STIGMA AND FEAR

My fieldwork revealed that fear related to stigma is the main reason among PWDs for concealing their “status” and not attending HIV/AIDS-services. Marion, a 50-year-old disabled woman living in a slum area in Kampala confirms this: “I feared and it took time to step forward. I had no husband, if I then was HIV positive and “lame”, people would presume that I was also a prostitute.” It was important for Marion to stay the discreditable; therefore she tried to pass by not behaving and saying anything that could connect her with HIV/AIDS. According to Goffman, passing is the discreditable’s way of handling information control. HIV/AIDS clients have to go to HIV/AIDS services once a month to get treatment and counselling. Often they have to spend the whole day there, so “passing” can be difficult due to practical circumstances.

Marion came to a point when she got severe symptoms and therefore was forced to reveal her status, if she wanted to survive. Passing was no longer an option – she came in contact with TASO and now she says that she has learned to live positively with AIDS, but as she states: “My fellow disabled, who do not have any signs or symptoms of HIV infection, they continue to spread the infection because they fear to step forward, therefore awareness is needed.” The matter of “awareness” will be discussed in chapter 6.

I now move on to a discussion of different aspects of stigma. This discussion will be based on relevant studies and reports complemented with observations from my fieldwork. It should be noted that some of the statements offered by the literature may seem rather unvaried and stereotyped. Therefore it is important to look at stigma as a complex, but dynamic phenomenon. However, the stigma PWDs seem to fear can be compared with the general fear of stigma related to HIV/AIDS. The difference is that PWDs already belong to a stigmatized group in society, a marginalized group where most of the members are also illiterate and poor. This makes PWDs more vulnerable to HIV/AIDS (Groce, 2003). The poor seem to be blamed less for their HIV infection than the rich because people believe that the poor are compelled to engage in risky

33 behaviour because of their poverty. At the same time, the poor face greater stigma than the rich because they have fewer resources to hide a HIV positive status and pay for non-stigmatizing care (Nyblade et al, 2003: 23). PWDs’ experiences with stigma related to their disability combined with lack of resources may cause anxiety of facing another stigma. They know what to expect. Especially for women this so-called double burden can develop into a triple burden, because they also fear to be categorized as prostitutes, as in Marion’s case. People still fear disclosing their serum-status and being stigmatized. The Ugandan population has received education/information on HIV/AIDS and most people know about modes of transmission, but since there is a gap between what people know and what, at another level, they may do it is possible for HIV/AIDS-related stigma to continue (Monico et al, 2001: 22). The association of HIV/AIDS with sickness and the fact that it is an incurable, progressive and deadly disease is important; although these assumptions are changing in relation to the prolonged lifetime caused by the effectiveness and increased accessibility of ARV treatment. In Uganda assumptions regarding HIV/AIDS seem to change from it being a “killer disease” to being seen as a chronic disease, but ARV treatment has only been available and affordable a couple of years, so this is only the beginning of a process.

Therefore, fear of disclosing one’s serum-status is still strong. The labels associated with HIV/AIDS and their consequences such as social exclusion seem to be central, but as mentioned earlier, stigma should be seen as dynamic. It changes both as an individual progresses from HIV to AIDS, and as the HIV epidemic evolves in a given community. Nevertheless, I will try to explore thematically how HIV/AIDS-related stigma generally and specifically manifests itself in relation to PWDs through particular social relations with family members; friends and the community; sexual partners,; co-workers; and health workers. The following should be seen as snapshots of dynamic processes.

3.4.1 Stigma and Family Members

Research conducted in Uganda shows that HIV/AIDS-related stigma may be particularly evident in relations with family members. Feelings of rejection and segregation are common. PLWHA report that because of the fear that HIV is easily contagious, their families refuse to share certain household utensils with them. Others

34 are moved out of the family home for the same reason (Monico et al, 2001: 22), (Rankin et al, 2005: 7). I heard a story about how a girl, hard of hearing, became pregnant and infected by HIV. She was treated worse than a dog by her family until she and her family came in contact with TASO. Another pattern is that HIV/AIDS has a tendency to become a family secret or some sort of rumour that everyone knows about but would rather not discuss (Viras-Diaz et al, 2005: 175). ). In Goffman’s terms the discreditable (and one could add his family) has employed a strategy to handle his risks by dividing the “world” into a large group to whom he tells nothing, and a small group to whom he tells all and upon whose help he then relies (Goffman 1990 [1963]: 117).

In areas of considerable poverty, expending resources on a PLWHA may be thought wasteful since the person will die. Family members will be aware that the costs of caring for a person who is ill could be considerable, could have lasting consequences, and could make the lives of other family members difficult. The belief that a PLWHA

“will die anyway” can cause a caregiver to give up the person and believe that the sooner the person dies, the better (Rankin et al, 2005: 5). Nevertheless, my fieldwork revealed that families will also try to help its members in every possible way. I met a woman who was supported by her parents in the process of being diagnosed HIV positive; furthermore she was offered a room at her aunt’s place near the clinic, where she got her ARV treatment. She did not feel excluded by her family, on the contrary. In general, care for PLWHA can be accompanied by prejudices about the potential mode of transmission. Because of the perception of HIV as transmitted through “immoral”

sex or otherwise deviant behaviour, families are often inclined to blame PLWHA for their ill health and reduce care as a result (Nyblade et al, 2003: 40). The young girl I mentioned above had to face this stigmatization in relation to “immoral” sex threefold, since she was (1)impaired and therefore not thought of as being sexually active, (2)she became pregnant without being married and (3)contracted HIV/AIDS. This sense of sexual sin and shame was difficult for her and her family to handle, and the question of

“immoral” sex will be analysed further in chapter 5.

