Joe Wright, MD

Disclosures

Am J Public Health. 2013;3:1788-1798. 

In This Article

Abstract and Introduction

Abstract

The invention of AIDS activism came soon after the AIDS epidemic emerged in gay communities in the United States in the early 1980s. AIDS activism by and for people with AIDS, distinct from gay activism responding to the threat of AIDS on the behalf of the whole community, started as a way of resisting the phenomenon of social death. Social death, in which people are considered "as good as dead" and denied roles in community life, posed a unique threat to people with AIDS. An organized political response to AIDS began among gay men with AIDS in San Francisco, California, and New York, New York, formalized in a foundational document later called the Denver Principles. The ideas and language of these first people with AIDS influenced later AIDS activism movements. They also help to illustrate the importance of considering an epidemic from the point of view of people with the disease.

Introduction

Almost since the beginning of the AIDS epidemic, people living with HIV/AIDS have demanded involvement in local, domestic, and international public health policymaking. More recently, a series of declarations signed by world governments affirm the principle of their participation, if not always the practice.[1] People living with HIV/AIDS and their allies have created health activist movements, both local and global, a number of which have persuaded governments and societies to change their responses to the AIDS epidemic.

This global movement emerged originally from the politics of urban gay communities in North America in the early 1980s. Gay men living with a disease of unknown etiology and sobering mortality faced not only a threat to their health, and the stigma that soon accompanied it, but a phenomenon sociologists in other settings have described as "social death." Undiagnosed gay men also faced the stigma of the disease, and gay community political leaders soon began trying to combat the problem of stigma on behalf of the whole community. But only people with AIDS faced the problem of social death, and that challenge caused gay men with AIDS to see their agenda as distinct from that of the gay men around them. In the process, they invented the idea of AIDS activism by and for people with AIDS.

Physiological death is the process by which the delivery of oxygen to the body stops and the body's organs cease to function. Historically, social death has most often followed physiological death, with the social aspect of death marked by rites like funerals and wakes. But if other people consider someone essentially dead, or "as good as dead," this creates social death in advance of biological death.[2] Medieval funeral rituals for people with the disease then known as leprosy (now Hansen's disease) created and enforced the social death of the afflicted person, while also mourning it.[3] Families' relationships to relatives with dementia sometimes offer a modern equivalent.[4] More subtly, when others make people with life-threatening illness into objects of pity, define their social existence by their predicted death, and ignore other aspects of their personhood, they create the conditions for social death that occurs before biological death.

Much has been written about stigma in the HIV research literature. Social death is not the same as stigma, which can be described in political terms as a mechanism of social control with the effect of enforcing social order.[5] More narrowly, stigma is created by a collectively held belief that a given attribute "spoils" a person.[6] If stigma means that a person is viewed as "not quite human," social death means that a person is viewed as "not quite alive." Social death is a specific response to either the occurrence or the anticipation of death. Before biological death takes place, social death may sometimes be imposed on a person thought to be dying; at other times, dying people themselves might create it.[7] Some cultures simply avoid discussion of life-threatening illness as a means of preventing social death.[8] Premature social death can be hastened by institutionalization, poverty, or stigma, which can push the socially dead into "zones of social abandonment"—physically segregated spaces in which the socially dead await their biological deaths.[9]

Although social death and stigma are distinct, the two can become tightly intertwined. Specifically, if living people are so despised as to be wished dead, the prediction of their death is not met with what death scholars describe as "anticipatory grief," but rather with anticipatory relief. But the distinction between stigma and social death is important, and now more than ever in the era of effective treatment. If a community believes that HIV is a mark of death, people living with HIV/AIDS will be at risk for social death. On the other hand, if HIV infection is a survivable mark of sin, stigma may still attach to the diagnosis, distinct from the isolation that comes from the anticipation of death. A sex worker on an effective antiretroviral regimen occupies a different position in her community than someone irrevocably marked for death—still precarious, but distinct.

The invention of AIDS activism by and for people living with HIV/AIDS started with the problem of social death, and also from a related tension in the response to AIDS. If the dangers of a medical threat are understated, a community may not mobilize to respond to it. But if mortality becomes the defining feature of a diagnosis, the people with the diagnosis risk social death before biological death. This was part of the social and political environment that caused gay men with AIDS to organize as people with AIDS, rather than acting only as gay men within broader gay community responses to AIDS. Although their initial political activity all took place within the gay community, it eventually influenced the political concepts and tactics of people living with HIV/AIDS around the world, many of whom later faced similar challenges in their own communities.

The movement of people with AIDS had its formal foundational moment at a 1983 conference in Denver, Colorado, with a manifesto later known as the Denver Principles. Described later as "the Magna Carta of AIDS activism,"[10] the Denver Principles called for a new relationship between people with AIDS, their health care providers, and the society around them.[11] Bobbi Campbell, from San Francisco, California, and Michael Callen, from New York, New York, were the de facto leaders of the small group of gay men with AIDS at the conference, and the two men wrote the document. The influence of their ideas emerged later in advocacy by people living with HIV/AIDS around the world,[12] first in formal associations of people with AIDS and then by people living with HIV/AIDS in roles within broader AIDS activist movements.

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