7 Disability in the Context of HIV/AIDS

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This chapter will look into the microcultural and individual level of the disability experience and its relation to sexuality and HIV/AIDS. In an attempt to place the thesis within the reality of local people this chapter will begin with reviewing the situation of teenagers in KwaZulu-Natal. In this regard the affects of disability on sexuality and the exposure to HIV/AIDS will be discussed. I will particularly outline the strategies that parents and caregivers have developed, while dealing with the sexuality of and the risk of HIV infection of their offspring. It is not difficult to see that issues concerning the development of relationships must inevitably engage in sexual themes, Social Representations about disability and living conditions for people with disabilities. Similarly, fertility, parenting and HIV/AIDS cannot be detached from themes that surround the topics of sexuality and relationships.

7.1 Intervening condition – disability

7.1.1 Teenagers in KwaZulu-Natal

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You can ask people. The HIV status in Marianridge alone amongst the teenagers it is just unbelievable. We always go back to where that person comes from. Most of us move out of the rut. There is no one to talk to the teenagers. In Marianridge they are sleeping around, they are making babies and you find this one is pregnant from this ones husband and these are thirteen and fourteen year olds. (Interview 24, abuse victim)

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As outlined in chapter 6, it can be assumed that HIV/AIDS in KZN is mainly contracted through sexual contact (Gow and Desmond, 2002). The example above shows that sexual activity also starts relatively early and is already widespread amongst teenagers. Being “out of the rut” is in this case associated with a sexual activity. This theme of teenagers having sexual relationships with much “older men” (Interview 6) or “husbands” (Interview 24) reoccurred in several interviews and seems to be of particular concern for parents and educators. In the academic literature, newspapers and reports, this phenomenon is usually summarised by the term “sugar daddies”, which is an older person who provides goods in return for sexual favours (Harrison et al., 2001).

In regard to teenagers, another reoccurring theme in the data is the scheme of impressing other teenagers with being popular as a girlfriend and having lots of affairs.

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It is like the behaviour like when I was in school I had so many sexual partners and I was doing it together with my friends and I in my group it was like who is our hero. Our hero is the one who has many boyfriends. So we were competing, who is having many boyfriends. It was very good. (Interview 14, HIV positive woman)

Interestingly the peer culture seems to differ quite tremendously from the way girls behave and try to appear in public, particularly when they are under the eye of the older generation or in the company of boys. The girls seem to pretend to have no knowledge about sex, as they otherwise would be seen as “lose” (Harrison et al., 2001).

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As already explained, teenagers in KwaZulu-Natal are enjoying their newly found democracy and interpret their ´freedom´ also as freedom of sexual expression. As the above mentioned participant put it “nobody can tell us what to do” (Interview 14). Intervening parents may even fear that their youngsters could report them to the police “try to punish us (the teenagers), we go to the police and say my parent is abusing me”. TV and other media have undergone rapid change since the apartheid system was brought down. The apartheid prudery and invisibility of nudity and sexual relationships has been replaced within a few years with fast commercialisation of sexuality and relationships. These often offer little depth and teach little respect for one’s own body or that of one’s partner. One of the most prominent examples from latest advertisements is the “activating campaign” from Axe deodorant, where a whole plane was chartered in which some “lucky men” could enjoy being served by half naked goddesses. While the media presentation of sexuality through particular film material is relatively open as in other countries, public discussion about sexuality is almost non existent as the topic is still surrounded by taboos. This situation is confusing for the young as well as for the older generation.

Faced with two such contradicting extremes, teenagers seem to choose between either total abstinence or sexual revolt. While the older generation feels helpless as it does not have the skills to talk about sexuality nor does it have the power to control its offspring. Comments about teenagers, such as they are “out of control” or that they “don’t listen” are therefore often heard.

As teenagers are among those people classified as sexually active it is therefore necessary to understand how they acquire sexual knowledge and what factors influence their sexual decision making. Traditionally Zulu people had an adult in their family allocated to take over the sexual enlightenment of their offspring (Schapera, 1946). These sexual education sessions would be conducted with the entry into puberty. The educator would usually be of the same sex as the youngster. Some people celebrated puberty with special rituals. The readiness for having sexual intercourse was determined for girls with the beginning of menstruation. A goat would be slaughtered for this occasion. With this they would inform their ancestors that the girl was ready to get married. If she was still unmarried after the age of 20 another goat would be slaughtered to remind the ancestors to find her a husband (Interview 23). For boys this was done less specifically. In the Xhosa tradition, a young man would be instructed during the circumcision initiation. The Zulu tradition however does not know such a ritual. An older uncle would traditionally instruct the young man.

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The close connection between families have however been slowly dissolved and therefore relatives are less available for taking over this important part of life (Leclerc - Madlala, 1999;Harrison et al., 2001). Many parents and here especially women raise their children on their own and do not have a man accessible for their children’s sexual education. Another problem emerges if the mother or father works long hours or far away from home. As a consequence they are not available for the sexual education of their children. Youngsters are often left with their grandparents or older siblings, who usually are not in the position to pass informed knowledge on either. To make it even worse KwaZulu-Natal is severely affected by HIV/AIDS with many fatalities (see Statistics South Africa 2006). Therefore there are only a few people left to look after the younger generation and child headed households are a problem in the province. These circumstances add to the severe misinformation of the youth. Most young people today grow up in a confusing world. As explained sexuality is still a big taboo topic in most families, while on the contrary it is openly displayed in the media and sexual abuse is a common phenomenon in South Africa. On the one hand dress codes in institutions like schools are still very conservative, while on the other hand some people choose to wear provocative clothing in their spare time. Adults preach abstinence while on the contrary adults also assault and sexually abuse youngsters. In some areas a child cannot even feel safe at school as teachers and older schoolchildren have been involved in abuse. As a result many youngsters are confronted with double morals and misinterpret their environment, or struggle to develop appropriate behaviour with the other sex.

In such a world misconceptions and myths emerge easily. It is therefore not surprising that some youngsters think that girls with short skirts are asking for sex (see chapter 6), that one kiss is an invitation for sexual intercourse, or that you can only keep your boyfriend through sleeping with him (Harrison et al., 2001). In conclusion it should be no surprise that misconceptions do also emerge about the sexuality of people with disabilities. This shall be discussed in the following sub-chapter.

