Table of Con­tents | Arti­cle doi: 10.17742/IMAGE.IN.11.2.13 | PDF

Polit­i­cal Advo­ca­cy on HIV/AIDS Hoff­man et al

Learning from the Role of Art in Political Advocacy on HIV/AIDS

Steven J. Hoff­man, Annemarie Hou, Annie Jones, and Julia Woo

This essay uses a mixed-meth­ods approach com­bin­ing scop­ing review, the­mat­ic qual­i­ta­tive analy­sis, and case study method­olo­gies to iden­ti­fy rela­tion­ships between art and polit­i­cal advo­ca­cy in the con­text of the AIDS epi­dem­ic. Thir­ty-four rel­e­vant arti­cles were found through a com­pre­hen­sive lit­er­a­ture search focused on social sci­en­tif­ic analy­ses. Three key themes were iden­ti­fied: address­ing neg­a­tive stereo­types; the impor­tance of edu­ca­tion; and giv­ing voice to indi­vid­u­als affect­ed by HIV. The sig­nif­i­cance of icon­ic artist Kei­th Har­ing and two impor­tant art­works relat­ed to HIV advocacy—the Keiskam­ma Altar­piece and the Rib­bon Project—are dis­cussed, with lessons dis­tilled for the role that art can play in polit­i­cal advo­ca­cy on glob­al health issues more broadly.

Cet essai utilise une approche à méth­odes mixtes com­bi­nant un exa­m­en de la portée, une analyse qual­i­ta­tive thé­ma­tique et des méthodolo­gies d’études de cas pour iden­ti­fi­er les rela­tions entre l’art et le plaidoy­er poli­tique dans le con­texte de l’épidémie de Sida. Trente-qua­tre arti­cles per­ti­nents ont été trou­vés grâce à une recherche doc­u­men­taire com­plète axée sur les analy­ses sci­en­tifiques sociales. Trois thèmes-clés ont été iden­ti­fiés: lut­ter con­tre les stéréo­types négat­ifs; l’importance de l’éducation; et don­ner la parole aux per­son­nes touchées par le VIH. L’importance de l’artiste emblé­ma­tique Kei­th Har­ing et de deux œuvres d’art impor­tantes liées au plaidoy­er con­tre le VIH—le Retable de Keiskam­ma et le Rib­bon Project—sont exam­inées afin d’en tir­er des leçons sur le rôle que l’art peut jouer plus large­ment dans le plaidoy­er poli­tique sur les ques­tions de san­té mondiale.


Artists and polit­i­cal advo­cates share a his­to­ry of work­ing togeth­er to fos­ter aware­ness, action, and change. Renowned nov­el­ist and Nobel Lau­re­ate Toni Mor­ri­son once claimed, “All good art is polit­i­cal! And the ones that try hard not to be polit­i­cal are polit­i­cal by say­ing, ‘We love the sta­tus quo’” (Nance, 2). Indeed, the expres­sive nature of art gives artists the abil­i­ty to stir con­tro­ver­sy, shed light on for­mer­ly neglect­ed issues, and chal­lenge the sta­tus quo in a man­ner that is more mov­ing and pow­er­ful than per­haps any oth­er medi­um of com­mu­ni­ca­tion. There­fore, if we seek to cat­alyze trans­for­ma­tive change through the pow­er of art, it would be wise to take stock of avail­able oppor­tu­ni­ties and learn from past expe­ri­ences where alliances of artists and advo­cates have achieved impor­tant and endur­ing changes. In the glob­al health con­text, there is no bet­ter exam­ple of a suc­cess­ful part­ner­ship between art and polit­i­cal advo­ca­cy than the AIDS move­ment, which has been one of the most suc­cess­ful health move­ments of the 20th cen­tu­ry. Activists employed var­i­ous strate­gies to advo­cate for increased research and fund­ing, low­er drug prices, and social jus­tice for peo­ple liv­ing with HIV—with art being a key strat­e­gy. This means that the focus of this spe­cial issue of Imag­i­na­tions journal—scaling-up the life-sav­ing poten­tial of glob­al vaccination—would ben­e­fit from exam­in­ing the AIDS move­ment and under­stand­ing how such impact­ful strate­gic alliances among artists and advo­cates were nurtured.

Fol­low­ing the mas­sive pub­lic para­noia sur­round­ing what was ini­tial­ly labelled as “gay-relat­ed immune defi­cien­cy” (AVERT) in the ear­ly 1980s, a com­bi­na­tion of sweep­ing sci­en­tif­ic dis­cov­er­ies and polit­i­cal advo­ca­cy led to approval of the first anti­retro­vi­ral treat­ment in 1987. This was fol­lowed by the enact­ment of the Ryan White Com­pre­hen­sive AIDS Resources Emer­gency (CARE) Act in 1990, which increased acces­si­bil­i­ty of care for low-income, unin­sured Amer­i­cans liv­ing with HIV. The estab­lish­ment of the Joint Unit­ed Nations Pro­gramme on HIV/AIDS (UNAIDS) and var­i­ous non-prof­it orga­ni­za­tions such as the Amer­i­can Foun­da­tion for AIDS Research (amfAR) (focussed on research fund­ing) and ACT UP (focussed on polit­i­cal advo­ca­cy) through­out the 1980s and 1990s accel­er­at­ed the effort to end AIDS (AVERT). Although the AIDS epi­dem­ic con­tin­ues to pose a debil­i­tat­ing pub­lic health threat in many parts of the world, for the first time the major­i­ty of peo­ple liv­ing with HIV are able to access treat­ment (UNAIDS, World AIDS Day Report), peo­ple liv­ing with HIV have a nor­mal life expectan­cy (UNAIDS, World AIDS Day Report) (Samji et al.; John­son et al.), and AIDS-relat­ed deaths have decreased by 30% since their peak in 2005 (UNAIDS, Glob­al Report; AVERT).

