The Beginnings of Activism by and for People With AIDS
The Beginnings of Activism by and for People With AIDS
People with AIDS initially organized not only because they wanted to survive biologically, but also because they did not want to spend their lives—however short or long—as exhibits in other people's spectacles of grief, fear, anger, or nihilism.
The Denver Principles led to the creation of the National Association of People With AIDS (NAPWA) in the United States, and eventually to similar associations in a number of nations. But the legacy of the Denver Principles also had an important if less obvious influence in later, more confrontational forms of AIDS activism, when the separate agendas of defense of the broader community and the empowerment of people with AIDS were synthesized by later, larger, and more influential AIDS activist groups.
Kramer, Callen, and hundreds of others found themselves enacting that synthesis during the formation of the AIDS Coalition to Unleash Power (ACT UP) in New York in 1987. ACT UP became a national movement in part from new chapters that followed, as well as from incorporating like-minded political groups that were emerging in other cities during the same time. Kramer himself, like many gay men of the time, assumed he might be infected, but didn't have his HIV-positive status confirmed until 1988. For him, AIDS was important because it affected the gay community as a whole—so the distinction between the diagnosed and the undiagnosed was less important. The political approach of the Denver Principles, by contrast, made diagnosis into a distinct political category and emphasized the unique voice of people with AIDS.
ACT UP succeeded in part because its constituency and its membership were larger and more broad than those of groups composed only of self-disclosing people with AIDS. The latter kind of groups were often more effective as mutual aid societies than as political forces in and of themselves. The Denver Principles' agenda meant claiming an active role in a conversation about AIDS, but did not necessarily establish where that conversation should lead.
Still, the ideas of the Denver Principles ended up being fundamental to later AIDS activism. Early ACT UP meeting minutes reveal a disagreement between ACT UP and NAPWA about who should speak as "AIDS activists" at a larger gay and lesbian protest march—and whether that should be someone like Kramer, who did not have an AIDS diagnosis. Members of the People With AIDS Coalition and the People With AIDS Health Group, groups based on the ideas of the Denver Principles, spoke on the ACT UP floor as representatives of people with AIDS. The meeting notes make clear that they helped explain to ACT UP members why NAPWA might feel that people with AIDS should represent the politics of AIDS within this larger community event.
Their insistence on maintaining their distinct political identities within ACT UP was notable; ACT UP veteran Gregg Bordowitz later recalled that during that early phase,
[I]t was taboo to identify as a person with HIV within the group. It's hard to imagine, but you'd be sitting in this room and you would assume that most of the men in this room were positive or had lovers who were positive. But no one—I only remember Michael Callen and Griffin Gold were the two people who would announce that they were people with AIDS before they spoke.
Callen and Gold were cofounders of New York's People With AIDS Coalition—a direct descendant of the Denver Principles.
Nonetheless, although many people within ACT UP thought of it primarily as a gay and lesbian social movement (and indeed, it is still framed as such in a recent scholarly account by a former ACT UP activist), the earlier ideas of self-empowerment of people with AIDS eventually became a fundamental part of ACT UP's politics. As the HIV-negative ACT UP veteran Jim Eigo later put it:
[W]hat we had to articulate was first, the whole idea that people with AIDS, or people with HIV, had a right to make decisions about their lives, their treatment, how they were treated at every stage of their disease and through every government organization they had to deal with.
That broader idea of the empowerment of people with AIDS, most often without reference to that idea's distinct political history, ultimately became the basis of ACT UP's political credibility. When ACT UP and its members gained the power to influence research, drug approval, and other aspects of AIDS policy, that power was built on the legitimacy of its claims to represent people with AIDS.
Later, the Treatment Action Campaign (TAC) in South Africa ended up using a similar synthesis of broad mobilization and the narrower notion of the empowerment of people with AIDS. TAC was founded by Zackie Achmat, an activist living with HIV, and some of his friends and political allies. Originally a project of South Africa's National Association of People With AIDS (another Denver Principles descendant), it evolved into what might be described as a militant trade union for HIV-positive people, and as the most successful of a number of social movements that demanded that the postapartheid government do more for the poor.
Like ACT UP, the Treatment Action Campaign drew on the expertise and energy of a broader constituency. Like ACT UP, it also had a larger community defense agenda, in TAC's case by demanding economic and health justice for impoverished Black people. But its legitimacy depended on its ability to enlist and represent people living with HIV/AIDS. Because of that legitimacy, TAC succeeded in pressuring the government to make antiretrovirals available in the South African public sector health system.
The legacy of the People With AIDS agenda in the United States includes changes in clinical research, drug development, and the regulation of medicines. Once effective treatment became available—partly as a result of these changes—the global legacy of the People With AIDS agenda was to persistently reduce seemingly complex policy debates to their simple essence: should people living with HIV die of a treatable disease to support other competing priorities? Because activists helped simplify and then answer the myriad forms of that question, millions of people lived who otherwise would have died.
Public health practitioners are trained to think from the point of view of defending communities, rather than from that of individuals with a disease. Indeed, many of us would recognize in ourselves the impulse to, as Campbell put it, "adopt a strident tone … to compel the complacent to realize how important [the problem] really is." But the risk of social death is not simply an ethical peril. It is also a practical challenge: if a diagnosis puts people at risk for social death, that risk becomes a powerful incentive to avoid diagnosis. By contrast, the earliest AIDS activists offered an affirmative strategy of responding directly to a health threat while resisting social death.
The first people with AIDS did not deny the seriousness of their disease. But if the threat of death became the defining feature of their existence, social death would soon follow. By organizing themselves, and then organizing their communities around them, the earliest AIDS activists remained important and, ultimately, honored people within their communities. Their ideas and actions, and those of the activist movements they inspired, helped to eventually make AIDS a fact of life rather than a synonym for death.