7.1.2 Common misconceptions

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But I know that the other woman was ill treated (in the hospital), the one that was also disabled. Their attitude there was very, very bad. Maybe it depends whether they know you or not. So the attitude was very, very bad. There is a myth, that disabled woman like sex too much. Even the nurses will say, ´heh´ this disabled people like sex too much. (Interview 1, woman with hemiplegia)

Disability is a condition that intervenes within peoples everyday lives, consequently with their sexuality as well. Imaginations about the sexuality of disabled people are various. There seem to be two contradicting myths that are either based on the imagination that people with disability “are not sexually active” or “like sex too much”. The first myth is probably a result of the notion that people with disability have insufficient feelings, are intellectually incapable of sexual thoughts or simply just not attractive enough to be taken seriously as a sexual partner. The second myth is most likely based on the open approach towards sexual life that some people with intellectual disabilities practise. One of the participants explained it in the following way: “they don’t hide” (Interview 1), which in turn does not comply with Zulu culture where sexual topics are taboo.

Other myths expose people with disability to sexual exploitation. On the one hand there is the fear of people with “albino condition”, the anxiety that disability can be passed on to the next generation and the stigmatisation that comes with being cursed by god or the ancestors (see chapter 5). These Social Representations about abnormality reduce a persons chances to engage in a stable relationships as they will not be chosen as a permanent partner. On the other hand there is the imagination that people with disabilities are free of pollution as they do not have sex. These make them vulnerable to “virgin cleansing” practices. A participant told me that “most people know that these are the fresh ones” and believe they are virgins. In an attempt to “cleanse” themselves of HIV/AIDS they rape these people (Interview 1, 15). The unfortunate result of all these myths is that people with disability get exploited, particular in a sexual sense. Being placed at the edge of society they are seen as easy targets and will be less protected.

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It also seems to be widely known that it is very unlikely that one can be convicted of raping a disabled person. A participant explained to me how frustrated people that worked in the child protection unit in Ladysmith were. They got tired of interrogating rapists, especially the ones that raped children with disability, because they would get away with it anyway (Interview 1).  Even if charges have been laid it is still very difficult to convict the accused, because people with disability often cannot stand as a proper witness. In the case of a blind person, identification is problematic. For deaf people there is often a lack of sign interpreters. People with intellectual disabilities, and here especially children, can hardly convince the court of the matter, so the rapist ends up getting off free of charge. What further complicates matters is the fact that the rapist is often close to the victim and can come from the same family. He could even be the family’s main provider. A conviction would mean a loss of income and prestige in the community. The smaller burden seems simply to ignore the violation. One particular participant explained a case in which a caregiver had noticed that something was wrong with a child while changing a nappy. The caregiver talked to the parents of the then 8 year old child58. It seemed as if the mother already knew about the abuse, but chose to ignore it. As a result the parents took the child out of the day care centre and no charges have ever been laid (Interview 3).

In another case it was known that the child’s rapist was the uncle. Due to the fact that he was the main provider for the family the mother was put under pressure to drop the charges, which she later did. The people working at the day care centre tried to convict the uncle without the parents support (Interview 5). This however turned out to be very difficult as the intellectually disabled child could not stand trial. Hard evidence (biomedical) was the only way to convict the accused. It was only because the Day care centre was based within a clinic that it was possible to “collect” this hard evidence.

For women with disability this is not much better. Often left behind, being on their own and having less potential to defend themselves, they are targeted. A community worker and occupational therapist in a rural area explained it to me in the following way:

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Smaller, weaker and younger people get abused. Most of the disabled woman, I visit, are pregnant and they say that they don’t know how this happened. Like the one woman I visited yesterday. Her lower limps were paralysed, she couldn’t walk, but she was pregnant and she didn’t know how this happened. (Interview 13, occupational therapist).

His last remark that the woman did not know how it happened also indicates reluctance to talk about sexual things as well as the lack of sexual knowledge. Sexual education is for most African people, still a problem. A number of participants explained that in their culture they do not talk about sexual things and therefore gather no knowledge from their parents or other older people. All of my participants gave me the same feedback that there would be no sexual education in the schools in their area. They often differentiated between previously Model C schools (previously white only schools) and the schools that most African people visit. As Life Orientation is a compulsory subject these things should however be discussed not only in the previously Model C schools. It is quite likely that some teachers, because of their own difficulties with the subject, discuss the matter in a very sterile manner. In addition to this, schools seldom communicate about sexual education with the parents. There are some sexual educationalists that visit schools in townships and rural areas to educate about sexuality and HIV/AIDS (Interview 15). This however does not seem to have been made transparent enough and it is not a constant influence either, therefore not something that would stay in teenagers’ minds.

7.1.3 ´love´ and protection

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We had a case last year. There was a deaf lady who was sexually abused by a certain guy. When the lady went to the police station as a sign language person the police did not understand what her problem was. At the end of the day she signs and shows (participant points between the legs), and a police officer said maybe this lady is nervous. They lacked understanding. Then the policeman also took that lady and raped her again. (Interview 17, man with cerebral palsy)

For people with disabilities it is twice as difficult to gather information about sexuality and HIV/AIDS. In addition to this it is also difficult for them to express their own sexuality. Access to mainstream education and social life is still difficult and some people are even accommodated in separate institutions. Special aid and assistants is not always available even in institutions such as a police station. On the one hand the lack of necessary assistants can lead to misunderstanding and as the above case shows even to abuse at a police station. On the other hand as one participant explained to me, special institutions are often forgotten in mainstream programmes like HIV/AIDS awareness. They then have to make themselves heard so as to be included (Interview 5). There is also a lack of appropriate material, that can provide for the special needs of people with disabilities (Dube, 2004). There is either no sign interpreter available or the material is too visual for blind people59 or too complex for people with learning disabilities. The result is a basic access problem to sexual and HIV/AIDS education and knowledge. Some people with disability therefore battle to manage their own sexuality. This is especially true of people with learning difficulties who do not know how to express this part of themselves appropriately or lack the information about the right aid, protection and available assistance. For people with physical disabilities the question of condom use can be a problem, as their condition can make it impossible to use a female or male condom on their own (Interview 1). Using condoms, and with that being protected from HIV infection, is under these conditions very difficult.

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Being at the edge of society, youngsters are easy victims of sexual exploitation, especially those with intellectual disabilities. Besides being very open about their sexuality, sexual expression also gives them an opportunity to draw attention to themselves. As sexual activity is encouraged within the peer culture (see above chapter), they can easily fall within the trap of sexual exploitation. A participant discussed with me a case of a young girl that slept with several men so as to just be “loved” by someone. She explained that because the disability was quite obvious no one would care about her. When she “attached love” to her efforts of finding people to be with, she would however be successful. That was her only chance (Interview 1). “Love” and “sex” are often used synonymously by Zulu-speaking people. As the term sex is rather taboo the word love is chosen instead. “Being in love” or “romance” on the contrary are understood as true affection for each other. For youngsters however this terminology seems to be confusing and particular for people with learning difficulties it is difficult to distinguish between the two.

