NOERINE KALEEBA, Protector of the Rights of People with HIV/AIDS

Unedited article published on the issue 32 of African Woman (www.africanwomanmagazine.net)

Learning from her own experience Noerine Kaleeba has taught others how to live positively with AIDS. Founder of the first organisation to care for people with HIV/AIDS, Kaleeba has fought against all discriminations attached to the disease

by Claudia Giampietri

”One, two, three, sound check!” I meet Neorine Kaleeba in her two-storey house in Mukono district, less than an hour drive from Kampala. As soon as I get out of the car, I am welcomed by the loud voice of a boy checking the sound system. Noerine hastens towards me, shakes my hand, and after introducing herself explains what such powerful amplifiers are doing in her garden: ”We are going to have a disco night! Lot’s of fun ahead!” She continues talking while showing me around and introduces me to some of the members of her rather big family. The house is crowded with youngsters that will dance at the sound of music in only a few hours. These young people are some of the 44 children orphaned or made vulnerable by HIV/AIDS supported by Noerine, and 27 of these are from her immediate family. ”They are the sons and daughters of my siblings – Noerine explains – who all died one after the other from HIV/AIDS.” Anyone who listens to Noerine Kaleeba would be surprised by the confidence and intimacy she has in talking about AIDS, as if the disease that still affects nearly a million people in Uganda only, is as close to her as her own shadow. Noerine Kaleeba is known around the world as an activist for the rights of people with AIDS. She has spent more than 20 years fighting against the stigma and the discrimination attached to the disease, and in 1987 she founded TASO – The AIDS Support Organisation – the first in the whole African continent to deal with HIV/AIDS patients. Her achievements are so monumental that a prestigious Scottish University – University of Dundee – defined her as the ‘Angel of Africa’. Again, Noerine’s friend the British actress Emma Thompson puts her on top of the list of her heroes. However, the circumstances that led Noerine to become the national guardian of the rights of people with AIDS and an international spokesperson on the issue are all but easy. Noerine has always had clear ideas about her future. She was born in a polygamous family with numerous members – we are talking about 26 children with four wives – but she soon realised that what she wanted for herself was different. Noerine was convinced that only education could break the chains of tradition that wanted women married at a very young age and subordinate to their husbands. ”As a young girl I had my dreams: I wanted to go to school, live in a nice house with an upstairs, find a good man and be his only wife. I also wished to have five children. Not only one or two, and not even eleven like my mother! Five,” she admits frankly. All in all things went the way she had hoped. When Noerine was attending the physiotherapy school at Mulago hospital she met Christopher, a radiographer who would become her husband in 1975 and they had four daughters. Despite a few initial difficulties, the marriage seemed to work and they were a happy family. Until when, in 1986, Noerine got a phone call from England where her husband Christopher was studying for a Master’s degree: “Mrs Kaleeba, come quickly – the voice at the telephone urged – your husband is seriously ill!” Christopher had been admitted to the Castle Hill hospital in East Yorkshire, England, and Noerine found his conditions really critical. But what shocked her most was the diagnosis that the doctors revealed her the day she arrived. ”AIDS. They told me that my husband had tested HIV positive. I honestly could not believe what I was told and the doctors were startled too.” Noerine recalls that the first time she read something official about HIV/AIDS was back in the early 1980s and the typical profile of a person affected by HIV was: homosexual, white, from San Francisco (USA)! ”Well, Christopher was certainly not homosexual, clearly not white, and on top of that he had never been to San Francisco! Doctors were also reluctant to admit that it was AIDS. As far as they were concerned, Christopher was the first case of heterosexual HIV positive that the Castle Hill hospital ever treated.” They were trying to figure out what could have been the cause of the infection, and they suddenly remembered. In 1983 Christopher had an accident. That was a time when the war was ravaging in Uganda and blood was scarce. Those who needed transfusions had to go to the hospital with somebody with the same blood group. ”One of Chris’ brothers gave him the blood. He died a few months later possibly from AIDS but we didn’t know. It was in that period, when we were all believing that HIV/AIDS would affect only certain categories of people, like the homosexuals, that AIDS was spreading mainly through unchecked transfusions and unprotected sex.” Being diagnosed with HIV/AIDS in the 1980s was like being sentenced to death, and Noerine confesses her despair. ”I felt hopeless and anguished. Even when the results of my own HIV test came back as negative, I had little comfort from this; I could not reconcile with the idea that my husband, the father of my four little girls, was dying so young and dying of this terrible disease. So I did what many people and families faced with terminal illness do. I started looking for the ‘cure’.” The hunting for the cure for Christopher’s disease led her face to face with Jonathan Mann, ”a scientist with a heart of gold” – as Noerine likes defining him – who was working for the World Health Organisation in Geneva and had been appointed coordinator of a global programme on HIV/AIDS. The meeting with Mann changed her perspective completely. Noerine understood that there was no cure available for Christopher and accepted the fact that he would die. ”But it became also clear that the kind of cure that people with AIDS should receive is an help to restore their dignity, to live positively with a deadly diagnosis.” Noerine left Geneva feeling much stronger and both her and Christopher came to the same conclusion: something needed to be done to fight against the discrimination and the stigma that surrounded HIV/AIDS. They left England at the end of 1986 and came back to Uganda to find a grim and hostile environment. Fear and ignorance of the virus prevented friends and health personnel to care for Christopher. ”It was the worst experience of our life. Doctors and nurses did not even touch him or dare to step into his room,” Noerine recounts without hiding her anger. At that time, patients with AIDS would be dismissed and no medication was prescribed. The general attitude among doctors was: ‘it is useless to cure the symptoms of a person who is doomed to die’. ”We decided to take action and started looking for AIDS patients in the hospital. We invited them in Christopher’s room and explained them as much as we knew of the virus, and talked to them about their rights. We came to form a support group which then gave life to TASO.” Christopher passed away on January 1987 leaving up to Noerine the daunting task of continuing to fight for the cause. Soon after Christopher’s death, Noerine founded TASO along with other 16 people out of which 12 were HIV positive and died within the year. The government granted them political openness: unlike other African countries were HIV/AIDS was kept a tabu subject, Uganda was the first one to openly talk about it and take decisions to deal with the disease. Initially, the funds available from the international community were all channelled to prevention’s programmes that targeted the population not affected by the virus, and it took them a long time to change strategies. ”If you don’t give counselling to people with HIV and you don’t help them to feel that their human rights and dignity are protected, they will go ‘underground’. And since the words HIV/AIDS are not stamped on the face of those who are positive, it would be difficult to recognise them and eventually the disease would keep on spreading and killing.” AIDS, that entered Noerine Kaleeba’s life in 1983 to upset her with the death of her husband, has actually never left her. After working 13 years for UNAIDS in Geneva, Noerine has recently come back to Uganda and dedicates most of her time to the 44 orphans that live with her. ”Taking care of these young people is a challenge and my future. This favourite human being of mine – she says pointing at her first grandchild Christopher who is affected by autism – has convinced me to do something about autism and I used some of my retirement money from UNAIDS to build a centre for autistic people in Entebbe. I look very much ahead, and the biggest lesson I learnt from the past is that no matter which disease affects you or how long you have left to live: we will never find the cure to mortality, but we have the right to live a dignified life.”

