HIV/AIDS-related Stigma and Discrimination: A Conceptual Framework and an Agenda for Action
Richard Parker and Peter Aggleton with Kathy Attawell, Julie Pulerwitz, and Lisanne Brown
We would like to acknowledge the contribution of Anne Malcolm (Sydney, Australia) and Miriam Maluwa (UNAIDS, Geneva) to our thinking about these issues. Anne undertook one of the first reviews of the forms and determinants of HIV/AIDS-related stigma, discrimination, and denial for WHO/GPA and UNAIDS, elements of which have been utilized here.
This study was supported by the Horizons Program, which is implemented by the Population Council in collaboration with the International Center for Research on Women, International HIV/AIDS Alliance, Program for Appropriate Technology in Health, the University of Alabama at Birmingham, Tulane University, Family Health International, and Johns Hopkins University. Horizons is funded by the U.S. Agency for International Development, under the terms of HRNA-00-97-00012-00. The opinions expressed herein are those of the authors and do not necessarily reflect the views of the U.S. Agency for International Development. Published in May 2002. The Population Council is an international, nonprofit, nongovernmental institution that seeks to improve the wellbeing and reproductive health of current and future generations around the world and to help achieve a humane, equitable, and sustainable balance between people and resources. The Council conducts biomedical, social science, and public health research and helps build research capacities in developing countries. Established in 1952, the Council is governed by an international board of trustees. Its New York headquarters supports a global network of regional and country offices. Copyright © 2002 The Population Council Inc.
Table of Contents
Introduction Analyzing Stigma and Discrimination
What are the sources of stigmatization and discrimination? How are stigma and discrimination manifested?
1 1 1 4
Developing a New Conceptual Framework
Why do we need a new way of thinking?
9 9 11 11 13
Identifying an Agenda for Research and Intervention
What are the implications for research? What are the implications for interventions?
In 1987, the late Jonathan Mann, then director of the WHO Global Programme on AIDS, identified three phases of the HIV/AIDS epidemic: the epidemic of HIV, the epidemic of AIDS, and the epidemic of stigma, discrimination, and denial. He noted that the third phase is “as central to the global AIDS challenge as the disease itself” (Mann 1987). Despite international efforts to tackle HIV/AIDS since then, stigma and discrimination (S&D) remain among the most poorly understood aspects of the epidemic. As recently as 2000, Peter Piot, executive director of UNAIDS, identified stigma as a “continuing challenge” that prevents concerted action at community, national, and global levels (Piot 2000). This poor understanding is due in part to the complexity and diversity of S&D, but also in part to limitations in current thinking within the field and the inadequacy of available theoretical and methodological tools (USAID 2000). The purpose of this paper is to propose a new conceptual framework to help inform thinking about the processes of S&D,1 about the way these processes relate to HIV/AIDS, and about potential interventions to address S&D and minimize their impact. To do this, the paper: Analyzes the sources of S&D, the ways in which HIV/AIDS-related S&D manifests itself, and the contexts in which HIV/AIDS-related S&D take place. Highlights the limitations of current thinking and argues that S&D need to be understood as social rather than individual processes. Identifies an agenda for research and intervention.