The problem of finding a life partner was mentioned by several interview participants. Having a disability seems to make people unattractive. Even more important is the fact that they are also seen as not being able to be a family provider. Due to the fact that marriage is often based on financial reasons, people with disability get a double disadvantage. This seems to be more serious for women than for men. A participant explained to me that a physically disabled woman would not be considered as a spouse as she was not believed to be able to look after her family and here especially the man (Interview 1). This in return increases the probability that people with disabilities engage in either no relationships at all or multiple partnerships. Taking into account that through their particular disability protection with condoms is difficult, the risk of getting infected with HIV increases.

Only in certain circumstances could this be different. As one participant told me, if an intellectually disabled woman is not “too ugly”, she could get married, as she is believed to be able to do the housework. She would get married as a second wife and “lobola” would not have to be paid (Interview 15).

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Confronted with an abundance of problems in KwaZulu-Natal, people with disability are far away from public focus. On the contrary and as the above showed they are very vulnerable to sexual exploitation, are treated by some people as sexual objects and in the case of learning difficulties often lack the ability to judge which behaviour is appropriate and safe. Parents, educators and people with disabilities have to face the consequences of reality but have very different ways of dealing with this situation. Some of these coping strategies will be discussed in the following sub-chapter.

7.2  Consequences and protective strategies

7.2.1 Without a trace – Denial of sexual activity

Prevent, don’t allow alluring and condoms. I think giving condoms is teaching a child to use condoms. You teach him to be an isokha. If you teach someone to use a condom, what I believe in my opinion. I think if you teach someone to go far from sexual activity it is better than teaching him to use a condom because if you teach him to use a condom you teaching him to go and find more. (Interview 17, man with cerebral palsy, who was also a CBR consultant in a rural area)

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As pointed out in the previous sub-chapter, the sexuality of people with disabilities is surrounded by two extreme assumptions in that people with disabilities are either “sexually not active” or “like sex too much”. In the context of HIV/AIDS both assumptions deepen the denial of sexual development via denial of sexually related knowledge and opportunities.

The general population often finds it easier to simply deny the very existence of sexuality when it comes to people with disabilities. As the example at the beginning of this chapter shows, even people with disabilities themselves value abstinence highly and attach to “alluring” and “condoms” a negative stigma and interpret sexual activity as something that should be forbidden. The background to this interpretation is the notion that by teaching people about condoms you encourage sexual activity.

In the sense of the saying “let sleeping dogs lie” one chooses not to talk and educate youngsters with disabilities about sexual matters and rather preaches absolute abstinence as long as one has no permanent partner. Sexuality is moved into the private sphere and rather not publicly spoken about. This however implies that people with disability have free choice of when and where they have sexual contact, are able to acquire knowledge about sexuality and get opportunities to meet prospective partners in much the same way as able bodied people. While social life in general depends on controlling and constraining the body, through dressing styles and appropriate movement patterns (Turner, 2001), the management of sexuality is highly socially regulated as well, but not spoken about. This individualism bedevils this topic and makes it impossible for people with disabilities to acquire appropriate knowledge and decreases their space for experimenting as their privacy is often compromised. As Seymour (1998) observes, in her study of sexuality and disability, the individual is expected to take responsibility for issues that are often beyond her or his control. Despite the individualisation of sexual issues, private troubles become social issues as the following case study shows.

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A CBR worker, who operated in the rural area of the Sisonke district (Interview 9), described and later introduced me to a mother and her physically disabled daughter. The mother of the disabled woman, saw her daughter as not being capable of “looking after a man” She felt devastated by the prospect of not having any grandchildren. As a solution she sent a brother60 to penetrate her daughter. As a result of the abuse the young lady became pregnant and delivered a baby. The baby was however claimed by the mother of the disabled woman as her own. As the two women entered into a dispute over the rights to the child the CBR worker became involved.

It is also often assumed that youngsters with disabilities have no sexual desires. They are seen as incapable, or as life long children (Interview 10). In the case of severe learning difficulties people quickly judge that it is impossible to teach these people anything. People with these types of attitudes seldom talk or educate others about sexual matters. Even they are aware of the fact that especially girls are often victims of abuse, as the resulting pregnancy can not be missed. A secret approach to dealing with “the problem” is sterilisation. Even though this is no longer official policy, institutions and parents still seem to choose sterilisation as an easy way out (Interview 11). Caregivers and parents feel hopeless and have no trust in the judicial system, so sterilisation gives them at least the illusion that nothing is happening.

In both of the above examples the disabled body is handled like an object. The body itself is however central to sexuality. We need a body in order to be sexual and therefore intimacy depends to a large extent on the body. For people with disabilities the most intimate aspect of embodiment, sexuality, is subject to significant control by others. Even though there are cases where disabled men are abused by women (Interview 9), women with disability are more vulnerable to abuse and less likely to be chosen as a permanent partner (see chapter 4 and 5). Most of the men with disability, which were interviewed by me, had some sort of permanent partner while none of the women with disability did. As Seymour points out in her study of people with physical disabilities, a woman with spinal injuries experiences much less practical sexual dysfunction than a man yet her reproductive opportunities may be much lower (Seymour, 1998).

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This is because society influences the ideas, values, bodily manifestations and social practices associated with sexuality. In the Zulu society the traditional role of a woman is to bare children and to be able to look after the family while physically working hard both in the field and in the house (Interview 3). This can partially be fulfilled in spite of a disability. While in a ´western´ context the “physical advantage61” of women with disabilities shows itself to be an empty blessing in terms of her reproductive opportunities (Seymour, 1998), women with disability in KZN seem to have the same chances of pregnancy as their able bodied sisters. This however is not necessarily a result of more acceptance but rather the effects of abuse, exploitation and the option to be chosen as a second wife or as a lover (Interview 15).

In reality the behaviour of youngsters with disabilities does not differ much from the general behaviour of teenagers. When asked to describe her relationship with boys a girl with a learning disability answered that they (meaning the boys) are “wild” and that they “play around with girls”. The same teenager explained that the girls are “fighting” about the boys, which can become very physical. Teachers and caregivers at the school, which was a special school, felt helpless towards their pupils sexual activities and therefore separated the girls and boys into different classes and attributed certain areas of the school for boys and girls only e.g. certain staircases. The conflict and curiosity between the boys and girls was however just moved outside of the school. The school then decided to let boys and girls leave the premises at different times. The conflicts and experimentations were therefore moved even further away from the influence of the school. The teenager herself reflected that she did not get any sexual education from the school. For the school, making sexuality invisible at the premises seemed to be easier than dealing with the problem.

