considered to be especially vulnerable as: infants, strangers, people who have had a long stretch of time elapse between preventative treatments, and also people who are considered to be polluted. All these people are considered to be weak and vulnerable. They therefore can easily become victims of misfortune and diseases that are of a natural or supernatural cause (compare to figure 5.5).

People can become vulnerable in three ways. They are either newborns and therefore not as yet in balance with the environment, or they are people who are believed to be polluted, or to have lost the protection of their ancestors.

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1. “The ancestors are throwing me away40” - Lost protection from the ancestors

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You know, in the Zulu culture they believe that the mother and the father, they go and speak to god. They protect you, so you must also honour them. If you do not sometimes the bad luck comes to you. Like you get a child with a disability or HIV/AIDS. You know, because you don’t have their protection anymore. Then lets say there is a witch doctor in the street and he does all those things to people that are affected. There are other people that are not affected. It is because these people are protected and you don’t have protection. (Interview 9, man with spinal injury)

Death and birth are special to Zulu-speaking people and will be accompanied with appropriate rituals. People will undergo a mourning period for a dead person or “isithunzi”. After that there will be a sacrificial ceremony that enables the dead person to take their place under the ancestral spirits or “amadlozi”. Another word used is “abaphansi”, which means “those who live down below” as the spirits of the dead are believed to live below the earth. These spirits are responsible for protecting and disciplining their descendants. People distinguish between ancestors who can punish, reward and those who are powerless. A person’s parents and grandparents are the most important ancestors followed by the father’s brothers. These are patrilineal ancestors to whom a family makes most of their sacrifices. Non effective ancestors are those three generations or more removed from the person and people do not usually perform sacrifices for them.

Each child is placed under the protection of the ancestors by means of either a sacrificial goat or cow. Each family member should be released to the “world below” after a mourning period and sacrificial ceremony. If the person that died is the head of the house then a cow will need to be sacrificed. This is needed so as to please the relative, so that he will use his spiritual powers to protect the living. Ancestral spirits are believed to still have their human characteristics and can therefore be both vain and / or angry. Usually it is believed that this occurs if rituals are not followed accordingly. Ancestors can then lose interest in their descendants who then in turn lose their protection and become vulnerable to diseases and disabilities as well as other misfortune.

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If a disability is believed to be caused in connection with lost protection from the ancestors, then the family has the option to sacrifice to the ancestors (Interview 9). It is hoped that the disability will be corrected afterwards. For many people this is an acceptable option, even if the ancestors do not use their influence to reverse the disability. It is believed that the ritual brings the family back into balance with the “other world”, pleases the ancestors and therefore insures protection in the future.

This is especially important for the relatives as it seems to be a way of finding peace and enables them to accept the disability. Feelings of guilt can also be dealt with in this way. The parents do not have to feel guilty anymore because they have made peace with the ancestors. A typical example of this is the previously discussed case of the mother with her disabled child, who was rejected by the family in-law and accused of adultery. As a consequence of the “ufuzo” accusations the “lobola” was demanded back. Only after the father’s family had changed their interpretation of the disability was the mother forgiven. The explanation that the mother had stepped over a dangerous track “imikhondo”, while the ancestors had not protected the unborn, was much more acceptable and several rituals with sacrifices were held. Even though the disability of the child had not changed the family could live peacefully together again and the mistrust and accusations seemed to have disappeared.

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2. ´umnyama´ - the concept of pollution

This is called “Intelezi”. This medicine we use to clean ourselves. Like, when someone you loved is passed away then he is still with you and this is polluting you. This makes you vulnerable. So you need to clean yourselves of that person. In this mixture is ngamathi and umaphipha. You boil it in water and then you drink a lot of this water, so much until you are vomiting. Then the spirits will go away and leave you alone. (Interview 1, woman with hemiplegia)

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“Umnyama”, literally meaning darkness, is for Zulu-speaking people a mystical force which diminishes resistance to disease and increases the probability of misfortune. It is often associated with birth and death. The scientific world knows ´umnyama´ as ritual pollution. Often pollution is closely associated with women, because they are seen as a medium that connects “this world” with the “world of the dead”. People that are believed to be in touch with the “other world” are considered as being either too strong or too weak, excessively clean or excessively dirty. Diviners or spiritual healers are regarded as excessively clean and strong people, who can get into contact with the other world and ask the ancestors for help. A newly delivered mother and a chief mourner41 are regarded as being weak and dirty. They deliver spirits from one world into the other and are therefore regarded as polluted. (see feature 5.6).

