The Audience in Media Activism

Over the past thirty years media activism has expanded dramatically. Likenever before, individuals and groups have access to personal computers,publishing software, fax, telecommunications, the Internet, communityradio and television that enable them to participate in forms of culturalproduction previously reserved for an intellectual and political élite.Independently produced media among those who feel excluded from, evenoppressed by, the dominant social order provides a means of raisingawareness among oppressed or marginalised communities while at the sametime challenging the meanings conveyed by social institutions like themass 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 Americahas provided an organisational and ideological infrastructure throughwhich those infected have become involved in media production. This paperfocusses on the development of media projects by AIDS activists for thepurposes of sharing information about the treatment and management of HIVinfection. Specifically I am interested in how the changing the needs ofpeople with HIV/AIDS -- the intended audience -- as perceived by activistshave shaped the evolution of treatment information projects. Community-Based MediaMedia projects designed as a forum for people with HIV/AIDS have beenguided by the need to be and remain community-based. What constitutescommunity-based media has been taken up, in several different ways, in theliterature on media activism. Downing, for instance, has examined theexperiences of those involved in "self managed" media projects. In thisanalysis he illustrates how control over production is crucial to mediaprojects that focus on challenging or resisting forms of politicaloppression. External influence or control only threatens to subvertcollective efforts directed at achieving self representation. Smith looksat this issue in a different way, arguing that it is important to make thedistinction 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, inpart, because they do not focus on addressing or advancing the needs andconcerns of women. Feminist media, in contrast, tends to be informed by apolitical analysis of gender: they are created and produced by and forwomen; they provide a forum for the voices of women who have been silencedthrough oppression or marginalisation; and they challenge and seek totransform patriarchal social relations. Trend takes this point further inhis critique of media projects that have been informed by Leftistpolitics. The problem, he argues, has been that the media created orinfluenced by Leftist politics have been dominated by an intellectualélite that have ignored or chastised the voices and opinions of those whoare oppressed or marginalised by the dominant social order. As analternative, Trend looks to recent efforts among gay and lesbian mediaactivists who have turned to new media technologies and their ownexperiences as the basis for subverting and challenging homophobia andhetrosexism. For each of these scholars, community-based media follow whatmight be called a peer model of communication: a specific group usingmedia to speak for themselves and in doing so achieving some degree ofself representation. A key issue raised in this work is how those involvedin media projects understand the role that their audience plays inestablishing and sustaining this community-based status. Treatment Information Projects as Community-Based Media ActivismPolitical organizing around the treatment of HIV infection (what has beencalled AIDS treatment activism) has been a central component of thecommunity-based response to HIV/AIDS (Ariss). Treatment activism amonggroups like ACT UP and AIDS ACTION NOW! have focussed on influencing thosepower structures (government and pharmaceutical companies) in control ofthe development and approval of medications (Carter; Carter & Watney).Treatment activism also refers to the creation of advocacy, support, andeducation programs for people living with HIV/AIDS. The development offorums which enable people with HIV/AIDS to share information abouttreatments and health care generally has been an important aspect oftreatment activism in North America. A significant part of this type of treatment activism has been theproduction and dissemination of information about treatments and healthmanagement. Indeed, the importance of "staying informed" has always beenhigh on the list of survival strategies for people with HIV/AIDS. Early inthe epidemic, in the 1980s, the problem that people with HIV/AIDS facedwas a lack of information about new and potentially beneficial treatments.In response, people with HIV/AIDS formed social networks, often in closeproximity to AIDS organizations, in order to share strategies to promotetheir health and manage their infection. Eventually, such forums wereexpanded and became, or were integrated into, print media projects. In theUnited States, the most notable and enduring example is AIDS TreatmentNews. In Canada similar publications like The Positive Side and theTreatment Information Flash were started by people with HIV/AIDS with thesupport of grassroots, but increasingly government funded, AIDS serviceorganizations. During this period media products like The Positive Sideand Treatment Information Flash were produced by politically involved HIV-positive gay men who sought to provide information to all people withHIV/AIDS but also realised that their primary audience was gay men whowere HIV infected or affected. With developments in the treatment of HIV/AIDS, the main issue for peoplewith HIV/AIDS became gaining access to information rather than a lack ofinformation. Pressure from the organised HIV/AIDS community eventually ledto the development of and greater support (from government and privatefoundations) for treatment information organisations. In the UnitedStates, groups like Project Inform (PI) were established which