Kindred paradigms: community arts and health advocacy in HIV/AIDS activism
Community arts involve an understanding of communities and how art can function as an agent of social change. Community artists employ a broad range of genres and disciplines to reach a wide audience. Defined broadly as the work of communities of people committed to improving their individual and collective circumstances through creative expression, community arts have been particularly instrumental in facilitating HIV/AIDS-related advocacy efforts. Community arts activities, like public health advocacy, are rooted in the principle of social justice (Krieger & Bim, 1998; Muri, 1989). In HIV/AIDS advocacy, for example, community artists have demonstrated a commendable ability to regenerate traditional cultural forms to create public participation in health promotion and disease prevention activities, helping people to turn complexity into revelation (White, 2006). HIV-related community arts have made, and continue to make, important contributions to fundraising for research and care, redressing negative stereotypes concerning HIV/AIDS, protecting the human rights of people living with HIV/AIDS, and contributing to health education and prevention.
Despite their common origins and similar goals in the health sector, synergies between community artists and health advocates remain weak. There are several reasons for the current limited partnerships between the two sectors. First, there is limited awareness of community artists and health advocates about their common roots—social justice. A greater awareness of such common ideological origins and complementary paradigms would likely improve cooperation. Second, there is limited funding or structural incentives for community artists and health workers to collaborate. Few funding agencies explicitly encourage such collaboration. Consequently, both sectors tend to operate in silos, more as competitors than as partners, even when addressing the same health issue.
Third, health advocates, who tend to receive more funding than community artists, generally do not work with community artists as equal partners, even when the activity involves a strong community arts input. Community artists tend not to be involved from the planning stages of such projects and are invariably compensated for less than they deserve, in kind or cash (South, 2008). Notwithstanding many of the current challenges facing potential collaborations between community artists and health advocates, the evolution of HIV/AIDS activism in a community arts context illustrates how community-based arts might facilitate public health advocacy, influence behavior change, promote the self-esteem and human rights of people with similar health conditions, and provide a template to strengthen future collaborations.
Australia’s Grim Reaper Campaign
Addressing negative stereotypes
In the mid-1980s, advocacy and community arts were used against people living with AIDS. Conservative religious groups stereotyped
Community arts inspired AIDS awareness messages
people living with AIDS as exemplifying God’s punishment for homosexuality and immorality. For instance, Australia’s 1987 Grim Reaper AIDS awareness campaign had religious undertones, demonizing homosexual men and promoting a view of an omnipresent being killing sexually immoral people through HIV infection. Such negative stereotypes contributed to discriminatory practices against HIV-affected people, including Ryan White, who contracted HIV from contaminated hemophilia treatment (Valdiserri, 2002).
From the early 1990s onwards, HIV/AIDS health education campaigns were re-packaged to provide positive images of people affected by HIV/AIDS. Community arts images included healthy, vibrant images of people living with HIV/AIDS, reversing an earlier “fear campaign” emphasis on emaciated and feeble victims of HIV/AIDS in earlier public health campaigns. These new images of people living with HIV/AIDS and their accompanying messages were designed to engage the audience on a range of prevention options, rather than solely focus on sexual abstinence.
Fundraising for HIV/AIDS prevention and treatment
In the 1980s, HIV funding was severely restricted by negative stereotypes concerning the disease. Conservative individuals and governments perceived HIV infection as “gay-related immune deficiency” and were reluctant to contribute to or support appeals for HIV/AIDS funding. Illnesses of this kind were viewed by conservative Christians and politicians as resulting from an individual’s sins. HIV-positive churchgoers were preached at and preached against and framed as having received their “wages of sin” (More missed chances, 1988; Brooks et al., 2005).
Over the past two decades, community artists have developed innovative approaches to secure funding for HIV research. Their promotion of the establishment of AIDS Foundations, such as the one pioneered by Elton John, has been instrumental in assisting people with the disease. Governments were lobbied, in part through the use of community arts campaigns, to set up dedicated funding to address the pandemic. Consequently, funds available for HIV/AIDS programs in low-income and middle-income countries rose from US$300 million in 1996 to $10 billion in 2007 (Gordon, 2008).
Changing negative stereotypes about people affected by HIV/AIDS served as an important pathway to secure funding for HIV/AIDS. Community arts projects were used to disseminate credible research findings which demonstrated the true origins of the virus and the diversity of individuals affected by HIV, from hemophilics receiving contaminated serum, to babies born with the disease following prenatal transmission. Literary works, such as Randy Shilt’s And the band played on: Politics, people and the AIDS epidemic (1987), served to highlight the ideological encumbrances to addressing HIV/AIDS as a global public health problem, instead of a disease posed by right-wing politicians and religious fundamentalists primarily as a moral and individual issue.