A “murderer”; “bereaved people” and sometimes people after sexual intercourse are also considered as polluted, but to a lesser degree (Ngubane, 1977). Different rituals, umuthi or sacrifices can be used to “clean” these people from their pollution. Polluted people are however considered to be out of balance and therefore weak and dangerous. This type of pollution makes you vulnerable and exposes you to diseases and disabilities, if precautions are not taken.

Feature 5 6 The overlapping of “this world” and “the other world” (Ngubane, 1977)

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Of the ´umnyama´ associated with reproductive situations the most common one is the one of a newly delivered mother. She is considered as being dangerous to herself and others, particular the baby and males. The mother’s degree of pollution differs at times during her reproductive cycle. Because the mother is regarded as polluted until she stops lactating, she is vulnerable and dangerous to others including her infant. Infantile death is therefore often explained with pollution. The birth of a disabled child can also be explained in this way. The mother and her family are then thought to have not taken enough precaution during pregnancy. Especially in the last term of pregnancy, a woman’s resistance to dangerous influences is seen as being very low as a result of pollution (see feature 5.7).

Feature 5 7 Intensity of pollution (Ngubane, 1977)

The necessary precautions during this time can differ and were evaluated by one particular participant as “good and bad cultures”. As good she interpreted the protection from “stress”, while she thought that the restriction not to eat certain “types of food” like “eggs” was a bad culture (Interview 1).

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In the case of a disability, pollution is only able to explain the “why me” question. The treatment will differ in relation to the nature of the original cause. In other words, the treatment will be different if natural e.g. “imikhondo” or supernatural e.g. “ubuthakathi” causes are believed to be the reason for the misfortune.

Notions about blood are widely spread in the world. Human blood is in most cultures a special liquid that needs explaining in one way or another. It is a vital liquid that circulates in the body and appears from time to time at the surface when injured, during menstruation or child birth and in some cases of illness. The mystic element around blood provides the basis for Social Representations on a variety of social and medical phenomena. In her cross-cultural study, Helman (1994), identified nine clusters of meanings associated with blood as: “an index of emotional state (blushing or pallor), personal type (´hot blooded´, ´cold blooded´), illness (flushed, or feverish), kinship (´blood is thicker than water´), social relationships (´bad blood between us´), physical injury (bleeding, bruisers), gender (menstruation), danger (menstrual or postpartum blood) and diet (´thin blood´ from bad diet).” For the explanation of vulnerability the relationship between menstruating and danger is especially relevant. In a study conducted by Snow and Johnson low income women in Michigan (USA) were found to attribute menstruation with a purification process. Contrary to that, women in KwaZulu-Natal are seen as partially polluted and dirty during menstruation. This pollution is seen as contagious which is dangerous to the natural world as well as other humans and here, particularly cows and men. It is believed that men’s virility may weaken especially when they would have sex with a menstruating woman.

Because a man can not necessarily know when a woman is menstruating, certain habits have developed in the attempt to protect males from the ´umnyama´ of woman. A man will, for instance, not allow a woman to step over his legs while he is sitting as it is feared that the woman’s ´umnyama´ could affect him.

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In some cases the natural wetness of a woman will also be interpreted as dirty. Referring to this notion Leclerc-Madlala (1999) presses the point that there exists a “deep seated notion” that women are at all times fundamentally dirty and dangerous and are therefore often seen as the cause of misfortunes such as a child’s poor performance at school, extramarital affairs, divorces and even bad weather, drought and heavy rains or flooding. She therefore argues that women are made responsible for spreading HIV and this in turn increases the anger that infected men have towards women. The notion of women being responsible for the spread of HIV has had dramatic consequences for people living in and around Durban. It was only a couple of years ago when a gang of young men were raping and terrorising women in the area of Umlazi42. It was an attempt at revenge in which they tried to deliberately infect women with HIV, because they were the ones that had given it to them (Leclerc - Madlala, 1997).