focussedexclusively on interpreting medical information and making it available topeople with HIV/AIDS. In Canada, a similar organisation was started, theCommunity AIDS Treatment Information Exchange (CATIE), initially asubcommittee of AIDS ACTION NOW! and then as an autonomous organisation.Treatment-specific organisations meant that existing media projects weregiven more resources and a broader scope in meeting the information needsof people with HIV/AIDS. Media projects that began earlier in the epidemic were faced with thechallenge of adapting to changes in the AIDS epidemic and to the treatmentof HIV/AIDS. Efforts were made, for instance, in treatment informationprojects in Canada with varying levels of success to include the voices ofa more diverse range of people with HIV/AIDS. Also, a greater emphasis wasplaced on providing material that would be accessible to people withvarying educational, cultural, and social backgrounds. In the case of ThePositive Side and the Treatment Information Flash despite effortseffectively reaching a more diverse audience of people with HIV/AIDS,while remaining relevant to gay men with HIV/AIDS, was an ongoingchallenge that called into question the effectiveness and relevancy ofsuch media as a forum for all people with HIV/AIDS. In more recent years, with the rise of new medications and the use ofcombination therapy or treatment cocktails, as well as the rise in use andlegitimacy of complementary therapies, the health care information needsof people with HIV/AIDS have grown exponentially. To meet the changesneeds of people with HIV/AIDS, organisations like PI and CATIE have turnedaway from print media and instead embraced the phone, fax, and theInternet as an alternative means of disseminating treatment information.Also, the availability of information in currently less of a problems asit was in the 1980s and early 1990s (although accessibility continues tobe a serious problem). Instead, people with HIV/AIDS were becomingoverwhelmed by an overabundance of information. Treatment informationprojects had to go beyond simply making information available andunderstandable; people with HIV/AIDS needed to learn how to make sense ofthe wealth of information available in order to make informed decisionsabout their health. Print media projects like The Positive Side and the Treatment InformationFlash were eventually incorporated into broader electronic media basedprojects that were more oriented toward provided a broad amount oftreatment information to a diverse audience of people with HIV/AIDS. Earlyprint media projects were unable to extend beyond their grassroots in thegay HIV-positive community. In this sense in the pursuit of becominggeneral media they no longer were "community-based" and as a result couldno longer sustain themselves. ConclusionWhat community-based meant for those involved in projects like ThePositive Side and the Treatment Information Flash revolved around ensuringthat the media actively engaged an audience of people with HIV/AIDS andthat the material in the publication was grounded in the experiences ofpeople with HIV/AIDS." This understanding of community-based had twocomponents. First, it was an attempt to remain accountable to the needsand concerns of those HIV-infected and affected. And, second, it was aneffort to privilege and foster the opinions, views, and expertise of thoseliving with HIV/AIDS. Achieving this required a political analysis thatidentified the dominant social order as working against, or simplyignoring, the best interests of those HIV-infected and affected. Inresponse, people with HIV/AIDS needed to take control of the productionand representation of information about managing HIV infection. As aresult, becoming and remaining "community-based" was for a period of timean ongoing process that was negotiated between the audience and thoseinvolved in the media projects. This negotiation was seen as essential toproviding an alternative forum for health care information that lookedcritically and pragmatically at dominant discourses about managing HIVinfection. However, in recent years, the realisation that it is notpossible to address people with HIV/AIDS as a unified, politically awareaudience has called into question the viability of treatment informationprojects. As a result, early treatment publications have been replaced bylarge government funded treatment information organisations that providegeneral information through a variety of media which are intended for adiverse range of people with HIV/AIDS. The result is a greater gap betweenproducer and consumer and a shift away from a consideration of theaudience as an essential, potentially political entity in the productionof AIDS treatment information. ReferencesAriss, R. Against Death: The Practice of Living with AIDS. Australia:Gordon & Breach Publishers, 1996.Carter, G. ACT UP, the AIDS War and Activism. New Jersey: Open Magazine,1992.Carter, E., and S. Watney. Taking Liberties: AIDS and Cultural Politics.London: Serpent's Tail, 1989.Downing, J. Radical Media. Boston: South End Press, 1984.Kahn, A. AIDS: The Winter War. Philadelphia: Temple UP, 1993.Smith, M. "Feminist Media and Cultural Politics." Women in MassCommunication. Ed. P. Creedon. London: Sage, 1993.Trend, D. "Rethinking Media Activism: Why the Left Is Losing the CulturalWar." Socialist Review, 2 (1993): 5-33. Citation reference for this articleMLA style:James Gillett. "The Audience in Media Activism: AIDS TreatmentInformation Projects." M/C: A Journal of Media and Culture 3.1 (2000).[your date of access] .Chicago style:James Gillett, "The Audience in Media Activism: AIDS TreatmentInformation Projects," M/C: A Journal of Media and Culture 3, no. 1(2000), ([your date of access]). APA style:James Gillett. (2000) The Audience in Media Activism: AIDS TreatmentInformation Projects. M/C: A Journal of Media and Culture 3(1). ([your date of access]).