HEALTH WORKERS AT HIV/AIDS CLINICS

The health workers I observed and interacted with had different backgrounds such as doctors, nurses, laboratory technicians and counsellors. Common for all of them was the fact, that none of them seemed to have stigmatizing attitudes towards PLWHA and PWDs. This statement was confirmed by my interviews with PWDs, since none of them had experiences with discrimination from health workers at HIV/AIDS clinics.

The PWDs I interviewed generally felt that they were treated well by health workers.

9 The study involved a cross-sectional survey of 1.021 Nigerian health-care professionals

38 An exception was the statement above, but this woman was not disabled at that time.

She was very sick and the health workers assumed that she had AIDS. The reason why none of the health workers I interviewed seemed to have discriminatory attitudes towards PLWAH or PWDs might be due to the fact that they were all trained in the field of HIV/AIDS, and at TASO most employees were also HIV positive themselves, so they knew by experience what it meant to be infected. At the AIDC I noticed that the interaction between nurses/ clients and doctors/clients was slightly more asymmetric, which may be due to the fact that they were treating more clients than for example counsellors? They were under pressure because the queues of clients were long, and there was a lack of time and energy, which of course influenced their interaction. The nurses at the AIDC also seemed to have more responsibility since they were treating milder medical problems themselves. They were allowed to write out certain prescriptions. Finally, asymmetric interaction is a consequence of different levels of knowledge, and medical staff is supposed to be “specialist”, whereas it is easier for counsellors to interact more symmetrically since they are discussing issues of general interest that are commonly known, and counselling implies a more egalitarian relationship (Egan, 2002).

3.5.1 Counselling

The term counselling is used in many different contexts, but as stated earlier, Egan’s counselling theory was my guide in evaluating counselling in this study. Before 1990 the term counselling was not used much in Uganda (Lazarus et al, 2005). Now it is somehow a buzzword, because counselling has become the key concept in communication about testing and living with HIV/AIDS. I agree with the statement offered by Lazarus and colleagues that counselling is a new cultural phenomenon, part of a shift in the culture of health care in Uganda (ibid: 29). Originally, TASO introduced counselling and provided training in counselling. The counsellors I spoke to had all gone through six months’ training with TASO (disability was not a subject during this training). TASO focuses on psycho-social support, so that HIV positives and their families can live positively with AIDS. The notion of peer counselling is one of the contributions of TASO. It is important to differ between sensitisation and counselling, because sensitisation can be more asymmetric, like the relationship

39 between nurse/client and doctor/client. I observed both sensitisation and counselling;

when general topics were “discussed”, such as accepting a HIV diagnose, practising safe sex, healthy diet, exercising and getting enough sleep, it was sensitisation, whereas counselling was done on the basis of the client’s situation and problems. Here TASO was an example of “best practice”. I observed a lot of counselling sessions, some were done in Luganda, but I could easily see by their nonverbal communication that the clients were comfortable and felt that they were respected. They often spoke openly and at length about their problems and they were taken seriously by the counsellor, who listened carefully and tried to elaborate problems in a kind way. The counsellors were sensitive towards the feelings of the clients, they spoke the same language, were flexible and “objective”, meaning non-judging. Plans were made, which could be everything from telling one’s status to a family member, keeping on negotiating safe sex (especially for women) or finding ways of making a living etc., and these plans were evaluated every month. According to Egan it is important to have explicit standards of value to guide the “helping process”, and surely TASO was aware of that.

TASO values were (1)human dignity, (2)obligation to people infected and/or affected by HIV/AIDS, (3)equal rights, shared responsibility, equal opportunities, (4)family spirit, (5)Integrity. These values and norms were easily observed in the interaction between counsellors and clients.

I assumed that health workers in general had a lack of knowledge concerning PWDs and their risk of HIV/AIDS, but my study shows the opposite. The study was carried out at special HIVAIDS clinics, where the staff was trained in the field of HIV/AIDS.