5 thoughts on “NOERINE KALEEBA, Protector of the Rights of People with HIV/AIDS

  1. bonjour Mme Kaleba ,des femmes comme vous ,il y en a pas deux,parce que tous les efforts
    et les bonnes actions que vous faites,démontrent et garantissent que christopher n’est pas mort pour rien.
    MATHIEU 29ans séronégatif

  2. Bonjour noerine Kaleba,je trouve que vous etes vraiment quelqu’un d’extraordinaire,des femmes comme
    vous ,il y en a pas deux;Parce que tout votre courage,vos efforts et vos bonnes actions,démontrent et certifient
    que christopher n’est pas mort pour rien.
    MATHIEU 29ans,francais,séronégatif

  3. Hey Noerine, In my quest to try and find Mrs. Bernadette Olowo-Freers, I decided to try and get any information related to you, and I am amazed at what I have read, I must admit, I knew very little about you when we worked together in UNAIDS. You are a woman of substance indeed and what you do, the TASO programme leaves toung tide.
    My name is Angela, I hope you do remember me, from UNAIDS in Lusaka, Zambia, the office we set up with Mrs. Freers. If you do have her number, would appreciate getting it, she is my mother indeed. Please pass a message of a happy birthday to her, I know her birthday was on 30th July and tell her I will be finishing my law degree this November.
    God’s blessings,
    Angela N Inambao
    angienku@yahoo.co.uk
    +260 966 851975

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