HUMAN RIGHTS: LIVING WITH AIDS IN MOZAMBIQUE

by Adriano Rostino Matsinhe 

“When I left the place I felt I had nothing to live for. For me it was the end of everything. I could not just walk back home. I wandered around and slept on the streets unable to believe that I was still alive.” 

This was the reaction of one young Mozambican woman after learning that she was HIV-positive. Her testimony is one of the stories that Kindlimuka, a Mozambican association of people living with HIV/AIDS (PWA) and their sympathizers, has compiled into an upcoming book entitled Human Rights and People Living with HIV/AIDS in Mozambique.

Kindlimuka, the first group of its kind in the country, was founded in 1996 and officially recognized in 1998. Today it has some 150 members, of whom the great majority are HIV-positive. The association strives to reduce the stigmatization of people living with HIV/AIDS by breaking the silence and speaking openly of the illness. It encourages other groups of PWAs to seek official status for their associations with the aim of establishing at least one association for each province in the country.

Kindlimuka’s initiative of publishing a book of this kind is a major step toward the elaboration of a national policy for the protection of the rights of PWAs. Mozambican society has not yet come to terms with the epidemic’s presence. Employment, social relations, friends, and first and foremost human dignity, are all at stake once the name of the illness has been pronounced aloud: “AIDS.” Despite numerous awareness campaigns, no person living with HIV/AIDS can avoid the stigma associated with the disease. The book draws heavily on the Universal Declaration of Human Rights, and Kindlimuka wants its voice to be heard among those of political leaders, members of civil society, and last but not least people living with HIV/AIDS. 

Following are some excerpts of individual testimonies presented in Human Rights and People Living with HIV/AIDS in Mozambique. 


Employment

This is the experience of Ana Maria, a 29-year old single mother. Ana Maria completed the ninth grade under the old education system and used to work in a firm that we prefer not to identify. 

“I used to be a secretary at [name withheld],” she said. “Then in 1997 I caught tuberculosis and was admitted to Machava General Hospital. When I was discharged, the firm told me to wait because I couldn’t work on account of my critical state. About four months later I caught cerebral malaria. I went back to the hospital where they gave me a certificate stating that I could start work. In 1999, I had a relapse, and it was then that the firm found out that I was HIV-positive. My relations with my workmates weren’t good. It’s all the personnel manager’s fault....When I took my social security certificates to the board for reimbursement he refused to give me the money, so here I am, living from hand to mouth.”

However, the insensitivity of some employers is not reflected only in their indifference and laziness. Ana Maria continues her story. 

“At work they had given me only Mt 50,000, which wasn’t even enough to pay for everything on the prescriptions. It was my family that helped me to pay for the drugs.” 

She was lucky because her colleagues didn’t discriminate against her.

“My workmates were unaware of the situation, they were just suspicious. The only ones to know were the firm’s general manager, the personnel manager and the head of administration.” 

As is probably the case in many firms, it was the most educated and highest ranking people who discriminated most. 

“Yes, the personnel manager discriminated against me most because he found out about my illness when I was in hospital in Mavalane. I got my certificates from the board and took them to work, but he didn’t pass them on to the social security. When I found out, I went to the social security myself, and they began paying benefits to my employer; however, when my employers received the benefit they stuck on the receipts without paying me the money. They never told me anything. The last time I chased them up about it, they just paid me Mt 50,000, which is about six days’ benefit.”

*****

Augusto is a young man who found out that he was HIV-positive before he started work. 

“I started work in 1999. They asked me what my level of education was, and said that the job was for people who had some skill or who had completed at least one year’s schooling. I provided the personnel department with certificates, which they accepted, and I started work. I worked from September to November. In December I started to feel very ill. When I went to explain why I was absent from work, with the prescriptions and certificates from the hospital where I was treated, they said that my absences weren’t justified. They asked me what was really the matter with me, and I said I had malaria and persistent diarrhoea.”


Augusto’s supervisor had no hesitation in declaring that he was unfit for work, even though he had no idea about what was the matter with him. 

“I was like that for the whole of December. In January the pain continued, I went to work for two or three days, then I felt ill again so my supervisor sent a note to personnel telling them that I was unfit for work.”

So Augusto had no choice but to reveal what was the matter with him; however, instead of getting help, he was fired. 

“Finally, personnel called to find out what was really the matter with me. I told them straight, I hid nothing and said that I had been found HIV-positive. They told me to stay at home, that I couldn’t go on working until my health problem had been solved. I was worried. Didn’t they realize that there is no way to change the results of the analysis? I got in touch with other unions. OTM [the Mozambican Workers Union] told me to stay at home too, so here I am, without a job.”


Diagnosing HIV

Holinda, a woman from Manjacaze, recounts her experience. 

“I felt very poorly for a whole year in 1997. I really was ill. I was in the internal medicine department for ten days. Then they gave me a certificate for the outpatients’ department at the hospital. That was in December 1998. I left the department and went home. I still wasn’t feeling well. I stayed at home for a few days and then went back to the hospital in January 1999. When I showed them the note, the nurse gave me some advice on the HIV virus and then they gave me my test results. For three days I felt really terrible thinking about it, but then someone took me to the Kindlimuka association where I met other people with the same problem who supported me; I felt normal, just like other people.” 

In this case the patient was neither counselled, nor was her consent obtained for the test.

*****

Take the case of this young 22-year old who prefers to remain anonymous. When we asked her how she found out that she was seropositive, here’s what she said. 

