Over the past thirty years media activism has expanded dramatically. Like never before, individuals and groups have access to personal computers, publishing software, fax, telecommunications, the Internet, community radio and television that enable them to participate in forms of cultural production previously reserved for an intellectual and political élite. Independently produced media among those who feel excluded from, even oppressed by, the dominant social order provides a means of raising awareness among oppressed or marginalised communities while at the same time challenging the meanings conveyed by social institutions like the mass media and the state.
The use of media for the purposes of activism has occurred, by in large, in the context of new social movements. The AIDS movement in North America has provided an organisational and ideological infrastructure through which those infected have become involved in media production. This paper focusses on the development of media projects by AIDS activists for the purposes of sharing information about the treatment and management of HIV infection. Specifically I am interested in how the changing the needs of people with HIV/AIDS -- the intended audience -- as perceived by activists have shaped the evolution of treatment information projects.
Media projects designed as a forum for people with HIV/AIDS have been guided by the need to be and remain community-based. What constitutes community-based media has been taken up, in several different ways, in the literature on media activism. Downing, for instance, has examined the experiences of those involved in "self managed" media projects. In this analysis he illustrates how control over production is crucial to media projects that focus on challenging or resisting forms of political oppression. External influence or control only threatens to subvert collective efforts directed at achieving self representation. Smith looks at this issue in a different way, arguing that it is important to make the distinction between print media for women and feminist print media. According to Smith, the former tend to reflect the dominant gender order, contributing to the social forces that oppress and marginalise women, in part, because they do not focus on addressing or advancing the needs and concerns of women. Feminist media, in contrast, tends to be informed by a political analysis of gender: they are created and produced by and for women; they provide a forum for the voices of women who have been silenced through oppression or marginalisation; and they challenge and seek to transform patriarchal social relations. Trend takes this point further in his critique of media projects that have been informed by Leftist politics. The problem, he argues, has been that the media created or influenced by Leftist politics have been dominated by an intellectual élite that have ignored or chastised the voices and opinions of those who are oppressed or marginalised by the dominant social order. As an alternative, Trend looks to recent efforts among gay and lesbian media activists who have turned to new media technologies and their own experiences as the basis for subverting and challenging homophobia and hetrosexism. For each of these scholars, community-based media follow what might be called a peer model of communication: a specific group using media to speak for themselves and in doing so achieving some degree of self representation. A key issue raised in this work is how those involved in media projects understand the role that their audience plays in establishing and sustaining this community-based status.
Treatment Information Projects as Community-Based Media Activism
Political organizing around the treatment of HIV infection (what has been called AIDS treatment activism) has been a central component of the community-based response to HIV/AIDS (Ariss). Treatment activism among groups like ACT UP and AIDS ACTION NOW! have focussed on influencing those power structures (government and pharmaceutical companies) in control of the development and approval of medications (Carter; Carter & Watney). Treatment activism also refers to the creation of advocacy, support, and education programs for people living with HIV/AIDS. The development of forums which enable people with HIV/AIDS to share information about treatments and health care generally has been an important aspect of treatment activism in North America.
A significant part of this type of treatment activism has been the production and dissemination of information about treatments and health management. Indeed, the importance of "staying informed" has always been high on the list of survival strategies for people with HIV/AIDS. Early in the epidemic, in the 1980s, the problem that people with HIV/AIDS faced was a lack of information about new and potentially beneficial treatments. In response, people with HIV/AIDS formed social networks, often in close proximity to AIDS organizations, in order to share strategies to promote their health and manage their infection. Eventually, such forums were expanded and became, or were integrated into, print media projects. In the United States, the most notable and enduring example is AIDS Treatment News. In Canada similar publications like The Positive Side and the Treatment Information Flash were started by people with HIV/AIDS with the support of grassroots, but increasingly government funded, AIDS service organizations. During this period media products like The Positive Side and Treatment Information Flash were produced by politically involved HIV- positive gay men who sought to provide information to all people with HIV/AIDS but also realised that their primary audience was gay men who were HIV infected or affected.