The failure to educate about sexually appropriate behaviour can have very serious consequences as the next case study shows. The interview partner a CBR consultant (Interview 1) explained the situation of a neighbouring girl (P.), who had a severe learning disability. The mother and the school had failed to educate P. about sexual behaviour. Abstinence was offered as the only option and the mother denied her grown-up daughter the chance of having a boyfriend, although this was recommended by a friend. Never the less P. did manage to find her ways and was frequently found with men from the local tavern. They took advantage of the desperate girl and had sexual intercourse with her on different occasions. The experience of being wanted and “loved” for once in her life, while nobody else had bothered, made sexual contact very precious to her. The result was however that P. got infected with HIV, and at the stage of the interview, her health was quickly degrading. People did not openly talk about it and the fact that she was HIV+ has never been disclosed. For a trained eye the signs were however very obvious62. For the outside world she was a disabled girl that had become very sick. People wondered about her condition but nobody approached the actual problem. She was never sent for testing or counselling. The denial of her positive status has probably also resulted in her developing AIDS and not being treated with ARVs63. The girl died in 2006, officially of TB.

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Other interview partners reported similar cases. What always stood out was the desperate attempt to protect the children or youngsters from sexual abuse or exploitation. The denial of knowledge and independence has however made the situation even worse. The high reluctance to get tested for HIV adds an additional problem, as without knowledge about the infection, treatment will not be taken.

As described, caregivers and teachers feel relatively helpless and are unable to deal with the sexual expression and activities of their youngsters. In general the older generations try to encourage their offspring to:

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In addition to this the older generation might:

Besides all their normal efforts, teachers sometimes have to also deal with rape and other issues that unfold in toilets and school buses. It is interesting to note that the same teenager, as mentioned earlier, observed that the boys would be “naughty” anywhere, while the girls would behave as long as they were watched in class, but became ruthless as soon as they were unsupervised (Interview 21). So it seems the girls, who all had some sort of learning disability, knew very well what kind of behaviour was expected by the adult population and were also able to differentiate between school and spare time. The peer culture however seemed to set completely contradictive norms which are:

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As a result of these contradicting norms young people with disabilities develop double values in much the same way as their able bodied peers. On the one hand the boys “naughty” behaviour seemed to have been accepted by the young girl as normal masculine behaviour. The phenomenon to accept sexual violence as normal masculine behaviour (see also chapter 6) has been discussed by many previous researchers (Leclerc-Madlala, 1999;Harrison et al., 2001). Caregivers and parents on the other hand feel helpless and try to remove their offspring’s sexuality as far away from themselves as they can. As previously described, sexuality in the new South Africa is still taboo. Sexual education only happens during so called AIDS awareness workshops. The ABC message is brought across and nearly every teenager, except for some with disabilities, can preach it like a poem. Teenagers often do not know how to engage with the other sex and therefore seldom know how to negotiate friendships and sexual relationships. In fact they often do not know the difference between the two. Abuse, particularly of children, women and people with disability as the weakest link in this chain, is therefore persistent (Interview 24).

Overprotection was another re-occurring theme that presented itself when evaluating the data. Even though sexuality is a taboo topic the widespread danger of rape and abuse is known to most parents. Parents therefore might try to deny their youngsters any type of relationship with the other sex. Assuming that their children are asexual every sexual encounter or development of a relationship is interpreted as abuse, as the following interview extract shows:

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And then the abuse comes where it is like you do not have a chance to do what you like and maybe your parents can think it is abuse but it is not abuse. Sometimes it is not abuse… Maybe I am 21 or over 21. Maybe like the parents won’t let you have your own boyfriend or your girlfriend you know then maybe you take your own decision. You do whatever, the parents will think it is abuse. They think for you because they are the parent. (Interview 10, teacher)

The words “don’t have a chance to do what you like” and “they think for you” shows to what extent youngsters with disabilities are influenced by their parents with regard to their sexual expression. Youngsters however have a strong wish for independence particularly when it comes to their intimate space and “take your own decision” and “do whatever”65. This is not always approved of by the parents, who then might report the incidence to the police or other officials like school principals. They in return have to figure out which abuse was a real abuse and which one not. This can however be a very difficult procedure particularly if the person involved is a person with severe learning difficulties.

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As an example, chapter 6 showed that even police stations are not a safe haven for a rape victim. Even though the described rape was an extreme example, there are many known cases where the police have either worked together with the rapist or refused to record the offence (Interviews: 1, 5, 22). Interview partners reported that the police were either tired of recording abuse of disabled people as it would not have any consequences anyway, chased people away, knew the suspect and wanted to protect him or they were simply too lazy and careless to be bothered as the next example shows.

What happens is that in many cases in the past, cases were reported where the woman was there. They did not have a lady that could examine her and in some cases a report was not even made. Some of these people were chased away. The same young man that I spoke about (person with physical and learning disability) he was assaulted one day and they phoned me from the police station to come down because he was there. When this police officer was talking to me it was as if he was giving them trouble. When I got there I discovered that he was assaulted (meaning sexually abused) and he was full of blood and they wanted to get rid of him. At that time they never even wrote anything down that he was reporting. When I got there I forced them to make a report and go and arrest the person that assaulted him. He was full of blood but he was actually chased away. Somebody in the station phoned me because he mentioned my name. So I went down and rectified that problem with him. (Interview 22, priest)

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In this case at least a report had been made. All too often the caregivers or relatives fear serious consequences resulting from a report. Especially in the case of children and people with disability it seems that a charge is not made or withdrawn because the offender is too influential or the family depends financially on him. Often victims and caregivers are also threatened by the offender or fear they could be targeted if they report the abuse. The following two cases that occurred during the time of my research are recorded here for illustration. One of the teachers that I befriended during the course of my research had to change both her home and the school at which she taught when entering a witness protection program. She was high jacked several times in an attempt to silence her after having witnessed the abuse of a pupil whilst at school. Another very sad example is the story of our housemaid’s niece who was “messed with” by her brother, after she lost both parents to AIDS. The abuse was never reported and the girl may even have to go back to her brother. The fear of being targeted for reporting the crime was tremendous as the young man was known to be involved in crime. In an attempt to protect our own families the crime was never reported. As in this case, looking away and ignoring the problem seems to be the path of less damage, so people choose not to trace down the offender.

