ACT-UP and the AIDS Crisis

— Kimberly Smith

TWO YEARS AGO, thousands of demonstrators flooded the halls of Grand Central Station. The domed room, with its cavernous ceilings, was designed to dwarf city dwellers in its magnificence, but ACT-UP (AIDS Coalition to Unleash Power) members poured into the center, halting pedestrian traffic, closing ticket counters and staging a "die-in" across its marble floors.

Wherever participants looked they saw faces of people they knew. With its roots in the lesbian and gay community, four-year old ACT-UP had won important inspirational victories in the area of drug research. But while much of the media still found ACT-UP's clever graphics and pithy slogans entrancing the pattern of governmental reforms was beginning to ebb—just as the crisis was worsening.

ACT-UP's "Day of Desperation" was an attempt to communicate the anger, fear and urgency of activists about the growth of the pandemic, their own health, and the deaths of friends and family. Without a target or concrete demands, the demonstration occurred just as U.S. troops were sent to the Persian Gulf "Money for AIDS, not for war," demonstrators shouted.

When most people think of the AIDS movement they still think of ACT-UP Early on, ACT-UP challenged the medical establishment's homophobic response to AIDS. ACT-UP is responsible for speedier, more humane, federal drug research policies. Its effective use of the media and large demonstrations made mandatory testing and AIDS quarantines political impossibilities.

Yet the largest AIDS demonstration to date was not organized by ACT-UP Fifty thousand Haitian activists, angered by racist and AIDS-phobic immigration policies, marched across the Brooklyn Bridge nearly three years ago. ACT-UP organizers did not join them.

Communities and a Movement in Crisis

It is estimated that a million people in the United States are HIV infected. Reports of AIDS will double as the new AIDS definition goes into effect. Across the country Blacks and Latina/os make up a disproportionate number of the MW infected. In New York City, two-thirds of AIDS cases are among people of color.

The "coalition" in the AIDS Coalition to Unleash Power, however, has never reflected meaningful affiances with people of color communities also devastated by the crisis. The inability of ACT-UP to organize more broadly has weakened the movement almost to the point of exhaustion. Its activists are deeply demoralized. In New York, meetings that once attracted thousands now draw closer to one hundred. Key organizers have died. Many people of color left the group as a result of organizing differences. Newer white activists attend meetings, but much of the vita1ity, the sense that something is being built, is gone.

More than a decade into the AIDS epidemic, activists face an organizing crisis. Business and government have yet to allocate resources to halt the massive epidemic HIV-infected Haitian refugees are kept out of the United States, jailed in illegal camps. And the United States is still bombing Iraq. Against this backdrop of economic decline and continuing stigma associated with AIDS, the movement is deteriorating because of internal racism and an inability to draw connections to other struggles waged under capitalism.

Many ACT-UPs have split over tactical and strategic differences. Some members wanted to maintain dual approach, negotiating with government leaders and drug companies for lower prices and drug research reform while also staging demonstrations. Others wanted to mobilize among HIV-infected woman, primarily poor women of color, challenging sexism in health care.

But people of color were locked out of much of these debates. In the dualist approach, the issues of people of color were perceived to be fundamentally different than the issues of gay white men. In the other approach, those who wanted to mobilize around women's AIDS issues were often unwilling to work with organizations serving women of color, who are primarily affected.

But in both cases, ACT-UP's militant response to AIDS set it apart from many other communities affected by the crisis. While ACT-UP was marching on Wall Street, occupying federal offices and demanding government accountability, people of color communities were building grassroots organizations to deliver previously non-existent health services.

Many of the white activists on both sides of the internal debate labelled the service model response to AIDS "institutional" pointing out that these organizations were dependent on government and private funds and were unlikely to participate in ACT-UP events. Thus these grassroots organizations were perceived not as resources, but as opponents.

This created an uncomfortable gulf between ACT-UP organizers and organizers in the Black and Latino communities. ACT-UP activists fought for the health care they grew up believing was their entitlement; people of color struggled to bring adequate health care to communities which often had no services.

When the pattern of small government reforms for drug research began drying up, ACT-UP began attacking service organizations. Under the impetus of the Latino/Latina caucus, the organization began attacking a large and well-funded Hispanic organization which was taking advantage of large government grants but providing few services to constituents. Likewise, ACT-UP also criticized other non-profit organizations serving gay white men. But organizations run by and for WV-infected people of color, sharing much of the agenda of the left wing of ACT-U1 were also harshly criticized for receiving government funds.

