Thinking about AIDS and Stigma: A Psychologist's Perspective

Mann J. , “Preface,” The Impact of Homophobia and Other Social Biases on AIDS (San Francisco: Public Media Center, 1996): at 3, available at <http://www.publicmediacenter.org/pdfs/stigma.html>.

The category of “people with HIV” includes people diagnosed with AIDS as well as those who are asymptomatic. In the present article, I generally frame the discussion in terms of people with HIV The exception is in my discussion of some public opinion data and some specific incidents that refer specifically to people with AIDS.

Herek G.M. , “Illness, Stigma, and AIDS,” in Costa E.T. Jr. , and VandenBos G.R. , eds., Psychological Aspects of Serious Illness: Chronic Conditions, Fatal Diseases, and Clinical Care (Washington, D.C.: American Psychological Association, 1990): 107–50; Herek G.M. and Glunt E.K. , “An Epidemic of Stigma: Public Reactions to AIDS,” American Psychologist, 43 (1988): 886–91; Chesney M.A. and Smith A.W. , “Critical Delays in HIV Testing and Care: The Potential Role of Stigma,” American Behavioral Scientist, 42 (1999): 1162–74.

My discussion provides only a brief and somewhat idiosyncratic introduction to social psychological thinking about stigma and HIV Readers who desire additional information about stigma in general will find the following sources helpful: Goffman E. , Stigma: Notes on the Management of Spoiled Identity (Englewood Cliffs, New Jersey: Prentice-Hall, 1963); Crocker J. Major B. , and Steele C. , “Social Stigma,” in Gilbert D.T. Fiske S.T. , and Lindzey G. , eds., The Handbook of Social Psychology, vol. 2, 4th ed. (Boston: McGraw-Hill, 1998): 504–53; Jones E.E. , Social Stigma: The Psychology of Marked Relationships (New York: W.H. Freeman, 1984); Link B.G. and Phelan J.C. , “Conceptualizing Stigma,” Annual Review of Sociology, 27 (2001): 363–85. For more detailed discussions of HIV-related stigma, see the papers in Herek G.M. , ed., “AIDS and Stigma,” a thematic issue of American Behavioral Scientist, 42, no. 7 (1999).

The source for my comments about the etymology of stigma is the Oxford English Dictionary (1971 edition).

Oxford English Dictionary (1971): at 954.

Goffman , supra note 4.

Duckitt J.H. , The Social Psychology of Prejudice (New York: Praeger, 1992): at 7–24.

Id. at 9.

Ajzen I. and Fishbein M. , Understanding Attitudes and Predicting Social Behavior (Englewood Cliffs, New Jersey: Prentice-Hall, 1980); Eagly A.H. and Chaiken S. , eds., The Psychology of Attitudes (Fort Worth, Texas: Harcourt Brace Jovanovich, 1993); Ajzen I. , “Nature and Operation of Attitudes,” Annual Review of Psychology, 52 (2001): 27–58; Fishbein M. and Ajzen I. , Belief, Attitude, Intention, and Behavior (Reading, Massachusetts: Addison-Wesley, 1975).

Eagly and Chaiken , supra note 11; Ajzen and Fishbein , supra note 11.

Ajzen and Fishbein , supra note 11; Heider F. , The Psychology of Interpersonal Relations (New York: John Wiley & Sons, 1958).

Scambler G. , Epilepsy (London: Routledge, 1989): at 56–57. I am grateful to Scott Burris for making me aware of Scambler's work.

Herek G.M. , “AIDS and Stigma: A Conceptual Framework and Research Agenda,” AIDS and Public Policy Journal, 13, no. 1 (1998): 36–47.