In the case of people with disability incidences of abuse are reported even less frequently as people assume that people with disabilities either “don’t mind”, “were looking for it” or should “count themselves lucky”. Intimidation and stigmatisation is also connected to abuse and of concern particularly for women with disabilities, as the next example shows:

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Especially when you look at a woman that was perhaps raped she doesn’t want the whole world to know that she was raped. She still has a life ahead of her. It goes then that these people don’t want to come out and that is why many of these cases were not even reported. Simply because in one way their lives were threatened. The other way they don’t want people to know their story and the third thing is that they get little support from the police and all such things. They say especially if you are a woman that you were looking for this kind of thing. (Interview 22, priest about abuse of people with disabilities)

No contact between the sexes, sterilisation and/or no charges against the offenders, seem to be a way of dealing with the issue of sexuality. The case of abuse therefore cannot be traced. The cruel reality for people with disability is a higher risk of abuse and HIV infection and a lesser chance for AIDS related treatment. This ultimately results in a lower life expectancy and a loss of dignity.

7.2.2 The awakening talk – sexual enlightenment

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I taught him, he used to masturbate in the bed. Then I told him, if you have this feeling in your body, it is not wrong to masturbate. Ok, but just go to the toilet, just close the door and do it there. Clean yourself up and come and sleep. Because now I can see that he has feelings. But I teach him about sex also, about how to use a condom, about why you have to use a condom. It is not necessary for him to start and sleep with somebody now. He has to sleep with somebody when he is 24, 23 years old. You know he understands all that. But he can have a girlfriend that understands him like that. Even at school they teach him like that. (Interview 2, mother of boy with severe learning disabilities)

Discovering their sexuality is a challenge for every teenager, including those with disabilities. Youngsters get different types of support from their parents and caregivers who either pass or do not pass on knowledge. This depends on their values, knowledge and personal openness towards the subject. There are of course various degrees of openness towards sexual education and one cannot divide caregivers and parents simply into people that educate and that do not educate about sexuality. To illustrate the difference of educating or not educating I have chosen for this chapter parents and caregivers that have developed a very progressive approach towards their youngsters and take particular care to inform them as well as people with disabilities that have taken a responsible attitude towards their own body and sexuality.

A change seems to have been brought forward especially through the awareness of the AIDS and abuse problem. These parents have realised that their sons and daughters are having a sexual life no matter how desperately they would try to avoid it. They have also realised that they as caregivers have a high influence on the way their offspring develop. Often they are in the dilemma of having to raise their child as single parents. Nevertheless they have decided to take matters into their own hands and try to give their children some basic sexual education. They try to openly discuss sexuality and sexual practices. Faced with the brutality of everyday life in KwaZulu-Natal many parents however still bring across old stereotypes. Boys get taught how to use condoms (Interview 2) and girls get taught how to say no and to speak up about incidences when they are “not comfortable with a person” (Interview 3). The protecting element is even here the dominant force and not the sexual enlightenment. This however I would account as a natural desire for every caring parent.

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Interestingly enough there are also some adults with disability, who reflected on their sexual situation and found their own empowering approach. These adults however also came from privileged backgrounds, had liberal upbringings, went to mainstream66 schools and enjoyed co-education (Interview 1, 4, 6, 7, 9). What they had in common was a positive attitude towards their bodies. They very openly compared themselves to able-bodied people and the type of relationships these people had. Often during a narrative interview section, they would explain how they had started off their lives with depressions and complexes about not being worthy of a relationship. After realising that the able-bodied people also had problems in their relationships and through acquiring more information about sexual matters they developed a more positive approach towards the possibility of a relationship.

At the time of the interviews these male participants were in a permanent relationship or marriage while the one woman in this group had a child and had chosen to be a single parent. This however also reflects that with a positive attitude towards life and some financial stability it seems to be possible for a man to find a life partner, while it seems to be almost impossible for women. Asked about this phenomenon a participant (Interview 1) explained that there are two reasons for this. Similar to European culture (Seymour, 1998) African-men “are not confident with the disabled body” (Interview 1). Women with disabilities are often seen as unattractive and do not fit the stereotypes of a ´normal´ female body. A woman who is experiencing severe bodily damage or dysfunctions must remake her embodied self within very rigid social categories. In addition to this African woman are expected to work hard and “look after their men”. A woman with a disability might not be seen as being able to fulfil that role. She can therefore only hope to become someone’s second wife. Faced with the harsh reality of the social construction of a sexual woman and wife it seems to be almost impossible for a woman with disabilities to present her self as a worthy partner. In addition to this remnants of conventional romance and courtship continue to impoverish women’s sexuality. In waiting to be pursued by a man, women allow others to assume responsibility for their sexual desires.

Motherhood was also experienced as empowerment for some women. Giving birth to a child meant taking responsibility for a new life. As the following example shows this enabled some women to re-evaluate their own situation and help gain respect for themselves.

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You come to a point when you think God all these men are using me, no one is making a commitment to me and that is not my life. I am not meant to live this life. You sort of grow up. Especially when I had my first child people were looking at me now. I don’t want people to talk bad to my child about me and say your mother is a bitch so maybe I just grew up. (Interview 24, woman with physical disabilities)

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As the above mentioned case shows, “growing up” was associated with responsible sexual behaviour and protection, which probably saved her life in the end as she has not as yet been infected with the HIV virus. It can almost certainly be assumed that if she had not stopped trying to acquire “love” through sleeping with men she would be HIV positive today.

For a man with a disability this is much easier as his traditional role only demands that he be the family provider and household head. This may be difficult enough in a country with a high rate of poverty, but as soon as a man with a disability earns a salary of some sort he will be seen as attractive. With the disability grant as one option to earn an income this is possible for many men with disabilities. The biggest challenge for men’s self image might be the threat of not being able to obtain a penile erection, as this symbolises a threat to masculinity itself. The following extract was chosen to illustrate this.

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Would you go with a disabled man? No. No one wants to be together with disabled people. We are not attractive and we don’t 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. … How can you sleep? How do you sleep? Questions like that. … Do you stay in your wheelchair? Do you sleep here? (Laugh) How can I sleep here? (Laugh, points between his legs) Have you ever gone to the toilet? Some questions like that. Foolish questions. … They are not sure whether you are a man.” (Interview 9, man with spinal injuries)

The association of masculinity with penile erection might be particularly strong in Zulu culture if one recalls the previous chapter. Sexuality, even though it is felt as an embodied passion, is also a product of learned features and Social Representations in a particular social context at a particular historical time. As can be seen in the previous example the participant himself questioned if he was attractive enough as a man. It shows that it is infinitely difficult to challenge social categories in relation to masculine and feminine sexuality, but he had to face and overcome this task. His immature behaviour during the interview (laughing) accounted for his own loss of self image (disability was caused through a mine accident) but also illustrates how highly taboo talking about sexual matters still is today. Words like sex, penetration, penis and so on were not used by any of my interview partners, who preferred to talk about “love”, “sleeping”, “have feelings” or “being messed with”. This is not an account of a translating mistake but an account for avoiding talking about sexual things. In Zulu itself, words to describe the sexual anatomy and physiology do not exist. The participant however managed to overcome these barriers and has now married.

