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Introduction to the project

This collection of life stories from South Africa and Namibia highlights the powerful role social movements can play in tackling HIV and AIDS.

Introducing the testimonies

Panos has gathered these oral testimonies from members of HIV social movements in South Africa and Namibia to let them share their personal stories with a wider audience, and to find out more about the role of communication in connecting people and bringing about inclusive social change.

The testimonies offer an insight into some key questions relating to social movements:

  • How, for example, do social movements ignite passion and commitment to action, and how do they bridge individual vision for change with collective action?
  • What is the role of communication in connecting people, creating social movements and supporting people living with HIV and AIDS?
  • How can the relationship between social movements and the media be enhanced to open up and diversify public debate around policy and other key decisions relating to HIV and AIDS?

The resulting 36 testimonies illuminate individual stories about participating in social movements, personal experiences of HIV, and visions for change. The key themes include identity; motivation for being involved in a movement or support group; representation; gender; and voice.

Background to the project

Social movements have brought energy, vitality and self-defined change to local, national and international responses to HIV and AIDS. By bringing people together and advocating effectively, social movements have amplified the voices of people most affected by HIV and AIDS and created opportunities for them to influence governments and other decision makers.

For this project, the Panos London AIDS and Oral Testimony Programmes joined forces to:

1) work with social movements to collect the voices and perspectives of people most affected by HIV and AIDS, and to help convey these to national and international media and policy professionals

2) strengthen effective and inclusive communication within social movements by understanding how communication takes place within them, and enabling social movements to share ideas and best practice with each other

In collaboration with the Centre for Popular Memory at the University of Cape Town (UCT), Panos facilitated a workshop with representatives from three social movements – South Africa’s Treatment Action Campaign (TAC) and the Khululeka Men’s Support Group, and the Namibian chapter of the International Community of Women Living With HIV/AIDS (ICW).

The participants explored the oral testimony methodology and discussed topics and questions important to them. They then carried out open-ended, in-depth interviews with peers in their groups and movements. Key themes that emerged included identity, motivation for being involved in a movement or group, representation, and voice.

The project supports the overall mission of the Panos Global AIDS Programme to enhance participation, ownership and accountability in responses to HIV and AIDS by amplifying the voices of the most affected and stimulating informed public and policy debate through innovative communication.

About the movements

The International Community of Women Living with HIV/AIDS is a network run for and by HIV-positive women, and has a chapter in Namibia

Lironga Eparu (Learning to Survive) is the national association of people living with HIV/AIDS in Namibia

South Africa’s Treatment Action Campaign has a diverse membership, and advocates for access for all to treatment and care

Based in Guguletu, South Africa, Khululeka helps HIV-positive men to improve their own lives and those in their community

Since 1995, Engender Health has worked in South Africa to improve reproductive health services, prevent sexually transmitted infections and reduce gender-based violence


Introduction to the project 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