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Why join… or start a movement?

The collection shows a host of different reasons why people become involved or interested in a social movement. Often it is for support. Social movements are identified as one source of support alongside other support groups, religion and counselling services.

The testimonies reveal that different experiences within the movement subsequently motivated people to become more or less involved as their experience with the movement matured. Some of the most common reasons people give for joining a movement included finding support, referral from friends or counsellors, and an individual passion to fight HIV at a community level.

Some narrators ascribe the decision to difficult experiences in coming to terms with the diagnosis and to the stigma and discrimination they were experiencing. Other reasons include access to information, finding a sense of belonging, looking for hope and stories of survival, and connecting with other women or men living with HIV.

I met with friends who were open

I was shocked to hear that I am positive. I kept silent, without telling anyone at home. I had that denial, but the other day I told my sister that I have this thing. She was not shocked. She told my mother, and my mother took it for granted because there are a lot of people who live with it.

Then I was free, but the denial was always with me. I didn’t want to go with people living with HIV/AIDS. The guys know in the community – there were a lot of gossips. Then I met with friends who were open about their HIV status. I have been free since then.

Male, member of Khululeka, South Africa

Accessing information

I have a lot of experience with HIV/AIDS. I found out that I am infected in 2002. I did not know what was going on in my life. I was very sick. I was encouraged to do an HIV test after I got sick. I did not know my status and then I got tested. At that time my life changed. I was very sick, but now I know, because of TAC, I had developed opportunistic infections: it was TB and pneumonia.

Female, member of TAC, South Africa

Strong leaders

I was looking for TAC because I have heard about this man Zackie Achmat, who I would like to see. He is very famous. He is trying to help people get ARVs. I was very interested. I was positive at the time, but I had been looking for TAC when I was HIV negative because I heard of this man and I wanted to see him very, very much. I even went to the library looking for the Treatment Action Campaign. Where is it? Where can I go?

There was a lady who, when I disclosed my status, said you cannot sleep in bed: we must go; you must come join TAC. If you reach there, we will meet people who are HIV positive and negative – so you will be free. That’s how I joined TAC.

When I saw Zackie Achmat, I was very, very, very glad. I remember when I met him, when I went to the office for the first time, he was there. I did not know he was Zackie Achmat. I saw only this man who said “Hello, welcome to TAC”. When I went out of the office they said that was Zackie Achmat! My day – that day – was very, very, very interesting.

Female, member of TAC, South Africa

You can speak freely

I am involved in the men-only support group called Khululeka. We socialise and learn things about living with the disease called HIV. I’m glad I’m involved because it has uplifted my spirit, and I can express myself about knowing my status.

The uniqueness about Khululeka is that it is a male-only support group. You can speak freely about anything under the sun pertaining to men and you don’t have to look over your shoulder to wonder if there are any women.

John (male), member of Khululeka, South Africa

Overcoming discrimination

There were situations where people call you names. They treat you very bad. They call you names like lesbian or gay or what-what. But now people are no longer like that. For example, most of my friends are ‘non-HIV’ people. I think the issue of discrimination against another person is because of a lack of information.

CJ (female), member of ICW, Namibia


We move around a lot, people see us as and we have T-Shirts with the Khululeka name. People who are interested approach us and ask what we are all about and what we stand for. Then we explain and that’s how people come to join us.

John (male), member of Khululeka, South Africa

A passion to help women living with HIV

I came to know about ICW as a person living positively. And I should tell you I also started a psycho-social support group in Katutura Windhoek, because I was working for the women’s organisation and I could see the frustration which women were going through.

They didn’t have anybody to talk to. I could see it because I underwent the same situation – I did not have anyone to talk to, any friend, any other relative beside my sister and my mother. I am living with HIV and I can see a lot of frustration among people with HIV by just looking at them. So that is how I started the support group here… My passion is to help women who are living with HIV and AIDS.

Jeni (female), member of ICW, Namibia

Mothers to mothers

When I was in the clinic, I joined the support group and there were TAC members who used to come to the group. They talked to me about TAC, HIV treatment and people’s rights and the nearest clinics. Most of those people were living with HIV and were encouraging us to join TAC.

I joined TAC in 2003. In the support group, I was the first mentor in the organisation encouraging other HIV positive pregnant women. We combined, with other mothers, to form the mothers to mothers group. The difference is that the group is only HIV positive pregnant women. In TAC there are different people, not only HIV-positive people. That’s the difference.

Nomafu (female), member of TAC, South Africa


Why join… or start a movement? is a key theme of the Speaking freely on HIV oral testimony project.


South Africa | Gerald: sharing the burden

South Africa | Jo-Ann: joining the struggle

South Africa | John: a loving family

South Africa | Nomafu: encouraging others

South Africa | Patrick: beauty in equality

South Africa | Sylvia: anger to acceptance

Namibia | CJ: fulfilling our potential

Namibia | Karolina: bringing me peace

Namibia | Jeni: leaving stigma behind

Namibia | Maria: information is essential

Key themes

Introduction to the project

Hopes and visions

Challenging the government

Working with the media

Support through community

Why join… or start a movement?

Living with HIV

Gender dimensions

Identity, culture and context