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The Advocacy Project seeks to help community-based advocates produce, disseminate and use information, and so become more effective advocates for human rights and social justice

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Issue 2: The Face of AIDS

Youth Against AIDS
Volume 1, Issue 2 - December 3, 2001
The Face of AIDS

Contents:

• Introduction: The Face of AIDS
• Cry of Rage
• Symbol of Hope
• Letters

The Face of AIDS

The two young women profiled in this issue, Palesa from South Africa and Inviolata Mmbwavi from Kenya, help to put a face to the AIDS epidemic that is sweeping Africa. Both were infected by the HIV virus in the early 1990s. They come from different ends of the continent, but their stories show how AIDS thrives in the same climate of ignorance, social pressure, and sexual violence.

The two profiles were commissioned by YAA. Palesa told her story to a friend at the request of Adam Frankel, who traveled to South Africa and Botswana. Ms. Mmbwavi's profile was written by John Kamau from Rights Features in Kenya.

The stories of these two young women show that it is not easy to pinpoint any one cause or ascribe blame and responsibility, for the spread of AIDS. This explains why the epidemic is proving to difficult to confront.

One example is the role of the family. Many talk with nostalgia about the bonds that unite African families and lament the breakdown of the family that occurred under colonialism and the imposition of Western values on African society. In the case of South Africa, family life was also savagely affected by apartheid.

But the stories of Palesa and Inviolata show that even within African families, parents must be more attentive to the needs of their children, particularly as they enter adolescence. Both of these young women recall indifference and neglect from their parents. Palesa was even raped by her mother's boyfriend.

There are remarkable similarities in the description of how these young women contracted the virus. In some respects, this makes them representative of the entire continent. But the differences are also striking. Palesa's story is a cry of rage. As she says: 'I want to destroy life in exactly the way my life was destroyed.'

Inviolata's is a message of hope. She too was devastated at the news at her infection, but she has clawed her way back to the point where she is now - an inspiration to millions of young Kenyans. As she tells John Kamau, her newest ambition is to stand for parliament so that she can represent those who are affected by HIV.

Cry of Rage

I, Palesa, was born in 1985, the oldest of three children born to my parents. My father worked for the City Council as a laborer, while my mother did odd jobs for whites in the suburbs.

In 1992 my father was killed during a faction fight at the hostels in Soweto. I remember his funeral vaguely. I hardly remember him, as he did not seem to spend much time at home with us. Knowledge of my father I gleaned mainly from my mother and my late father's relatives who sometimes came to visit us.

I enrolled at the local primary school, and because I was bigger and older than the other kids, I was obliged to associate with older and bigger girls. I was not doing well at school, and I mixed with those who seemed to be the popular ones. My mother seemed to be working longer hours, and my siblings and I had to fend for ourselves after school.

Many nights we went to bed without eating, and we did not have school shoes. When I was nine years old, I started smoking and bunking school. The bigger boys at school took us to a house where we listened to music, smoked, and sometimes had a few beers. I then started having an affair with one of the boys who bunked at school with us. At first we only kissed and cuddled, but one Friday, after drinking beer and brandy we had sex.

I cannot remember much of this, but when it was home time I realized that I had been bleeding from my vagina and that my panty was blood stained. I did not confront my 'boyfriend' about this, as I had heard and seen what had happened to the other girls in our group. On Saturday I met my best girl friend and she congratulated me on becoming a 'woman.'

From then on I had sex with my boyfriend regularly. After about four months of this, he stopped coming to the house where we did all this. Soon I was having sex with another boy in the group. I did not enjoy the sex, but loved being with my friends and doing what they were doing.

In 1997, my mother fell ill and could not go to work. Her boyfriend used to visit and sleep over. When he was around he bought food for the house, and he normally sent me to the shops. I used to buy from a particular Spaza shop, because the man there seemed to like me. He always gave me something extra. One evening he invited me into the back of the shop. He told me he loved me and started kissing me. Soon we were having sex.

After that, we used to have sex at least four times a week. One weekend my mother was admitted to hospital, and her boyfriend came back to our house as usual. He sent me to the shops as usual. I had sex with the Spaza shop owner as usual. When I got home, we ate what I had bought. We then got ready for bed.

My younger brother and sister soon fell asleep. My mother's boyfriend came to call me. He took me to my mother's bed and raped me. He must have done this three times that night. When he left, he said that if I told my mother, he would say that I was not a 'virgin' and thus had had sex many times before.

With my mother not working, I had to rely more and more on the Spaza shopkeeper to feed our family. He could also only give us a limited amount. I then started flirting with a taxi driver. He did not mind giving me money, but he demanded sex twice or three times a day. In the meantime my mother's health was getting worse. She lost weight, had swollen glands, and perspired through fever. In 1999 she died.