This fear of pollution through women is still deeply imbedded in the Zulu speaking culture. This is further emphasized by the following statement by one of the participants, who tried to explain why women are so dangerous.

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In fact being a male sometimes ladies are usually a threat, a fall down. Especially these days if you go for this one it means that you usually take a spade and dig your grave. (Interview 17, man with cerebral palsy)

The fear of HIV/AIDS has also increased the demand for clean and pure young women. A woman should ideally be a virgin with a tight, dry vagina. Having sexual intercourse with these kinds of young girls is also seen as having a cleansing affect. The other result of this cultural ideal is however that young girls and women with disabilities are increasingly becoming the victims of rape, while other women will try and keep their genital area artificially dry and tight so as to give their partners the illusion of virginity. Both habits result in increasing the risk of HIV infections and this will be further explained in chapter 6.

5.2.3 The notion of spiritual causes

Whenever a misfortune cannot be explained with a natural cause, supernatural powers are believed to play a role. People have different imaginations about these supernatural powers. In the traditional African belief system, supernatural causes are either sorcery or evil spirits. Most Africans will refer to these types of problems as being of a spiritual kind and African in nature. The cultural mix with Christianity and Islam has also added God, as a supreme being, to this list. This was probably incorporated into the African belief system without hesitation as the imagination of one Supreme Being already existed before Christianity.

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Although not often mentioned, the ancestors can also be a cause of some people’s disabilities. This is however not the most common explanation, as ancestors are usually responsible for protection. People that have lost the protection from their ancestors, have failed to take prophylactic ´umuthi´ or are polluted, are seen as not having sufficient immunity or strength to combat against the harming influence of the supernatural powers. The following section will reflect on these notions.

1. ´Ubuthakathi´ - sorcery and witchcraft

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In some areas if the child is disabled they are just thinking of a umuthi thing, ja witchcraft. Although maybe the child is affected with polio they won’t take the child straight to the hospital they will send the child to inyanga. At the end of the day that particular person will be destroyed because the aid that was supposed to be given while he was still young didn’t take place. Like myself. I am from a big family so in a big family there is that jealousy thing. They say your mother has two boys now so one of them must die at least so there was that tendency. (Interview 17, man with cerebral palsy)

The notion that human beings can absorb dangerous elements from their surroundings, provides an opening for sorcery and witchcraft known as “ubuthakathi”. Sorcerers, who are usually men, have certain skills and deliberately place harmful substances or use spiritual powers to harm people. Witches are usually believed to be women who use substances to harm people. They can plant a substance at a certain point where the victim is expected to be, initiate a ritual at the time of misfortune or use a persons “body dirt”, in some cases even parts of the body, to produce a substance that will harm a particular person. A person that is not sufficiently ´immunised´ or strengthened will then fall ill. Referring to this phenomenon, Jewkes (Jewkes and Wood, 1999) presses the point that the concepts of pollution and sorcery are not causal categories and that they rather form part of a complex interrelationship. Practically speaking, one is more likely to be a victim of sorcery if one is polluted.

The above extract refers to problems found in family relationships. Jealousy is generally thought to be a huge cause of trouble. Rivalling women are thought to be jealous and it is insinuated that they have bad intentions. This rivalry comes from when men had more than one woman, who then “fought” between each other about their rank and influence in the family. If a woman had children, especially boys, then this would increase her status within the family. It is therefore easily assumed that a woman would use dangerous substances to harm her rival. In the above example the aunt was accused of having used umuthi which caused the disability of the participant. Ngubane (1977) describes this kind of witchcraft as day sorcery. Most of the time women are suspected of having used this kind of sorcery. Many people believe that a hospital cannot cope with these sorts of diseases and disabilities and will therefore choose to consult a traditional healer.

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Ngubane (1977) also mentions night sorcery as another type of sorcery that only men use. These men are always using medicine and they are thought to have some superhuman power, like being in two places at one time. It is said that they use “body dirt” like finger nails or sperm to create a substance that can harm a certain individual only. As one participant described, such substances can either be placed in a person’s food or the person is harmed as the substance is being produced, even though he or she might be far away. Madness, insanity and strokes are all believed to be the result of such causes (Interview 8).

