If I kept it to myself - World YWCA

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If I kept it to myself supported me in many ways, including providing access to Antiretrovirals, when I needed them, as these medications where not yet available in the country. It was at this meeting, that I spoke for first time to an international audience, where Ms. Bridgett Pickering of On Land production, (instrumental on the documentary Emma Story); approached me to run a story of my life. Through this documentary, Namibians across the country shared my experience as a young woman living positively with HIV. This documentary went beyond Namibian and was translated in Portuguese and other languages. I was then invited to neighbouring countries and I started to work with young people in the region. I have accomplished much work in Botswana, as I did work with Barclays Bank youth caucus touring throughout Botswana. In January 1997, I met others and made a decision to unite, supporting each other. In 1998 I met with David Lush, a white Namibian man living with HIV and he disclosed is HIV status to me. We agreed to talk to counsellors at the state hospital and rally together those who volunteered to speak, joining with other PLWHA. A few weeks later we gathered at his house for a meeting of affected people. At a follow up meeting, which was strictly for HIV positive people, we shared our experiences, and realised that we had particular needs but few resources. It became apparent that we would need to set up a formal organisation for HIV positive people in Namibia. Supported by AIDS Care Trust (ACT) we put together our first event for HIV positive people. About 15 people came and it was a fantastic experience. Initially, we called ourselves Positive Nation. The groups existence was threatened as the entire group, (except for me) was not open about their HIV status in public so it started slowing down. As the public started knowing about the group, because of stigma many withdrew from the group, however AIDS care trust continue to support us. We met behind closed doors and the group started to grow again. The group was renamed Lironga Eparu, which means, “learn to survive” in Rukwangari, a Namibian language. The inspiration from late Teresia Masoja who said after an HIV positive result we are learning again how to survive. Lironga Eparu was registered in 1999 as a trust. In 2000, others and myself completed a country tour where we mobilized and managed to recruit more HIV positive people to join us, supported by VSO-Namibia. By the middle of 2001, we 92 held a strategic planning meeting attended by representatives of HIV positive groups from around the country. With the support of AIDS law unit, Ms. Michaela Clayton assisted with technical expertise and also co-facilitated the meeting. She assisted in securing resources for this meeting. At this meeting we agreed to set up a national association of people living with HIV. A larger group endorsed the name Lironga Eparu. I started at Lironga Eparu as a volunteer from 1999 to 2002. Today I am the national coordinator and represent HIV positive people on HIV and AIDS governing structures such as the National AIDS Executive Committee (NAEC) and the Namibia Multi-sectoral HIV and AIDS Coordinating Committee (NAMACOC). In 1999, the Health Minister, Dr. Libertine Amathila, planned to make AIDS a notifiable disease. This would, by law, require doctors to disclose a patient’s HIV status to their relatives. David Lush, three others and myself (all HIV positive) went to see the Minister of health. The Minister was excited to meet with PLWHA and we had a fruitful meeting. We were asked to draft some guidelines on how we felt the ministry should handle the issue of confidentiality and notification. We were successful and this did not become a law in Namibia. A huge project began as various organisations pooled their supporters to write a draft policy on confidentiality and notification for the government. We included the Internet forum af-aids in our discussions. The AIDS Law Unit (ALU) of the Legal Assistance Centre also became involved holding workshops and discussion forums across the country. The policy, drafted by ALU, with contributions from HIV positive people and other organisations was adopted by Cabinet in 2002. Although the current policy has been heralded for balancing public health priorities with the need to protect the rights of PLWHA, it appeared to have had limited impact. In 2003 Lironga Eparu conducted a study called The Treatment Consultation, which revealed that HIV positive people experienced severe discrimination and breaches of confidentiality in government clinics and hospitals around the country. I believe that engaging religious and traditional leaders on HIV and AIDS issues is imperative in helping communities deal with stigma and discrimination. I spearhead many community activities bringing together leaders and HIV positive people to confront matters of importance. In September 2001, a group of more than 100 HIV positive people gathered in Kavango to make their HIV status public. We organised this historic