Mann J.M. Tarantola D.J.M. , and Netter T.W. , eds., AIDS in the World (Cambridge: Harvard University Press, 1992); Panos Institute, The 3rd Epidemic: Repercussions of the Fear of AIDS (Budapest: Panos Institute, 1990); Aggleton P. , HIV and AIDS-Related Somatization, Discrimination and Denial: Research Studies From Uganda and India (Geneva: UNAIDS, 2000); Goldin C.S. , “Stigmatization and AIDS: Critical Issues in Public Health,” Social Science and Medicine, 39 (1994): 1359–66; Malcolm A. “HIV-Related Stigmatization and Discrimination: Its Forms and Contexts,” Critical Public Health, 8 (1998): 347–70.

For more extensive discussion of how AIDS-related stigma has been enacted, see Herek , supra note 3; Herek and Glunt , supra note 3; National Association of People with AIDS [NAPWA], HIV in America: A Profile of the Challenges Facing Americans Living with HIV (Washington, D.C.: NAPWA, 1992).

Gielen A.C. , “Women's Disclosure of HIV Status: Experiences of Mistreatment and Violence in an Urban Setting,” Women and Health, 25, no. 3 (1997): 19–31; Klitzman R. , Being Positive: The Lives of Men and Women with HIV (Chicago: Ivan R. Dee, 1997); Zierler S. , “Violence Victimization After HIV Infection in a U.S. Probability Sample of Adult Patients in Primary Care,” American Journal of Public Health, 90 (2000): 208–15; NAPWA, supra note 17; Page S. , “Accommodating Persons with AIDS: Acceptance and Rejection in Rental Situations,” Journal of Applied Social Psychology, 29 (1999): 261–70; Fife B.L. and Wright E.R. , “The Dimensionality of Stigma: A Comparison of Its Impact on the Self of Persons with HIV/AIDS and Cancer,” Journal of Health and Social Behavior, 41 (2000): 50–67.

Gostin L.O. , “The AIDS Litigation Project: A National Review of Court and Human Rights Commission Decisions, Part I: The Social Impact of AIDS,” JAMA, 263 (1990): 1961–70; Gostin L.O. , “The AIDS Litigation Project: A National Review of Court and Human Rights Commission Decisions, Part II: Discrimination,” JAMA, 263 (1990): 2086–93; Gostin L.O. and Webber D.W. , “The AIDS Litigation Project: HIV/AIDS in the Courts in the 1990s, Part 1,” AIDS and Public Policy Journal, 12 (1997): 105–21; Gostin L.O. and Webber D. , “The AIDS Litigation Project: HIV/AIDS in the Courts in the 1990s, Part 2,” AIDS and Public Policy Journal, 13 (1998): 3–19.

Blake S.M. and Arkin E.B. , AIDS Information Monitor: A Summary of National Public Opinion Surveys on AIDS: 1983 Through 1986 (Burlingame, California: Down There Press, 1988); Singer E. and Rogers T.F. , “Public Opinion and AIDS,” AIDS and Public Policy Journal, 1 (1986): 1–13; Rogers T.F. Singer E. , and Imperio J. , “AIDS: An Update,” Public Opinion Quarterly, 57 (1993): 92–114; Herek G.M. and Glunt E.K. , “AIDS-Related Attitudes in the United States: A Preliminary Conceptualization,” The Journal of Sex Research, 28 (1991): 99–123; Herek , supra note 3.

Herek G.M. Capitanio J.P. , and Widaman K.F. , “HIV-Related Stigma and Knowledge in the United States: Prevalence and Trends, 1991–1999,” American Journal of Public Health, 92 (2002): 371–77, at 372–75.

Id. at 372.

Weiner B. , “AIDS from an Attributional Perspective,” in Pryor J.B. and Reeder G.D. , eds., The Social Psychology of HIV Infection (Hillsdale, New Jersey: Lawrence Erlbaum, 1993): 287–302.

Herek Capitanio , and Widaman , supra note 21, at 373.

Lentine D.A. , “HIV-Related Knowledge and Stigma — United States, 2000,” Morbidity and Mortality Weekly Report, 49 (2000): 1062–64.

