8 Summary – Prospects for transformation

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In the introduction to this thesis I stated my goals and objectives in conducting this research. Foremost amongst these was the desire to illuminate some of the more silent and commonly-held notions relating to disability and HIV/AIDS. Furthermore I tried to ´unwrap´ the complicated interrelations between these notions so as to make the reader understand how the conceptualisation of disability increases exposure to HIV. For this purpose I studied concepts, notions and imaginations of disability and HIV/AIDS as well as historical grown settings and approaches to both phenomena. While using McElroys and Jewzeskies (2000) model I analysed the themes surrounding disability and HIV/AIDS on a macrocultural, microcultural and individual level (appendix 12). To round off my thesis, I would like to underline a few points by briefly recapitulating the implications of my findings in relation to current anthropological theories. In addition to this I would also like to summarize the practical relevance of my work in relation to the three levels suggested by McElroy and Jewzeski.

 

It is nothing new to say that the signs and symptoms that define disability vary culturally (Neubert and Cloerkes, 1994;Dederich, 2007). As a normative framework for decision-making, culture is an integral part in defining abnormalities and choosing appropriate treatment and behaviour. Criteria of health, disease and disability usually include utilitarian components such as the ability to provide for a family and to fulfil expected roles. In an African context the spiritual world has to be added. As I have shown in chapter 5, the cultural construction and representations of disease and disability are not intra-culturally uniform, as Cloerkes (1994) found 20 years ago. People more or less develop their own Subjective Theories about disease and disability based on their knowledge, culture and need for explanation. “Culture” in this context means more than traditions as we hardly find “pure” cultures in the world anymore. Progressively culture should be understood as something dynamic that changes and has to change in accordance to meeting the demands of an ever changing environment (Geertz, 1983). Culture in this context is influenced by historical traditions as well as local and international developments. In the time of globalisation the influence of the latter is eminent and forces Africa, in particular, to modernise its society. It may therefore not be surprising that in the given hybrid “culture” people come into contact with different explanation models and develop their own Subjective Theories about diseases and disabilities. In fact they are predestined to become objects of everyday theories, as they are visible and will be experienced by everyone.

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The experience of disease and disability has been studied on several analytical levels: (see introduction and appendix 12) the individual, the microcultural and the macrocultural. As a first step I will try to incorporate my findings into these 3 levels while I will try to identify strategies that could be implemented to change the situation as a second step.

Individual level

Recognising the wide spectrum of disability concepts and the fact that professional criteria differ markedly from Subjective Theories, I identified three major approaches that people choose while explaining disease or abnormality. My research results indicate that diseases or abnormities were understood to be either of natural or spiritual origin, or a combination of both. A considerable influence was also attributed to the degree of personal protection (e.g. through ancestors) or the degree and type of pollution (e.g. through death). Even though I identify categories of interpreting abnormality, I would like it to be understood that personal theory building is a process of ´picking and choosing´ what makes sense for an individual in a particular historical situation. This process is based on personal knowledge, notions and attitudes. The Subjective Theories of my participants mirrored a hybrid between tradition and modernisation as many people in KwaZulu-Natal are influenced by the traditional as well as the modern way of life.

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The individual experience of disability differed between my participants. While some experienced the attitudes of others, a lack of respect and access as a dominant characteristic of their life with disability, others progressively saw their disability as a challenge which they would try to overcome. I noticed a particular difference of disability experience between the genders. While most men focused on regaining respect and status in their communities, women were more worried about access to health services, education and transport and their vulnerability, particularly to abuse.

