Interview. From outsiders to organizers, from prevention to support

Although it may be too early to talk about a history of AIDS organizing by our communities, we do need to better understand how and why mobilization around HIV/AIDS got started. What were the political stakes of early AIDS organizing? Did work get started in response to the needs of ’enlightened’ liberal policy makers or because of public health racism? What role was played by people living with HIV/AIDS, and how did early organizing meet their needs? Who set the agenda? Was there a connection, early on, between AIDS organizing and broader immigration or antiracist struggles?

In this first article of a series about AIDS organizing history, MAHA talks with K.A. Adanse Pipim and John Hammond of Amsterdam’s African Foundation for AIDS Prevention and Control (AFAPAC).

MAHA: How did the African community respond to the statistics published in 1988 showing that HIV was affecting migrants in Holland?

K.A. Adanse Pipim: We realized that our comunities were affected. But when we went out into the community to talk about AIDS, we were asked: are you talking about AIDS because you believe what the Europeans believe, that we are the people responsible for HIV/AIDS? To this we said: no, we see it as a worldwide problem.

The myths around HIV/AIDS meant that Africans were targetted as those who brought HIV/AIDS. First, they were discriminated as Africans. Second, as migrant Africans living in the Netherlands, we are faced with the problem of health, with social and economic problems. So your problems are so intense that you will avoid anything that puts extra pain on you as a community, you are afraid of being discriminated against because of HIV/AIDS.

AFAPAC’s research since then has shown that Africans who have lived here in the last five years, have more information than the Africans who have been in the Netherlands for the last 10 years. So we asked: how do we reach the people who live here? Our work is for Africans living in the Netherlands, with their specific needs.

John Hammond: I’ve just come back from West Africa, and I found that those governments are very concerned with AIDS education. I saw programmes on television, heard programmes on the radio. Community-based programmes, where people go into the community to spread the information. For a long time, more work was being done in the African countries than in the African communities in Europe.

Was there a fear of backlash if numbers about HIV were published?

Pipim: We believed that if something was published in the community, then we should have a say in it. If we say it ourselves, it is easier for the community to take it on than if it comes from the other side. So we always tried to not influence or reduce the numbers, but to ensure that the numbers were used in an appropriate way for the community.

Doesn’t it seem ironic, that the people insisting that "AIDS is an African disease", did not think of African needs for prevention and support?

Pipim: It may seem ironic but it is not. In 1983, when the first person with AIDS was identified, the Dutch institutions started an intensive campaign. The government was concerned by prevention for their own people. Migrants were considered to be outsiders.

In the Ghanean community - and I’m sure it’s the same for the other African communities - when you say you’re dealing with Ghaneans, you might find you’re dealing with people who hold Dutch passports, but they never cease to consider themselves as Ghaneans. When someone sees me, they don’t see me as a Dutchman because physically I am not Dutch. That’s why people from other countries who have acquired the Dutch nationality still stick to their nationality of origin.

Hammond: An African always remains an African, and still has elements of his culture inside him...

Pipim: In 1988, I invited a Dutch doctor to my community radio programme. He was the first guest to talk about AIDS. He started saying that the AIDS problem was coming from Africa. The whole community reacted very negatively. I said: we have to do something about this.

At the time, did you know any people living with AIDS?

Pipim: No. After the radio interview, I realized some Ghaneans must be infected. So I got someone from the clinic on the radio, did more interviews about informed consent for HIV testing, and so on. But it was very difficult to find people who had the same ideas.

I started to get phone calls from the public health people. They wanted me to go into the hospitals. When I said, no, I’m not going to go to the hospitals, they proposed to make an audio cassette about HIV/AIDS.

Hammond: I first heard about AIDS education through this cassette... It was effective in a way, but it was not adequate. It was a long list of do’s and don’ts. Nobody - I’m speaking as a communication and radio person - nobody will sit down and listen to 14 minutes of dos and donts.

Pipim: Then we learned of research being done by the community health office. They were testing migrant women in abortion clinics for HIV. No counseling - either before or after the test - was offered. If you tested positive, you got a phone call. About 2000 women were tested, of whom 90 were positive. Of those, 14 women were Ghanean. Learning about this study was a shock. We went straight into how this kind of research should stop.

AFAPAC works on HIV prevention. Is there a self-help group for Africans living with HIV/AIDS?

Pipim: That is what we are trying to do, but it’s not going to be easy because we are facing opposition. We have to be very careful how to set it up, or it will be seen as a threat for institutions which offer services to people living with HIV. The HIV Foundation is for people living with HIV, but people see it as a white organization. We have been advising people to go to this place for the past two years. Some people go once and they come back. The question is: What do the people want? Do they want to go to an integration area, or do they want to go to a place they can identify with? When we tell officials that African people want to meet one another, some officials don’t believe it.

We started lobbying to establish AFAPAC, back in 1992. It took a year to establish the organization: we needed funding, support from Dutch institutions. You need to work to get the trust which you are dependent on from the local organizations. We are still struggling for funding, we still rely on volunteer work. African people living with HIV are still isolated, and they also isolate themselves. We started with prevention. As soon as people started to come to us, support for those affected in the community became increasingly important. nm

K.A. Adanse Pipim is deputy director and national coordinator of AFAPAC. John Hammond, a retired radio journalist, is a member of AFAPAC’s Board of Directors. MAHA spoke with them in April 1996.

Next issue: Omar A. Hamadi and Kaïd Boucetta talk about how Marseille’s immigrant communities organized to face up to AIDS in the 1980s, long before white mainstream AIDS organizations became interested.