By Kira Gressman and Noah Selzler
Noun: The word stigma refers to an extremely strong social label or perception that changes the attitude individuals feel about others and themselves that in turn forces people only as bearers of an undesirable quality. (stigmadefinition.com)
HIV stigma has been prevalent since the virus’ outbreak in the 1980s. While decades of medical advances have changed the scientific reality of HIV, stigma remains widespread. So what does HIV stigma look like today compared to 30 years ago? Barb Cardell, Board Chair of the Positive Women’s Network and HIV advocate, sat down with BCAP to shed light on the evolution of HIV stigma.
As a woman living with HIV, Barb shared her own experiences and how she believes people can change the reality of HIV stigma. At the beginning of the United States’ HIV epidemic, little was known about the virus and little was discussed. No one knew what caused HIV. All that people saw were individuals being diagnosed with the virus and then dying a few years, if not months, later. People were afraid to touch, hug, and interact with people living with HIV. “Everyone who is HIV-positive has a story of discrimination. People just don’t talk about them because if you hold on to these experiences you’d always be mad,” Barb said as she shared her story during the interview.
A few years into the epidemic Barb was an executive chef in a restaurant. She found out that she was HIV-positive. She informed her employer of her status and was immediately let go from her position. Barb recalled, “Some people were (and still are) afraid to eat food cooked by someone who is HIV-positive… It doesn’t matter what the proof is and it doesn’t matter what the reality is, what matters is people’s fear.” The virus was labeled with uncertainty and death, and fear-based HIV stigma silently surfaced towards those who were, or assumed to be, HIV-positive. In the early 1980s, the Centers for Disease Control announced that the population affected by HIV was predominantly gay men. Consequently, the gay male population became one group marked by the disease. Yet other people also were affected. Many women contracted HIV in the 1980s, but the medical classifications for AIDS-defining illnesses were geared towards men. As such, many women remained undiagnosed. Barb stated, “Women didn’t get AIDS, they just died from it.”
By the 1990s, death rates of HIV increased across the United States. HIV had caught people’s attention. As more individuals became affected by HIV, people began to speak out about the epidemic. As the issue was talked about and people shared their experiences living with HIV, fear-based HIV stigma changed into pity-based stigma for many. Barb spoke of how friends would constantly ask people living with HIV “How are you feeling?” and expressed sympathy for them, as “victims.”
More HIV-related medical developments arrived in the late 1990′s with the onset of Protease Inhibitors and many new HIV medication combinations. HIV perception shifted from a death sentence to a chronic illness, having an effect on HIV stigma. Barb described the new societal attitude as, “HIV can be helped, so why do we spend all of this money on it? As long as I don’t get it, I won’t be judged.” While HIV may no longer be a crisis in the minds of many people living in the United States, the challenges of the epidemic remain.
In order to reduce stigma and decrease transmission, conversations around HIV awareness, advocacy, and education are crucial. As an HIV advocate, Barb attended the 2012 International AIDS Conference in Washington DC, hoping to find new ways to address HIV stigma. Her goal was to engage people in conversations surrounding HIV and to quantitatively measure stigma in Colorado. Thus, the COMPASSION Campaign was born.
The COMPASSION Campaign uses survey questions about HIV to measure people’s knowledge and attitudes. Approximately 850 people completed the survey. While this is a small sample size predominantly comprised of people connected to the epidemic, the results express mixed feelings about HIV.
- 57% felt that people speak negatively about people living with HIV.
- 63% thought that people living with HIV lose societal respect and standing as a result of their status.
- 90% believed they would not be ashamed if a family member was HIV-positive.
- 90% reported they would feel ashamed if they became HIV-positive.
The first two statistics suggest that a negative undertone still exists towards people living with HIV. The third and fourth statistics reveal a more complex dynamic: people are comfortable with others having HIV, but they would feel shame if they personally became HIV-positive.
How do you consider people who are living with HIV? What impact might be felt when people who are living with HIV hear others talking about them negatively? Might they experience discrimination from feeling less respected in society? Might they feel ashamed of their status?
After examining the survey’s initial results, the next goal of the COMPASSION Campaign is to administer the survey nationwide in order to acquire more data. Meanwhile, there are many ways in which we, as individuals, can advocate for changes:
- We need to talk about HIV and address stigma-based comments.
- We can create connections with those personally affected by HIV and develop a better understanding by listening to their stories.
- We can normalize getting tested and knowing our own HIV status.
Regardless of HIV status, we can connect with and listen to one another, share our stories, and speak out about HIV awareness and stigma. We can spread compassion. We can end stigma.
If you are interested in participating in the COMPASSION campaign, the survey can be found at the links below: