Guardian Weekly: 'I thought Americans invented HIV to discourage sex'

Though the rate of HIV/Aids in Liberia is lower than other places in Africa, at just 2-5%, fourteen years of only recently-ended civil war means that outreach, treatment and prevention work has had a late start. Many fear that the epidemic will explode in post-conflict Liberia, as people regain freedom of movement and the economy recovers. A small group of dedicated people have banded together and formed the Light Association to fight the spread of HIV/Aids. The president of the Light Association Joe-Joe Baysah, the first man to publicly declare his HIV status in Liberia, describes the work he is doing there.

Joe-Joe Baysah was speaking to photographer and journalist Glenna Gordon. Read the story on Guardian Weekly here.

My late wife had a husband before me who died in December 1999. We didn’t know why. His sister came and told us he was HIV positive, but we didn’t believe her. We thought a witch had done it. We’d heard about HIV and Aids on the radio but we denied it at the time. I thought it was something that Americans had invented to discourage sex.

In late 2001, my wife started getting sick. We didn’t think it was Aids. We just thought she had malaria. My wife died on April 4, 2002. Before that time, I was sick too. Very very slim! I got an HIV test and it was positive in January, 2002 along with my wife. But we didn’t have any counselling so we weren’t ready to accept the results.

Every day I would leave home and go hide in the bush. I was ashamed to see anyone. Only later, when I went through counselling at the Catholic Hospital in Monrovia and I learned more about the disease and about living positively, I was ready to accept my status. No one should ever have to learn his status without counselling.

At this time, stigma and discrimination in Liberia were still very very strong, but my family agreed to support me. My mother and father taught us to love one another. They accepted me.

In 2003, Jewel Howard Taylor, the wife to former president Charles Taylor, told me that I should come forward and break the silence about HIV. I told her I was unwilling to do that unless treatment was provided. She agreed to help bring anti-retrovirals (ARVs) to Liberia and to help with the school fees for my children.

On December 1 2003, at City Hall in Monrovia, we held a press conference and I said that I was HIV positive. Some people still didn’t believe me and said that I was just saying I was positive to get support from outside. At that time we also formed the Light Association, an umbrella group of people in Liberia living with HIV and Aids.

It took a lot of work, but now more of my neighbours have accepted me. They see me now and see that I am strong and stout, and they remember when I was too slim. They will shake my hand now, and share food and drink with me.

I have remarried. I met another lady who is also HIV positive through the Light Association. I know we can re-infect each other, so we are very careful together. We have had two children, in addition to the two children I have from my first wife, and all of them are negative. When my current wife was pregnant we carried her to the hospital and she had PMTCT treatment (Prevention of Mother to Child Transmission) before and during the birth of both children.

These days, with the Light Association, I speak on the radio, go door to door, and do community outreaches to teach others about HIV. But not everyone is accepting. At the school my children attend, they were sent out because of my status. Some of the people in the community heard that I was positive through the outreach I do on the radio, and they called my kids, “Aids children.” We found another school for them.

The situation in Liberia is still very difficult for people with HIV. Even though we have some ARVs, we don’t have treatments for opportunistic infections. We don’t have anyone in the government advocating for us. We are dependent on funding from donors such as Global Fund and the Clinton Foundation, and we know they might leave sometime.

There is still a lot of stigma. People who are renting can be kicked out of their house because their neighbours are afraid they will get HIV from sharing water and toilets. When I go to do outreach, people still don’t understand. I tell them about how you can only get HIV from someone else, not from a mosquito. I explain that HIV travels in the body’s fluid. Sometimes people laugh when I talk about semen and vaginas, but I know it’s necessary.

I think the stigma is reducing. It’s not gone, but it’s getting small, small, better.