Bangin' Down the Door: an Analysis of AIDS Activism at the Toronto AIDS Conference

Prologue: I served as a reporter to the Toronto Youthforce during the Toronto International AIDS Conference from August 10-18th. What follows is a feature article written for the Youth AIDS conference site.

August 17, 2006.

It seemed like business as usual at the main pressroom on Day 3 of the International AIDS Conference in Toronto. Helene Gayle, President of the International AIDS Society, had just introduced Gregg Goncalves, of the Treatment Action Campaign (TAC), when the situation began to change rapidly. Gregg ceded his spot to two HIV positive black South African women, Sipho Mthathi and another TAC representative—a highly unusual act in such settings. As Sipho began to speak, a dozen members of TAC stood up together and loudly began to chant slogans and holding signs reading “Gates is not the voice of (People with AIDS)!” and “Media: Activist not ‘Hollywood’ Conference.” The previously somber crowd of mostly press reacted with surprise.

I had been waiting for this moment. Through personal sources, I'd previously embedded myself with a Northern activist organization, the Student Global AIDS Campaign, which provided additional support to TAC during the action. Moving from a protest outside the convention center against U.S. Free Trade Agreements which had taken place shortly beforehand, they had regrouped inside the building and coordinated with their South African colleagues via cell phone, awaiting permission to join the demonstration. A few minutes later, a member of TAC arrived to give them the green light.

“They’re now accepting white people,” Matt Kavanagh, Harvard graduate and executive director of the organization, informed his colleagues, his tone mixing both subtle humor and a sort of knowing liberal consciousness. Symbolic and literal representation of communities they view as marginalized or under-represented is an ever-present, almost obsessive concern for the AIDS activist community. TAC, which is largely comprised of HIV-positive black South Africans, but whose membership includes other ethnic groups, had previously expressed a desire to keep the demonstration as ‘black’ as possible.

Over 60 percent of all people living with HIV are in Sub-Saharan Africa, and South Africa has more than any other individual nation: 5.5 million, of whom the vast majority of those diagnosed are black.

Upon receiving the green light, the SGAC group discretely slid into the media center, where they joined TAC members in one of the unused interview rooms for a quick briefing on their message and action plan. Then, they walked into the press conference with signs concealed, before taking over and utilizing the entire event to voice their concerns in efficient, if dramatic fashion.

The whole process took about 15 minutes.

It was not the first time they had co-opted an event in such fashion. Rather, it has become a practically expected part of any large-scale AIDS event for activists to take main stage through direct action tactics. Since the inception of organizations such as Act UP (AIDS Coalition to Unleash Power) in New York and Paris--whose “Silence Equals Death” slogan in the 1980s remains one of the most successful advocacy campaigns in recent history--through to today’s transnational advocacy movements, AIDS activists have played a historic, formative role in shaping the AIDS debate. Battling for media representation, activists have been influential in enlarging the circle of inclusion beyond traditional medical and political fields.

This conference is a case study of this process of consistent evolution. Originally starting as a research-centered conference for the scientific and medical communities, the International AIDS Conference has since grown to become an extraordinarily broad gathering of people involved in HIV from every country and sector of society, including community organizers, peer educators, sex workers, music celebrities, and, of course, activists. It now even boasts its own "global village," a colorful, lively hub of activity where music and street theatre takes place besides sex workshops and fashion shows.

AIDS is commonly described as the petri dish of social issues. It serves to magnify and bring to light a broad spectrum of contemporary social ills, including race, class, sexuality, increasing corporate power, democracy, trade liberalization, and U.S. hegemony. In similar fashion, the AIDS activist movement, with its own complex dynamics and varied worldviews, effectively captures the state and direction of other global social movements, serving indirectly as its own petri dish.

Ms. Gayle, whose glances of consternation towards TAC delegates before the ‘take-over’ suggested that this was not her first activist 'couped' event, attempted to keep the discussion as close to the original agenda as possible. However, following the conference’s unplanned transformation, she struggled to keep discussion on topic, and the majority of questions from the media were addressed to, or at least addressed by Ms. Mthathi, whose articulacy and well-informed response remained constant.

The general theme of Ms. Mthathi and her organization was the continued marginalization and lack of participation of those most affected by the virus: poorer people of color from developing countries. However, she touched on a variety of other issues, including what she viewed as her own government’s misinformation campaigns, difficulty in procuring second line treatment, and pharmaceutical lobby interests in the United States’ HIV/AIDS foreign policy.