In the meantime my best friend told me that one of the boys in our group had died of AIDS. By that time I had heard about AIDS but did not take any notice of its impact. Someone also told me that my mother had died of AIDS. I now became scared as I had had sex with the boy who had died and my mother's boyfriend. Nthabiseng (my best friend) and I then went to the local clinic. We were told about AIDS and how it was spread by unprotected sex.

I did not do anything then but continued having sex with the Spaza shop owner and the taxi driver. One afternoon, when I got to the Spaza shop, I was told that the owner was very sick and had been admitted to hospital. Within a few weeks in hospital he was dead. I now was frightened. What if I had the virus?

The Monday after the funeral of the Spaza shop owner, I went to the clinic to be tested. A week later the results came. I was positive. The nursing sister at the clinic explained to me what this meant. She told me what to eat, and how to conduct my sexual life.

As I thought about this illness, I realized that I had brought this on myself and vowed to have sex with as many men as possible. I was angry. Someone gave me the virus thereby shortening my life. Why should I be concerned about the lives of others, if they did not consider my life also? If I was going to go, I was going to take others with me.

What saddened me more was that I never enjoyed sex. It was so mechanical. A few shoves, sometimes an orgasm and its all over until the next time. To me it was more a job, an economic key to alleviate my poverty. Initially it was wanting to be part of the crowd, but in the end that crowd excluded me. We had become a crowd of walking dead.

The sister at the clinic had told me what to eat, but where was I going to get the money to buy all that? I was not qualified to work, as I had no qualifications, and in any event jobs were scarce. My choices were limited. I was going to die, and I needed money to survive until then. So, I would continue earning a living as I did before.

My anger is still excessive. I have been let down by my parents - my mother in particular. I have been let down by my friends, my school, and my community. They never gave me a chance to live but have encouraged me to die, actually making the pathway to death look rosy and attractive.

I have been counseled many times, but I remain unmoved. I want to destroy life in exactly the way my life was destroyed. You may hate me for this; I also hate myself for feeling this way. Maybe in time I will feel differently, and then I may act differently.

Symbol of Hope
by John Kamau

Being HIV-positive doesn't put 28-year-old Kenyan activist Inviolata Mmbwavi down. She remains confident, down to earth, and still raring to go. As a result, she has become a symbol of hope for many infected youth in this east African nation of 31 million people. 'I live positively,' she tells me as we prepare for the interview.

She was born in 1973 in the western Kenya district of Kakamega into a polygamous family of 10. 'My mother is the first wife and I think that I missed fatherly love from the word go I saw little of my father and that perhaps explains the situation I am in today.'

She had time on her hands and met her first boyfriend in August of 1991. 'In December I had my first sex and in April 1992 I was diagnosed HIV-positive. That is what I call fate.'

Mmbwavi fell sick with a skin infection. She went to a local hospital, and the doctors asked for a blood sample. 'I was not suspicious of anything and the issue of being HIV-positive did not cross my mind.' A day later she returned to the hospital early to get treatment. When a nurse told her she was 'positive,' she started smiling. 'You see, we all associate positive with good things. I think I was a bit naïve until the nurse became blunt and told me: 'You have AIDS, and you are going to die!''

Like so many others who had not had counseling, Mmbwavi was devastated. 'I can't remember how much I cried that day on my way from the hospital.'

Mmbwavi was also pregnant, although she did not know it at the time. 'I traveled to Nairobi and went first to Kenyatta National Hospital. They sent me to a city antenatal clinic, which never told me my results. I then went to a family planning clinic where another test confirmed my fears. I did not stop there. I went to KEMRI (Kenya Medical Research Institute) and got the same results. Then I decided to just wait and die.'

For five years, Mmbwavi kept the secret of her infection to herself. She kept myself busy hawking cigarettes and sweets. She also worked as a clerical officer.

In 1994 she fell sick again. 'Everybody thought I was going to die. They even told my brother to take me home to Kakamega to die there since it would be expensive to transport my body if I died in Nairobi. Some people even told my father not to take me to hospital and spare the money for the funeral.'

After one week with no medication, she was very weak. She could hear people passing by the house, talking of how they would be soon be visiting for a burial feast. 'Then my father came to see me. He looked at me from head to toe as I slept. After that I was taken to Mukumu hospital. I left the hospital after 10 days, very weak but optimistic. I prayed to God and asked Him to give me more life.'