The remark­able accom­plish­ments of the AIDS cam­paign were in no small part sup­port­ed through the help of art. For instance, in 1990 a pho­to­graph of David Kir­by, a young man dying from AIDS, was pub­lished in LIFE mag­a­zine (Cos­grove). The haunt­ing image, tak­en by jour­nal­ism stu­dent Therese Frare, has been seen by more than one bil­lion peo­ple around the world over the past three decades and has been described by LIFE as “the pho­to that changed the face of AIDS” (Cos­grove). The pic­ture, tak­en at the request of Kirby’s fam­i­ly, was quick­ly repro­duced in hun­dreds of mag­a­zines, news­pa­pers, and TV sto­ries world­wide. Anoth­er exam­ple is the use of art in the mobi­liza­tion of the Rib­bon Project by the Visu­al AIDS Artists’ Cau­cus in 1991 (Geoghe­gan). The red rib­bons, which were delib­er­ate­ly not trade­marked in order to allow wide­spread use, quick­ly became an inter­na­tion­al­ly rec­og­nized sym­bol of sol­i­dar­i­ty and sup­port for the AIDS cri­sis. The colour red was cho­sen for its con­nec­tion to blood and love, and a rib­bon so that it would be easy to recre­ate and wear (Visu­al AIDS, “Red Rib­bon”). Both the pho­to­graph of David Kir­by and the Rib­bon Project helped to bring visu­al expres­sion and pub­lic rep­re­sen­ta­tion to the AIDS cri­sis at a time when aware­ness that many peo­ple were suf­fer­ing in silence need­ed to be sig­nif­i­cant­ly enhanced for the sake of sav­ing lives.

Although anec­do­tal exam­ples such as these high­light the impor­tance of art in AIDS advo­ca­cy, to date only two papers have looked close­ly at this rela­tion­ship. In his 2008 essay on AIDS and artis­tic pol­i­tics, Tyrus Miller describes var­i­ous strate­gies used by British and Amer­i­can visu­al artists to advo­cate for the rights of peo­ple liv­ing with HIV, pro­vid­ing focussed crit­i­cism of main­stream media rep­re­sen­ta­tions of the AIDS cri­sis and the use of AIDS exem­plars. Sim­i­lar­ly, in 2010 Niyi Awofe­so and Anu Ram­mo­han pub­lished an essay that uses glob­al exam­ples to illus­trate the impact artists have had on HIV advo­ca­cy, fundrais­ing, health edu­ca­tion, com­bat­ting mis­con­cep­tions regard­ing HIV, and pro­tect­ing patients’ rights through the use of visu­al arts, mul­ti­me­dia, poet­ry, and the­atre. While both essays are fas­ci­nat­ing exam­ples of the pow­er of art in fos­ter­ing change, they most­ly pro­vide anec­do­tal exam­ples of the role of art as opposed to a com­pre­hen­sive review of the lit­er­a­ture, both pub­lished and unpub­lished. A review such as this would help to cre­ate a more com­plete frame­work for how art can influ­ence advo­ca­cy and lead to the eval­u­a­tion of the effec­tive­ness of dif­fer­ent art modal­i­ties and strate­gies, while also shed­ding light on how activists from oth­er pub­lic health move­ments can uti­lize art sim­i­lar­ly to advo­cate for pos­i­tive change.

There­fore, in this study we sought to under­take a scop­ing review and qual­i­ta­tive the­mat­ic analy­sis of social sci­en­tif­ic lit­er­a­ture on the role of art in polit­i­cal advo­ca­cy in the AIDS move­ment. Specif­i­cal­ly, we hoped to expand the cur­rent under­stand­ing of the rela­tion­ship between art and polit­i­cal advo­ca­cy by (1) under­tak­ing a focussed attempt to explore a rep­re­sen­ta­tive cross-sec­tion of the arts, includ­ing poet­ry, visu­al art, music, film, and the­atre; (2) con­duct­ing a com­pre­hen­sive lit­er­a­ture search; (3) using exam­ples from avail­able time peri­ods as well as dif­fer­ent geo­graph­i­cal regions; (4) exam­in­ing peer-reviewed lit­er­a­ture such as qual­i­ty assess­ment stud­ies, ran­dom­ized con­trolled tri­als, cross-sec­tion­al sur­veys, and case stud­ies, along with the grey lit­er­a­ture; and (5) con­sol­i­dat­ing find­ings from the lit­er­a­ture search to cre­ate a frame­work on how art can influ­ence polit­i­cal advo­ca­cy. Read­ers from art, art his­to­ry, and visu­al cul­ture will note the absence of a body of work on art and AIDS from their dis­ci­pli­nary per­spec­tives. A review of the sig­nif­i­cant body of lit­er­a­ture in those fields exceeds the scope of this essay. Rather, our over­all aim was to use the AIDS move­ment as a case study in order to gain a bet­ter under­stand­ing of how art can be used in glob­al health advocacy.


The wide scope of the lit­er­a­ture on the top­ic of art and AIDS advo­ca­cy calls for numer­ous forms of evi­dence to be ana­lyzed, from ran­dom­ized con­trolled tri­als and qua­si-exper­i­ments to case-con­trol stud­ies, ethno­graph­ic analy­ses, and cross-sec­tion­al stud­ies. To encom­pass such a wide vari­ety of arti­cle types, we decid­ed to use a mixed-meth­ods approach by per­form­ing a scop­ing review fol­lowed by a qual­i­ta­tive the­mat­ic analy­sis and an exam­i­na­tion of three short case stud­ies. We believed that com­bin­ing these three method­olo­gies would allow us to bring togeth­er a vari­ety of study designs and cre­ate as com­pre­hen­sive a frame­work of the lit­er­a­ture as possible.

Scoping Review

A lit­er­a­ture search was con­duct­ed in April 2016 using five elec­tron­ic data­bas­es: Google Schol­ar, Web of Sci­ence, Ebsco­Host, Pro­quest, and Sage Pub. The gener­ic search string used for each data­base is shown in Fig­ure 1.

(“Human Immun­od­e­fi­cien­cy Virus” OR “Acquired Immune Defi­cien­cy Syn­drome” ORHIVORAIDS)
(“Visu­al art” OR “Pho­tog­ra­phy” OR “Media art” OR “Per­for­mance art” 
OR “Com­mu­ni­ty art” OR “The­atre” OR “The­ater” OR “Street art” 
OR “Art exhib­it” OR “Graf­fi­ti” OR “Pho­tog­ra­phy” OR “Artis­tic”
OR “Art­work” OR “Poet­ry” OR “Poem” OR “Music” OR “Song” OR “Dra­ma” OR “Dance”)
(“Lob­by­ing” OR “Lob­by” OR “Advo­ca­cy” OR “Advo­cate” OR “Pol­i­cy” OR “Change”
OR “Pol­i­cy change” OR “Pol­i­cy­mak­ing” OR “Activism” OR “Activist” OR “Edu­cate”
OR “Edu­ca­tion” OR “Aware­ness” OR “Stig­ma” or “Funds” OR “Fundrais­ing” OR “Knowl­edge”)

Fig­ure 1: Gener­ic search string.