In the context of HIV/AIDS I have to underline the concept of pollution. This concept is seen by a number of anthropologist as influential to the spread of HIV and the victimising of women (Schapera, 1946;Jewkes and Wood, 1999;Leclerc-Madlala, 1999;Harrison et al., 2001). The notion of pollution is deeply embedded into the Zulu culture and implies that illness is mainly a woman’s business and as Leclerc-Madlala (1999) comments, women are therefore seen as responsible for spreading HIV/AIDS. The concept surrounding women and disease is also a dualistic one, as a “special woman” like a virgin can be subjected to purification rites. A woman with disability, in this context, might also be perceived as pure and “clean”, when the interpreting person assumes that she is not sexually active and thus a virgin. In combination with the notion that sexual intercourse with “pure”, “clean” individuals can cure AIDS and is safe, people with disability as well as children become prime victims of “cleaning rituals” (purification). As these rituals are, most of the time, of a sexual nature children, virgins and people with disabilities have become prime victims of sexual abuse. This current mythical discourse needs to be interrupted and challenged, so the rights of children, women and people with disability can be protected. Changes on the other two levels might be able to contribute to a change in Subjective Theories about disease and HIV/AIDS, as Subjective Theories feed off Social Representations that can be explored on a microcultural level.

Microcultural level

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Medical sociologists, social psychologists and anthropologists have long recognised that beyond the clinical domain of individual experience lies the psychosocial microcultural realm of relationships transformed by illness, disease or abnormalities. Disability experience and Subjective Theories about disability are influenced by gender, age, class, education and ethnicity (Helman, 1994;Albrecht et al., 2001). These aspects will influence the threshold of noticing an abnormality as such, as well as the way a person seeks for or offers information, treatment, care and assistance.

HIV/AIDS as well as the phenomenon of disability, illustrate that they are not only a self experience but also a social and community experience. Both phenomena can be subject to concepts of moral responsibility and in such a case are highly stigmatised. In Esses’ (1994) comparisons of people with depressions, HIV and amputations, and in Room’s (2001) comparison of people with disabilities and addictions, the attitude of the peer population depended on the interpretation of the abnormality. In Esses’ study people showed more negative attitudes towards people with depression or AIDS than they did towards amputees (Esses, 1994). Similarly, in Room’s study, disabilities caused by accidents were attributed with less negative stigma than drug addiction or disability seen as caused by a curse from god (Room et al., 2001). The element of control was crucial in both studies. Similarly, in my study, people would show more negative attitudes towards people with disability, rape victims or HIV positive people if the person could be made responsible for the “misfortune”, by either not following traditional custom, behaving immorally, being seen as cursed and so on. Here I would like to compare my findings to Goffman (1963) who interpreted disease and disability as leading to interactions profoundly marked by stigma that is spoiling or discrediting identity. Stigmatisation would have a triple effect if a person was a woman, HIV positive and had a disability. This marginalizes them within society and makes them very vulnerable.

Nevertheless some people with disability and their caregivers have found ways in which to speak out against their stigmatisation and develop coping strategies and positive identities in spite of (or because of) negative attitudes. My data shows that some people, although their stigma clearly deprived and disturbed them during their childhood or just after an accident or disease, had developed a positive body image after a certain period of time. This led to the development of progressive coping strategies which often included a strong support system through disability organisations and programmes (e.g. DPSA, DICSA or CBR). It is interesting to note that these people who developed positive images of themselves or their offspring, were often those people that also practised progressive sexual education and were not (anymore) involved in risky sexual activities. Thus this positive self image and empowerment decreased their exposure to HIV.