Still, she felt like a reject within the family. 'My mother saw me as a wrong role model for having a child outside marriage. By this time (my parents) had heard rumors that I was HIV-positive, but no one dared to ask me and I never bothered to tell them. I ran away to Nairobi to stay with a cousin, but the relatives wrote to my cousin informing him about my HIV status. There was one particular female cousin who told my male cousin that I have AIDS and would infect the entire family. Surprisingly, she died of AIDS herself.'

• Speaking Out

The turning point came in 1996 when Mmbwavi stumbled on a small advertisement in Kenya's 'Daily Nation' newspaper about counseling at the Kenya Red Cross office. She called the hotline number and was given an appointment. 'From that time I started learning to live with HIV-AIDS,' she says.

During the 1997 general election, Mmbwavi was selected as a deputy presiding officer. It was the first time she had earned any money: 10,000 Kenya shillings ($128). She also took on clerical jobs in an industrial estate. It was hard and stressful, because she had to wake early and sometimes had to work at night. 'I was a bit unfair to myself because I knew about my health status,' she says.

The next turning point in her life came in 1999 when she read a copy of the youth magazine 'Straight Talk.' ('Straight Talk' is widely distributed in Kenya and will be profiled in a later issue of this series.)

'I read experiences of other people going through the same agony I was in and I thought, why shouldn't I share my story with someone else? I wrote to them and told them I would like to share my story with them. They called me and we talked. I was confident, and believe me, they decided to employ me. This was good for me. I could report at 9 a.m. and leave at will. They gave me 200 shillings ($2.50) a day but later employed me for 7,000 shillings ($90) a month.'

Mmbwavi's task was to encourage young people to go for HIV-AIDS tests. She was so successful that they started to flock to testing centers. She did so well that she was selected to study for a certificate in counseling. She graduated in February 1999 and came to the attention of a visiting group of Americans who arranged for her to visit the United States on a youth exchange program. This allowed her to get some training in youth development issues.

In August 1999 Mmbwavi joined a prominent nongovernmental organization (NGO), Women Fighting Aids in Kenya (WOFAK), as a coordinator for home-based care. 'I enjoyed my work and encouraged young women to live positively,' she says.

• Discrimination and Skepticism

Inviolata Mmbwavi had became the most articulate young Kenyan in the battle against HIV-AIDS. But even as national figure, she continued to face stigmatization in her personal life.

By 1999 Mmbwavi was now living in her own house. Her cousins had leaked the information of her HIV status to the neighbors, and Mmbwavi found she had no friends in the entire suburb. The women in the area even boycotted a small shop run by her brother. Men continued to buy goods from the shop, but they sat around in groups discussing her and pointing at her. She remembers how her child was beaten by another neighbor's child. 'When I went to ask the mother she told me, 'Jikaze mama, tunajua shida yako' [struggle on mama, we know your problem].'

The story of Inviolata Mmbwavi's HIV status continued to circulate in the neighborhood. People from her village even let it be known that her HIV status had been written on a blackboard at the District Commissioner's office. It forced her and her child deeper into isolation. But even this did not bring her down. She was determined to live on and soldier on.

She says that the best guarantee of positive living is learning to speak out, even though it has been a painful process. 'I first talked to one person, the church elder. At the age of 25, I gathered courage and I started speaking to smaller groups.'

Her audience is often skeptical and hard to convince. Mmbwavi has frequently been forced to have a test before young people to prove that she is HIV-positive.

Many in her audience also assume that only those - like her - who are talking are HIV-positive. She reminds them that there are many more who are silent. 'I have made many of them understand that you cannot tell who is HIV-positive and negative by looking at their faces. I even tell them to go for a test before getting married.'

Mmbwavi has become a familiar face on Kenyan television, and she estimates that she spends about 90 percent of her time counseling young people. She tells them that they do not have to be promiscuous to get infected and speaks out strongly against the Catholic Church, which has rejected the introduction of sex education in schools and opposed the use of condoms.

'We have been made to look like people who are out to promote immorality. [But] with or without condoms the youth are still having sex. When you tell people to use condoms you are not telling them to go out and have sex.'

• Moving Government

One of Mmbwavi's greatest achievements has been to help change the view of Kenya's parliament and so force the government into taking the epidemic seriously.

It happened when Kenyan members of parliament attended a seminar on AIDS in the coastal town of Mombasa. Tom Mboya, the head of National STD/AIDS Control Programme (NASCOP), had asked that two young people be sent to the meeting. Mmbwavi was nominated and took on the task of addressing the Members of Parliament (MPs).

She emerged as heroine of the day. 'I can tell you I did some good work in front of the entire government machinery! I left the dais knowing very well that they have got the message. When the rowdy politicians fell silent, I knew I had fought the stigma and negative attitude,' says Mmbwavi proudly.