For more findings from the survey, see Herek Capitanio , and Widaman , supra note 21. See also Capitanio J.P. and Herek G.M. , “AIDS-Related Stigma and Attitudes Toward Injecting Drug Users Among Black and White Americans,” American Behavioral Scientist, 42 (1999): 1148–61; Herek G.M. and Capitanio J.P. , “AIDS Stigma and Sexual Prejudice,” American Behavioral Scientist, 42 (1999): 1130–47.

In his classic analysis of stigma, for example, Goffman paid relatively little notice to how a particular characteristic or condition comes to be stigmatized in the first place, taking this to be largely a given, a part of the social structure. Instead, he focused mainly on how stigma affects face-to-face encounters.

E.g., Goffman , supra note 4; Jones , supra note 4.

Weiner , supra note 23.

E.g., Capitanio and Herek , supra note 26; Herek and Capitanio , supra note 26.

E.g., Herek and Capitanio , supra note 26.

Blake and Arkin , supra note 20.

Goffman , supra note 4; Jones , Supra note 4.

Herek , supra note 3.

Herek Capitanio , and Widaman , supra note 21. For analyses of how beliefs about casual contact interact with prejudice against people with HIV, see Herek G.M. , “The Social Construction of Attitudes: Functional Consensus and Divergence in the U.S. Public's Reactions to AIDS,” in Maio G.R. and Olson J.M. , eds., Why We Evaluate: Functions of Attitudes (Mahwah, New Jersey: Lawrence Erlbaum, 2000): 325–64; Herek G.M. and Capitanio J.P. , “Symbolic Prejudice or Fear of Infection? A Functional Analysis of AIDS-Related Stigma Among Heterosexual Adults,” Basic and Applied Social Psychology, 20 (1998): 230–241; Herek and Capitanio , supra note 26.

Goffman , supra note 4, at 4.

Id.; Jones , supra note 4.

Goffman , supra note 4, at 28.

Id. at 4.

Klitzman , supra note 18.

Goffman , supra note 4, at 28–31.

Poindexter C.C. and Linsk N.L. , “HIV-Related Stigma in a Sample of HIV-Affected Older Female African American Caregivers,” Social Work, 44 (1999): 46–61; van der Straten A. , “Managing HIV Among Serodiscordant Heterosexual Couples: Serostatus, Stigma and Sex,” AIDS Care, 10 (1998): 533–48; Snyder M. Omoto A.M. , and Crain A.L. , “Punished for Their Good Deeds: Stigmatization of AIDS Volunteers,” American Behavioral Scientist, 42 (1999): 1175–92.

Herek , supra note 35; Herek and Capitanio , supra note 35; Pryor J.B. Reeder G.D. , and Landau S. , “A Social-Psychological Analysis of HIV-Related Stigma: A Two-Factor Theory,” American Behavioral Scientist, 42 (1999): 1193–211.

See generally Sontag S. , Illness as Metaphor (New York: Farrar, Straus and Giroux, 1978); Sontag S. , AIDS and Its Metaphors (New York: Farrar, Straus and Giroux, 1989).

Goldin , supra note 16; Malcolm , supra note 16; Mann Tarantola , and Netter , supra note 16. Panos Institute, supra note 16; Sabatier R. , Blaming Others: Prejudice, Race and Worldwide AIDS (Philadelphia: New Society, 1988).

Herek , supra note 35; Herek and Capitanio , supra note 26.

Herek and Capitanio , supra note 26.

Capitanio and Herek , supra note 26; Fullilove M.T. and Fullilove R.E.I. , “Stigma as an Obstacle to AIDS Action,” American Behavioral Scientist, 42 (1999): 1117–29.

For a review, see Brown L. Trujillo L. , and Macintyre K. , Interventions to Reduce HIV/AIDS Stigma: What Have We Learned? (New York: Population Council, 2001).