With developments in the treatment of HIV/AIDS, the main issue for people with HIV/AIDS became gaining access to information rather than a lack of information. Pressure from the organised HIV/AIDS community eventually led to the development of and greater support (from government and private foundations) for treatment information organisations. In the United States, groups like Project Inform (PI) were established which focussed exclusively on interpreting medical information and making it available to people with HIV/AIDS. In Canada, a similar organisation was started, the Community AIDS Treatment Information Exchange (CATIE), initially a subcommittee of AIDS ACTION NOW! and then as an autonomous organisation. Treatment-specific organisations meant that existing media projects were given more resources and a broader scope in meeting the information needs of people with HIV/AIDS.
Media projects that began earlier in the epidemic were faced with the challenge of adapting to changes in the AIDS epidemic and to the treatment of HIV/AIDS. Efforts were made, for instance, in treatment information projects in Canada with varying levels of success to include the voices of a more diverse range of people with HIV/AIDS. Also, a greater emphasis was placed on providing material that would be accessible to people with varying educational, cultural, and social backgrounds. In the case of The Positive Side and the Treatment Information Flash despite efforts effectively reaching a more diverse audience of people with HIV/AIDS, while remaining relevant to gay men with HIV/AIDS, was an ongoing challenge that called into question the effectiveness and relevancy of such media as a forum for all people with HIV/AIDS.
In more recent years, with the rise of new medications and the use of combination therapy or treatment cocktails, as well as the rise in use and legitimacy of complementary therapies, the health care information needs of people with HIV/AIDS have grown exponentially. To meet the changes needs of people with HIV/AIDS, organisations like PI and CATIE have turned away from print media and instead embraced the phone, fax, and the Internet as an alternative means of disseminating treatment information. Also, the availability of information in currently less of a problems as it was in the 1980s and early 1990s (although accessibility continues to be a serious problem). Instead, people with HIV/AIDS were becoming overwhelmed by an overabundance of information. Treatment information projects had to go beyond simply making information available and understandable; people with HIV/AIDS needed to learn how to make sense of the wealth of information available in order to make informed decisions about their health.
Print media projects like The Positive Side and the Treatment Information Flash were eventually incorporated into broader electronic media based projects that were more oriented toward provided a broad amount of treatment information to a diverse audience of people with HIV/AIDS. Early print media projects were unable to extend beyond their grassroots in the gay HIV-positive community. In this sense in the pursuit of becoming general media they no longer were "community-based" and as a result could no longer sustain themselves.
What community-based meant for those involved in projects like The Positive Side and the Treatment Information Flash revolved around ensuring that the media actively engaged an audience of people with HIV/AIDS and that the material in the publication was grounded in the experiences of people with HIV/AIDS." This understanding of community-based had two components. First, it was an attempt to remain accountable to the needs and concerns of those HIV-infected and affected. And, second, it was an effort to privilege and foster the opinions, views, and expertise of those living with HIV/AIDS. Achieving this required a political analysis that identified the dominant social order as working against, or simply ignoring, the best interests of those HIV-infected and affected. In response, people with HIV/AIDS needed to take control of the production and representation of information about managing HIV infection. As a result, becoming and remaining "community-based" was for a period of time an ongoing process that was negotiated between the audience and those involved in the media projects. This negotiation was seen as essential to providing an alternative forum for health care information that looked critically and pragmatically at dominant discourses about managing HIV infection. However, in recent years, the realisation that it is not possible to address people with HIV/AIDS as a unified, politically aware audience has called into question the viability of treatment information projects. As a result, early treatment publications have been replaced by large government funded treatment information organisations that provide general information through a variety of media which are intended for a diverse range of people with HIV/AIDS. The result is a greater gap between producer and consumer and a shift away from a consideration of the audience as an essential, potentially political entity in the production of AIDS treatment information.