The Beginnings of Activism by and for People with AIDS
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⏐ PUBLIC HEALTH THEN AND NOW ⏐ The Beginningsi i of f Activism A ti i by b and d for f PPeople l With AIDS AIDS | Joe Wright, MD The invention of AIDS activism came soon after the AIDS epidemic emerged in gay communities in invented the idea of AIDS activ- the United States in the early 1980s. AIDS activism by and for people with AIDS, distinct from gay ism by and for people with AIDS. activism responding to the threat of AIDS on the behalf of the whole community, started as a way of Physiological death is the pro- resisting the phenomenon of social death. Social death, in which people are considered “as good as cess by which the delivery of oxy- dead” and denied roles in community life, posed a unique threat to people with AIDS. An organized gen to the body stops and the political response to AIDS began among gay men with AIDS in San Francisco, California, and New York, body’s organs cease to function. New York, formalized in a foundational document later called the Denver Principles. The ideas and Historically, social death has most language of these first people with AIDS influenced later AIDS activism movements. They also help often followed physiological to illustrate the importance of considering an epidemic from the point of view of people with the dis- death, with the social aspect of ease. (Am J Public Health. 2013;103:1788–1798. doi:10.2105/AJPH.2013.301381) death marked by rites like funer- als and wakes. But if other people consider someone essentially ALMOST SINCE THE BEGINNING America in the early 1980s. Gay dead, or “as good as dead,” this of the AIDS epidemic, people liv- men living with a disease of creates social death in advance of ing with HIV/AIDS have de- unknown etiology and sobering biological death.2 Medieval manded involvement in local, do- mortality faced not only a threat funeral rituals for people with the mestic, and international public to their health, and the stigma disease then known as leprosy health policymaking. More re- that soon accompanied it, but a (now Hansen’s disease) created cently, a series of declarations phenomenon sociologists in other and enforced the social death of signed by world governments af- settings have described as “social the afflicted person, while also firm the principle of their partici- death.” Undiagnosed gay men mourning it.3 Families’ relation- pation, if not always the practice.1 also faced the stigma of the dis- ships to relatives with dementia People living with HIV/AIDS and ease, and gay community political sometimes offer a modern equiv- their allies have created health leaders soon began trying to com- alent.4 More subtly, when others activist movements, both local bat the problem of stigma on make people with life-threatening and global, a number of which behalf of the whole community. illness into objects of pity, define have persuaded governments and But only people with AIDS faced their social existence by their pre- societies to change their re- the problem of social death, and dicted death, and ignore other sponses to the AIDS epidemic. that challenge caused gay men aspects of their personhood, they This global movement emerged with AIDS to see their agenda as create the conditions for social originally from the politics of distinct from that of the gay men death that occurs before biologi- urban gay communities in North around them. In the process, they cal death. 1788 | Public Health Then and Now | Peer Reviewed | Wright American Journal of Public Health | October 2013, Vol 103, No. 10 ⏐ PUBLIC HEALTH THEN AND NOW ⏐ Much has been written about distinct from the isolation that two men wrote the document. stigma in the HIV research litera- comes from the anticipation of The influence of their ideas ture. Social death is not the same death. A sex worker on an effec- emerged later in advocacy by as stigma, which can be described tive antiretroviral regimen occu- people living with HIV/AIDS in political terms as a mechanism pies a different position in her around the world,12 first in formal of social control with the effect of community than someone irrevo- associations of people with AIDS enforcing social order.5 More nar- cably marked for death—still and then by people living with rowly, stigma is created by a col- precarious, but distinct. HIV/AIDS in roles within lectively held belief that a given The invention of AIDS activ- broader AIDS activist movements. attribute “spoils” a person.6 If ism by and for people living with stigma means that a person is HIV/AIDS started with the prob- BOBBI CAMPBELL: viewed as “not quite human,” lem of social death, and also MAKING THE NEW social death means that a person from a related tension in the DISEASE VISIBLE is viewed as “not quite alive.” response to AIDS. If the dangers Social death is a specific response of a medical threat are under- In the 1970s, a new kind of to either the occurrence or the stated, a community may not public gay community had anticipation of death. Before bio- mobilize to respond to it. But if emerged in and around the Cas- logical death takes place, social mortality becomes the defining tro District in San Francisco.13 death may sometimes be imposed feature of a diagnosis, the people In 1975, a nurse named Bobbi on a person thought to be dying; with the diagnosis risk social Campbell moved from Seattle, at other times, dying people death before biological death. themselves might create it.7 Some This was part of the social and cultures simply avoid discussion political environment that caused of life-threatening illness as a gay men with AIDS to organize The invention of AIDS activism by and for means of preventing social as people with AIDS, rather people living with HIV/AIDS started with the death.8 Premature social death than acting only as gay men problem of social death, and also from a can be hastened by institutional- within broader gay community “ ization, poverty, or stigma, which responses to AIDS. Although related tension in the response to AIDS can push the socially dead into their initial political activity all “zones of social abandonment”— took place within the gay com- physically segregated spaces in munity, it eventually influenced Washington, got a job in a ” which the socially dead await the political concepts and tactics hospital near the Castro, and their biological deaths.9 of people living with HIV/AIDS immersed himself in the political Although social death and around the world, many of and social life of the community. stigma are distinct, the two can whom later faced similar chal- By 1981, he had enrolled in the become tightly intertwined. Spe- lenges in their own communities. nurse practitioner training pro- cifically, if living people are so The movement of people with gram at the University of Califor- despised as to be wished dead, AIDS had its formal foundational nia, San Francisco, intending to the prediction of their death is moment at a 1983 conference in focus on health care for the les- not met with what death scholars Denver, Colorado, with a mani- bian and gay community.14 describe as “anticipatory grief,” festo later known as the Denver His opportunity to promote but rather with anticipatory Principles. Described later as “the health in that community came relief. But the distinction Magna Carta of AIDS activism,”10 sooner than he expected, and at between stigma and social death the Denver Principles called for a an unexpected personal cost. On is important, and now more than new relationship between people October 8, 1981, four months ever in the era of effective treat- with AIDS, their health care pro- after the medical literature’s first ment. If a community believes viders, and the society around description of a new syndrome of that HIV is a mark of death, peo- them.11 Bobbi Campbell, from San immune deficiency in young gay ple living with HIV/AIDS will be Francisco, California, and Michael men, Marcus Conant, a dermatol- at risk for social death. On the Callen, from New York, New York, ogist who would soon become a other hand, if HIV infection is a were the de facto leaders of the leader in responding to the new survivable mark of sin, stigma small group of gay men with disease, diagnosed Bobbi Camp- may still attach to the diagnosis, AIDS at the conference, and the bell with Kaposi’s sarcoma (KS).15 October 2013, Vol 103, No. 10 | American Journal of Public Health Wright | Peer Reviewed | Public Health Then and Now | 1789 ⏐ PUBLIC HEALTH THEN AND NOW ⏐ For Campbell, who a fellow Bobbi Campbell . had started with the new syndrome: nurse later described as “politi- to make himself available at the clinic and say, “I want to meet Brothers and sisters, we under- cally astute, … a mover and the patients.” This was not seen stand . that by making us dif- 16 as a friendly gesture by the shaker,” KS was not only a per- ferent, you protect yourself physicians. They thought he sonal challenge but also a profes- from “It.” However, despite our was a little off the wall. They understanding of your need to sional and political opportunity. also thought he was kind of out see yourselves as different, we of control. I think somebody By December, he started writing need to tell you that we are called him hysterical. He was a articles in the San Francisco Senti- not.24 flamboyant gay man.