The total 1999 sample included 666 respondents who were recontacted after participating in a similar 1997 survey as well as 669 new respondents. Some data from the 1999 interviews with the recontacted participants have been reported elsewhere ( Herek Capitanio , and Widaman , supra note 21). Respondents were included in the present analyses only if they identified themselves as heterosexual in a screening question. Because of missing data for some variables, the sample size for the correlation coefficients shown in Table 1 ranged from 1, 197 to 1, 258. For the regression analysis, the sample size was 1, 185. Details about the sampling methods, response rates, interview procedures, and other aspects of the methodology, including the wording of individual items, are reported in Herek Capitanio , and Widaman , supra note 21; Herek G.M. , “Gender Gaps in Public Opinion About Lesbians and Gay Men,” Public Opinion Quarterly, 66 (2002): 40–66; Herek G.M. , “Heterosexuals' Attitudes Toward Bisexual Men and Women in the United States,” Journal of Sex Research, 39 (2002): In press.

This index was computed by counting the number of stigmatizing responses each person gave to nine different items designed to measure various aspects of AIDS-related stigma. The items assessed the extent to which respondents felt angry, disgusted, and afraid of people with AIDS; would avoid interacting with a person with AIDS in an office; would have their child avoid an HIV-infected schoolmate; would refrain from shopping at a neighborhood grocery store whose owner had AIDS; supported quarantining people with AIDS; believed that the names of those with AIDS should be made public; and believed that those who were infected through sex or drug use got what they deserved. More information about this measure is reported in Herek Capitanio , and Widaman , supra note 21.

The variables listed in Table 1 were derived from a series of exploratory analyses with a larger number of variables. The variables of marital status, number of children, race, and political party affiliation displayed negligible correlations with AIDS stigma and were dropped from the analysis. A “negligible” correlation was operationally defined as r <0.10 (i.e., the variable shared less than 1 percent of variance with the AIDS stigma index).

The coefficients can potentially range from −1.00 to +1.00, with values near zero indicating little or no association between the two variables and values near −1.00 or +1.00 indicating a strong association. The sign of the coefficient indicates the direction of the relationship. A positive coefficient means that as values of one variable increased, values of the other also increased; a negative coefficient means that as values of one variable increased, values of the other decreased.

See generally Adorno T.W. , The Authoritarian Personality (New York: Harper & Brothers, 1950); Altemeyer B. , Enemies of Freedom: Understanding Right-Wing Authoritarianism (San Francisco: Jossey-Bass, 1988).

A correlation coefficient less than r = 0.14 means that the variable shares only about 1 percent of its variance with AIDS stigma scores. These associations are statistically significant mainly because the sample for the survey was relatively large, but they have little substantive importance in the present analysis.

Like correlation coefficients, values for β can potentially range from −1.00 to +1.00, with values near zero indicating that the variable has little or no predictive power and values near −1.00 or +1.00 indicating that the variable helps to explain a substantial amount of variation in AIDS stigma scores. As with correlation coefficients, the sign of β (positive or negative) indicates the direction of the relationship (see note 54, supra).

Rosenberg C.E. , The Cholera Years: The United States in 1832, 1849, and 1866 (Chicago: University of Chicago Press, 1987).

Id. at 13−98.

Id. at 5, 101–225. See also Rosenberg C.E. , “Disease and Social Order in America: Perceptions and Expectations,” in Fee E. and Fox D.M. , eds., AIDS: The Burdens of History (Berkeley: University of California Press, 1988): 12–32.

Herek Capitanio , and Widaman , supra note 21.

Herek G.M. , “The HIV Epidemic and Public Attitudes Toward Lesbians and Gay Men,” in Levine M.P. Nardi P. , and Gagnon J. , eds., In Changing Times: Gay Men and Lesbians Encounter HIV/AIDS (Chicago: University of Chicago Press, 1997): 191–218; Herek and Capitanio , supra note 26.