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Macrocultural level

In this context I would like to press the point that HIV/AIDS has not, surprisingly and inexplicably, suddenly arrived at the African doorstep. The epidemic has not evolved suddenly like a volcanic eruption or tidal wave and it is not to be confused with any other natural catastrophic event. I have tried to show that the HIV/AIDS epidemic is a result of the African development over the last two hundred years, with tribal warfare and the political systems of colonialism as well as apartheid having prepared the ´field´ for the HIV virus to spread fast and effectively. The fast modernisation of the African state has added to this problem. The traditional way of life has been rapidly distorted and little effort, if any at all, has been given to replace the “old” social system with a “new” one. Swarms of men have been isolated from their families through the migrant worker system and the homeland policies. In the cultural “ruins”, women are left behind and have to raise children by themselves. It is not surprising that men began to have girlfriends in the cities and women, for their part, have boyfriends to support their lifestyles at home. Families in which both the father and the mother are always present have become rare. The often described “African” promiscuity is in this sense not only a result of “old” traditions, but also a result of the continuous destruction of African social structures. In these new relationships condoms are not used as they are a sign of mistrust. One can almost get the impression that women and men live in different worlds and that they only come together to exchange the deadly virus, while nobody really talks about sexual topics and the cause of HIV is still mystified. At this point I would like disagree with Gronemeyer (2002), who presses the point that through the “HIV/AIDS awareness era” in Africa the body has become a technical object while the spiritual side of a relationship has been forgotten about. I would like to question this “forgotten” spiritual relationship between men and woman in Africa who always had material reasons for getting married. I think we are misled here, with the romantic notion that in the past, relationships between the sexes have been of a purely spiritual nature. A fact in this matter is that in the past the African society had an existing social structure, which has now fallen apart.

What was once the African extended family is now a ruin (Mutwa, 2003). Prostitution, promiscuity, crime and rape have become a daily phenomena with which every South African has to deal with to some extent. The Elite get infected during their business trips, students in boarding establishments, pupils by their teachers and peers and during deadly adventures on the weekends. The peak of the social destruction is the chauvinistic culture in which KwaZulu-Natal is still entrenched but cannot afford in the face of the epidemic. Men overpower women and take advantage of them while women live with the impression that they have to be obedient and quite. In the face of such social problems people with disabilities simply ´fall over the edge´.

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South Africa’s policies in regard to disability are very progressive but little implemented, while the policies on HIV/AIDS are very contradictory. In the case of HIV/AIDS a desperate attempt to find an “African” solution is still apparent and many previous writers encourage Africans to find their own solution69. This “African” solution however does not focus on the social-cultural construction of AIDS and therefore is not effective. In contrast to Europe, Africa was confronted with the AIDS emergency before it began its sexual revolution and emancipation process. South Africa needs therefore to fast forward its development in regard to gender issues before HIV/AIDS programmes can become effective.

People with disabilities

Now, where does that leave people with disabilities? As I have attempted to demonstrate, people with disability in KwaZulu-Natal and probably in the whole of South African society, are particularly vulnerable to abuse and exploitation. In addition to this the information and education they receive about their rights, rehabilitation and HIV/AIDS is insufficient, therefore HIV/AIDS intervention and awareness programmes need to be altered. People with disability are often seen in need of care and receive little HIV/AIDS related intervention (Ntuli, 2004). They are therefore less informed and often disadvantaged when it comes to sexual decision making. As Mazibuke (1989) reports, in many cases children with disabilities still do not, or have only delayed access to education as there are few facilities that can cater for them and often schools have certain entry levels (like being able to go to the toilet or being able to walk). Those children and youngsters that go to special schools are often not exposed to HIV/AIDS awareness, either because caregivers and teachers feel that they do not need it or because material and teaching methods do not meet the special needs of those pupils. The denial of access to education and sexual knowledge in particular, limits the prospects for a successful life in every context, so it also increases the risk of getting infected with HIV. Groce already estimated in 2003, that people with disabilities might be more at risk of getting infected with the virus and my research supports this prediction. On the contrary to Blumberg’s and Dickey’s research in the USA (Blumberg and Dickey, 2003), people with disability in KZN are less likely to be reported with a positive HIV status and are also less likely to be tested for HIV. The reason is that they generally receive less medical care and attention, or a disease might be seen as another magical misfortune and a diviner is approached rather than the local clinic. The consequences are that they are less likely to be treated in the case of an HIV infection as well as for other STDs.

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Prospects for transformation

The mystification of disability as well as HIV/AIDS has created a massive field of speculation, where people choose the most arbitrary prevention and treatment strategies. McElroy and Jezewski mention the concept of “cultural brokering” as a useful and heuristic approach to link different levels of health experiences. They define cultural brokering as “the act of bridging, linking or mediating between groups or persons of different cultural systems for the purpose of reducing conflict or producing change” (McElroy and Jezewski, 2000). This “bridging” and “mediating” needs to be applied on all three levels so that Social Representations and with this Subjective Theories about disability as well as HIV/AIDS can change.