“It was in September 1999. I was in Maputo Central Hospital. I had malaria. The nurse sent me to the outpatient clinic. She asked me if I knew what I was in hospital for. I said I had no idea. She sent me back to the Central Hospital to get the results of my malaria test. The nurse gave me the results on a folded sheet of paper, telling me to take it to the day clinic. I handed the piece of paper to the nurse. She opened it and asked me: Do you know what the result is? When I said I didn’t, she said: Well, you’ve got AIDS.”


Access to Treatment

Another experience is that of a 32-year old mother of three, Maria Luisa Macuacua from Maputo. 

“I had a problem with a constant discharge that wouldn’t stop. It took me a lot of effort to solve the problem, but fortunately after six months I managed. It’s not easy to get to see a doctor, because of the nurses. When they find out that you’re seropositive, [it is as though you are] worthless [and] different from someone with tuberculosis for example, who can get to see a doctor. We seropositives don’t have that right, I don’t know how to explain it. Perhaps someone else could explain, but I was at my wits’ end. However, when you do get to see the doctor, you’re properly treated. For example, I went to his clinic today, and I was well treated. I was given cotrimoxazole, aluminum dioxide, vitamins and other medicines.” 

When she was asked if she took the full treatment, she said: 

“Not always; I had financial problems that prevented me from buying the drugs.” 


Women

Women’s inferior status to men puts them in a vulnerable position. Not only are they unable to persuade their partner to use a condom, but they cannot even ask about his other relationships. This puts women at higher risk of being exposed to sexually transmitted infections. The next case is typical of this kind of situation. The narrator is a widow, Cristina, who has five children. Her husband died from AIDS. When we asked how long she had known she was seropositive, she said: 

“I hadn’t taken a test, but I agreed to after my husband had been ill in hospital for a long time, and they told me he had HIV/AIDS. So I agreed to take the test because he had spent almost all his life with me. I had never been with another man, all my children have the same father. I had no idea my husband died from the disease. Of course, now I’ve got it because my husband [and I] had never thought to use a condom because we had nothing to worry about; we were together for many years and had all our children, some of whom are now married, and we never suspected each other. Besides, we had never heard of it. We never went to the STI [sexually transmitted infections] clinic at the hospital. We realized that the disease is there, but you don’t only catch it through sex, there are other ways of picking it up, so I’m not criticizing my late husband; he may have caught it in some other way, without going with other women. Anyway now I’ve got it too, because we slept together and had our children.”
Community

The experience of Ana Carlota Mendoza tells us about discrimination in the community. 

“I think the community found out about it from my neighbour, who worked in the same firm. I suppose the personnel manager was careless, he let the workers find out, and as one of my neighbours worked there he went and told the other neighbours.” 

Naturally, Ana Carlota was very upset when she found out. 

“I was shocked because when I found out I began to realize that my neighbours, my friends, those closest to me when I was in hospital scorned me. When I passed by, people who were selling things would spit or turn away when they saw me coming. I felt alone, because even when they came to visit me at home they always said they had heard that I had AIDS, and asked if it was true. They would ask how my family could live with me in such circumstances. Fortunately, my mother quickly came to terms with the problem and I stayed with her. I greeted those who returned my greeting, and ignored those who didn’t, and carried on taking my treatment.” 

Ana Carlota says she did receive visits from her neighbours. 

“They came out of curiosity, they asked me whether I really had AIDS, how I was able to eat and to walk. Only my friends were truly supportive; they encouraged me, nourished my hope and kept up my morale.”

*****

Ana da Lutência Sílvia is a widow. She too told us her story describing the situation in her family and the way she was treated by her community. 
“I had a husband, but we couldn’t live together. We fell in love, but he fled to South Africa, leaving me with two children. He lived in his house and I lived in my aunt’s house. We had our two children while we were in love, before he went away. Now I work in a woman’s house as a domestic helper so that I can bring up my children, although it is hard to find the money for everything, but at least they more or less eat.” 

She tells us how her family found out about her situation. 

“They found out, but I didn’t tell them. I was ill, and I went to the hospital with my son. It was the doctor who told my family that I was very ill. When I felt better I went home and my family started saying nasty things about me. They said that I had asked for it because I had been messing around; they even said that I was lucky that they had put up with me until I came out of hospital. I don’t even visit my aunts; the others say that if I want to go to their house I’ve got to wash my spoon, my plate and my mat if I don’t want to give them the disease. Now I’ve rented a house where I live with my children. I can’t live with anyone now because they say nasty things about me. I couldn’t even eat or sleep because I could hear my family talking about me. As my mother doesn’t live here, but in Gaza, I was living with my aunt. But then my uncle stopped liking me so I rented a house where I live with my children. My neighbours don’t know about me, only my aunt’s neighbours do. They even said nasty things to my aunt. I don’t ever go there any more, I just stay here in my house.” 

Ana da Lutência has the following message for families in which someone has HIV/AIDS. 

“My message for families in which there is someone in my situation is that they mustn’t treat them badly because they didn’t want to fall ill and no one even knows how or when they caught it. They just caught it, like any other illness, and people should think about how they treat them because one day they could fall ill themselves, so if they treat them badly it hurts them as it hurts me. They might not even have the barest minimum to live, like me, although at least I’ve managed to rent a house where I live with my children. How would anyone like to be treated like that in the same circumstances? Where would they be able to live? Wouldn’t they have to live in the street? It’s not right. I’d just like to go to Kindlimuka, and perhaps to live with other people in my situation and forget everything else. I can’t sleep at night. When I go home I can’t stand this life, not because I don’t have anything to eat—it’s life itself I can’t stand.”

Voices from Africa no. 10