Several times during the questioning process, one of the TAC’s leaders, who is a white man, condemned the moderator and several journalists for addressing their questions to Dr. Fauci, an American doctor.

“This is exactly the problem we’re talking about,” he shouted angrily. “Why don’t you ask Sipho to answer the question? Are only people who come from [English-speaking countries] allowed to answer?”

Meanwhile, media ravenously snapped up footage and photographs of the standing protesters, who continued to chant and cheer following particularly prescient points. More media gathered outside the pressroom, shooting their pictures with arms outstretched upwards, unable to squeeze into the now crowded entrance.

I noticed Frika Chiu, the young positive Indonesian woman who had spoken so eloquently at the Opening Ceremony, holding a sign towards the back which read “Face Reality About HIV/AIDS – People Are Dying,” another attack on the ‘celebrity circus’ nature of this year’s conference. This is, some might argue, an inevitable consequence of the more inclusive, populist direction that activists such as Frika herself have championed for the IAC. With increased media exposure comes increased commercial interest, in addition to a watering down, or perhaps more accurately, a “prettying up” of the event for lay audiences.

It was whilst swiveling the video camera around the room that I couldn’t help but realize that this was a perfect “petri dish” moment in itself. Perched at the front sat Helene Gayle, an African-American woman with seasoned roots in the establishment, and Dr. Fauci, from the upper crust of medical circles and representative of the white, educated, male elite in the North. Then, to his left, Ms. Mthathi and her colleague, two young 'community-level' women, aggressively representing the sentiments of the majority of people infected or affected by the virus. Finally, next to them, a Ugandan female minister, representing the oft-criticized African elite.

Before them in the audience lay more fragmented segments of international society. In one pocket stood the TAC protesters: angry, emotive, and black. Seated or kneeling around them, the media: mostly white if slightly more diverse, many of whom are busy in their own career-driven lives--capturing footage on expensive cameras, emailing it back to their bureaus, then flying off to cover another story next week. At the back of the room, protesters from outside South Africa: some of them Northern, others from the South, all very vigorous in righteously supporting TAC, whom they often refer to as their “brothers and sisters,” a glimpse into their model of global citizenship and social equity.

The room had become not only a perfect microcosm of the global AIDS society, but of current society in general. It would have looked fantastic in some introductory sociology or political science class for many a Fall college returnee.

In this heavily discussed globalizing world are mixed notions of choice, freedom and rights. As an activist example: the political and business leaders of the world have the choice to take decisive action in overcoming the epidemic; millions of people living with HIV without access to generic drugs do not have the choice to save their own lives. For them, many governments and pharmaceutical executives are denying the poor and disempowered the human right to life.

An opposing example: Pharmaceutical companies should have the freedom to patent and protect their intellectual property in a competitive global economy; the U.S. government has the freedom to encourage free trade agreements with poorer countries. For such individuals, activists do not understand the realities of macroeconomics or international trade, and their shouting and theatre provide more distraction than positive outcome.

Depending on where one stands, from a merely academic perspective, all of these arguments are relative constructions of the same titanic debate, and neither one nor the other party is entirely correct.

What does not seem to be non-unanimous is the notion of human worth. If human life is valuable, and indeed, the consensus in this AIDS debate is that it is, and if saving lives and overcoming the epidemic should come before profit or ideology or elements of faith, then why is it that 25 years into the epidemic, we’re not even at the point of curbing it, let alone close to eradicating it?

Depending on whom you talk to at this conference, the answer is sure to be different. And the answer will continue to change as new treatments are rolled out, and with new international trade agreements in flux. From what I’ve heard, it seems like we’re finally moving in the right direction. Positive statistical evidence from a recent UNAIDS report also suggests faint glimmers of improvement.

No matter the state of our efforts, however, at least one thing is assured: there will be angry, impassioned activists in whichever direction the AIDS response travels; demanding more minority participation, chastising anything short of universal access to drugs, steadfast in their belief that saving human life should come before all else. As the TAC members left the press conference today to go “tear down” the South African government’s booth, they sang together: it was a beautiful, mournful song which echoed out of the media center and into the main halls of the convention center.

The world’s response to AIDS is much better because of people such as Sipho Mthathi. Activists are just as necessary now as they were during the beginnings of the epidemic, so many years ago. And, let us hope, not too many years ahead. Enough life has been shed for my generation; I dare not to think what AIDS may bode for that of my children.


Mark Hiew is a reporter for the Toronto YouthForce. He can be reached at mark(dot)hiew(at)gmail.com