HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action

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Abstract

Internationally, there has been a recent resurgence of interest in HIV and AIDS-related stigma and discrimination, triggered at least in part by growing recognition that negative social responses to the epidemic remain pervasive even in seriously affected communities. Yet, rarely are existing notions of stigma and discrimination interrogated for their conceptual adequacy and their usefulness in leading to the design of effective programmes and interventions. Taking as its starting point, the classic formulation of stigma as a ‘significantly discrediting’ attribute, but moving beyond this to conceptualize stigma and stigmatization as intimately linked to the reproduction of social difference, this paper offers a new framework by which to understand HIV and AIDS-related stigma and its effects. It so doing, it highlights the manner in which stigma feeds upon, strengthens and reproduces existing inequalities of class, race, gender and sexuality. It highlights the limitations of individualistic modes of stigma alleviation and calls instead for new programmatic approaches in which the resistance of stigmatized individuals and communities is utilized as a resource for social change.

Introduction

For nearly two decades, as countries all over the world have struggled to respond to the HIV/AIDS epidemic, issues of stigma, discrimination and denial have been poorly understood and often marginalized within national and international programmes and responses. In some ways this is paradoxical, since concern about the deleterious effects of HIV and AIDS-related stigma has been voiced since the mid-1980s. In 1987, for example, Jonathan Mann, the founding Director of the World Health Organization's former Global Programme on AIDS, addressed the United Nations General Assembly. In what would soon become a widely accepted conceptualization, he distinguished between three phases of the AIDS epidemic in any community. The first of these phases was the epidemic of HIV infection—an epidemic that typically enters every community silently and unnoticed, and often develops over many years without being widely perceived or understood. The second phase was the epidemic of AIDS itself—the syndrome of infectious diseases that can occur because of HIV infection, but typically only after a delay of a number of years. Finally, he described the third epidemic, potentially the most explosive—the epidemic of social, cultural, economic and political responses to AIDS. This was characterized, above all, by exceptionally high levels of stigma, discrimination and, at times, collective denial that, to use Mann's words, “are as central to the global AIDS challenge as the disease itself” (Mann, 1987).

By 1995, WHO/GPA had been superseded by the Joint United Nations Programme on HIV/AIDS (UNAIDS), bringing together six different United Nations agencies with the explicit goal of recognizing the multiple social dimensions of the epidemic. Yet when Peter Piot, the Executive Director of UNAIDS, addressed the 10th meeting of the agency's Programme Coordinating Board in December of 2000, he turned in his concluding remarks to outline what he described as “the continuing challenge”. Top of his list of “the five most pressing items on this agenda for the world community” was the need for a “renewed effort to combat stigma”. He went on to emphasize, “this calls for an all out effort, by leaders and by each of us personally. Effectively addressing stigma removes what still stands as a roadblock to concerted action, whether at local community, national or global level” (Piot, 2000). More recently still, HIV and AIDS-related stigma and discrimination have been chosen as the theme for the 2002–3 World AIDS Campaign, highlighting the continuing pertinence of these concerns both conceptually and programmatically.

At least in part, our collective inability to more adequately confront stigmatization, discrimination and denial in relation to HIV and AIDS is linked to the relatively limited theoretical and methodological tools available to us. It is important, therefore, to critically evaluate the available literature on the study of stigma and discrimination, both independent of HIV/AIDS and more specifically in relation to it, in order to develop a more adequate conceptual framework for thinking about the nature of these processes, for analyzing the ways in which they work in relation to HIV and AIDS, and for pointing to possible interventions that might minimize their impact and their prejudicial effects in relation to the epidemic.

Section snippets

Stigmatization and discrimination as social processes

Much of what has been written about stigma and discrimination in the context of HIV and AIDS has emphasized the complexity of these phenomena, and has attributed our inability to respond to them more effectively to both their complex nature and their high degree of diversity in different cultural settings. As a recent USAID Concept Paper put it: “The problem is a difficult one, because underlying the apparent universality of the problem of HIV/AIDS-related [stigma, discrimination and denial]

Culture, power and difference

Michel Foucault's work concerning the relation between culture or knowledge, power, and notions of difference is particularly helpful in engaging with these issues. Although Foucault's work was carried out at roughly the same time as Goffman's (mainly during the course of the 1960s and the 1970s) and focused on a number of similar concerns—issues such as mental illness, crime and punishment, and the social construction of deviance more generally—it had quite different cultural, intellectual and

The strategic deployment of stigma

Placing culture, power and difference centre stage with respect to stigma, stigmatization and discrimination opens up new possibilities for research and intervention. But first we need to understand the ways in which these social processes function and operate.

In this respect, notions of symbolic violence (associated, in particular, with the sociological work of Pierre Bourdieu) and hegemony (initially elaborated in Antonio Gramsci's political theory, but more recently employed usefully in

Toward a political economy of stigmatization and social exclusion

Focusing on the relations between culture, power and difference in the determination of stigmatization, encourages an understanding of HIV and AIDS-related stigmatization and discrimination as part of the political economy of social exclusion present in the contemporary world. Greater attention to this broader political economy of social exclusion could potentially help us to think about contexts and functions of HIV and AIDS-related stigma, as well as more adequate strategies for responding to

A new agenda for research and action

To take seriously the notion that stigmatization and discrimination must be understood as social processes linked to the reproduction of inequality and exclusion pushes us to move well beyond the kind of behavioural and psychological models that have tended to dominate work thus far. While the latter have provided some insights and will continue to play a role in a broader research and programmatic response to the epidemic, they need to be complemented by new ways of understanding and

Acknowledgements

The authors wish to acknowledge the support provided by the HORIZONS Project and by UNAIDS for work on the conceptualization of HIV and AIDS-related stigma and discrimination. The ideas expressed here are those of the authors alone, however, and do not necessarily reflect those of either organization or the agencies they represent.

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