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Common concepts about masculinity like aspiring to be an ´isokha´ is also entrenched in the way men with disability like to see themselves. As the following example shows, men with disabilities might practice risky behaviour and have various sexual encounters just like any other Zulu men.

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. That is why now we are not involved in this. Especially for me it was my downfall being a lover boy. Now because I am one of the leaders in my congregation it hinders me. I mean I was just like a isokha. If you want to keep yourself happy you must run away from ladies because sometimes they cause headaches. If you do have more than two the first one will come with problems and the second one just the same, the third one also. (Interview 17, man with cerebral palsy)

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Similar to the previous case of the woman after she gave birth to a child, this man’s behaviour changed after he took over an important responsibility in his community. Reflecting on his behaviour he knew that his sexual explorations were life threatening or as he expressed he would “dig himself a grave” and it would be his “downfall”. With the latter he means HIV infection or any other Sexually Transmitted Disease (STD). Again and as this example shows sexual themes are not expressed directly as this would mean breaking a taboo. Instead the participant prefers to use words like “threat”, “fall down”, an unspecific “this”, “ladies”, “problems” and “headaches”.

A concern for many caregivers is the sexuality of people with learning disabilities. The way of dealing with their sexual development is somewhat devided. Besides ignoring the fact that they need education in this area some people choose a different route and provide the space for discussion. The openness towards the subject is for caregivers both a challenge and an opportunity at the same time. Usually caregivers described these young people as “straight” or “open” (Interview 1, 5, 22) as they are people that talk about sex without shyness. This is often interpreted as abnormal and not in line with Zulu-culture (Interview 5). As the following example shows some caregivers find it very important that disabled people come to them with all their questions (Interview 22) and not to the wrong people who could take advantage of them.

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I know even mentally disabled somebody who one of the companies employed now, she comes quite often here and she will sit with me and ask me certain questions. I always encourage her rather to come and sit here and ask me or my wife the questions instead of going around and ask somebody else. She can one day ask the wrong person and she will have the wrong answer and maybe something will happen to her. She is 22 years already so she is a big girl. So it is all these kind of things that are taking place but other than that we really want to do more than what we are doing now. (Interview 22, priest)

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The protection of people and here especially girls and women with disabilities seems to be the major motivation. Whatever the motivation was to provide a platform to talk about sex and relationships it seemed to be an important catalyst for people with disability and an encouraging factor while developing safe and pleasurable behaviour.

To finish this subchapter I would like to quote one teacher who saw her responsibility to educate her pupils about sexual relationships and included this in her Geography and History lessons. As the previous examples showed, once people with disability are able to take responsibility for their own life, once they move out of their passive role and participate in society accordingly, their sexual behaviour will also become less risky.

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You see I mean in the sense that even though they are school learners the key thing is for each of us to take responsibility for our own lives. We always ask the children” What do you want from life? When you come out of this special school these are the challenges that you are going to face because remember you are only going up to grade 10 here. Your friends are going up to grade 12. You can’t go to university so you have to become the best you can within these limitations. This is the world out there. There is the threat of HIV/AIDS. There is the threat of a pregnancy. Are you going to be able to look after a baby? This boy is not going to marry you. He didn’t promise you get a baby and I am going to marry you. So the solution is for the learners to take responsibility for their own lives. And unless or until they do that then I believe we are going to continue very much as we are. Because you can, I don’t’ believe that it is lack of knowledge that is causing the problem. It is just not behaving appropriately, not taking responsibility for your life. You decide your destiny; somebody else mustn’t decide your destiny for you. And have realistic expectations, don’t think if I have sex or I fall pregnant from this guy he will stick with me because he is not. And the boys as well at that young age are in one sexual encounter I could be signing a death sentence. And until that sinks into their heads, that is the only time change will come.” (Interview 11, teacher at special school)

7.3 The Invisible

 

7.3.1 People with disability and HIV/AIDS

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I know some of them they are not well educated to understand about sexual transmitted infections and so on. So they have been greatly affected. I know a number of them who passed away because of HIV where they will say no I have tuberculosis or it is just a cough but you realise that it is not just a cough. (Interview 4, man with spinal injury about people with disabilities)

As already explained in chapter 3, I encountered a number of barriers in approaching valuable interview partners, mainly because of safety issues. Usually it had not been a problem to find willing participants who were either HIV positive or who had a disability. One of the obstacles in my research was to find people with disability who were either HIV positive or a victim of sexual abuse. In addition to this the person had to be prepared to talk about their situation. It was often easier to find a person that would explain the situation form a third party perspective. One reason for this phenomenon is surely the double stigmatisation that is attached to a person with disability who is also HIV positive. The following example illustrates how dangerous it can be to open your HIV status.

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We currently now especially in this age we are really pushing to get people to the understanding of especially HIV/ AIDS because there are still a lot of ignorant people around still that sort who have certain beliefs, that these people (meaning HIV positive people) are not supposed to be around in the community. … Well there were incidents people actually came together and walked to the places where the people live and said: “listen here we want you out of the area” That I know. (Interview 22, priest)

To be forced out of their area provides a double threat for people with disabilities as they are not only losing their families and friends but also their entire support system, which they need even more than others. People with disabilities are therefore very reluctant to talk about their status and parents prefer not to face reality. In fact the people that did allow themselves to be interviewed did so only because I was a European face with a foreign accent. They were sure I would not talk about them as I did not live in their community and was not of African descent (Interview 25).

African interpretation of disease has often added to the negative interpretation of HIV/AIDS (Leclerc - Madlala, 1999). As explained in chapter 5, disease as well as other misfortune can be explained by spiritual/supernatural influences. In the case of AIDS two interpretations are possible. On the one hand a person with AIDS can be seen as being bewitched by someone in the community. On the other hand, and as the following example illustrates, a person with HIV or AIDS can be seen as the cause of other problems in the community and this even further threatens their acceptance in the community.

