FROM THE ARCHIVES FOR WORLD AIDS DAY
Uganda has had more success in controlling HIV and AIDS than any other African country. Much of this is due to the efforts of the Ugandan physiotherapist Noerine Kaleeba, whose pioneering AIDS Support Organization has broken down the stigma around the disease and given sufferers dignity and hope. The key themes of her mission are openness and compassion, and they are borne out of a very personal experience.
Curtis Abraham hears her story
Noerine Kaleeba started the AIDS Support Organization (TASO) in1987 while head of the school of physiotherapy at Mulago Hospital in Kampala, where she specialized in community rehabilitation. At first she was ostracized, but within six months the group was overwhelmed with patients and supporters. It has been a tragic journey: of the 16 who started TASO, 12 had died of AIDS within a year.
Kaleeba is also a trustee of the development charity ActionAid and programme development advisor to UNAIDS for Africa in Geneva, Switzerland.
WHAT INSPIRED YOU TO START HELPING AIDS PATIENTS?
Christopher, my late husband, was diagnosed with AIDS in June 1986, while he was at Hull University in England studying for his master's degree in sociology and political science. I had remained in Uganda with our four young daughters. Christopher broke down and was taken to Hull Royal Infirmary and then to Castle Hill Hospital where tests showed that he
was severely immune-suppressed. They then did an HIV test. After his diagnosis I travelled to England, under British Council sponsorship, to be with him. He was in bad shape and did not have much longer to live.
One very important element that spurred me on to start the AIDS Support Organization (TASO) in Uganda was the compassion, care and love we experienced at Castle Hill Hospital. As a black African I somehow expected them to treat us differently. I expected also that we would be stigmatized. We were the only black couple in a 600-bed hospital. We were also the first heterosexual AIDS case they had seen. Despite this the nurses went out of their way to the extent that Christopher, who was in so much pain, could be made to smile. So this experience, as opposed to what was waiting for us back in Uganda, was crucial to starting TASO.
WHAT WAS IT LIKE WHEN YOU WENT BACK TO UGANDA?
We returned home in November 1986 and Christopher died in January 1987. Those two months were the most difficult in my entire life because of the stigmatization from friends, family and even health care workers. In retrospect I can now understand. People were simply overwhelmed. They didn't understand. Moreover, there wasn't very much information about HIV-AIDS and what information there was, especially in this country, was about avoiding AIDS. There was no information whatsoever about caring for those who have it. Today I'm able to see this, but at that time it was so painful. I couldn't understand the stigmatization from the general public but I could accept it because as a physiotherapist I specialized in community rehabilitation and I had been exposed to some other forms of discrimination relating to physical disability.
But what made me angry and what I couldn't accept was the stigma I got from health-care workers in Uganda. The entire time Christopher and I were at Mulago Hospital they didn't care for us. They didn't even touch us. They were so paranoid about catching AIDS. I had taken the HIV test back in England and it had come out negative. I wanted to show that you can care and love a person with HIV without putting yourself at risk. At the time, however, I did not tell anybody about my HIV test. The doctor who gave me the test said I should do another test after six months. I didn't take that test until ten years later. I thought, people would discriminate against me whether or not I have HIV. I decided to throw myself into it with all the energy I had and plan and work as if I were HIV positive and I just prayed to God to give me time, wisdom, and energy so I could move this thing forward. I was determined not to be defeated by it, though I must confess that from time to time I was worried, thinking my children were so young, especially when Christopher died and how he died. He died in a lot of pain.
YOU THEN WENT ON TO FORM TASO. WHAT WAS THE IDEA BEHIND THE ORGANIZATION?
It was founded, as I often describe it, in pain, but also to try and turn that pain and suffering into something meaningful in the lives of people with AIDS, and also for their families. Our mission is to restore their dignity and hope. When TASO was founded, one of the early frustrations of people diagnosed with AIDS was the feeling of utter helplessness, the feeling of indignity, the feeling of being ostracized and rejected by one's family. Compassion is a key value of the Ugandan people. African people care for each other even with minimal resources. This disease was the first time I had witnessed family members abandoning each other. Communities didn't want to visit a neighbor who was ill from AIDS for fear of catching it. This, of course, is a common reaction the world over. However, I was convinced that if this disease was going to kill people, we shouldn't allow it to rob us of the key value of compassion. If you visit any of the TASO centers in Uganda you will find that people are ill, but they are not necessarily miserable. They have each other and they have hope.