The Denver Principles' Legacy in Activism
People with AIDS initially organized not only because they wanted to survive biologically, but also because they did not want to spend their lives—however short or long—as exhibits in other people's spectacles of grief, fear, anger, or nihilism.
The Denver Principles led to the creation of the National Association of People With AIDS (NAPWA) in the United States, and eventually to similar associations in a number of nations. But the legacy of the Denver Principles also had an important if less obvious influence in later, more confrontational forms of AIDS activism, when the separate agendas of defense of the broader community and the empowerment of people with AIDS were synthesized by later, larger, and more influential AIDS activist groups.
Kramer, Callen, and hundreds of others found themselves enacting that synthesis during the formation of the AIDS Coalition to Unleash Power (ACT UP) in New York in 1987. ACT UP became a national movement in part from new chapters that followed, as well as from incorporating like-minded political groups that were emerging in other cities during the same time. Kramer himself, like many gay men of the time, assumed he might be infected, but didn't have his HIV-positive status confirmed until 1988. For him, AIDS was important because it affected the gay community as a whole—so the distinction between the diagnosed and the undiagnosed was less important. The political approach of the Denver Principles, by contrast, made diagnosis into a distinct political category and emphasized the unique voice of people with AIDS.
ACT UP succeeded in part because its constituency and its membership were larger and more broad than those of groups composed only of self-disclosing people with AIDS. The latter kind of groups were often more effective as mutual aid societies than as political forces in and of themselves. The Denver Principles' agenda meant claiming an active role in a conversation about AIDS, but did not necessarily establish where that conversation should lead.
Still, the ideas of the Denver Principles ended up being fundamental to later AIDS activism. Early ACT UP meeting minutes reveal a disagreement between ACT UP and NAPWA about who should speak as "AIDS activists" at a larger gay and lesbian protest march—and whether that should be someone like Kramer, who did not have an AIDS diagnosis. Members of the People With AIDS Coalition and the People With AIDS Health Group, groups based on the ideas of the Denver Principles, spoke on the ACT UP floor as representatives of people with AIDS. The meeting notes make clear that they helped explain to ACT UP members why NAPWA might feel that people with AIDS should represent the politics of AIDS within this larger community event.
Their insistence on maintaining their distinct political identities within ACT UP was notable; ACT UP veteran Gregg Bordowitz later recalled that during that early phase,
[I]t was taboo to identify as a person with HIV within the group. It's hard to imagine, but you'd be sitting in this room and you would assume that most of the men in this room were positive or had lovers who were positive. But no one—I only remember Michael Callen and Griffin Gold were the two people who would announce that they were people with AIDS before they spoke.
Callen and Gold were cofounders of New York's People With AIDS Coalition—a direct descendant of the Denver Principles.
Nonetheless, although many people within ACT UP thought of it primarily as a gay and lesbian social movement (and indeed, it is still framed as such in a recent scholarly account by a former ACT UP activist), the earlier ideas of self-empowerment of people with AIDS eventually became a fundamental part of ACT UP's politics. As the HIV-negative ACT UP veteran Jim Eigo later put it:
[W]hat we had to articulate was first, the whole idea that people with AIDS, or people with HIV, had a right to make decisions about their lives, their treatment, how they were treated at every stage of their disease and through every government organization they had to deal with.
That broader idea of the empowerment of people with AIDS, most often without reference to that idea's distinct political history, ultimately became the basis of ACT UP's political credibility. When ACT UP and its members gained the power to influence research, drug approval, and other aspects of AIDS policy, that power was built on the legitimacy of its claims to represent people with AIDS.
Later, the Treatment Action Campaign (TAC) in South Africa ended up using a similar synthesis of broad mobilization and the narrower notion of the empowerment of people with AIDS. TAC was founded by Zackie Achmat, an activist living with HIV, and some of his friends and political allies. Originally a project of South Africa's National Association of People With AIDS (another Denver Principles descendant), it evolved into what might be described as a militant trade union for HIV-positive people, and as the most successful of a number of social movements that demanded that the postapartheid government do more for the poor.
Like ACT UP, the Treatment Action Campaign drew on the expertise and energy of a broader constituency. Like ACT UP, it also had a larger community defense agenda, in TAC's case by demanding economic and health justice for impoverished Black people. But its legitimacy depended on its ability to enlist and represent people living with HIV/AIDS. Because of that legitimacy, TAC succeeded in pressuring the government to make antiretrovirals available in the South African public sector health system.
The legacy of the People With AIDS agenda in the United States includes changes in clinical research, drug development, and the regulation of medicines. Once effective treatment became available—partly as a result of these changes—the global legacy of the People With AIDS agenda was to persistently reduce seemingly complex policy debates to their simple essence: should people living with HIV die of a treatable disease to support other competing priorities? Because activists helped simplify and then answer the myriad forms of that question, millions of people lived who otherwise would have died.
Public health practitioners are trained to think from the point of view of defending communities, rather than from that of individuals with a disease. Indeed, many of us would recognize in ourselves the impulse to, as Campbell put it, "adopt a strident tone … to compel the complacent to realize how important [the problem] really is." But the risk of social death is not simply an ethical peril. It is also a practical challenge: if a diagnosis puts people at risk for social death, that risk becomes a powerful incentive to avoid diagnosis. By contrast, the earliest AIDS activists offered an affirmative strategy of responding directly to a health threat while resisting social death.
The first people with AIDS did not deny the seriousness of their disease. But if the threat of death became the defining feature of their existence, social death would soon follow. By organizing themselves, and then organizing their communities around them, the earliest AIDS activists remained important and, ultimately, honored people within their communities. Their ideas and actions, and those of the activist movements they inspired, helped to eventually make AIDS a fact of life rather than a synonym for death.
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