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I think it is more in the black culture where we got doctors they have sangomas and witchdoctors. These people pronounce it and blame it on certain people. Because they were saying it and people have trust in them so they sort of swiped the people and convinced them that the AIDS people have to be removed. (Interview 22, priest himself being “black”)

People with disabilities suffer from such harsh exclusion especially considering that their disabilities have already placed them at the edge of society. To illustrate this effect I would like to quote from the following case study. In the interview of a man with a hearing disability it became apparent that as long as the man only had a hearing disability and his HIV status was not known, his wife stayed with him (Interview 18). After having found out about his positive HIV status his wife left him and their children. One of the children was also HIV positive. The man struggled with the degradation of his own health and the responsibility for his two children. He had to move in with his parents who took care of him and the children. Most of his friends left as they did not want to have anything to do with him anymore. At the time of the interview he was close to death and the interview had to be limited in time so as not to exhaust him too much. He had started to take ARVs which he was able to collect at the district hospital and which apparently had already improved his health. Even though this medication was free it was still an effort for him to collect it. He had to travel several kilometres to the district hospital, which costs him between R80 and R200 a month. This was costly as his only income was a disability grant of R780 a month. With this he had to clothe and feed both himself and his children. To acquire a hearing aid was therefore out of the question. He cared for the children to the best of his ability but had to rely to a large extent on his parents. This he experienced as very offensive because he could neither fulfil his role as a father nor the traditional role as a homestead head. He experienced a loss of respect even from his own children, which is particularly insulting in Zulu culture.

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I feel respected but at the moment at home there is no respect because my children are possessed by my parents just because I am sick and I am deaf and I can’t walk. Eventually the children don’t respect me and they only respect their grandparents. They don’t respect me because of my disability and my sickness. (Interview 18, man with AIDS and deafness)

It is interesting to note that the word respect reoccurs several times in his description and as I described earlier it is a very important concept in Zulu culture. Respect is often understood in the sense of listening to or obeying someone like parents or a husband. The children of the participant often did not listen to him as he was too weak to apply any consequences to their behaviour67. On the contrary the grandparents were able to do so and he therefore experienced his children as being “possessed by” his parents. The loss of respect through his disability and sickness (AIDS) can also be interpreted as a double burden. Two burdens that together make life very difficult for him. These burdens were also often described when it came to victims of abuse, who also had disabilities. As described earlier a large proportion of rape cases are not reported for several reasons and when some cases do make it to court, they are often silenced in the process. The court attendant that I interviewed reported several such cases to me. She reported that especially in “black communities you find abuse of these disabled children” (Interview 24). Often a close relative like a stepfather is abusing the children and all too often the mother withdraws the case or makes the child “disappear” for the duration of the court hearing. Due to the fact that she has to depend on her husband or boyfriend it is easier to withdraw the case than to risk losing the income of the family provider. Particularly for a mother of a disabled child that is already stigmatised through the child’s disability this seems to be the better choice. Otherwise she could also risk double stigmatisation. With the withdrawing of the case the victim’s voice cannot be heard and the case becomes invisible.

7.3.2 Negotiating sexual relationships

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They said my boyfriend doesn’t want to take the condoms. But I said, this is the third child. And then we talked and after six months that one that had accompanied the one who was pregnant was also pregnant. And I asked, why are you now pregnant. And that one was very honest. She said you know what, ´Amacondom afunane …´, when you are a woman - man don’t want a condom. So he is working, he got money so I do whatever he says I must do. That is why she doesn’t use a condom, because he doesn’t want to. (Interview 1, CBR advocate about two deaf women)

The problem of negotiating safer sex has been mentioned in several writings about HIV/AIDS. As it stands in the African culture, sexual decisions are made by the dominant person, which is most of the time a man or the person with the highest family income (Preston-Whyte, 1996;Leclerc - Madlala, 1999;Harrison et al., 2001). Gender imbalance and financial power can give a homestead head so much control over his family that he (most of the time a man) can dominate the rest of the family. In the “bedroom” this means that he can make the decision when and with whom he chooses to “play”. His family depends therefore on his upbringing and values. In addition to this the African culture interprets condoms as a sign of mistrust and several other myths revolve around the subject condoms (see chapter 6). Insisting on a condom, under such circumstances, is often seen as disrespectful. The mainstreaming of condom use is therefore very difficult and as the example above shows depends on the decision of the homestead head.

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For people with disabilities this situation is even more desperate. In general it is much more difficult for a person with a disability to find a partner, which also reduces their chance to “be picky”. They are therefore much more vulnerable to exploitation. As one participant described it to me, because of his disability grant, women used to come to him and “share” his grant with him. He also expressed that this was quite a common phenomenon and that because of this people with disability remained “bankrupt” as all their money would go towards women. He also explained that he was married now and chose not to play around anymore. Condoms were not used in his family as they were a sign of mistrust (Interview 17). It seemed to me that he had a naïve imagination about marriage as a safe heaven, lacked negotiating skills to practice safer sex and was in general very embarrassed while talking about sexual matters.

The problem of negotiating safer sex was apparent in all of my interviews. Most of the time people with disabilities, themselves experienced it as difficult to negotiate protection during sexual activities because there was the threat of losing their partner. Caregivers have reflected on this in a similar way. The loss would often be an emotional as well as a financial one, and so women with disabilities did not even discuss safer sex with their partner. As the quotation at the beginning of this sub-chapter illustrates, the two deaf women did not see themselves in any position to ask for safer sex. Their boyfriends chose not to use condoms and out of “respect” they did not question this (Interview 1, 2). As Tilloston noted in this context discussing HIV and condoms may mean destabilising intimate relationships (Tillotson and Maharaj, 2001) and is therefore avoided.

Particularly for people with learning disabilities the lack of knowledge about sex and behaviour towards the other sex leads to unsafe practices. A person who has not learnt how to deal with the other sex and the circumstances under which sexual activity is appropriate, might confuse sex as a means to acquire attention. Take note of the following example:

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It is like a tavern, where there were men. So she wanted somebody to make love to her. One day she came in the morning. She was carrying her panties in her bag and: ´Where do you come from?´… ´You must know, I’m old now, I need man. (laughing) And I don’t have a boyfriend, I don’t have a girlfriend´ So they are very open sexually. (Interview 1, provincial manager of DPSA)

The desperation for attention is often confused with the desire for sexual encounters. It is very questionable if the person in this example was happier this way and would not be better off if she had learnt how to form a long term relationship with a man. She had not learnt to distinguish her own sexual desire from her need to be loved. A boyfriend, if she would have been allowed to have one, would probably have made her happier and her later infection with HIV could have been avoided.