On an individual level, people with disability need to understand that their disability is also a social construction and not only a personal issue. I argue that the social concept of disability helps to de-individualise disability and removes the burden of personal guilt or stigma, while the affected person learns to understand the social determinants of their devalued status. In this context improved access to knowledge and education (informal and formal) will be an important determinant to overcome the devalued status. In the process of moving to a more social paradigm, people with disabilities themselves play a crucial role and have to make an extended effort to help their able-bodied peers to overcome difficulties in interacting and understanding disability (Albrecht et al., 2001). In the context of HIV/AIDS it is also important that people with disabilities are included in HIV/AIDS prevention and treatment programmes. A promising development, in this regard, is the material developed by the African Union for the Blind, which has recently released a “train the trainer manual” for the blind (AFUB, 2008) or the South African disability sector report on HIV/AIDS and disability which identifies issues and possible approaches.(South African National AIDS Council (SANAC), 2008).

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At the microcultural level we can look at the local as well as provincial level. South Africa has undertaken attempts to transfer more power into the hands of local stakeholders and authorities as well as decentralise systems. In the health sector this has not been effective enough as yet (Veenstra, 2007). In addition to this the co-ordination of different programmes and initiatives seems to be unutilised. When asked about CBR most nurses and hospital staff did not even know what this was and thus collaboration was not seen as necessary. From their perspective CBR workers often complained that they had difficulties co-operating with the health sector. A major opportunity to initiate this collaboration would be to combine the efforts of the HCBC and CBR programmes. Both systems work with local personnel and at grassroot level. While the former deals with the ill the latter approaches disabled people. Facing human resource problems in both systems, one should explore if both could not collaborate better. This collaboration could theoretically even operate with identical personnel. The HCBC system would acquire valuable human resources while CBR workers could be rewarded financially. The main obstacle would be to train the CBR workers in basic medical terms, which should be possible to achieve. These CBR and health workers could also help to demystify disability and raise awareness against abuse.

 

On a provincial level hospitals, in particular, have already received a certain amount of self governance, except in the area of ARV rollout. The latter is hampered as there is not as yet enough expertise in the field and control from top level still seems to be necessary. People with HIV therefore need to travel to collect their ARV´s, which can be expensive and exhausting for a person suffering from AIDS. Ways of supporting these people via lift-clubs or ´free´ taxis should be explored. On the macrocultural level one has to mention that South African policy making is very progressive when it comes to disability issues and inclusion. The White Paper70 provides everything that is needed to include people with disabilities into mainstream schools and workplaces. The implementation at a provincial and local level is not however happening (Interview 1) as expertise and resources are limited. In regard to HIV/AIDS South Africa’s political will is still very questionable and confusing. As mentioned in chapter 6 the nationalist/ameliorative paradigm has been given too much weight in South Africa’s HIV/AIDS policy making and a more holistic approach with emphasis on the ´mobilisation/biomedical´ paradigm is needed.

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In addition to this, political will needs to be applied in the fight against serious crimes, particularly murder and rape. What is understood as abuse and rape needs also to be clarified. The macrocultural system has to be changed so that victims feel safe to come forward and perpetrators have to be convicted and removed from society. People with disabilities and here particular people with intellectual disabilities need here special protection through court and police work. Often employees at these institutions do not understand disability. Initiatives like for instance the Cape Mental Health project in Cape Town, which supports victims with disabilities during rape cases and educates police officers about disability (Dickman et al., 2006), should become more widespread and need to be introduced in KZN. On the individual level sexual education needs to be improved and people with disability might need some disability specific intervention. Again one has not to look far. Ideas are not scare in South Africa. For instance the educational programme from Rebecca Jones in Cape Town could be used to educate youngsters with intellectual disabilities about sexuality and HIV/AIDS (Johns, 2007). People that are informed about sexuality and their rights are also much more likely to stand up for themselves.