A chain sam­pling tech­nique was used, where­by we searched the ref­er­ence lists of rel­e­vant arti­cles to iden­ti­fy fur­ther lit­er­a­ture. Web of Sci­ence was also used to search for oth­ers that have cit­ed the rel­e­vant arti­cles, con­sis­tent with the pearl grow­ing method, which is the process of grow­ing addi­tion­al sources from a few ini­tial grains. To ensure that this review includ­ed grey as well as peer-reviewed lit­er­a­ture, we also searched Google for blog entries, civ­il soci­ety or gov­ern­ment reports, and any oth­er poten­tial­ly rel­e­vant web pages.

Arti­cles were includ­ed in the review if they dis­cussed the role that par­tic­u­lar forms of art­work or artists have played in advo­cat­ing for the AIDS move­ment in a polit­i­cal con­text. As not­ed ear­li­er, the def­i­n­i­tion of art used is any medi­um with a visu­al ele­ment, includ­ing pho­tog­ra­phy, visu­al art, the­atre, poet­ry, writ­ing, spo­ken word, music, and dance. Polit­i­cal advo­ca­cy was con­cep­tu­al­ized as any activ­i­ty aimed at chang­ing HIV/AIDS-relat­ed pol­i­cy by influ­enc­ing (1) elites, pol­i­cy mak­ers, or pol­i­cy net­works, (2) civ­il soci­ety, and/or (3) the gen­er­al pub­lic. While we were open to arti­cles in lan­guages oth­er than Eng­lish, we did not come across any in our search­es. No exclu­sion cri­te­ria were applied in terms of the year of pub­li­ca­tion or the coun­try in which the art­work was created.

Qualitative Thematic Analysis

Fol­low­ing the lit­er­a­ture search, a qual­i­ta­tive the­mat­ic analy­sis was con­duct­ed to iden­ti­fy recur­ring themes in the lit­er­a­ture. Two inves­ti­ga­tors (AJ and JW) inde­pen­dent­ly read through each study and extract­ed key themes about the role of art in HIV/AIDS polit­i­cal advo­ca­cy. In oth­er words, after read­ing each study the inves­ti­ga­tors asked them­selves, “How do the find­ings of the study relate to the rela­tion­ship between art and pol­i­cy mak­ing on HIV/AIDS?” This was fol­lowed by a rec­on­cil­i­a­tion process, in which the inves­ti­ga­tors dis­cussed any dis­agree­ments and decid­ed on a final set of over­ar­ch­ing themes.

Case Studies

In addi­tion to the scop­ing review and qual­i­ta­tive the­mat­ic analy­sis, three art­works were sep­a­rate­ly iden­ti­fied as well-known exam­ples that high­light the role of art in polit­i­cal advo­ca­cy through­out the AIDS move­ment. These exam­ples were cho­sen to help dis­cuss fur­ther the over­ar­ch­ing themes of the lit­er­a­ture in a more acces­si­ble, relat­able manner.

The case stud­ies were not iden­ti­fied through a lit­er­a­ture search. Rather, dur­ing the design phase of the study, inves­ti­ga­tors brain­stormed what famous visu­al art­works or artists came to mind when they thought of art in the con­text of AIDS. When a set of key art­works were iden­ti­fied, three were cho­sen based on their well-doc­u­ment­ed nature and their icon­ic sta­tus in the AIDS move­ment. A brief lit­er­a­ture search was then con­duct­ed to explore the design and impact of each artwork.


Scoping Review

Thir­ty-four rel­e­vant arti­cles were iden­ti­fied from the lit­er­a­ture search. 25 (74%) of the arti­cles were pub­lished in peer-reviewed jour­nals, eight (24%) were grey lit­er­a­ture, and one (3%) was a book. The most com­mon arti­cle types were case stud­ies (n=7) and ana­lyt­i­cal essays (n=4), fol­lowed by ethno­graph­ic analy­ses (n=3), pre-post stud­ies (n=3), qual­i­ta­tive stud­ies (n=3), reports (n=3), art exhi­bi­tion reviews (n=2), dis­ser­ta­tions (n=2), post-inter­ven­tion sur­veys (n=2), ran­dom­ized con­trolled tri­als (n=2), books (n=1), and news­pa­per arti­cles (n=1). Case stud­ies often involved ana­lyz­ing the gen­er­al impact of a par­tic­u­lar art­work or artist, with­out for­mal­ly assess­ing the artist or audi­ence mem­bers. Sim­i­lar­ly, ana­lyt­i­cal essays involved dis­cussing the gen­er­al role of art in HIV advo­ca­cy using evi­dence from the lit­er­a­ture as well as exam­ples of rel­e­vant artworks.

12 (35%) of the art­works were based in Africa and anoth­er 12 (35%) were in North Amer­i­ca, fol­lowed by Europe (n=5), Asia (n=4), and inter­na­tion­al (n=2). The most com­mon art modal­i­ties were the­atre (n=21), visu­al art (n=11), pho­tog­ra­phy (n=4), poet­ry (n=4), and music (n=4). Visu­al art was more like­ly to be used in Europe and North Amer­i­ca, where­as the­atre was more com­mon­ly found in Asian and African regions. The tar­get audi­ence of the 32 art­works was the pub­lic (91%), with five (32%) and one (3%) of the art­works tar­get­ed towards civ­il soci­ety or pol­i­cy net­works, respectively.

Case Studies

Case Study 1: Keith Haring

As one of the most influ­en­tial artists of his time, Kei­th Haring’s works helped to place the expe­ri­ences of indi­vid­u­als liv­ing with HIV on the public’s radar and pro­vid­ed pow­er­ful sym­bol­ism to the AIDS move­ment. The theme of HIV/AIDS began to appear mid­way through Haring’s career, first due to the loss of his friends’ lives to the ill­ness and lat­er to his own HIV diag­no­sis (Har­ing).

