Speaking Freely, Being Strong: HIV Social Movements, Communication and Inclusive Social Change

From the Executive summary:

This document outlines some of the main findings of a pilot case study in South Africa, conducted in 2006 as the first phase of the Panos HIV social movements project. It will form the basis for a roundtable dialogue in Cape Town in November 2006, bringing together key stakeholders (members of social movements, media professionals, civil society and local policy makers) to discuss the findings and critique the recommendations.

Panos launched the project to learn from HIV social movements about the role of communication in social mobilisation. [Following the earlier publication of a discussion paper, March 2006, We are one but we are many...] The project seeks to address some key questions. How, for example, do social movements ignite passion and commitment to action? How do social movements 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?

These and other questions were addressed in the South African pilot study through a number of research methodologies. The main methodology was oral testimony, which aims to let individuals share their personal stories. In Cape Town, in collaboration with the Centre for Popular Memory at the University of Cape Town (UCT), Panos facilitated an oral testimony workshop with representatives from three different social movements – the Treatment Action Campaign (TAC), Khululeka Men’s Support Group and the International Community of Women Living With HIV/AIDS (ICW). The participating members from these three movements then carried out open-ended, in-depth interviews with their peers. Key themes in the testimonies include identity, motivation for being involved in a movement or support group, representation and voice. There was also some discussion around the external communication of the movement or group, and its relationship with the media. Other research consisted of interviews with media professionals and focus group discussions... A number of key issues emerged, which require us to look at communication at various levels.

First, coming to terms with HIV and talking about it is extremely challenging at an individual or personal level. Talking with others is also one of the mechanisms by which individuals reflect on their situation and become impassioned and motivated to start a social movement.

At the interpersonal level, connecting with other people plays a critical role in providing support for people affected by HIV and AIDS. Sharing a place or talking with another HIV-positive person can make a world of difference to someone attempting to come to terms and cope with a positive diagnosis. Communication between people also enables the sharing of enthusiasm, potentially sparking even greater commitment to a common cause, and is vital for sustaining networks of people.

At the public level, communication is crucial in amplifying – to policy and other decision makers – the voices and concerns of those most affected by HIV and AIDS. It is the process whereby social movements can raise awareness and mobilise support for their campaigns; it is also the process by which the media frame stories around HIV and AIDS and other related issues.

From a synthesis of the main findings of the project, several key issues emerge, some unique to the South African context. These include the following:

• In social movements, communication connects people at a deeper level than the merely rational: it supports, inspires and helps people living positively with HIV. Because social movements usually emerge from informal networks of people, communication is arguably more important in sustaining momentum in this context than in organisations that can rely on institutionalised structures
  and processes to keep them going.
• Communication has a vital role in connecting and supporting people living with HIV and AIDS at both individual and collective levels.
• Small, informal community-based groups have an important role to play in responding to the immediate needs and concerns of their members, whereas big, national social movements may lose some direct relevance to the practical needs of the broadening base of their membership.
• Social movements enhance the visibility of people living with HIV and AIDS and provide a platform for challenging the government and other decision makers
• Social movements create, claim and shape spaces for public debate. In South Africa particularly, drawing from the history of struggle and social mobilisation against the apartheid regime, social movements have played an important part in shaping spaces for democratic debate.
• Strong movements can dominate public debate and contribute to a polarisation between civil society and the government. Although the strength of the civil society response concerning access to treatment and advocating for improved national policies has put HIV in the public spotlight, it has not necessarily strengthened the vibrancy and diversity of public debate around these issues.
• People living with HIV and AIDS need additional communication skills and exposure to the media to enable ethical, accurate and comprehensive coverage of HIV and AIDS in the media.
• Media professionals need additional support and incentives to engage critically and proactively with social movements in their coverage of HIV and AIDS. Key obstacles needing addressing were identified.

Although Panos is still in the early stages of this project, a few recommendations are emerging. They include the following:

• Support capacity development with members of HIV social movements and people most affected by HIV and AIDS to help them to communicate clearly, represent themselves effectively, and be represented legitimately, accurately and ethically in the media.
• Support places for debate that guarantee diverse participation and enable the voices of people most affected by HIV and AIDS to be heard. These can be spaces generated by social movements, or others that enable people most affected by HIV to represent themselves and their priorities meaningfully.
• Promote communication and advocacy environments that encourage diverse voices, and promote multidirectional accountability (for governments, civil society, social movements and other key public actors).
• Promote proactive rather than reactive journalism. Around issues of HIV and social movements, this would include providing incentives and allowing time for journalists to undertake investigative research around key issues, focusing particularly on accessing and amplifying the voices of people most affected.
• Foster and support greater linkages between media professionals and members of HIV social movements.
• Media professionals – including freelance and staff reporters – should be guided in their coverage of HIV and AIDS by ethical guidelines that encourage non-stigmatising, accurate and informative coverage of the key issues.
• Support and promote creative, innovative and multimedia approaches that are participatory and can enable a plurality of voices to be heard in debates about key HIV and AIDS policy decisions.