Often sorcery is combined with the appearance of an animal. As certain animals are regarded as being messengers from a sorcerer or witch their appearance makes people suspicious of ubuthakathi. Sometimes this suspicion leads people to find the protagonist. One participant shared the cause for his loss of eyesight with me and explained that it was connected to him having suddenly fallen unconscious, while playing with his cousin outside. Just before the incident the participant, who was then only a child, shouted that “there was an animal coming for him”. This indicated to the other family members that witchcraft must have been used and they questioned the second boy for a long time. The latter then confessed that he had been given a bottle by his grandmother and that he was supposed to give this mixture to the child. As the family had a bad relationship with the grandmother she was easily convicted of the misfortune (Interview 6). Because a family member, in this case the grandmother, was involved in the sorcery, it puts this case very close to another type of sorcery that is referred to as lineage sorcery (Ngubane, 1977). This is a special kind of sorcery where relatives work against each other and try to persuade the ancestors to work in their favour and to ill treat other relatives.

Sorcery gives people a reasonable explanation as to why certain types of illnesses or disabilities are a mystery to us and not reversible with medicine that is classified as being of ´western´ type. This also explains why people particularly visit sangomas for treatments of infertility, mental illness and epilepsy. These medical conditions are not reversible so people look for another explanation (Nattrass, 2005). Sorcery and witchcraft are believed to be African problems and therefore they are to be treated by traditional healers. The grief will however only be aimed at the sorcerer, while the affected person and his/her parents will not be held responsible. Whoever gets identified as the sorcerer will have to be careful, as people do still go out on witch hunts (see appendix 14: The Mercury 29.07.2005).

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2. ´Indiki´ and ´iziswe´ - evil spirits

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This one here is called “Izinyamazana”. I use it to chase away evil spirits. For instance when a child cries at night we will treat it with this medicine. It is made out of dried animals like ngowaya, skhava, imvukuzane, myuan and so on. We will burn this ´umuthi´ in the child’s room at night so it inhales the substances and this chases the evil spirits away. (Interview 20, traditional healer)

To understand spiritual possession it is necessary to reconsider the notions about the supernatural world. The already mentioned “World underneath” is thought to be divided into three sections, the unborn spirits, the recently deceased spirits for whom sacrifices are still necessary and the ancestors. Soon after a person dies the spirit is thought to be in an “in-between state”. It will only be able to take its place with the ancestors after an appropriate sacrifice has been made. If this is not done, the spirit of the deceased is said to become an “indiki”, a restless spirit that can take possession of a person. Epilepsy, mental illnesses or disabilities and suicide are often believed to be caused by these spirits.

Ngubane (1977) presses the point that these kinds of possessions are relatively new to the African culture and have developed along with the migrant worker system. Many South Africans die at their place of work and their families do not always know about their death. They therefore do not perform the necessary rituals, which then leaves these spirits restless and in search of their place. It is at this point that they will accidentally enter a living person’s body.

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In such a case, people might first consult a traditional healer, and it is most likely to be the ´common´ herbalist. His procedure for a “mentally ill person” was described to me in the following way. The herbalist will use a plant called ´imfamban´, while interviewing the person. He will move the plant around the person during the interview and assess what happens. If “the person becomes worse or even wild and screams he knows the problem is of a spiritual nature” also called “izizwe” and “has something to do with the ancestors”. He will then use a treatment called “inganbazani”, which is made out of wild animals. The ancestors may also have to be asked for help and be pleased with a sacrifice. If the person does not improve after this treatment he sends him or her to the spiritual healer or sangoma. If the person calms down during the assessment period with the plant “imfamban” he knows the problem is “imimoya” and related to evil spirits that have been sent by someone. He would then have to “send the person straight to a sangoma” (Interview 20).

A common phenomenon is the belief in the “Tikoloshe”. This is supposed to be a little man that only comes to children. It is said to affect children that talk with an invisible person. Evil in nature it can even poison children (Interview 20). A child suffering from this has to be sent to a spiritual healer.

Another type of spirit that is a result of sorcery is usually called “iziswe” and it is believed that a sorcerer has caught the spirit and controls it. Often suicide will be explained through the influence of these kinds of spirits.