Young women intervene in a world with AIDS event with the Lironga Eparu leader of the region, Roswitha Ndumba, the Basic Education Minister, John Mutorwa, and the Governor of the Kavango Region, Sebastian Karupu with Support of Catholic AIDS Action. That day we recommitted ourselves and vowed to end the stigma attached to HIV and AIDS. At the same event, I appealed to the Ministry of Health and Social Services to ensure that members of Lironga Eparu who made their HIV status public at the weekend received material and financial support. A 25-year-old mother of two, who desperately needed medication to see her children grow, particularly moved me. At that time the government had started a pilot project to provide ARV medication to HIV positive mothers and their babies in two hospitals in Namibia, but the hospital in her area was not one of them. I therefore appealed to the President of Namibia, Dr. Sam Nujoma, to ensure that the provision of antiretroviral medication to HIV positive people was expedited. I was able to speak with conviction as the members who had declared their HIV status that day motivated me. In July 2003, business people met in Windhoek to discuss the difficult issue of coping with the increasing costs of AIDS prevention and care. At the meeting, I pointed out that people living with HIV had not noticed the significant change in the cost of medication that the pharmaceutical companies had promised. My desire, nevertheless, is to see ARV medication distributed free throughout Namibia. I know that it is possible. What we need is a multi sectoral approach. This requires a well-drafted budget proposed by individuals, companies, and the government. In February 2002, during his first visit to Namibia, I met Stephen Lewis (The United Nations Secretary General Special Envoy on HIV and AIDS in Africa). During his visit we shared with him our wish for an office where PLWHA could gather, share, support and give each other hope. On November 29, 2002, we were so proud to be able to invite him to the opening of our offices, in the presence of the Health Minister Dr. Amathila. The Red Cross Society of Namibia generously donated office space rent-free, and the British Council donated furniture and equipment. The office is known as the House of Hope and always has a candle of hope burning. It is here that PLWHA come to share their experiences and to lend each other support when faced with stigma and hardship. I with Ms. Kanjoo Mbaindjikua have lobbied participation of leaders in our events with the support of Mrs. Joan Guriras. We lobbied the wife of the former Prime, Mrs. Joan Guriras, and on World AIDS day, Lironga Eparu organised a walk of hope. The former Prime Minister of Namibia, Dr. Theo-Ben Gurirab, his wife and all parliamentarians joined us. At this event the Prime Minister paid tribute to me for the courageous step I took in speaking publicly about my HIV status years ago - an act that helped demystify the condition and helped towards changing perceptions towards HIV and AIDS in Namibia. I was elated and emotional to see many HIV positive speakers from different corners of the country tell of fears and difficulties they encountered on first discovering their HIV status. We have come a long way, but women are not appreciated in the fight against HIV, and now I speak to men to dialogue and help work against the disease. As the first Namibian to disclose my HIV status, I enjoy good relationships and support from top officials. A few to mention are Minister of Health, Dr. Kamue and his team, Prime Minister Nahas Angula, Deputy Prime Minister Dr. Libertine Amathila, the speaker to cabinet Theo-Ben Gurirab and many others. We have established a good working relationship and are partners committed to the well being of PLWHA in Namibia. The government appreciates our input and advice, and calls on us to help with programmes on the prevention of mother-tochild-transmission and anti-retroviral therapy. They involve us at policy formulation and all other levels. I have worked with courageous HIV positive people including the late Simon Elago and Maureen Katjatako, who died as true advocates but never enjoyed the fruit of their work. They believed that providing medication alone would not curb the negative impact of HIV and AIDS. From experience, they understood that the counselling system needed to be expanded and people needed to be economically empowered. These were the issues they strongly advocated for. Today, Lironga Eparu members are counsellors at hospitals and sit on the ARV medication committee. Having discovered my HIV status as a young person, I am also committed to awareness campaigns among youth. With the support and blessing of the Namibia National Students’ Organisation (NANSO), I established AIDS awareness clubs in schools around the country. 93
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