December 1, 2006

On World AIDS Day, Stop AIDS Stigma

Posted at 12:14 am (Pacific Time)

Since AIDS was first detected in the United States in 1981, the HIV pandemic has been shadowed by an epidemic of stigma.

In the early years, it wasn’t uncommon for people with AIDS (and those simply suspected of being sick) to lose their jobs and homes and to be shunned by their family members and former friends.

These manifestations of stigma were first directed mainly at gay men, but they soon extended to all people with HIV. Children with AIDS, like Ryan White in Kokomo (IN), were barred from school. The Ray family in Florida, whose three hemophiliac sons were infected with HIV, was burned out of its home.

Those who took care of people with AIDS and HIV — partners and spouses, family members, health care workers, volunteers — experienced what social scientists call a courtesy stigma, a kind of guilt by association.

Entire communities were subjected to stigma. In the epidemic’s early years, Haitians routinely faced HIV-related discrimination in the United States, regardless of their health status. Many gay men feared being quarantined, a concern not as outlandish as it might seem today: Whether or not to separate people with AIDS and members of so-called “risk groups” from the “general population” was a topic of public debate.

Even in 1991, ten years after the first AIDS case was documented in the United States, one third of the respondents to my national telephone survey of American adults believed that people with AIDS should be legally separated from others to protect the public health.

There was even talk of branding people with AIDS. In a 1986 New York Times OP/ED piece, William F. Buckley, Jr., proposed that “Everyone detected with AIDS should be tattooed in the upper forearm, to protect common-needle users, and on the buttocks, to prevent the victimization of other homosexuals.”

AIDS stigma has declined in important ways since the 1980s. By 1999, my national surveys showed that only about one American in ten supported quarantine for people with AIDS.

But that same year, one fourth of the public believed that people who got AIDS through sex or drug use have gotten what they deserve. One person in five felt afraid of people with AIDS, and more than one in four felt uncomfortable at the prospect of being around someone with AIDS.

AIDS stigma remains a reality today. If we hope to eradicate it, we must understand how it operates in individuals and in society as a whole.

First, the individual level. Stereotypes and prejudices against people with HIV have two main psychological sources. One source is fear — fear of disease, of contagion, and ultimately, of death. Fear motivates many people to avoid those who have (or are suspected of having) HIV. It makes them willing to support laws and policies that would separate people with AIDS from the rest of the population. It makes them unwilling simply to be around people with HIV, to share a drinking glass with them, to hug them.

The ignorance that propels fear-based prejudice remains surprisingly widespread in the United States. In my 1999 national survey, one third of the respondents incorrectly believed they could get HIV from donating blood, 41% believed they could be infected from being coughed on or sneezed on by someone with the virus, and half believed it was possible to become infected by sharing a drinking glass with a person with AIDS. A 2006 Kaiser Family Foundation national survey found that more than one third of Americans still don’t know that HIV isn’t spread through kissing, and nearly one fourth don’t know it can’t be spread by sharing a drinking glass.

The second main source of individual prejudices surrounding HIV and AIDS is preexisting prejudice against the groups linked to AIDS in popular perceptions. AIDS-related prejudice has always been a vehicle for expressing hostility toward the members of those groups — injecting drug users, Haitians and other immigrants, and especially gay and bisexual men. These linkages remain strong. Even as the face of AIDS has changed, much of the US public still thinks of it as a gay disease, and public opinion about HIV continues to be strongly influenced by prejudice against the gay community.

The good news is we can deal with individuals’ prejudices. We can combat fear with information. In the 1980s, AIDS education programs routinely addressed misapprehensions about casual social contact by explaining how AIDS cannot be spread. There is a clear need to restore that component to our AIDS information campaigns.

Eliminating the prejudices that predate AIDS — based on sexual orientation, race, ethnicity, gender, drug use, and poverty — poses a greater challenge. But confronting those prejudices is something we can and must do.

It’s also necessary to recognize how AIDS stigma operates at the societal level.

Stigma is not simply an individual expression of prejudice. Anyone can feel prejudice against another individual or group, but that is not necessarily stigma. Stigma is the endorsement and legitimation of a particular prejudice by society as a whole. Stigma persists because it is woven into the fabric of society. It is part of society’s infrastructure.

Thus, we cannot end AIDS stigma until we exorcise prejudice and discrimination from the institutions of our culture. We must attack not only institutional antipathy and discrimination against people with AIDS, but also against gay people, African Americans, Latinos, women, the poor, and all of the other groups who are targeted by AIDS stigma.

We all look forward to the time when HIV is eradicated and World AIDS Day is simply an historical commemoration of a long-ago epidemic. But we can’t wait until then to eliminate AIDS-related stigma.

Today, on World AIDS Day 2006, we must renew our resolve to marshal our energies, our resources, and our political will to fight the stigma and discrimination associated with AIDS and the groups it most affects. We must resolve that it will soon be unnecessary for AIDS prevention campaigns to deal with stigma. We must resolve to make the epidemic of AIDS stigma just a distant memory, a phenomenon whose vanquishing offers lessons for how to respond to future epidemics with wisdom and compassion.

Copyright © 2006 by Gregory M. Herek. All rights reserved.