3.4.2 Stigma, Friends and the Community

In the tightly interwoven structure of African villages, the identity of the individual is tied to that of the family, the community, and the tribe. Therefore HIV/AIDS-related

35 stigma does not just affect the infected person and his family, but the whole clan as such, or the whole village and that is why a PLWHA may be excluded (Rankin et al, 2005: 8). Therefore it is understandable that passing is a common strategy, because the consequences of stepping forward can seem unbearable to all. The research of Monico and colleagues in Uganda also reported problems with community-based rejection of PLWHA (Monico et al, 2001). If a person’s serum-status is disclosed, he may become an object of gossip and rumours, because he can no longer fulfil the normative expectations of his surroundings regarding what Goffman calls his social identity.

Visible physical changes or “marks” caused by HIV/AIDS turns him into what Goffman calls a discredited person. Others will look at him as an object of pity and some will be afraid of how the change in the infected person’s social identity could influence their own social identity. According to Monico and colleagues people who were friends with PLWHA had a tendency to keep their distance in case they too were thought to have HIV/AIDS. They tried to protect themselves by avoiding or excluding the infected person. Nevertheless, in my fieldwork I heard of friends collecting money for a HIV positive woman so that she could start a small poultry production. So the

“picture” described above may be too stereotyped. However, going to a HIV/AIDS service provider like TASO may also be a vehicle for gossip and rumours in the community, because if you go there, every one knows that you are HIV positive, so the possibility of passing is no longer an option.

3.4.3 Stigma and Sexual Partners

Discordance (one is infected by HIV, one is not) within married couples is not as rare as one would think. According to TASO, approximately 50% of their couples show discordance. There is a tendency that the non-infected express constant concern and anxiety over the possibility of infection to the point of denying the possibility of sexual intercourse, but anxiety is also expressed by the infected person concerning the possibility of infecting others (Viras-Diaz et al, 2005: 178). Disclosure by a wife to a husband can be fraught, owing to dangers of injury from physical violence and/or abandonment and dispossession by the husband or his family. Because of this, and because of fears of stigmatization from health workers or the community, many African women tested for HIV during pregnancy do not return to the test site to find

36 out about their test results. Many people tested HIV positive do not want to be told their test results (Rankin et al, 2005: 7). The need to be loved and negotiate safe sex is complicated, though. I met a young HIV-positive widow with small children. She had a friend, who came to her place at night. She told him to use condoms, and in the beginning of their relationship he did, but now he does not care any longer, he claims:

“I might be infected anyway, so I do not bother”. Thus she was in a complex situation, with a need to be loved but afraid of infecting her friend and getting pregnant.

Problems with negotiating safe sex will be explored further in chapter 5.

3.4.4 Stigma and the Workplace

The research by Monico and colleagues in Uganda identified a range of issues relating to stigmatization and discrimination in the workplace. Many of their respondents felt it difficult to be open about their serum-status at work. This resistance was as much a product of “self-stigmatization” and concern about the possible responses of workmates, as it was linked to the likely actions of employers (Monico et al, 2001: 20).

They feared the spreading of rumours and its consequences. According to Monico and colleagues some companies tested prospective employees prior to offering them appointments; others were said to require workers to take a HIV test before sending them on what was considered to be expensive training courses (ibid: 19). However, one of the most significant consequences of stigma in the work scenario seems to be the inability to find work at all. In Uganda unemployment is a big problem, so who would bother to employ a “sick” or impaired person? In chapter 4 it will be shown how people in these categories have to create their own jobs. A thing that really surprised me was that none of the disability organizations I spoke to have a workplace policy regarding HIV/AIDS. Even at these workplaces people were afraid of disclosing their status due to the fact that they were employed on a contract-basis. They were simply afraid of losing their jobs. This seems to be a paradox since these organisations are important for the efforts of creating awareness about PWDs and HIV/AIDS. However, I will continue this discussion in chapter 6.

37 3.4.5 Stigma and Health Workers

One of my informants was very sick and in hospital. Health workers were ignorant towards her; “they could see that I was HIV positive, even though I did not know myself”. I also learned about HIV positive women and disabled women, who felt they were being poorly treated by health workers at maternity wards. A study carried out by Reis and colleagues in Nigeria documents that a significant proportion of health workers report discriminatory attitudes and engage in discriminatory and unethical behaviour toward patients with HIV/AIDS, including denial of care, breach of confidentiality and non-consented HIV testing. Inadequate education about HIV/AIDS and a lack of protective and treatment materials appear to contribute to these practices and attitudes. Discriminating attitudes about PLWHA were common. A statement like

“many of those who have HIV/AIDS behaved immorally and deserve the disease” were agreed on by 20% of health workers in this research⁹ (Reis et al, 2005: 746). Other statements were that the beds of patients with HIV/AIDS should be marked or that patients with HIV/AIDS should be on a separate ward, and 21% agreed that they could refuse to treat a patient with HIV/AIDS to protect themselves and their family (ibid:

747). Casual contact fears are deeply rooted, even among health workers who presumably know better. One serious consequence, caused by discriminatory behaviour by health workers, is that PLWHA actually avoid or delay seeking care for HIV/AIDS or related illnesses (Nyblade et al, 2003: 43). This problem is then intensified in relation to PWDs. In this section health workers have been discussed in general, but my research focused on health workers at HIV/AIDS clinics, so therefore I will now continue analysing “data” generated during my fieldwork at these clinics.