Shilt’s bestselling book has been cited in over 300 scholarly articles and was adapted into Aaron Spelling’s 1993 Emmy-winning movie of the same name. HIV advocacy groups such as the AIDS Coalition to Unleash Power (ACT UP) disseminated the message from Shilt’s book and Spelling’s movie from the streets of San Francisco to the global arena. The arrival of these powerful works into popular culture represented a turning point, reflected in the many numerous treatments and programs available for PLWH today. ACT UP’s activism and expert use of community arts and partnerships contributed significantly towards achieving the twin objectives of changing negative stereotypes about HIV affected people and stimulating fundraising for HIV/AIDS research (Gamson, 1989; Sepkowitz, 2001).
The literary works of Shilts and Spelling, as well as the community arts activities that promoted their perspectives, exemplified a divergence from common representation of groups of people in need of humanitarian efforts. The humanitarianism of political interventions during civil emergencies, or the humanitarian advocacy styles used in raising funds for leprosy control until the 1960s, sometimes exploited those affected for shock value, dehumanizing them in what has been aptly termed the “pornography of suffering” (Belloni, 2007). In contrast, the works of Shilts and Spelling, as well as other current campaigns, such as the World AIDS Day celebrations, present positive and ennobling images of those affected by HIV.
Community arts and popular culture
Community arts activities distill the complex science between HIV and AIDS into a format that can be easily understood by the majority of the general public. For example, Internet sources, such as The Body, are funded by AIDS organizations to provide accurate information on HIV/AIDS in a variety of formats, including poetry, prose, the visual arts, and multimedia presentations (Body Health Resources Corporation, n.d.). The provision of facts about treatment and prevention combined with the stories and experiences of people living with HIV/AIDS constitute an easily-accessible public information portal. This portal helps the public to disentangle scientific facts from prejudice and dispel the hitherto popular notion that AIDS is still a primarily homosexual disease (Goldstein, 1990).
|Mandela leading TAC anti-retroviral treatment access campaign|
Another area in which community arts was utilized to influence prevailing orthodoxy on HIV-treatment issues is the HIV treatment access campaign (TAC). In South Africa, between 2002 and 2005, the Treatment Action Group utilized “HIV Positive” community arts images on T-shirts, posters, and billboards to oppose multinational pharmaceutical companies’ refusal to grant permission to the South African government for purchasing generic HIV medicines. This treatment access campaign was an ultimate success, swaying popular community indifference towards the plight of HIV suffers and moving policy makers to action in favor of equitable access. As a result, poor HIV endemic nations were granted the license to produce cheaper generic anti-retroviral drugs.
Partners in the campaign included respected organizations like Médecins Sans Frontières (Doctors without Borders) and Nelson Mandela as allies in promoting international policy change. In recognition of the effectiveness of this approach to combating the AIDS crisis in the developing world, Mark Harrington, the organization’s cofounder, won the $240,000 MacArthur Fellowship award. The Treatment Action Campaign’s work to improve access to generic HIV drug treatments set the benchmark for patient-driven HIV/AIDS activism in South Africa (Mbali, 2005).
In 1988, Visual AIDS was founded to harness artistic talent in addressing HIV/AIDS. The mission of Visual AIDS is to encourage artistic works by people
|World AIDS Day poster|
living with HIV and to produce art exhibitions, publications and events to keep HIV/AIDS on the public radar. Examples of their successful campaigns and events include the “Day With(out) Art” and the now prolific image of the red ribbon as a symbol of the fight against AIDS. “The Day With(out) Art” is now in its 22nd year and has gained considerable support from artists, museums, art galleries, and individuals. The red ribbon has become associated with HIV advocacy since 1991 when the New York based Visual Artists Caucus promoted it as a copyright-free consciousness raising symbol on behalf of PLWH (Robinet, 2005).
World AIDS Day, commemorated yearly since its establishment on December 1, 1987 by the World Health Organization, features community art that relays scientific information about HIV/AIDS and its impact not just in Africa, but globally. Print and electronic media play major roles in publicizing HIV prevention and human rights messages in observance of World AIDS Day. AIDS advocates and community artists collaborate yearly in creating these annual public relations campaigns, which promote respect for the health and human rights of people living with HIV/AIDS and their families locally and globally. For example, for World AIDS Day 2009, NextAID’s several HIV/AIDS fundraising and awareness campaigns in California raised over $20,000, which was donated to projects aimed at assisting children in Kenya and South Africa, furthering their mission “to make a tangible and long-term difference in the lives of children suffering as a result of AIDS” (NextAid, n.d.).