Fol­low­ing his diag­no­sis in 1988, Har­ing made it a per­son­al goal to use his art to help pro­vide fund­ing and imagery to AIDS orga­ni­za­tions (Kei­th Har­ing Foun­da­tion). This is illus­trat­ed in one work from 1988 (Fig­ure 2), in which a large, horned sperm is shown as a per­son­i­fi­ca­tion of HIV. The sperm is hatch­ing from an egg strapped to a man’s body, high­light­ing the oppres­sion and dev­as­ta­tion expe­ri­enced by indi­vid­u­als with the virus (Melch­er). The con­trast between the mon­strous appear­ance of the sperm and the fragili­ty of the man’s body reminds us that HIV was far from being con­sid­ered “treat­able” at the time, often leav­ing patients with a sense of despair and hopelessness.

In addi­tion to shed­ding light on the chal­lenges faced by peo­ple liv­ing with HIV, Har­ing, through his art­work, also called out the public’s indif­fer­ence and dis­dain towards the AIDS move­ment. Silence = Death (Fig­ure 3) shows a group of fig­ures cov­er­ing their ears, mouths, and eyes, high­light­ing the fact that most peo­ple were forced to suf­fer in absolute silence, reject­ed by their own com­mu­ni­ties (Melch­er). A pink tri­an­gle is shown in the back­ground, an emblem that had once been a sym­bol used to sig­ni­fy homo­sex­u­al indi­vid­u­als dur­ing the Holo­caust. Haring’s use of the pink tri­an­gle in his works helped gay and HIV/AIDS rights activists re-appro­pri­ate the sym­bol as a pro-gay, HIV rights icon through­out the 1980s (Melch­er).

Fig­ures 2 and 3: Kei­th Har­ing, Unti­tled, sumi ink on paper, 76 x 57 cm, 1988 (left); Kei­th Har­ing, Silence = Death, silkscreen on paper, 99 x 99 cm, 1989 (right). © Kei­th Har­ing Foundation

Case Study 2: Keiskamma Altarpiece

One of the most influ­en­tial and pow­er­ful pieces of AIDS-relat­ed artis­tic advo­ca­cy is the intri­cate bead­ing that makes up the Keiskam­ma Altar­piece (Fig­ure 4). This piece of art, mea­sur­ing approx­i­mate­ly 4 by 6.5 metres(14 by 22 feet), was cre­at­ed in 2006 over the course of six months in Ham­burg, South Africa, by 130 women whose small coastal town was near­ly dec­i­mat­ed by the AIDS epi­dem­ic (“Keiskam­ma Altar­piece”). Estab­lished as part of the Keiskam­ma Trust under the direc­tion of Dr. Car­ol Bak­er, a local physi­cian and artist, the under­ly­ing aim of the project was to pro­vide the com­mu­ni­ty mem­bers with a visu­al rep­re­sen­ta­tion of their expe­ri­ences and com­mu­nal resilience at the height of the AIDS epi­dem­ic (Ress).

While a sig­nif­i­cant his­tor­i­cal pre­cur­sor, the Isen­heim Altar­piece—a 16th-cen­tu­ry art­work from Alsace, France, that inspired the Keiskam­ma Altar­piece—depict­ed the hor­rors of ergo­tism, its 21st-cen­tu­ry suc­ces­sor focus­es instead on the dev­as­ta­tion of the AIDS epi­dem­ic (Chalmers). The piece is divid­ed into three sec­tions, with the out­er­most lay­er rep­re­sent­ing the death, pain, and void left by the epi­dem­ic in South African com­mu­ni­ties, rep­re­sent­ed through images of orphans, bro­ken fam­i­lies, funer­als, and emp­ty streets. This pan­el oper­ates in sharp con­trast with the mid­dle lay­er, which uses extreme­ly vivid, colour­ful images to por­tray hope, life, and the beau­ty of South African cul­ture. Final­ly, the out­er­most images show black-and-white images of three grand­moth­ers whose grand­chil­dren have been affect­ed by or lost to AIDS-relat­ed ill­ness­es (Chalmers). These brave women are described as “the saints of today and the guardians of the future, strug­gling to raise their own grand­chil­dren and those of oth­ers” (Chalmers 1338).

In addi­tion to pro­vid­ing com­mu­ni­ties with the means of earn­ing mon­ey and cop­ing with their loss, the cre­ation of the Keiskam­ma Altar­piece has helped to raise funds and sup­port for the local AIDS move­ment as a whole (Schmah­mann). For instance, the unveil­ing of the piece was used as an oppor­tu­ni­ty to raise funds for projects such as the Keiskam­ma Trust and the Keiskam­ma AIDS Treat­ment Project, which are aimed at serv­ing the med­ical and edu­ca­tion­al needs of local com­mu­ni­ties while also fos­ter­ing cre­ative and artis­tic endeav­ours by com­mu­ni­ty mem­bers (“Keiskam­ma Altar­piece”). In addi­tion, since its unveil­ing, the altar­piece has been trav­el­ling world­wide and has helped to raise inter­na­tion­al aware­ness of the pover­ty and void left by AIDS in South Africa (Schmah­mann). Due to its far-reach­ing impact on bring­ing local as well as inter­na­tion­al atten­tion and sup­port to the AIDS epi­dem­ic, the Keiskam­ma Altar­piece has been described as a “con­tem­po­rary icon of how the human spir­it can rise above adver­si­ty and cre­ate art of endur­ing strength and beau­ty” (Jeng).

Fig­ure 4: Artists of Keiskam­ma Art Project, The Keiskam­ma Altar­piece (open), Hum­burg, East­ern Cape, South Africa, 2005. Mixed media, 4.15 × 6.8 m © Keiskam­ma Art Project. Image cour­tesy of The Keiskam­ma Trust.

Case Study 3: The Ribbon Project

While there are now dozens of celebri­ty-endorsed activist projects, the Rib­bon Project is one of the most pow­er­ful exam­ples of how celebri­ties can bol­ster polit­i­cal move­ments and pro­mote change. Inspired by the yel­low rib­bons used to sup­port the US army in the Gulf War and to protest the Iran­ian hostage cri­sis in 1979–80 (Houghton), the now-icon­ic twist­ed red rib­bon was devel­oped by Visu­al AIDS artists in 1991 as a way to sim­ply yet mean­ing­ful­ly “show sup­port and com­pas­sion for AIDS vic­tims and their care­givers” (Visu­al AIDS, “About Us”).