At these clinics health workers were aware that PWDs were sexually active and have the same needs and instincts as anybody else. They knew that especially women with physical or sensory impairments were at a higher risk of being abused or raped. Some health workers had met disabled women with children by different men, but they did not blame the women, they blamed the men for their irresponsibility. Health workers knew of these problems and in their opinion, PWDs were entitled to the same counselling, care and treatment like anybody else. The majority of health workers pointed out that PWDs were more sensitive, because they were in new surroundings and therefore more attentive towards whether other clients were pointing or laughing at

40 them. This sensitivity could make PWDs appear angry or aggressive. Therefore it acquired some special communicative skills to make PWDs feel comfortable in the counselling situation, but since PWDs were not a topic during counselling training, it was somehow learning by doing and the interest in persons with special needs, which made a difference regarding the interaction with PWDs. A counsellor told me how she once counselled a group of eight PWDs. Out of this group only one had the courage to be tested, the others were afraid, they wanted treatment for their symptoms, but they did not want to know their status. They were afraid of the reaction from their surroundings and of what people would think of them if they were HIV positive, and therefore they preferred to “cover” their status. They wanted to “pass” and remain the

“discreditable”. One exception was TASO in Kampala, and I will now explore what was different here.

3.5.2 TASO Kampala

TASO in Kampala is an exception, since it is the only clinic which has 63 clients with disabilities. The other four clinics I visited only had a few PWDs if any. TASO Kampala is the only clinic which has employed a disabled counsellor. This counsellor has worked for a disability organisation, which has supported her training at TASO. It was only after this counsellor came to TASO that PWDs began to understand that they were a part of TASO’s program and started joining the clinic. Special seminars were arranged for PWDs, but many feared to step forward. Persons hard of hearing were afraid, because there was no interpreter at HIV/AIDS clinics. If they had to use their own interpreter, they were afraid of lack of confidence. The visually impaired also feared to bring their guides, because just going to these clinics might provoke gossip and rumours. The problems are not to get access to this service, it is rather the stigma associated with the HIV/AIDS clinics. TASO has tried to meet some of the needs of PWDs by educating eight staff members in sign language, but there seem to be a problem in maintaining their skills, since not that many that are hard of hearing come to TASO and one cannot not be sure that those who come have learned the official sign language, but this is an attempt to mainstream.

41 There is no doubt that by reaching out to the community the disabled counsellor and her colleagues have managed to create awareness about the fact that PWDs are also welcome at TASO. It was a domiciliary visit which helped the girl, hard of hearing, I mentioned earlier. Her parents were so disappointed because she became pregnant and contracted HIV that they kept her away from home. She was only allowed to come home at night and sleep on the floor (like a dog). Her parents were only waiting for her to die, but the counsellor convinced them that their daughter was “worth investing in”.

The girl came to TASO with her mother, but whereas the mother was nice and clean, the daughter smelled and was dirty. The counsellor told her: “What is happening here?

Would you tell anybody that this is your daughter?” The mother apologized. The girl is now in ARV-treatment and the family is proud of her, she is doing housework while the rest of the family is busy doing their activities. The girl can take care of herself, looks nice and clean and the baby is HIV negative. This story is an example of how efforts to reach out can make a big difference, and especially in the field of disability this approach seems important, since stigma and fear are so strong.

3.6 SUMMARY

This chapter has focused on stigma in three ways: First, a theoretical discussion of how stigma and identity can be conceptualized according to Goffman and Jenkins. Second, it has been explored how different aspects of stigma are presented in relevant studies and reports. Finally, I have complemented these aspects with observations from my fieldwork, mainly focusing on the interaction with health workers. I did not observe discrimination between health workers and disabled clients; however, since PWDs do not attend HIV/AIDS services, the problem must be in the life lived outside these services. In the next chapter my analysis moves on to perspectives of what it means to be disabled in Uganda and how this may affect one’s identity.

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