Timely global and local campaigns educate, inform, and address stigma and discrimination regarding HIV/AIDS, utilizing photography, cinematography, and narratives in a targeted manner. For example, Tomás Gaspar, whose AIDS awareness and advocacy photographs received recognition at the 1998 World AIDS Conference in Geneva, used public and gallery photographic exhibitions to stimulate discussions about appropriateness for disclosure of HIV status in the homosexual male community.
|Anglicare STOPAIDS theater group,
Papua New Guinea
Edu-entertainment, or the practice of placing educational material into entertaining formats, is aimed at increasing knowledge and understanding about particular issues while also challenging perceptions and inviting the viewer to alter their behavior (Keller & Brown, 2002). In South Africa, for example, a popular television drama titled Soul City portrays how young people wrestle with contemporary issues like sexuality, violence, poverty and HIV/AIDS. In the Pacific region, Love Patrol is a soap drama produced by the Wan Smolbag theatre, that deals with the gritty issues of everyday life while educating viewers about HIV/AIDS. These programs strive, as one of their primary objectives, to break down barriers around HIV.
In Papua New Guinea, where about 45% of rural health services are provided by Christian organizations, the Anglicare STOPAIDS theatre group is one of many non-government organizations staging plays at local markets, schools, and other community meeting places to help inform and educate people about HIV. The use of community arts by Christian religious groups for AIDS awareness is a significant development in light of the initially hostile attitude of the Christian church to people affected by HIV/AIDS (Rodriguez & Ouellette, 2000).
The impact of HIV prevention edu-entertainment programs in developing nations has been mixed (Bertrand et al. 2006). Comparable edu-entertainment campaigns in Australia, however, have achieved fairly successful outcomes in HIV-related behavior change because they utilized visually appealing and meaningful narratives that were unambiguous and culturally appropriate (Sendzuik, 2003). South Africa’s Soul City radio and television programs have also shown a measurable positive impact in terms of improved knowledge about HIV/AIDS as well as behavior change related to prevention (Goldstein et al., 2005).
Unfortunately, the important strides made through the collaboration of community artists and health advocates to prevent and reduce the stigma of HIV have not led to strengthened partnerships in the wider arena of community health. As highlighted in South’s (2006) evaluation study of a community arts for health program in the United Kingdom, “the challenges in delivering effective community arts initiatives and building partnerships across different sectors should not be underestimated.”
Such challenges include bridging the limited awareness of the common ideological origins and complementary paradigms between community artists and public health activists through several mechanisms. First, health professionals could be trained in community-based art methods to facilitate their participation in the development of community-based art advocacy (Reilly, Ring & Duke, 2005). Second, community artists and health advocates could be incentivized to approach each other as equal partners in joint planning of health activities, with positive mutual awareness of the roles and values of participants. Third, funders should consider payment arrangements that equitably reflect the contributions of all partners.
The Arts Council England recently published a national framework on the arts, health and wellbeing to foster collaborative interchange between community artists and health advocates (Arts Council England, 2007). The framework is built on the premise that experiencing the arts and culture can create a sense of well-being and transform the quality of life for individuals and communities. Such initiatives have enabled the United Kingdom to play a leading role in strengthening the nexus between health, disease prevention, and community arts by facilitating strong political will and increased funding for community artists to contribute to clinical and public health services.
From AIDS quilts in America to televised theatre, such as Soul City in South Africa and Love Patrol in the Pacific, AIDS has influenced community arts, and the arts have influenced public perception and prevention of HIV/AIDS and improved the lives of people affected by the infection. In utilizing the powerful, creative, and, at times, confrontational voice of community art to move people to think, learn, and take action, collaborators in community arts have worked to advocate for change, raise consciousness, educate, and disseminate information about HIV/AIDS to the public. Initiatives to encourage strong partnerships between community artists and health advocates are likely to create enduring, efficient and significant improvements in many areas of public health.
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NIYI AWOFESO, MBChB, PhD developed an interest in bridging the gaps between health advocacy and community arts while working on strategies to socio-economically reintegrate people affected by leprosy in northern Nigeria between 1990 and 1995. He developed the 5 Ps of health advocacy (Precision, Passion, Promptness, Perseverance and Personality), and he is currently researching a framework for improving successful collaborations between community artists and health advocates on specific public health issues. He teaches at both the Universities of Western Australia and New South Wales.
ANU RAMMOHAN, PhD’s research is in the broad areas of Development and Health Economics. Her research analyses the intra-household distribution of health and education in developing countries, and its implications for the household’s children and the elderly. Specifically, she has examined child nutrition and maternal anemia in South Asia, children’s educational outcomes in contexts where the household faces resource constraints and care-giving responsibilities for the household’s elderly. Papers from her research have been published in journals such as Health Economics, Education Economics, Research in Labour Economics and Oxford Development Studies. She teaches at the University of Western Austrailia,
Highlighted in Frontispiece Spring 2010 – Volume 2, Issue 2