The rise and suc­cess of the project were inti­mate­ly con­nect­ed to celebri­ty cul­ture from the very begin­ning. In fact, the red rib­bon first caught the media’s atten­tion when actor Jere­my Irons was seen wear­ing it at the 1991 Tony Awards (Geoghe­gan). Soon, the Visu­al AIDS vol­un­teers were being approached by Hol­ly­wood reporters, and demand sky­rock­et­ed to a point where sup­ply of the rib­bons had to be out­sourced to exter­nal orga­ni­za­tions. Beloved celebri­ties, includ­ing Eliz­a­beth Tay­lor, Bette Midler, and Richard Gere, began to proud­ly wear and open­ly dis­cuss the rib­bons in pub­lic, cre­at­ing what was called the “rib­bon-sport­ing cul­ture” among actors (Geoghe­gan).

The sup­port from Hol­ly­wood helped to bring the project into every­day Amer­i­can life, with schools and church­es hold­ing their own rib­bon-mak­ing col­lec­tives (Geoghe­gan). In effect, the red rib­bons had altered the public’s per­cep­tion of the ill­ness, from a mys­te­ri­ous, unknown phe­nom­e­non tak­ing place in the shad­ows to a tan­gi­ble, real issue that deserved to be dis­cussed and addressed pub­licly. In pre­vi­ous years, the White House of the Unit­ed States has dis­played a beau­ti­ful 28-foot red rib­bon at the North Por­ti­co on World AIDS Day—symbolizing the government’s com­mit­ment both to end the AIDS epi­dem­ic and to sup­port the peo­ple, fam­i­lies, and com­mu­ni­ties affect­ed by HIV/AIDS (Phillips).

In addi­tion to bring­ing the AIDS epi­dem­ic from the shad­ows into the main­stream media, rib­bon-mak­ing ini­tia­tives also became a mean­ing­ful way of rais­ing funds and sup­port for the cause in devel­op­ing coun­tries; numer­ous col­lec­tives around the world began to cre­ate, sell, and wear the rib­bons, with all pro­ceeds going towards sup­port­ing peo­ple affect­ed by the epi­dem­ic (Grünke­meier).

Many have point­ed out that the red rib­bon is only a sym­bol and not a real solu­tion, ques­tion­ing the extent of the project’s impact in the HIV/AIDS rights move­ment. How­ev­er, one can­not deny the fact that the red rib­bon helped to bring a sense of sol­i­dar­i­ty and uni­ty to a high­ly stig­ma­tized, mis­un­der­stood epi­dem­ic. Sir Nick Par­tridge, a promi­nent AIDS activist, described the mean­ing of the rib­bons for peo­ple liv­ing with HIV/AIDS and their fam­i­lies: “A num­ber of peo­ple liv­ing with HIV real­ly appre­ci­ate see­ing oth­er peo­ple wear­ing the red rib­bon. They realise they’re not alone and recog­nise that the major­i­ty of peo­ple wear­ing them prob­a­bly don’t have HIV them­selves, and that sense of sup­port and sol­i­dar­i­ty is very, very impor­tant” (Geoghe­gan).


Through the results of the scop­ing review, we iden­ti­fied three key themes regard­ing the role of art in AIDS polit­i­cal advo­ca­cy: address­ing neg­a­tive stereo­types, edu­ca­tion, and voice for indi­vid­u­als affect­ed by HIV/AIDS.

Theme 1: Addressing Negative Stereotypes

One can­not ignore the high­ly polit­i­cal nature of HIV/AIDS that dis­tin­guish­es it from oth­er pub­lic health epi­demics such as dia­betes and malar­ia. One of the rea­sons behind its polit­i­cal nature is that at the begin­ning of the AIDS epi­dem­ic, the dis­ease was tout­ed as a “plague” that could only affect the gay com­mu­ni­ty (Noland et al.). This mis­con­cep­tion, com­bined with per­sis­tent dis­crim­i­na­tion against the LGBTQ com­mu­ni­ty, led the pub­lic to respond to the epi­dem­ic with dis­dain and indifference.

Art was one of the ways in which activists tried to com­bat this mis­un­der­stand­ing. For instance, Lau­rien Ward stud­ied the effects of a play designed to show how AIDS can spread to indi­vid­u­als out­side tra­di­tion­al risk groups. Audi­ence reports from pro­fes­sion­al, com­mu­ni­ty, and busi­ness orga­ni­za­tions showed an increased under­stand­ing of modes of HIV/AIDS trans­mis­sion and greater sym­pa­thy for those with the ill­ness (Ward). Sim­i­lar­ly, Mary Stu­art Pet­ty used inter­views, obser­va­tions, and analy­sis of media archives to exam­ine how Philadel­phia com­mu­ni­ties used visu­al art in com­bat­ing main­stream depic­tions of HIV/AIDS. Com­mu­ni­ty mem­bers described using art to depict patients with AIDS that do not nec­es­sar­i­ly fit the stereo­types sur­round­ing the diseases—to illus­trate that AIDS can affect any­one, not sim­ply the gay com­mu­ni­ty or the sex­u­al­ly promis­cu­ous (Pet­ty). This grad­ual per­cep­tion shift—from view­ing AIDS as pri­mar­i­ly a dis­ease of the gay com­mu­ni­ty to one that can affect the gen­er­al public—eventually led to more calls for action from the pub­lic rather than just LGBTQ rights advo­cates (Mid­delkoop et al.).

Anoth­er fac­tor that con­tributed to the polit­i­cal nature of the AIDS epi­dem­ic were the social taboos against dis­cus­sions of sex and safe sex prac­tices. There­fore, advo­cates tried to encour­age more can­did dis­cus­sions around safe sex through art (Pet­ty). For instance, in India, Thukral and Tagra’s PUT IT ON! and PUT IT ON AGAIN!! inter­ac­tive art exhibits have used colour­ful, atten­tion-demand­ing graph­ics to tack­le the social inse­cu­ri­ties and stig­ma sur­round­ing sex edu­ca­tion (Thukral and Tagra).

