The Audience in Media Activism
Authors: Gillett James 
Published: October 2020

Introduction
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.
Community-Based Media
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.
Conclusion
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.

References

Ariss, 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 Mass
Communication. Ed. P. Creedon. London: Sage, 1993.
Trend, D. "Rethinking Media Activism: Why the Left Is Losing the Cultural
War." Socialist Review, 2 (1993): 5-33.

Citation reference for this article
MLA style:

James Gillett. "The Audience in Media Activism: AIDS Treatment
Information Projects." M/C: A Journal of Media and Culture 3.1 (2000).
[your date of access] <http://www.uq.edu.au/mc/0003/activism.php>.
Chicago style:

James Gillett, "The Audience in Media Activism: AIDS Treatment
Information Projects," M/C: A Journal of Media and Culture 3, no. 1
(2000), <http://www.uq.edu.au/mc/0003/activism.php> ([your date of access]).
APA style:

James Gillett. (2000) The Audience in Media Activism: AIDS Treatment
Information Projects. M/C: A Journal of Media and Culture 3(1). <http://www.uq.edu.au/mc/0003/activism.php> ([your date of access]).