Despite the risk of social stigma, an increasing number of people infected with HIV are speaking out. Some are becoming active in their communities, working to reduce discrimination and secure better services from groups that provide counseling, income support, and prevention through education.
On the other hand, some of the rural areas remain shrouded in denial, shame and fear especially after the Genocide. However, there is need to prioritise strategies that address the stigma and discrimination that follows Aids sufferers.
Through testimonies aired over the radio, all kinds of people are affected by Aids, and their stories are bold, expressive and moving.
The public has been bombarded by billboards beside all Rwanda’s roads proclaiming thus: WITEGEREZA IGITI KIGORWORWA KIKIRI GITO – a ministry of Health encouragement to parents and all concerned to talk to children about sexual awareness, so that they become educated to the inherent dangers of sex before getting well-prepared for it.
This and other such messages mostly include appeals from government, community and society at large to ensure that the fundamental human rights of individuals are upheld to provide care and support for orphans, to alleviate poverty, to provide access to treatments, and to ensure that the voices of women and children are included in all aspects of society.
By doing this, creative solutions to breaking the silence can be realised which mostly emerge from the greater involvement of people living with HIV/ Aids and the process is important as it actually begets results.
”Participants expressed pride in being heard on radio where they were valued and respected for having something worthy of sharing,” says Clere Mujya, a journalist at one of the radio stations in Rwanda.
Mujya adds that the process is an outcome of the project which involves individual empowerment, perceived reduction of stigma, and increased solidarity between people affected by HIV/Aids and service providers which play a vital role in ‘Breaking the Silence’.
"Right now, nobody can tell how many people have Aids," says Dorothy Kanamugire, a counsellor in Kigali Hospital. She adds that at times people are not told the truth by the nurses; for example if a person died of Aids they will say that he died of tuberculosis or cancer.
Kanamugire says that they do not have the exact statistics of how many people die of Aids because people do not want to break the silence, yet many die while still young.
“The kids are told: ‘Your uncle is sick; he is having TB,’” Kanamugire adds.
Then the kids end up not knowing the truth, because they will go around with the conviction that their uncle’s malady is TB, which is not right. Children should also be told because most of them do not know what Aids is.
She adds that a child may say that Aids doesn't kill because he never saw anybody die of it. Kanamugire urges parents to break the silence because it is of great benefit when children get to know about it so that they can be careful.
Joseph Kamana, a graduate at Butare University, says that to help break the silence, prostitutes also need to be sensitized because they are part of those who spread Aids because most of them have few choices.
"Most of those who are infected are the ones who have to go out on the street to do some prostitution so they can have bread at home," says Kamana.
She adds that when they go out there, their men clients often refuse to use protection in form of condoms. So that is how they get involved in sex without any protective measures. They end up getting infected, and we end up having lots of orphans.
Donatha Mukahigiro, a counsellor in Kigali University Central Hospital (KUCH) says that the Catholic Aids Action based in Butare, is taking care of many orphans.
"They have to give them lunch, breakfast and dinner. The Aids Action also helps people having problems in their houses especially those who do not know how to take care of the patients, so [Aids workers] go to that house and they give counseling on how they are going to treat the patients and how to show them love and care,” says Mukahigiro.
To assist with their work, the Catholic Aids Action shows those infected how to make beaded ribbons to sell so that they get some income for food for orphans, because they cook for the children and for themselves.
“Though they have the virus it doesn't mean they cannot do anything,” says Mukahigiro.
She adds that the "ABC campaign" Abstinence, Be faithful and use Condoms is almost everywhere but having little effect. She adds that measures to let the truth come out are being put in place to break the silence so as to fight the spread of HIV.
Mukahigiro says that she is collecting more information from hospitals, pharmacists, and other local sources to get more information compiled, and she believes that the break the silence campaign has started to bear fruit in some areas.
“We are trying to give free Internet connections to schools because we want to develop this project and dedicate it to the youth; for example if the teacher talks about HIV/Aids, they must visit our site to get all the information they need," says Ephraim Munyaneza, the Director of Teach Youth Commission (TYC) based in Butare.
Munyaneza says that what pushed them top set up the establishment was the worry about the street kids and the orphans in homes with no help. He adds that the commission visited the street and many homes and found out that the children’s mothers are dying, their fathers are nowhere to be found. Munyaneza says that among the reports he got says that once the mother dies, the grandmother has to take care of the children, and the grandmother is living on a small income only earning about Frw5,000, not enough to send the kids to school and take care of them."
Munyaneza was recently in the United Kingdom talked to the young children about the dangers of Aids and gave them some ribbons to show that they should always keep aware of Aids. Munyaneza gave out some of the red ribbons which were hand made by the orphans in Rwanda as an income-generating project for people infected and affected by HIV/Aids.
Creating awareness about Aids in schools
Orphans and widows in Butare have formed groups, and the groups are charged with sensitising other people about HIV/Aids. The campaign which began in small groups went on to reach different schools in Butare, and some students said that one of the teachers helped them overcome shyness and fear in dealing with fellow students who are affected.
“Before Joyce Mukandaga our former teacher passed away she wrote a letter to us saying she was away from school because she was bedridden because she had HIV/Aids,” says Olive Mukankusi, a leader of the group at her school.
Mukankusi adds that they missed classes for three weeks because the teacher was sick, so when most of the students read the letter they got so sad and angry because they loved her so much. She adds that the students decided to join the campaigns against Aids which has helped them grow strong and also create awareness among the fellow youth because everybody is liable to getting HIV/Aids.
“My mother died of Aids, but before she died she had prepared lessons at home teaching us that sex is bad. She always told us that sex is not love, and that we should avoid it,” narrates Claudine Uwamugabo, a 15-year-old girl who is also in the campaign of breaking the silence on Aids.
Miss Phoebe Kaliisa, a teacher at Tumba de Ecole, plays a big role in telling her students about the deadly disease.
“I prepare private lessons for my students and I tell them the cause of the sickness and I warn them about HIV and Aids,” says Kaliisa.
She says, however, that very few people agreed with her when she decided to speak out that she was HIV positive.
“At first it was not easy for me and my very own people at home did not want me to say it out because they knew it would lead to segregation, discrimination and being talked about in the area,” says Kaliisa.
She adds that it is after she got well that many of the students got to know the truth because she met them and talked to them openly that she was an Aids patient.
The Teach Youth Commission (TYC) believes that it’s high time the young generation is told about Aids; otherwise most of the youth will be misdirected and later die. They believe it’s their duty to speak out and create awareness about Aids before the young generation perishes out of sheer ignorance.
When awareness is created, young people develop the knowledge, attitudes, self-esteem and skills needed to manage their relationships safely and happily and also to cope better with the crisis of HIV /Aids which is affecting all communities today.
People who have broken the silence about Aids
People should not fear talking about their HIV status because there are already some who have broken the silence about Aids.
Nelson Mandela urged us thus: “We need to break the silence, banish stigma and discrimination, and to ensure total inclusiveness within the struggle against Aids. Those who are infected with this terrible disease do not want stigmas. They want love. Together we can make a difference.”
Arthur Ashe, an American tennis player declared his status before he died.
Magic Johnson, an American basketball player, discovered he was HIV positive soon after he was married . He now talks openly about his changed behaviour and living positively with HIV.
Nkosi Johnson, a young South African boy spoke to the world about accepting people living with HIV /Aids few years back.
And yes; nearer home, late renowned Ugandan singer Philly Bongoley Lutaaya was one of the very first Ugandans to declare his HIV status, and his star status helped change the manner the Ugandan government, and indeed the world, later on decided to confront the scourge – with openness.