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Africans are very afraid of these types of spiritual possessions and will take as many precautionary measures as possible. People who are thought to be possessed will be rejected and a purification ritual is necessary to bring the person back into balance with the environment. One herbalist explained this in the following way:

You need to clean yourselves of that person. In this mixture is ngamathi and umaphipha. You boil it in water and then you drink a lot of this water, so much until you are vomiting. Then the spirits will go away and leave you alone. (Interview 23, traditional healer)

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The special mixture of ngamathi (medicine from a tree) and umaphipha (removed excreta) will only be available through a traditional healer, usually a herbalist. People with mental disabilities and psychiatric disorders are often sent for consultation with a traditional healer. In the case where bewitchment or evil spirits (“ukufa kwabantu”) are suspected to be the cause of the disorder then there will be delays in seeking help from the public mental health care system (Mkize, 2002).

3. The Supreme Being

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Whenever he started crying, my mother used to say `no my daughter you must always think you are special to god` You know, because god left us so many people, who are rich , who can effort, who can give this baby everything, but he has chosen you to have this child. So you must always think that you are special to god. (Interview 2, mother of child with severe learning difficulties)

Shame, she got a curse, maybe she was laughing about people with disabilities, she was laughing at them and this is why she has a baby like this. Maybe she did something, god is cursing her. (Interview 9, CBR consultant)

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KwaZulu-Natal has been intensely influenced by Christianity (Leclerc - Madlala, 1999) and therefore people conceptualise God as being influential when it comes to disability. The notion of god as a supreme being was easily adopted into the African way of thinking, because the traditional Zulu cosmology already included a supreme being uMvelinquangi (the first being) and inkosazane (Princess), who were believed to live “high above” (Callaway 1870, p. 1-5;Krige 1968, p. 180). These old images are still part of Zulu cosmology in rural areas today and also in agreement with the Christian concept of God. In my first feedback discussion with a DPSA member, who had moved into the city of Durban, she remembered that she used to build a little garden for inkosazane in spring time. This would be done to please the princess and ensure good crops, more cattle and healthy babies. The princess can therefore also be seen as a goddess of fertility and fortune. Other than this uMvelinquangi and inkosazane seem to have very little affect on the day-to-day life and health of people, as traditionally the ancestors are held responsible for this. They are thought to be the messengers between the living and the supreme beings and are therefore more important in Zulu cosmology. Here lies the main difference from the concept of the Supreme Being God, as God does not need ancestors to communicate with the living world, “he” can influence a person’s health directly and chooses prophets to send his message to earth.

Depending on the person’s point of view a disease or disability will be conceptualised as being a “special task” or a “curse”. The notion of the punishing God seems to be widespread and people with disability or their parents therefore often experience stigmatisation. This in return can influence a family in such a way that they will then try to hide the disabled member of their family (Interview 12, 15).

Hiding of people is more common in rural areas, as the chances are higher that the disabled family member stays undetected by other community members. Through a widespread CBR (Community Based Rehabilitation) system, available primary health care (95% coverage in KZN) and government health workers, these cases are becoming more and more rare in the new South Africa. There are however still not enough community workers to eliminate this problem completely. Even if the person with the disability has been identified, it does not mean that he or she will then automatically be able to participate in the community, because the disability will still be seen as a shame. Also parents and family members of disabled people are often worried about their safety. One interview participant, a community worker and occupational therapist, explained that a large number of parents are worried that their disabled children could be abused, while they are absent. As parents in rural areas do not necessarily have someone to watch over their children while they see to other things, they will lock their children inside their hut. Unfortunately with the open fires inside there have been accidents (Interview 13).

5.2.4 The social concept of disability

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For me a disability means there is a lack of access that is because a lot of disabled people are physically challenged. There are limitations, you know. When I think of disabilities, there are many disabilities. There are mental disabilities, there are physical, blind and all those people, if there were opportunities and those were really helping us to overcome our dysfunction, like I have the computer. (Interview 1, manager of DPSA KZN)

In addition to the physical explanation of disability some people and especially people with disability that are organised within self help groups, have developed another way of explaining disability. The social side of the phenomenon of disability will be taken into account and barriers will be explained with a lack of access to aid and with negative attitudes from non-disabled people. As described in chapter 4, the lack of general facilities makes it difficult for people with disabilities to access buildings and facilities, make use of the transport system and communicate with officials. They perceive this as a major barrier and hold it responsible for their exclusion from society. People with disability also experience different attitudes from non-disabled people. They are often seen as being incapable and in need of help. They are also often limited in there decision making and participation in society, as people quickly conclude that because of a certain problem, like for instance blindness, a person is not capable of doing anything and can therefore “not decide” for himself or herself (Interview 16).