Last­ly, per­haps more so than indi­vid­u­als with oth­er debil­i­tat­ing ill­ness­es, patients with HIV/AIDS have long been per­ceived as abject, help­less vic­tims, lead­ing to fur­ther alien­ation and dis­crim­i­na­tion (Camp­bell). Based on analy­ses of pho­tographs of those with HIV/AIDS since the 1980s, David Camp­bell report­ed that more recent activ­i­ties have been using pho­tog­ra­phy to con­vey more bal­anced por­tray­als of indi­vid­u­als liv­ing, not dying, with HIV/AIDS—thus help­ing to des­tig­ma­tize the ill­ness in pop­u­lar cul­ture (Camp­bell). Sim­i­lar­ly, a report on Unit­ed Nations Devel­op­ment Programme’s artis­tic cam­paigns in Chi­na found that projects that tend­ed to be the most well-received were the ones that led view­ers to accept patients as capa­ble of lead­ing nor­mal, hap­py lives as friends and fam­i­ly, not sim­ply as vic­tims deserv­ing sym­pa­thy (Xiaopeng and Settle).

Theme 2: Education Regarding HIV Prevention, Testing, and Treatment

Var­i­ous art modal­i­ties have been imple­ment­ed to dis­sem­i­nate health infor­ma­tion in an acces­si­ble, easy-to-under­stand man­ner. For instance, in 2002 a col­lab­o­ra­tion between the Tan­za­nia The­atre Cen­tre and Baga­mayo Col­lege of Arts used a par­tic­i­pa­to­ry the­atre method to allow local offi­cials, lead­ers, artists, youths, and com­mu­ni­ty mem­bers to iden­ti­fy key fac­tors con­tribut­ing to HIV trans­mis­sion and brain­storm poten­tial pre­ven­tion strate­gies (Mabala and Allen). Per­for­mance-based edu­ca­tion­al meth­ods have been shown to increase par­tic­i­pants’ knowl­edge about HIV pre­ven­tion among 13- to 16-year-old youth in Lon­don, UK (Camp­bell et al.). Sim­i­lar­ly, the use of dra­ma pro­duc­tion has led to increased atten­dance of AIDS coun­selling pro­grams by per­sons liv­ing with HIV, their part­ners, and their fam­i­lies in the Unit­ed States (Ward). On the oth­er hand, a ran­dom­ized con­trolled study by Elliott et al. found that com­pared to a stan­dard health edu­ca­tion sem­i­nar, the­atre pro­duc­tion did not have a sig­nif­i­cant impact on HIV knowl­edge, atti­tudes, and risk behav­iour among youth in Glas­gow, Scotland.

While there are con­flict­ing find­ings on the effec­tive­ness of art modal­i­ties in HIV edu­ca­tion, the afore­men­tioned stud­ies demon­strate how artists and sci­en­tists can work togeth­er in pub­lic health advo­ca­cy. The vari­ety in edu­ca­tion meth­ods as a result of sci­en­tist and artist col­lab­o­ra­tion is par­tic­u­lar­ly pow­er­ful in com­mu­ni­ties where lit­er­a­cy and numer­a­cy skills may be lim­it­ed, and where indi­vid­u­als may not iden­ti­fy with the under­stand­ing and cop­ing mech­a­nisms of the HIV/AIDS epi­dem­ic that exist in oth­er cul­tures. For instance, eMPa­thy Trust is an orga­ni­za­tion based in South Africa led by writ­ers and lead­ing researchers aimed at advanc­ing pub­lic under­stand­ing of the ill­ness (Rabi­nowitz). Fol­low­ing a needs assess­ment, eMPa­thy Trust pro­duced a children’s book titled Stay­ing Alive Fight­ing HIV/AIDS (Rabi­nowitz). The book uses pow­er­ful imagery and sim­ple lan­guage to con­vey bio­log­i­cal facts about HIV/AIDS trans­mis­sion and man­age­ment, to counter the myths sur­round­ing HIV/AIDS (Rabi­nowitz). By using words, sym­bols, and sto­ries derived from the local com­mu­ni­ties, the book illus­trates how art can present sci­en­tif­ic infor­ma­tion in a more approach­able, cul­tur­al­ly appro­pri­ate man­ner to the pub­lic (Rabi­nowitz).

Theme 3: Voice for Individuals and Communities Affected by HIV

Art has also been a pow­er­ful tool to shed light on the grave real­i­ties of those affect­ed by HIV/AIDS, thus help­ing to high­light unmet needs, low access to treat­ment, and poten­tial areas for pol­i­cy inter­ven­tion. For instance, one study found that by ask­ing youths with HIV/AIDS to com­pile and share poems and sto­ries about their own expe­ri­ences, local activists were bet­ter able to iden­ti­fy areas of needs that had pre­vi­ous­ly gone unno­ticed in pub­lic health efforts—such as sup­port groups and fam­i­ly edu­ca­tion (Mitchell). Sim­i­lar­ly, Roland Bleik­er and Amy Kay found that pro­vid­ing patients with cam­eras to doc­u­ment their own expe­ri­ences with the ill­ness was an effec­tive way of explor­ing dif­fi­cult-to-access ser­vices and bar­ri­ers to treatment.

Beyond sim­ply iden­ti­fy­ing issues, art can also empow­er patients and com­mu­ni­ties to inter­vene on those issues direct­ly. In a case study, Kennedy C. Chiny­owa describes how inte­grat­ed pop­u­lar the­atre has been used in Africa to inform pub­lic pol­i­cy debate. Fol­low­ing local per­for­mances about the community’s expe­ri­ences with HIV/AIDS, par­tic­i­pants got the oppor­tu­ni­ty to dis­cuss their expe­ri­ences with advo­ca­cy orga­ni­za­tions, local pol­i­cy mak­ers, and grass­roots activists. This was fol­lowed by a tour of near­by vil­lages and wards in the dis­trict, allow­ing for the shar­ing of diverse expe­ri­ences across com­mu­ni­ties (Chiny­owa, “Help­ing Them”). Sim­i­lar­ly, based on a 21-month ethno­graph­ic analy­sis, Susan Pietrzyk report­ed that civ­il soci­eties often use art such as dance, music, poet­ry, and the­atre to inform pol­i­cy mak­ers of emerg­ing areas of need.