Herek and Capitanio , supra note 26, at 1140–42.

See generally Thomas S.B. and Quinn S.C. , “The Tuskegee Syphilis Study, 1932 to 1972: Implications for HIV Education and AIDS Risk Education Programs in the Black Community,” American Journal of Public Health, 81 (1991): 1498–505; Turner P.A. , I Heard It Through the Grapevine: Rumor in African-American Culture (Berkeley: University of California Press, 1993).

Herek G.M. and Capitanio J.P. , “Conspiracies, Contagion, and Compassion: Trust and Public Reactions to AIDS,” AIDS Education and Prevention, 6 (1994): 365–75, at 370–72.

Cole S.W. , “Elevated Physical Health Risk Among Gay Men Who Conceal Their Homosexual Identity,” Health Psychology, 15 (1996): 243–51; Cole S.W. Kemeny M.E. , and Taylor S.E. , “Social Identity and Physical Health: Accelerated HIV Progression in Rejection-Sensitive Gay Men,” Journal of Personality and Social Psychology, 72 (1997): 320–35; Herek G.M. , “Why Tell If You're Not Asked? Self-Disclosure, Intergroup Contact, and Heterosexuals' Attitudes Toward Lesbians and Gay Men,” in Herek G.M. Jobe J. , and Carney R. , eds., Out in Force: Sexual Orientation and the Military (Chicago: University of Chicago Press, 1996): 197–225.

Allport G.W. , The Nature of Prejudice (Cambridge, Massachusetts: Addison-Wesley, 1954): at 261–82.

Pettigrew T.F. and Tropp L.R. , “Does Intergroup Contact Reduce Prejudice: Recent Meta-Analytic Findings,” in Oskamp S. , ed., Reducing Prejudice and Discrimination (Mahwah, New Jersey: Lawrence Erlbaum, 2000): 93–114.

Herek G.M. and Capitanio J.P. , “‘Some of My Best Friends’: Intergroup Contact, Concealable Stigma, and Heterosexuals' Attitudes Toward Gay Men and Lesbians,” Personality and Social Psychology Bulletin, 22 (1996): 412–24; Herek G.M. and Glunt E.K. , “Interpersonal Contact and Heterosexuals' Attitudes Toward Gay Men: Results from a National Survey,” Journal of Sex Research, 30 (1993): 239–44; Schneider W. and Lewis I.A. “The Straight Story on Homosexuality and Gay Rights,” Public Opinion, February-March 1984, at 16–20, 59–60.

Gerbert B. Sumser J. , and Maguire B.T. , “The Impact of Who You Know and Where You Live on Opinions About AIDS and Health Care,” Social Science and Medicine, 32 (1991): 677–81; Henry K. Campbell S. , and Willenbring K. , “A Cross-Sectional Analysis of Variables Impacting on AIDS-Related Knowledge, Attitudes, and Behaviors Among Employees of a Minnesota Teaching Hospital,” AIDS Education and Prevention, 2 (1990): 36–47; Herek G.M. and Capitanio J.P. , “AIDS Stigma and Contact with Persons with AIDS: The Effects of Personal and Vicarious Contact,” Journal of Applied Social Psychology, 27 (1997): 1–36; Zimet G.D. , “Attitudes of Teenagers Who Know Someone with AIDS,” Psychological Reports, 70 (1992): 1169–70; Zimet G.D. , “Knowing Someone with AIDS: The Impact on Adolescents,” Journal of Pediatric Psychology, 16 (1991): 287–94.

“From Hero to Crusader,” Newsweek, November 18, 1991, at 69.

Montville L. , “Like One of the Family,” Sports Illustrated, November 18, 1991, 44–45.