In the context of changing Social Representations about disability and HIV/AIDS I would like to refer back to previous anthropologists and HIV/AIDS researchers (Leclerc - Madlala, 1999;Whiteside et al., 2002), who have pressed the point that people need to be liberated from the “naïve and mythological stages of consciousness”. These researchers recommend an “education of liberation” as described by Paulo Freire (1972) as a valuable approach. The advantage of this type of pedagogic, is its adaptability to different cultural realities. In Freire’s approach, things are named as they are and taboos are broken on purpose. The “invisible” becomes visible. This practice is needed to overcome old habits and myths, without destroying valuable cultural traditions and treatment71. Incidentally, people will be educated by their peers, an approach that has been internationally recognised as an important indicator for success. This also reinforces inclusion of marginalized groups into mainstream settings. In addition to this “education of liberation” is always a community based approach and this is an opportunity to draw connections to already existing networks like the Community Based Rehabilitation projects (CBR) in KwaZulu-Natal. In this sense people can be “liberated” so that they can make informed decisions about sexuality, HIVAIDS and disability. However all these efforts would be doomed if these interventions do not aim at a change in society as a whole. Social-cultural factors play an important role in the spread of HIV/AIDS. This also applies to the phenomenon of disability. Only social change can influence the behaviour patterns people have developed towards sexuality, HIV/AIDS and disability. This is crucial so that interventions can have a long term and sustainable impact on the current HIV crisis.

Taking the previous thought into account, cultural stereotypes that claim ‘tradition’ as their justification, need to be challenged. Tradition in South Africa is all too often a silencing argument, where people feel that their cultural heritage either cannot or should not be changed. I particularly want to name the phenomenon of “isoka”, “lobola”, multiple partners, virginity testing, sexual violence and common ´purification´ practices as well as the conceptualisation of respect. Without a conscious alteration of these phenomena, there is not much value in liberating some people while leaving others out. Social change needs to affect the whole society and not just a part of it during a certain intervention in time. In this context I would like to extend Leclerc-Madlala’s (1999) view and press the point that the much needed change has to go far beyond the educational sector. KwaZulu-Natal’s society as a whole, has to be altered on all levels of society. To the extent that sexual behaviour is nestled within a complex range of psycho-social processes the social change has to be complex and broad. Progressive and comprehensive programmes from other African countries can be used as a model, for instance the project of the “Raising Voices” in Uganda (see www.raisingvoices.org). With regard to this statement I just want to reiterate the fact that there is little value in telling a man not to abuse women, if violence against women has become so embedded in local culture that it is no longer even perceived as abuse. The minds of women and men, disabled or able bodied, need to be drawn into a new consciousness.

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In the light of the current HIV/AIDS crisis, it will not be enough to simply understand internalised images that inform the meanings people attach to HIV/AIDS and disability or to simply improve access to education and health services. I strongly believe that the notions about disability and HIV/AIDS must be incorporated into an intervention strategy. This strategy, however, needs to then be incorporated into attempts to drastically change South Africa’s social structure while creating more tolerance and empowerment of marginalized groups like women and people with disabilities. In this context, sexual stereotypes need to be challenged while at the same time sexual concepts and common practises need to be revolutionised. The focus should however lay within conceptualising healthy relationships and reconstructing the concepts of masculinity in a positive way.


Fußnoten und Endnoten

69  It is however questionable why writers do this. The HIV/AIDS epidemic is so overwhelming and so many prevention approaches seem to have failed for different reasons that one can not deny the impression that these writers maybe just are not able to come up with an alternative themselves. It seems to me a romantic notion that Africans can find a solution to their problem themselves, when the epidemic has such diverse patterns and colonial influence in the past as well as current modernisation seems to have stirred up the epidemic.

70  Official government policy, here I refer to the part that tries to include people with disability in society

71  Refer here back to chapter 5. It showed also the strengths and advantages of traditional healing.



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