ACT-UP developed a reputation in these groups of being elitist, racist and hard to work with. Throughout its history, ACT-UP took steps to bridge these gaps. At times it was successful—some of the most important and exciting work ACT-UP did was in coalition—while at others it confirmed the worst assumptions.

Redefining AIDS and Problems of Tactics

This year, as a result of a long campaign, the Centers for Disease Control (CDC) changed the definition of AIDS. The new definition will include hundreds of thousands, primarily women, previously unable to receive an AIDS diagnosis because their symptoms did not match the original list identified twelve years ago in gay white men. Women and injection drug users will now have more governmental support and access to treatment denied previously because, though these patients were HIV infected, they simply did not manifest the symptoms of gay white men.

But it is a victory that does not go far enough. Many of the conditions associated with HIV infection are still not included. While the change will double AIDS fig-tires, it leaves thousands without a diagnosis or access to treatment Much of ACT-UP's organizing around the campaign was done without the input of people of color. Lesbians and gay men of color struggled to bring a coalition to the effort but were pushed out through ACT-UP tactics, such as "affinity groups."

Affinity groups have played a positive role. They are primarily used to evade government surveillance in advance of demonstrations. A self-defined group gathers in secrecy to plan illegal activities such as hanging banners from public buildings or a group chaining itself to railing at the stock-market.

But affinity groups also offer ACT-UP activists alternative structures to circumvent democratic debate over demands and long-term strategies; and since they are self-defined they are also by nature exclusive. In the case of the CDC campaign, when people of color and white activists objected to an action that they thought was racist, the planning group quickly split off and called itself an affinity group—effectively silencing further debate. Recently, a group of wealthy and influential ACT-UP members left and formed their own, invitation-only group focusing on drug treatment and research.

Neither the battle nor the tactics are unique to ACT-UP Historically overcoming problem the of racism has been an issue in the women's movement as well as in the labor movement ACT-UP tactics serve as models for other movements. The reproductive rights movement often demonstrates through affinity groups. Recently formed groups, like Women's Action Coalition (WAC), make use of ACT-UP Madison Avenue techniques to garner media attention, including effective use of graphics and slogans.

For many activists, AIDS was a catalyst to becoming politicized, and ACT-UP their first experience in organizing. Lacking a sense of history, ACT-UP committed many of the mistakes of earlier movements. Socialists, who often bring a historical perspective, did not contribute in great numbers to the development of the AIDS movement. This was detrimental to ACT-UP and reveals what many lesbians and gay men consider the left's homophobic legacy.

While the women's and reproductive rights movement are not generally considered to be bastions of class-conscious resistance to capitalist forces, many socialists perceive their strategic importance. Working within these movements, socialists often bring a commitment to democracy, a sense of history, an ability to draw connections between governmental policy and the economy and sometimes, an anti-racist agenda.

There is much stigma associated with AIDS, in part because of homophobia. Because they did not participate in building the AIDS movement, socialists missed the opportunity to make important connections between business and government responses to AIDS, homophobia and the economy. Through their presence in the movement, they potentially could have made the case that a quest for profit does not necessarily foster a quest for the end of the AIDS epidemic, and that organizing efforts need to reflect this reality.

The crisis continues. There are reports that Western drug companies are testing AIDS vaccines in the bodies of African children. While the far right has launched a vicious attack on lesbians and gay men, some activists express hope for change with the new Clinton Administration. Some in the lesbian and gay community are still hopeful about his stand on gays in the military and health-care reform proposals.

While the old ACT-UP tensions still resonate, newer organizations like Black AIDS Mobilization, formed by lesbians and gay men of color, struggle against homophobia and AIDS stigma while addressing HIV infection and health-care access for people of color. Activists from both groups join members of the Haitian community on important issues like the release of Haitian immigrants jailed in Guantanamo Bay as HIV positive. Other ACT-UP organizers draw the connection of AIDS services to broader questions of universal health care.

But as ACT-UP's numbers dwindle, activists are discouraged and without strategies to create the still-necessary coalitions in the battle against AIDS. The epidemiology of AIDS effectively illustrates the connection between the poor and working class, the condition of women, people of color, and lesbians and gay men. But because it could not incorporate anti-racist organizing into its agenda, ACT-UP may have lost an opportunity to build a movement with the potential to draw these connections—a movement powerful enough to change current deadly AIDS policies.

March-April 1993, ATC 43