Finding Four: Cause, Effect, & Stigma

Finding Four: A General Focus On Individual Behavior

Another source of stigma stems from people’s views on how HIV is commonly transmitted. They maintain that, unlike heart disease or cancer, AIDS is an infection transmitted primarily by one’s own actions. It mostly affects people who are taking risks or engaging in behaviors that people don’t approve of. Experts tend not to focus on individual behavior when thinking about HIV risk. Instead, they maintain that stigma around how HIV is transmitted, and who gets HIV, is a major barrier to solving problems within the epidemic.

Some of the people in the groups we spoke with talked about the unique stigma attached to HIV/AIDS. Participants said, for example, that while cancer has little to do with personal choices and more to do with bad luck or genetics, HIV/AIDS, is usually acquired because of bad choices. One woman in Los Angeles said, "Socially, if I have cancer, it’s not my fault. It happened to me. If I tell you I have HIV, I have a stigma on me, because you'll say, What kind of a person are you?" A woman in Des Moines said something similar: "A lot of people think that AIDS is you did that to yourself. It's your own fault. You weren't careful, and so that's what happens. With cancer, that's like, 'Oh, I feel so bad for you. You didn't do anything to get it, and it's not your fault.'"

Focus group participants went on to say that some people acquire HIV/AIDS through no fault of their own, and they showed greater sympathy for these individuals. In Birmingham a woman said, “What about those that are born with it? They're born with it. They can’t help that."

Some also suggested that education should emphasize these more sympathetic individuals. For instance, a woman in Westchester suggested this for a public education campaign: “You can show like an old man that had a blood transfusion that has full-blown AIDS, and show the public, ‘Look. I have AIDS. You’re going to discriminate against me? I got it through a blood transfusion while I was in the hospital for a kidney transplant.'" These focus group comments show that unlike other diseases, there is still a stigma attached to becoming HIV-positive, and perceptions of the patient being at fault vary depending on how the virus was contracted.

The public did realize that some groups of people are more at risk for HIV, but they had a hard time conceptualizing how structural issues could influence who is most likely to acquire the disease. Because they framed the issue in terms of their own lives and behavior, they continued to see the issue as one of personal responsibility. If a demographic group has a higher incidence of HIV, participants generally said it was because that group behaves differently from other populations.

For example, a woman in Los Angeles thought her gay friends had particularly risky lifestyles. She said, “I have a lot of gay friends. For the most part, they have a different lifestyle, shall we say. They’re a lot more promiscuous. It’s just like a different party lifestyle. The disease is very prevalent in that society.” They also thought urban areas were havens for riskier lifestyles. We heard from a man in Des Moines that "some big cities…would have a little bit higher percentages due to the larger numbers of certain lifestyles that you don’t see, as opposed to one of our real small towns where if you got an IV drug user in the town, everybody knows it."

Although some participants maintained that HIV/AIDS is different from other diseases (in their eyes, it is a disease caused solely by choices a person makes), a few did agree that life choices also factored into other diseases, such as heart disease and cancer. A man in Des Moines said, "There are things you can do to combat heart disease; with exercise you can strengthen your heart," and we also heard in Los Angeles that if you get "too fat, [heart problems]…are your own fault."

Many experts had a different take. They talked about the existing prejudices that contribute to problems with HIV/AIDS. They framed it not as the public did — that is, not in terms of personal responsibility or "people making bad decisions" — but as currents of homophobia, racism and negative attitudes toward drug users and those not practicing monogamy.

To many of them, this not only contributes to HIV stigma, but is a major barrier to fighting the epidemic in the communities that are most at risk — perhaps, as some of the experts we spoke with said, because some policymakers also hold these views. In the words of the director of an HIV law and policy organization, some experts think that "if there was one single thing [that could most help fight HIV], it would be focus[ing] on eliminating all of the homophobic, gender-based, civil rights problems that feed the belief that people are getting what they deserve."

Some experts contend that the disease is seen as a problem of "other people." As a state legislator participating in our survey put it, "[Policymakers] are hesitant to do anything. It's not affecting, in their view, the larger society." And policymakers may not be as aware of the problem, because HIV/AIDS is not a disease that affects them personally.

A medical historian pointed out that "we disproportionally fund diseases that affect our life or the lives of those who are similar to us, which is one of the reasons why breast cancer and prostate cancer get such good funding." But other experts saw the bias as more deliberate — accusing policymakers of pursuing socially conservative policy positions that exacerbate AIDS issues. In the words of one activist, "We have public dollars that are being used to fund HIV stigma… 'Abstinence only until marriage' is federally-funded stigma promotion."

Two of the experts, both heavily involved in helping African-American churches take the lead in educating their communities about HIV, pointed to misinformation within the at-risk communities. They said that there is a misconception among African-Americans that HIV affects only the homosexual population. One thought that “the biggest stigma attached to HIV/AIDS is homosexuality. Folks still don't get it that homosexuality does not cause AIDS." And some experts pointed out that any kind of stigma associated with HIV may prevent people from being tested for fear that they will be discriminated against. One director of an HIV law and policy organization thought that "the perception of social risk associated with HIV testing is extraordinarily high and based in reality."

Experts also view the AIDS epidemic in broader terms than the public does. They see it as driven by socioeconomic factors, with some explaining how social marginalization and its associated hopelessness can lead to increased risk for HIV. Overall, many see HIV/AIDS as "truly an epidemic of poverty, race, class and gender." This women’s health organization’s program officer went on to say, “All of the societal factors are just as [important as], if not even more important than, the traditional notions of what makes someone at risk or vulnerable to acquiring HIV."

Some go so far as to say that without these structural problems, the epidemic would not be so severe. One public health official said, "If we had started 20 years ago dealing with the real underlying issues — like lack of education, therefore lack of hope, lack of getting a good job, not caring what happens with you tomorrow because nobody cares about you, you feel marginalized, stigmatized — we'd be in a different place in the epidemic right now.”

Since experts mostly considered structural or socioeconomic factors as contributing to the spread of the disease, they made efforts to avoid placing blame on individuals for engaging in risky behavior. Those who did talk about individual behavior framed it in terms of empowerment, in one case, according to the director of a national public health organization, of "women becoming empowered to protect themselves so it becomes the norm to carry a condom."

Another AIDS activist dismissed using individuals' behavior as a sufficient model of assessing risk, saying that "risk behavior does not adequately describe vulnerability to HIV or STDs…. Average sexual behaviors of a standard person puts them in harm's way if they have higher rates of HIV in their community. And so measures to help people reduce their risk may not help reduce their vulnerability enough to HIV."

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