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In my interviews the problem of attitudes was a re-occurring theme. These negative attitudes can also be described as stigmas. Stigmas are in general understood as an attribute that triggers social discredition (Gill, 2001). The social implications are the denial of privacy, superficial acceptance and the status of being a non-person. The latter, in particularly, is often experienced in the field of sexuality, where people with disabilities are often pushed aside as asexual and not capable of a relationship.

While rereading my data I was also able to identify Davis’ three stages of overcoming stigma as: fictional acceptance, breaking though and institutionalisation of normalised relationships (Davis 1961, p. 127). In the first stage, “fictional acceptance”, non-disabled people treat people with disability superficially as equals. This was confirmed by a female participant who described how she was accepted during meetings as a representative for people with disabilities by the local women group, but was excluded from participating as a woman in the same group.

 

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Davis describes the second stage of “breaking through” as the stage when a person with disability discloses sufficient personal information to challenge stereotypes and encourages the non-disabled person to see the affected person as somebody with the same interests and perspectives. I would place most of the better educated participants in this category. The participants described how they looked for “opportunities to overcome their dysfunction” and “approached communities” so the community members would better understand disability. The main barriers to break through were predominantly physical barriers and lack of aid. Disability in this context was seen as “lack of aid”, “limitation”, “meeting barriers” and to be “physically challenged”. Only very few advantaged people in KZN reach the last stage of “normalisation”. Most commonly this depended on financial terms. In my sample I would categorise one businessman, one regional manager and one person that had inherited a sufficient amount of money to be in this group. In their individual experience they would see themselves “as not being disabled”.

Disability organisations like DPSA (Disabled People South Africa) try to make their voice heard and help change living conditions for disabled people. On a national level43 there is already a shift that recognises disability as a disadvantage. Documents like NIP (The National Integrative Plan) or the Inclusive Education Policy, known as the White Paper, have been written to change attitudes in institutions and overcome barriers. The process is however slow and often necessary aid is lacking, so people still experience great barriers. The manager of DPSA explained that there is a lack of qualified administrative staff on a provincial level, which has led to a general failure to implement policies such as inclusive education. She mentioned that there is also a lack of qualified staff on a local level (e.g. sign interpreters and special educationalists), which leads to poor service delivery (Interview 1). In the context of the social model of disability it is interesting that some people with disability criticise their own kind for quickly relying on aid, without any initiative to change their own life. This phenomenon would be summarised as “having attitudes”. One of my participants described his opinion about disabled people in the following way.

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Yes the attitude. It is the attitude of blind people. Because what they feel is that they need to be assisted. You understand? And I feel the time has come, when you see a disabled person you need to feel shame about him. They need to wake up and stand up and work, earn their living. Not only to depend on the government hand out grant. So now, firstly when they at the workplace, they need to change that they are disabled, but they need to perform well. Their attitude is that everything, all is going to be given to them. They don’t bring in more ideas. (Interview 7, visually impaired business man)

On the one hand it is interesting to notice that the participant had a visual disability himself and had experienced exclusive education in a school for the blind. He described how that exclusive environment did not help him to develop an understanding of the “world outside” and that during that time he only socialised with blind people. He however changed during his high school years to a mainstream school and found this school much more stimulating and it enabled him to stand his ground after school. Even though he did not manage to finish his Matric year, which was very likely the result of having had a lack of visual aid and special assistance at school, he did manage to become a successful businessman later in life. He himself explains his success by his exposure to mainstream standards and his change of “attitude”.

On the other hand, one must mention that there are enough other examples where children do not manage in a mainstream setting. Mongezi Ngidi (2005), in his biography about his albino condition, describes the limiting conditions at a mainstream school. He battled to read and write, as his condition also affected his eyesight. As described his teachers did not pick this up and positioned the “lost child” in the back of the classroom. As a result he failed in a mainstream school and was later sent to a special school. This school then enabled him to develop his skills appropriately and as a result he managed to study at University.

