Beatrice Were: Fighting a Deadly U.S. AIDS Policy in Uganda

In the early ​’90s, something remarkable happened in Uganda: While the AIDS epidemic spiraled out of control in the rest of sub-Saharan Africa, prevalence of the disease began a steady decline, from 15 percent in the early ​’90s to 5 percent by 2001. Thanks to a massive grassroots mobilization, unprecedented financial support from international donors and the leadership of Uganda’s president Yoweri Museveni, the country became a model for effectively combating the spread of AIDS in the developing world. 

One component of Uganda’s strategy was a campaign to promote abstinence until marriage and monogamous relationships (or ​“zero grazing,” in local slang). Though these programs were just part of a multi-faceted approach, the Bush administration seized on abstinence as the key to Uganda’s success and flooded the country with money to exclusively promote those and only those programs. In the last two years, Uganda has started to abandon programs like condom distribution and sex education for teens that were also part of its success. Condom billboards are coming down, and last year, the president’s wife, Janet Museveni, lead a march of thousands of virgin girls through the streets of the nation’s capital, Kampala. 

One of the voices speaking out against this dangerous shift in public health policy is that of Beatrice Were. In 1991, after losing her husband to AIDS, and discovering she was HIV positive, Were battled her in-laws in court to inherit her husband’s estate, avoided forced marriage to his brother, and set up an independent life for herself and her children. She then founded National Community of Women Living with AIDS (NACWOLA), an organization that advocates on behalf of AIDS widows. In These Times spoke with Were in Chicago, where she’d come to receive an award from Human Rights Watch for her work. She talked about the effects of stigma, the importance of grassroots activism and the dangers of mixing politics and religion. 

Could you tell me a little bit about the circumstances under which you lost your husband?

In 1991, my husband went down with a very bad illness. He didn’t have any of the symptoms that were normally talked about in association with AIDS – diarrhea, weight loss, and skin rash – so I thought it was a headache from malaria or something. I’d just graduated from university and I thought AIDS was a disease that was special to truck drivers, sex workers and people in the military. He was my first boyfriend, the first person that I married, and I abstained until I met him. When the doctor told us it could be HIV, I was very, very surprised. I panicked, and my husband was very angry at me for that. He told the doctors to take me out of the room. So I think he knew all along. 

When the doctor confirmed he had HIV, did you get tested?

I didn’t immediately because I didn’t want to confront it. I only did my test a month after he was dead. 

What happened after he died? 

One of the things I faced, which most widows face, was the struggle to inherit property. My husband didn’t leave a will, so I had to go through a fight with his family to keep his estate. Also, like many women I was customarily married [married through common law], so there was no documentation. 

So, you had no documented rights to the inheritance.

Yes, but because I went to university, I could find friends who I went to school with and ask them for advice. They told me to go to an organization in Kampala run by women lawyers and through them I managed to get representation. But because of the combination of illiteracy and lack of strategic connections, most women are very vulnerable. They don’t know where to go. 

So what happens to them?

They’re dispossessed. If they stay on communal land – most land is owned communally – they don’t have a lot of room for decision-making. If I had stayed on communal land, my brother-in-law would have married me, and I would not have had any say in it. I also believe I wouldn’t have gotten treatment and proper care for HIV, because it’s not available in many villages in Uganda. I would probably be long dead, and my children would have been orphaned very, very early. The fact that I went to school, the fact that I could use my education to find a job and also to battle with my in-laws and raise my children without depending on my in-laws made all the difference. 

Was it realizing this that led you to found NACWOLA ? 

Yes. By bringing women together, we are a stronger voice. So our organization tries to make women living with HIV visible so they have social support. We stand up for the rights of women and fight the kinds of injustice I went through. 

NACWOLA is one of many organizations that emerged to advocate for people with AIDS. How did that organizing happen?