Fur­ther­more, by giv­ing voice to those with HIV/AIDS, art modal­i­ties can allow patients to bet­ter advo­cate for them­selves in a med­ical set­ting. In their pre- and post-inter­ven­tion study, Johan­na Shapiro and Lynn Hunt found that the­atri­cal per­for­mances about AIDS were an effec­tive way to increase med­ical stu­dents’, res­i­dents’, physi­cians’, and faculty’s empa­thy for patients and insight into patient care—showing that art could be inte­grat­ed into med­ical edu­ca­tion. Fur­ther­more, at an HIV/AIDS out­pa­tient clin­ic in the Unit­ed States, murals by staff, patients, and their fam­i­lies were used to fos­ter a stronger sense of com­mu­ni­ty and build sup­port sys­tems (Kaimal and Ger­ber). Par­tic­i­pants were able to relate to one anoth­er over shared chal­lenges; physi­cians could gain insight into aspects of their patients’ expe­ri­ences that they may not be able to dis­cuss dur­ing their short clin­ic vis­its, while patients and fam­i­lies were pleas­ant­ly sur­prised to see that their physi­cians were often fac­ing strug­gles and dilem­mas sim­i­lar to their own (Kaimal and Gerber).

An impor­tant step for any indi­vid­ual or com­mu­ni­ty affect­ed by an epi­dem­ic of any pro­por­tion is the griev­ing process. To allow griev­ing to take place is to allow indi­vid­ual or com­mu­nal expres­sion through any means that may res­onate or pro­vide clo­sure; and com­mu­ni­ties across the world use the­atre, poet­ry, pho­tog­ra­phy, embroi­dery, and oth­er art modal­i­ties to allow those affect­ed the oppor­tu­ni­ty to voice their lived expe­ri­ences (Black; Han­na; Pet­ty). In Addis Aba­ba, Tan­za­nia, ask­ing local res­i­dents of a heav­i­ly HIV-affect­ed vil­lage to show their expe­ri­ences through pho­tog­ra­phy gen­er­at­ed mul­ti­ple rep­re­sen­ta­tions of HIV and allowed view­ers to “rec­og­nize that the process of rep­re­sen­ta­tion is inher­ent­ly incom­plete, and thus inevitably polit­i­cal” (Bleik­er and Kay, 141). As such, per­son­al expe­ri­ences of peo­ple liv­ing with or affect­ed by the epi­dem­ic can pro­vide a real­i­ty dis­placed from pop­u­lar opin­ion, poten­tial­ly affect­ing a shift in demand on polit­i­cal attention.

Geography and Art Modalities

While these three themes exem­pli­fy the main mes­sages deliv­ered through the meth­ods of polit­i­cal advo­ca­cy that we dis­cov­ered, we must also look at the ways in which geo­graph­i­cal loca­tion affects the scope of mes­sages. For instance, many of the stud­ies found in the scop­ing review not­ed that African advo­ca­cy efforts cen­tred around local expe­ri­ences as opposed to nation­al or inter­na­tion­al (Mabala and Allen; Black; Chiny­owa, “Emerg­ing Par­a­digms”). Fur­ther, the Keiskam­ma Altar­piece is an excel­lent exam­ple of polit­i­cal advo­ca­cy imbued with local per­spec­tives that affect­ed the inter­na­tion­al com­mu­ni­ty through its pow­er and emo­tion. This altar­piece trav­elled around Cana­da and the Unit­ed States, win­ning awards and praise for its depic­tion of local strug­gles with the AIDS epi­dem­ic of South Africa (Schmah­mann).

In con­trast, the Unit­ed States began advo­ca­cy efforts of an inter­na­tion­al scope through the devel­op­ment of the Rib­bon Project. Through this project, the focus of advo­ca­cy efforts shift­ed from a local per­spec­tive to the much larg­er inter­na­tion­al influ­ence due to ease of mobi­liza­tion (Moore). As well, the 2005 Amer­i­can musi­cal Rent exam­ined local New York City per­spec­tives on life with HIV for both peo­ple affect­ed direct­ly and indi­rect­ly, per­spec­tives that could then be applied to both the nation­al and inter­na­tion­al spheres of expe­ri­ence through a shared under­stand­ing of the impact of HIV/AIDS on the lives of peo­ple affect­ed (Schrad­er).

Anoth­er way to exam­ine the polit­i­cal advo­ca­cy efforts of artists around the world would be through the focussed uti­liza­tions of the var­i­ous art modal­i­ties employed. Amer­i­can artists David Woj­narow­icz and Kei­th Har­ing as well as activist group Gran Fury pre­sent­ed their opin­ions and voic­es through the medi­um of art that could be dis­played either on the street or in muse­ums. In Tan­za­nia, it was not­ed that due to high lev­els of illit­er­a­cy, ver­bal art through the forms of song, poet­ry, and the­atre are favoured to con­vey advo­ca­cy and health com­mu­ni­ca­tion efforts (Askew). In Thai­land, the­atre was a suc­cess­ful mode of AIDS advo­ca­cy and edu­ca­tion deliv­ery (Cahill), and in India, art exhibits and radio shows were pre­dom­i­nant (Nam­biar et al.). These exam­ples demon­strate that artists’ work is based on dif­fer­ent cul­tur­al and polit­i­cal objectives.

The Impact of the AIDS Movement on Global Health Funding

Last­ly, it is impor­tant to dis­cuss the sig­nif­i­cant impact the HIV/AIDS move­ment has had on the way in which glob­al health epi­demics are fund­ed. In fact, all of the three afore­men­tioned themes—addressing stig­ma, edu­ca­tion, and voice for patients—helped to shed light on the grav­i­ty of the epi­dem­ic and thus pro­mote more fund­ing and sup­port for affect­ed individuals.

To date, there have been 35 mil­lion deaths world­wide from HIV, and at the end of 2016 there were 36.7 mil­lion peo­ple liv­ing with HIV (Joint Unit­ed Nations Pro­gramme on HIV/AIDS, “Glob­al HIV & AIDS Statistics—2018 Fact Sheet”). By com­bat­ting the per­cep­tion of HIV/AIDS as an ill­ness affect­ing only select mar­gin­al­ized pop­u­la­tions, artists and advo­cates helped to raise aware­ness of the wide­spread nature of this epi­dem­ic and thus bol­ster more pub­lic mobi­liza­tion (Camp­bell). This has led to the back­ing of new, high-pro­file glob­al health fun­ders such as the Bill and Melin­da Gates Foun­da­tion. As a result, annu­al spend­ing on AIDS research and treat­ment has reached into the bil­lions of dol­lars. Increased fund­ing has also fos­tered the devel­op­ment of ded­i­cat­ed orga­ni­za­tions for the fight against HIV/AIDS, includ­ing the Glob­al Fund to Fight AIDS, Tuber­cu­lo­sis, and Malar­ia and Gavi, the Vac­cine Alliance, and paving the way for the devel­op­ment of mass immu­niza­tion and treat­ment frame­works of oth­er glob­al health epi­demics (Cohen).