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What Ngidi and the above mentioned participant have in common is there self-confidence and positive attitude towards life. This enabled them to identify the social barriers they experienced and as a result they managed to overcome them.

5.3 Conclusions

Chapter 5 illustrated how notions about the cause of disability emerge and affect the individual experience of disability as well as the way a person and the disability are treated. Depending on the personal relevance and the Subjective Theories a person develops towards a particular condition, abnormality will be either attributed with a natural or spiritual cause or a combination of both. Notions of vulnerability and precautious behaviour influence this explanation as well. People will choose, in accordance with their different practitioners and spiritual leaders, their treatment procedures or will feel no need for intervention. The threshold of perceiving a condition as abnormal and the conceptualising of this abnormality influence the need for intervention. Due to the fact that traditional healers and spiritualist are available even in remote rural areas, people familiar with African custom often choose them as the first specialist to be consulted with in regard to an illness or other problem. Diseases that are thought to be of an African nature, for instance the possession by evil spirits, will most likely be referred to a traditional healer. Based on his or her assessment the healer will either treat the “problem” himself or herself, or refer the “patient” to a clinic or a shaman/sangoma.

On the one hand notions about disability can lead to the rejection, exclusion or mistreatment of disabled people. I therefore want to press the point that the notions about disability do, to an extent, negatively affect the relationships with other people. Depending on how the disability is interpreted, people will be welcomed or refused by their family, will be exposed to the outside world or hidden behind walls and will be overprotected or exposed to abuse. One participant explained the situation in the following context:

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People think that these people are not supposed to get married. That is what they believe in. Maybe Africans believe in that because she is disabled she must be kept here and looked after. As a baby it doesn’t matter how old until he is an old man he doesn’t get married. (Interview 15, nurse and sexual educator)

However, as the next chapter will show, people with disabilities are sexually active, regardless of their marital status and sometimes even regardless of their own will. So the overprotection as shown in the above example might prove to be more of a problem than a help.

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On the other hand it must also be mentioned that the African medical knowledge can be used to reintegrate excluded people. Due to its holistic approach, traditional healing practices can have a positive affect. As this type of healing involves the unconscious aspects of the mind, the patient can be given the opportunity to express emotions. He also might overcome anxieties through the dramatising effect of rituals or prayers. The notion of ancestral spirits and supernatural beings gives meaning to life. An individual might find comfort in the imagination that life does not end in death. The reinterpretation of disability can lead to a change in attitude and acceptance in a family. Rituals that are thought to please the ancestors also help a family to deal with a misfortune and with that might speed up the process of coping with a disability. The positive interpretation of seeing disability as a task rather than a curse can have a similar effect. Even so it may not always have been used in that sense the African “semantic network” keeps these opportunities open.

In addition to this, there are some very promising examples of people with disabilities who have managed to take control of their own lives and make it a success. All these success stories share an awareness of the social side of disability. The people behind it are empowered and confident people. They were not born like that, but have developed through a process into what they are.

To summarise is to say that the individual conceptualisation of disability can influence people with disability in a positive or negative way. There are some misconceptions that need to be overcome without destroying the ´healing´ potential that African custom can provide. How these positive and negative interpretations of disability and disease effect people with disability in relation to HIV/AIDS will be discussed in the following chapters.


Fußnoten und Endnoten

34  DSM- Diagnostic and Statistical Manual on Mental Disorders

35  As mentioned before disability studies often lack this link.

36  One notices the use of language in connection to “belief” and “knowledge”.

37  This is however sometimes very difficult as indigenous knowledge has to be “digged out” of its suppression. What one finds is not always the indigenous knowledge but a desperate charlatan.

38  Science in this instance is understood as a reasoning with facts, the intellectual and practical activity encompassing the systematic study of the structure and behaviour of the physical and natural world through observation and experiment.

39  Zulu speaking people believe that people with albino conditions bring luck and therefore need to be especially protected from the greedy eyes of the public. On the contrary, Xhosas, who live predominately in the bordering province, believe that albinism will bring bad luck.

40  Quotation from Interview 9

41  A chief mourner is a woman who is staying with a recently deceased for a couple of days before the body gets buried. The woman is usually the next of kin.

42  Umlazi is a district in Durban.

43  This could also be seen as the macrocultural level.



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