The first cases of AIDS appeared in rural Uganda in 1982. By 1986, the country’s ministers had started feeling the impact of AIDS, and families were already coming together to do something. Doctors were so scared they wouldn’t even touch anyone with AIDS. People were going to hospitals just to stare at the patients. And because the patients were so stigmatized, they decided they had to do something. That’s how TASO, The AIDS Support Organization, started. 

Around the same time, Museveni sent troops to Cuba for training, and Castro discovered that a large number had AIDS. When Museveni was told the disease had reached his army, he began a nationwide campaign. After he took the leadership, we began to see other members of civil society get involved as well as a very large multilateral donor response from the international community, including the United States. 

What were the approaches Uganda used during this period to reverse the spread of the disease?

The president appointed an AIDS Commission whose role was to coordinate responses from different stakeholders. It developed a policy called the ​“multi-sectoral” strategy: educate the public about AIDS, give comprehensive HIV tests and voluntary counseling, and give comprehensive HIV prevention, including sex education and a clear condom policy. 

And who was funding all this?

Multinational donors mainly. The U.S. was the biggest funder and it invested a lot of money in local organizations and small programs that aimed at educating young people in prevention and sex education. A lot of money – again by the United States, if I remember – went into the AIDS Information Center, which was the first non-government organization that was started by a woman to provide voluntary counseling and testing. So it was from the grassroots, and the funding accelerated and supported initiatives that were already started.

Tell me, then, what’s changed in the last few years.

Abstinence, faithfulness, and condom use had all been part of the bigger picture. What we have seen coming in the last two years from the Bush administration is that they have interpreted Uganda’s success story as being based in the abstinence until marriage program, and they’ve been magnifying that part of the whole strategy more than everything else. And, unfortunately our president is also taking that line of thinking. What you see now is that all the other things are not regarded as being important. Condom use is now attacked as something that is evil, and you don’t see the president showing concern about the impact of stigma on people living with AIDS.

As for the promotion of abstinence until marriage, they are completely blind to the fact that a high proportion of the women infected in marriage are infected by their husbands like I was. It’s as if they think if you abstain until marriage, and you are faithful, then you’re free from HIV. They’re ignoring that women don’t have control over their sex lives often, and for those decisions to be made, women need to be empowered. They’re ignoring the fact that there are many young women, and some boys, who are forced into commercial sex because of poverty. They’re ignoring the fact that poverty is a major driving factor in HIV. There are many young women who are having sex with older men for survival. They’re ignoring the fact that there’s a whole population that is living under conflict in northern Uganda. There are women and young girls who are not choosing either to abstain or be safe because those choices just don’t apply in a setting like that. 

AIDS is now being looked at as a moral issue, not a public health issue, not a human rights issue, and the way that it’s being handled is more ideological than anything else. 

It sounds from what I’ve read that Janet Museveni, the first lady of Uganda has had a big role in this.

Yes. She’s an evangelical, born-again Christian, and I think one of the things that has mixed up the whole situation is mixing politics and religion. The first lady has been, in my own opinion, responsible for that. 

And is there a very strong, growing evangelical population in Uganda?

Yeah, it’s moving towards being popular; it’s like a fashion for young people. I think it takes advantage of the fact that people are living in very difficult times where we have people worried about political transition. Evangelicals use AIDS as a scary thing, because in Uganda it largely means death. And they use AIDS in a way to say God will judge you, you will go to hell.

If the United States wasn’t giving money to Uganda, do you still think the policy would be moving in the puritanical, stigmatizing direction?

No. I don’t think it would. The civil society has been divided by the huge amount of funding the U.S. government is pushing into abstinence and marriage programs. In my opinion, Museveni is using AIDS for his political benefit because elections are around the corner. He’s pushing Bush’s agenda as a way of maintaining power, and I think that Bush is using Uganda’s success story to also push his political agenda because he’s been imposing on Uganda what it does not want. I look back, at the time when we worked with the U.S. government very well, when we had the U.S. Agency for International Development funding comprehensive prevention, sex education and AIDS care in Uganda, and things went very well. Because at that time, the United States was committed and respectful of the communities. But now what the United States is doing undermines the success that we’ve had in the past.