But a major part of the inspiration behind the organization was Christopher himself. I used to ask him when he was ill, as you're lying there what is the most precious thing? What do you think is the most important? And he would say, just touching me, holding my hand, just being there. And you don't have to be a doctor to do that.
HOW DIFFICULT WAS IT TO GET IT GOING IN THAT ATMOSPHERE OF FEAR?
Some of my friends and colleagues said if you put the word AIDS in the title of the project people would not come, that they would not associate themselves with an initiative that was openly associated with AIDS. Today I look back and say, thank God we did, because this disease thrives on secrecy and unless we, the people who have been affected by this pandemic, stick our necks out and address it then the stigma won't go away. So our initial efforts were met with a lot of suspicion. People would come and peep and then go away. But as they began to see the solidarity of people coming together, eating together and hugging each other then people started tentatively coming. Within six months we were totally overwhelmed.
DID ANY OF YOUR FELLOW FOUNDERS OF TASO HAVE AIDS?
Out of the 16 of us who started TASO, 12 had HIV and within a year all twelve had died. That year was very difficult for us because we started with a vision of improving the quality of people's lives and helping people to live longer yet every other day it seemed one of us was dying. It nearly broke us. Nevertheless, it was another source of determination for us to continue. The year those 12 died we registered 850 HIV and AIDS clients. So even if we had wanted to stop we could not.
DO YOU STILL SPEAK TO THOSE PEOPLE WHO TREATED YOU AS UNTOUCHABLE WHEN YOUR HUSBAND WAS DYING
I still meet with some of them, but some have died from AIDS. Others eventually joined the pool of health care workers whom we trained and today they are doing some of the best care of AIDS patients. I'd like to add that my experiences with AIDS have been some of the best learning experiences that I have been exposed to. I always say that if AIDS had not come to my house, I think life might have passed me by.
UGANDA HAS BEEN MORE SUCCESSFUL THAN ANY OTHER AFRICAN COUNTRY IN CONTROLLING THE SPREAD OF HIV-AIDS. WHAT’S BEHIND THIS SUCCESS?
The key comes down to openness, which is something that many countries have failed to address. President Yoweri Museveni decided to openly tackle the epidemic when he came to power in 1986, and this was key. Museveni is a charismatic leader and he was offering to lead his people against AIDS soon after he had led them against political oppression in 1986, which worked to his advantage. But he has often acknowledged that he got his initial push from President Fidel Castro of Cuba during a meeting of the Non Aligned Movement of developing countries in Harare in September 1986. President Castro apparently pulled him aside and told him that 18 of the 60 Ugandan soldiers who had been sent for training in Cuba had tested positive for HIV. This shocked him, and when he returned to Uganda he immediately began thinking how to respond to this new health challenge.
The next factor was openness on the community level, which was led by people who were affected by and infected with HIV. Traditional healers, church leaders, Islamic imams-they all got involved. You'll find that every imam knows about AIDS and is willing to use his authority as a religious leader to appeal to young people to protect themselves. Yet another key factor was scientific discovery. Because of the openness in this country, a lot of pioneering research was done here on HIV-AIDS-not only biomedical research but also research into the sociological-anthropological factors that propagated the spread of HIV. This was going on when other African countries were refusing to allow research to be done.
WHAT DO YOU MAKE OF SOUTH AFRICA’S APPROACH TO ITS AIDS CRISIS?
The people of South Africa have mounted a gallant fight against the pandemic which crept up on them during a time of ignorance and relative inaction. The people's efforts would have obviously borne more fruit if they had not been hampered by political debates and disagreements, and if they had had a clear message from the leadership.
WHAT DO YOU SEE AS AFRICA’S GREATEST CHALLENGE TODAY IN THE BATTLE AGAINST HIV AND AIDS?
We are living on a continent where already 30 million people are living with HIV. The majority of those are young parents. People lament the fact that there will be so many orphans, but I always say if we could keep these HIV-infected parents alive there wouldn't be an orphan problem. People with HIV, if you ask them, will say, "You give me quality of life and I'll take care of my family." An 18-year-old orphan is very different to a 3-year-old orphan. So we should use the resources to care for people with HIV. This includes providing cheap anti-retroviral drugs, but also ensuring that patients have access to early and accurate diagnosis and treatment for secondary infections, nursing and nutritional care, and full psychological and spiritual counseling. A huge number of HIV-positive people do not know they are infected, and all of them when they find out will need that essential care package immediately. But all these issues revolve around poverty. Poverty is the wind that fans HIV. It is the cause and it is the consequence.
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