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In addition to the controversial subject of condoms, people with disabilities have developed other strategies to protect themselves. Realising that male or even female condoms do not work for some of them, people with physical disabilities choose to either have only one partner or not to be involved with anyone at all (Interview 1, 5, 17). To avoid abuse one teenager reported that she rejected her own father, who had abused her. She lived with her aunt’s family and refused to even greet her father.

Another way of protecting oneself is to use the influence of the spiritual or magical world. People might go to a traditional healer “Nyanga” and collect medicine to protect their house from HIV. This is connected to the notion that HIV is sent through witchcraft and that through the protective medicine the witch will experience the consequences of his/her own doing. The necessity to negotiate safer sex is in this case transferred into the magical world.

7.3.3 Conclusions

The involvement in and access to prevention, diagnostic and care programmes is very low for people with disabilities. Some of the obvious barriers to access are costs and transport options68 as well as physical barriers on streets and buildings (see chapter 4). Another obstacle might be the negative attitudes towards disability and the working conditions under which public servants and here, in particular, teachers and nurses have to work. Under the ´rationing´ aspect this might have increased the exclusion of people with disabilities from services. In addition to this, disability and HIV/AIDS are highly stigmatised phenomena and it is therefore not surprising that people with disabilities are less likely to profit from prevention campaigns, diagnostics and treatment. As a result of presumptions, taboos and a rationed care system, people with disability are less likely to participate in VTC and as a result they are less likely to profit from treatment. On an individual level disability provides an extra complication in the already complex and difficult field of sexuality. Especially teenagers experience the contradicting norms and values as confusing. In addition to this disability intervenes within everyday life as well as with the kind of relationships that a person can encounter. As a result it is even more difficult for people with disability to practice safe sex and protect themselves from HIV infection. Often sexually exploited, financially dependent and lacking sexual knowledge they are more vulnerable to HIV infection. It is especially women and girls with disability that carry this double burden. On the whole people with disabilities find themselves in a very complex situation particularly in regard to protecting themselves from a HIV-infection. As it was described in the previous chapters on an microcultural level Subjective Theories about abnormalities and the barriers a person with disability experiences determines the reaction from and interaction with their peers and the specific living conditions the person finds him/herself in (see chapter 4 and 5 as well as the diagram below).

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Diagram 7 1 Coping strategies to avoid HIV/AIDS infe c tions

The diagram above (7.1) illustrates how reactions, interactions and living conditions influence the person’s participation in society and with this also their sexual relationships and access to knowledge about protective behaviour, protection from abuse and treatment opportunities. Stigmatisation and neglect all too often restrict a person’s participation.

A person that is seen as a curse or as useless and unattractive has difficulties in finding a partner. A person that is seen as being less worthy becomes an easy target and will more likely fall victim to rape. This is particularly the case when the offenders Subjective Theory about the disability has built up the notion that the disabled person can “clean” him/herself from HIV through sexual intercourse. The notion (Social Representation) that people with disabilities and here particularly woman should “count themselves lucky”, “are asking for it” or just “don’t mind” adds to their sexual vulnerability and exposure to HIV. Their placement at the edge of a society that still treats sex as a taboo and the fact that even ‘normal’ people battle to negotiate safer sexual practices, makes this, for people with disability, almost impossible. Only the enlightened and empowered individual finds his or her way out of this dilemma.

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People with disability and their caregivers are however aware of the fact that people with disabilities are vulnerable and have developed different coping strategies while dealing with the matter. On an individual level, as the diagram above shows, I was able to identify three major themes as coping strategies for this problem. Caregivers and parents may choose to completely deny the sexual development of their offspring, as described in chapter 7.2. Others might choose the contrary approach and help educate their sons and daughters about their sexuality (chapter 7.3). Again others might not take any notice at all and leave matters as they are. The latter approach usually leaves the person with the disability without any guidance and free to behave as they please. As a result of this, looking for attention and sexual acts become confused and people might develop high risk sexual behaviour.

One needs to understand that the factors that influence the sexual behaviour of people with disabilities and their able-bodied peers are diverse. The interpretation process of disability determines the reaction to an abnormal feature and the behaviour that the person with the disability will show him/herself. The reaction to one’s environment, the person’s personal coping strategies and the opportunities provided (access) by society, determine a person’s grade of participation or exclusion. This also influences the exposure to stigmatisation, exploitation and abuse, the degree of dependency as well as the access to equal opportunities under normalised and empowered circumstances. The specific life situation resulting out of this, in combination with the interactions within the peer group and the degree of HIV/AIDS awareness, will determine how a person with disability is able to protect him/herself from HIV infections.

In conclusion there is no simple answer to the complex situation in which people with disabilities find themselves. It should however become apparent that awareness programmes, a stricter judicial system and access to facilities will not reduce the HIV infection risk alone. Furthermore, notions about disability have to be altered, sexuality as such has to be addressed more progressively, positive non sexual encounters between boys and girls have to be provided and safer sex needs to be promoted.


Fußnoten und Endnoten

58  The child had a severe learning disability and was unable to control when she went to the toilet, hence the need for the nappy.

59  At the beginning of 2008 the African Union for the Blind published two training guides (AFUB, 2008a, 2008b).

60  The African concept of brother is broader than the European one. It is therefore not clear if this was a brother of direct lineage or just a half brother.

61  The physical advantage is her ability to have sexual intercourse and to bare children, while this is considerably more difficult for men with physical disabilities.

62  Most people with full blown AIDS suffer from similar diseases such as: chronic diarrhoea, oral candidiasis, pulmonary Tuberculoses, Pneumonia, unintentional weight loss (#SYMBOL#10%), Herpes simplex infections, Kaposi´s sarcoma (KS) … see also Appendix 10.

63  ARV or antiretroviral therapy is the only medication available at the moment for the treatment of AIDS. ARVs are given to people who’s CD4 cells are less then 200 cells/mm3 or who have developed AIDS in Stage IV (see also appendix 10a and b). The medication keeps the virus under control so that the person recovers and can once again produce more CD4 cells. The medication is subscribed over a life time.

64  Girls seem to differ quite widely in their views about sexual activity. While some girls admire girls with plenty of boyfriends others value virginity and abstinence. The tabooing of sexuality might have made sexual topics particularly interesting for teenagers.

65  Notice sexual themes are not mentioned directly, the person talks around it. This is a typical way of expressing sexual themes in Zulu-culture.

66  Mainstream schools are public schools that are built to accommodate all types of learners as opposed to having children with disabilities in special schools.

67  Traditional disciplining of children is done with a stick or whip which is also called a shambok.

68  In KZN there are very few buses available that can transport people with disabilities and taxis have to be used. Taxi drivers and their passengers are not always very helpful in accommodating people with disabilities.



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