The sec­ond way in which cre­ative arts have affect­ed HIV/AIDS fund­ing is through the part­ner­ship between artists and researchers. In addi­tion to help­ing to con­vey research find­ings to the gen­er­al pub­lic, art modal­i­ties have also been a pow­er­ful tool to raise funds for research efforts. For instance, Visu­al AIDS is an orga­ni­za­tion that uti­lizes visu­al arts to sup­port HIV-pos­i­tive artists, as well as raise funds for HIV/AIDS treat­ment and research (Visu­al AIDS, “About Us”). At the same time, physi­cians and researchers have also helped to add legit­i­ma­cy to arts-based AIDS advo­ca­cy move­ments. Activist groups—particularly ACT UP—were able to influ­ence AIDS research far more effec­tive­ly due to argu­ments strength­ened by physi­cian involve­ment than had they relied on less tech­ni­cal and more argu­men­ta­tive dis­course from the gen­er­al pub­lic (Fabj and Sob­nosky). With the ris­ing num­ber of med­ical pro­fes­sion­als and sci­en­tists join­ing AIDS activist groups, the mes­sages the groups con­veyed were more con­cise and med­ical­ly fac­tu­al, solid­i­fy­ing the grounds of the demands made by the orga­ni­za­tions, which in turn spurred much-need­ed fund­ing to advance research efforts (Epstein).

Third, the efforts of AIDS activists and artists high­light­ed both the delay in drug devel­op­ment and the “vast inequities between rich coun­tries and those too poor to afford pow­er­ful anti-HIV drug cock­tails” (Cohen, 163). Art has par­tic­u­lar­ly been a pow­er­ful way of rais­ing funds in poor com­mu­ni­ties that may have lim­it­ed access to oth­er means of mobi­liz­ing pub­lic inter­est and sup­port. For instance, as men­tioned pre­vi­ous­ly, the Keiskam­ma Altar­piece has allowed local com­mu­ni­ties to raise funds for local med­ical and edu­ca­tion­al HIV/AIDS-relat­ed projects (Visu­al AIDS, “About Us”).

Strengths and Limitations

In pro­vid­ing case stud­ies as well as dis­cus­sion on the three main emer­gent themes from our research, this analy­sis has not only pre­sent­ed a broad base of evi­dence but also spe­cif­ic cas­es where the AIDS move­ment has used art in its polit­i­cal advo­ca­cy. As can be seen from the research, a strength of the scop­ing review is the breadth of results dis­cov­ered from the ini­tial search­es. How­ev­er, as pre­vi­ous­ly men­tioned, an obvi­ous lim­i­ta­tion is the lack of research that emerged in lan­guages oth­er than Eng­lish. In addi­tion to ref­er­ences from oth­er dis­ci­plines such as art his­to­ry and visu­al cul­ture, it is entire­ly pos­si­ble that there is a large body of social sci­en­tif­ic research that did not appear in our search­es, as our terms were pre­sent­ed in Eng­lish, despite the fact that we were open to includ­ing pub­li­ca­tions in oth­er lan­guages. Anoth­er lim­i­ta­tion is the num­ber of terms used to describe visu­al art in the search strat­e­gy; there are many oth­er terms that could have been includ­ed, such as “graph­ic design.” How­ev­er, we chose a spe­cif­ic sub­set that we thought would be cap­tured in most research studies.

Future Research Directions

While a large amount of research was iden­ti­fied on the use of par­tic­i­pa­to­ry the­atre, grass­roots local activism, and indi­vid­u­als who con­tributed to AIDS polit­i­cal advo­ca­cy, there was a notice­able gap in the research: the lack of research on the quan­tifi­able impact of spe­cif­ic artis­tic inter­ven­tions, modal­i­ties, and efforts, such as those orga­nized by orga­ni­za­tions such as UNAIDS, ACT UP, and Gran Fury. In this essay, we have empha­sized the cen­tral­i­ty of art to the AIDS move­ment as a whole, and the pro­lif­ic use of art, sig­nage, com­mu­ni­ty protests, and lob­by­ing; how­ev­er, we have also found that there is a lack of social sci­en­tif­ic research assess­ing the impact of art as polit­i­cal intervention—including how it affect­ed the AIDS move­ment as a whole.

Final­ly, no research was found that quan­ti­ta­tive­ly doc­u­ments the shift in pub­lic per­cep­tion of AIDS from its explo­sive begin­ning to the even­tu­al devel­op­ment of anti­retro­vi­ral ther­a­py and gov­ern­ment-sub­si­dized treat­ment access pro­grams. While this might be a rather daunt­ing task, it would be use­ful to the field of AIDS research, as it would show the tran­si­tion of the dis­ease to a glob­al epi­dem­ic, and how the response grew on mul­ti­ple con­ti­nents. Fur­ther, an in-depth look into the way artis­tic expres­sion may have influ­enced the speed of devel­op­ment of anti­retro­vi­ral ther­a­py drugs over the years and the pol­i­tics sur­round­ing local and inter­na­tion­al access and dis­tri­b­u­tions would be a help­ful endeav­our. In future iter­a­tions of this research we would hope to address this gap as well as exam­ine what research into the role(s) of art in the AIDS move­ment might offer analy­sis of oth­er glob­al health phenomena.

Works Cited

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Image Notes

Fig­ure 1: Gener­ic search string.

Fig­ure 2: Kei­th Har­ing, Unti­tled, sumi ink on paper, 76 x 57 cm, 1988. © Kei­th Har­ing Foundation

Fig­ure 3: Kei­th Har­ing, Silence = Death, silkscreen on paper, 99 x 99 cm, 1989. © Kei­th Har­ing Foundation

Fig­ure 4: Artists of Keiskam­ma Art Project, The Keiskam­ma Altar­piece (open), Hum­burg, East­ern Cape, South Africa, 2005. Mixed media, 4.15 × 6.8 m © Keiskam­ma Art Project. Image cour­tesy of The Keiskam­ma Trust.