Kalichman S.C. , “Earvin ‘Magic’ Johnson's HIV Serostatus Disclosure: Effects on Men's Perceptions of AIDS,” Journal of Consulting and Clinical Psychology, 61 (1993): 887–91

Dannemeyer W. , Shadow in the Land: Homosexuality in America (San Francisco: Ignatius Press, 1989): at 217–23. Allan Brandt's study of the history of venereal disease in the United States probably offers a better model for symbolic AIDS stigma than Rosenberg's history of cholera. See Brandt A.M. , No Magic Bullet: A Social History of Venereal Disease in the United States Since 1880 (New York: Oxford University Press, 1987).

Dannemeyer , supra note 74; Cameron P. , Exposing the AIDS Scandal (Lafayette, Louisiana: Huntington House, 1988). See also Bailey W.A. , “The Importance of HIV Prevention Programming to the Lesbian and Gay Community,” in Herek G.M. and Greene B. , eds., AIDS, Identity, and Community: The HIV Epidemic and Lesbians and Gay Men (Thousand Oaks, California: Sage, 1995): 210–25.

Stevenson M.R. , “Promoting Tolerance for Homosexuality: An Evaluation of Intervention Strategies,” The Journal of Sex Research, 25 (1988): 500–11; Herek G.M. , “Stigma, Prejudice, and Violence Against Lesbians and Gay Men,” in Gonsiorek J.C. and Weinrich J.D. , eds., Homosexuality: Research Implications for Public Policy (Newbury Park, California: Sage, 1991): 60–80.

See generally Stevenson , supra note 76; Herek , supra note 76.

See id.

Herek and Capitanio , supra note 69.

Pettigrew and Tropp , supra note 68.

The stigma associated with injecting drug use is quite different from that associated with homosexuality. The American public shows growing acceptance of its gay and lesbian members and is increasingly willing to support their civil rights and liberties in many areas. Whereas homosexuality is widely considered to be irrelevant to an individual's ability to function effectively in society, injecting drug use is generally considered a social evil and IDUs are regarded very negatively. See Capitanio and Herek , supra note 26.

See generally Burris S. , “Studying the Legal Management of HIV-Related Stigma,” American Behavioral Scientist, 42 (1999): 1229–43.

Burris , supra note 82, at 1235. Regarding ballot initiatives that would have severely curtailed the civil liberties of people with HIV, see Krieger N. and Lashof J.C. , “AIDS, Policy Analysis, and the Electorate: The Role of Schools of Public Health,” American Journal of Public Health, 78 (1988): 411–15; Herek G.M. and Glunt E.K. , “Public Attitudes Toward AIDS-Related Issues in the United States,” in Pryor J.B. and Reeder G.D. , eds., The Social Psychology of HIV Infection (Hillsdale, New Jersey: Lawrence Erlbaum, 1993): 229–61.

See, e.g., “Interventions to Prevent HIV Risk Behaviors,” NIH Consensus Statement, 15, no. 2 (1997): 1–41; Miller H.G. Turner C.F. , and Moses L.E. , eds., AIDS: The Second Decade (Washington, D.C.: National Academy Press, 1990).

Burris , supra note 83; Bailey , supra note 75; Heredia C. , “S.F.'s HIV Fight May Be Too Sexy: Feds to Review City's Prevention Programs,” San Francisco Chronicle, November 16, 2001, at A25; Ornstein C. , “Explicit Ads Prompt a Review of U.S. AIDS Prevention Grants,” Los Angeles Times, January 4, 2002, at A1.

“Interventions to Prevent HIV Risk Behaviors,” supra note 84; Des Jarlais D.C. , “Research, Politics, and Needle Exchange,” American Journal of Public Health, 90 (2000): 1392–94.

For example, see Epstein S. , Impure Science: AIDS, Activism, and the Politics of Knowledge (Berkeley: University of California Press, 1996).

Parker R.G. , “Sexuality, Culture, and Power in HIV/AIDS Research,” Annual Review of Anthropology, 30 (2001): 163–79.

Mann , supra note 1, at 3.