She later received a letter from Dr. Richard Leakey, who was head of the Kenyan civil service at the time, congratulating her for having changed the perception of MPs toward AIDS. 'Two weeks later I got a letter inviting me to sit at the board of National AIDS Control Council (NACC),' she says with a broad smile on her face. The council is the country's supreme policy-making body for the issue of AIDS.

• Woman of Ambition

Looking ahead, Mmbwavi has many ambitions. She wants to see her daughter grow up and get the best. She wants to fight marginalization and get her master's degree in counseling.

'If time is on my side, I crave to be a Member of Parliament where I can articulate these issues,' she says before summing up our interview: 'Let death get me wherever it wants. That doesn't tie me down. I have to get what I want.'

It is because of such ambitions that Mmbwavi has become such a symbol of hope - and a testament that one can live positively. And she has one final request for her new friends in the YAA network: 'Help me to get to a university to do a master's in counseling..'

• This article has been shortened to fit the format of this newsletter. To read the unedited version of John Kamau's profile of Inviolata Mmbwavi visit the YAA website.

• Contact Mmbwavi at this address.

About the Author

John Kamau is director of Rights Features Service in Nairobi. He writes:

'Rights Features Service was founded in 1999 to disseminate information on human rights to both the media and advocacy groups and to allow journalists to take a pro-active stand on ignored issues without compromising the standards.

'Over the last two years we have been involved in Free Press Campaigns in both Kenya and Uganda through collaboration with U.S.-based Digital Freedom Network. We have also been working with Africa's last known honey-hunters, the Ogiek, who are an indigenous forest-living community, in helping them carry out an Internet-based campaign on the fight against the destruction of their forestland by timber interests.

'This year [we have] started a partnership with the US-based Advocacy Project and Youth Against Aids (YAA) to profile young activists living with HIV-AIDS and activists working with them. We have started collaborating with a UK-based NGO, Kabissa-Fahamu, to become the east African partner in covering advocacy, development and human rights issues for the Kabissa-Fahamu-Sangonet newsletter. [We also work with] Global March International in providing material for Child Labour News from east Africa, and for east African media organizations.

'Other campaigns we have been involved in include small arms, and landmines, and we actively participated in drafting the Code of Ethics for Kenyan journalists. Rights Features Service was asked to do research and write a report on landmines in Burundi for year 2000 for Landmine Monitor Project of the International Campaign Against Landmines (ICBL). This was conducted on behalf of the Kenya Coalition Against Landmines. In 2001 Rights Features carried out research in Tanzania in collaboration with Jesuit Refugee Service.

Contact Rights Features:

The Co-ordinator
Rights Features Service
College House
University Way, PO Box 63828
Muthaiga, Nairobi, Kenya
Email

Letters

The press release announcing this series has already generated correspondence - some critical and some sympathetic.

'Please desist from sweeping generalizations...''

The following letter was received from Phiroshaw Camay, Director, Co-operative for Research and Education (CORE), South Africa.

November 28, 2001

I really need to challenge your sweeping statement that 'young people have been sidelined by governments.' In South and Southern Africa our experience is very different with many young people leading organizations and actively participating in education, support, and caring for the affected and infected persons. In 1992 the National AIDS Plan in SA was developed with support from young people and their organizations. Many individuals today participating on the national and international scene were part of that process.

Please desist from sweeping generalizations that make Africa and Africans look backward. I would like to suggest that you re-examine the note distributed and measure it against your own experiences in the USA.

• Contact CORE: P O Box 42440, Fordsburg, South Africa, 2033. Tel: (27-11) 836 9942, Fax: (27-11) 836 9944. Email them.

On deprivation and prostitution

From: Pieter Heres

Thank you for championing the cause and being a voice for the voiceless. There was the following statement in your message that really bothered me and have experienced in many nations:

'One thing emerges repeatedly - it is deprivation, ignorance and coercion, rather than irresponsible behavior, that render young people most vulnerable to AIDS..'

It seem that economics are in many occasions the overriding factor and victimize people. Money makes good many wrongs.... There are people around that buy sex... for cheap, and that is not right. The best message we can give the victims is to say 'better to be poor, better to go without education, than to sell your body for a few cheap dollars.'

At the same time we need to continue to expose those that victimize other people. In my opinion this is a matter of world-view, where people need to be convinced of their tremendous value as human beings and also view others that way. The message has to permeate all of society - the ones that have wealth and the ones that have absolutely nothing.

As your message indicated, governments for a variety of reasons often do not take the initiative in protecting the young, the poor, and the weak....

Keep up the good work.

Pieter Heres

In the next issue: Building the YAA Network

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