Inspired by study abroad experiences and Copeland-funded trips, sociology majors Eileen Barrer ’11 and Liz Wall ’11 wrote their Independent Study projects on the modern HIV/AIDS experience in the United States and in Ghana, respectively.
During her semester abroad in South Africa ó the most densely populated country with HIV-positive people in the world ó Barrer researched the conditions of South Africans living with the disease.† The experience served as inspiration for her Senior Independent Study, in which she examined the U.S. experience of living with HIV/AIDS.
“Before studying in South Africa, I could have been the poster child for having no idea about HIV/AIDS,” said Barrer.† “How could I have lived for 21 years and be ignorant about the epidemic in America?”
Wall’s personal experiences with HIV/AIDS have given her a life-long drive to promote HIV/AIDS education and led her to her Independent Study project, in which she researched the stigma attached to HIV/AIDS in two villages in Ghana.
Wall was born HIV-positive, but has tested negative since the age of two.† Since her childhood, she has been active in The NAMES Project, which serves to “preserve, care for and use the AIDS Memorial Quilt to foster healing, heighten awareness and inspire action in the struggle against HIV and AIDS,” according to the Project’s website.
Wall spoke at events such as World AIDS Day as a child and actively participated in HIV/AIDS education programs at her high school. “HIV/AIDS has always been a part of my life,” she said. “It’s part of my identity.”
When Barrer began the preliminary research for her project, she discovered that research on the U.S. experience of living with HIV/AIDS has focused on the eighties and nineties, but there has been little research focused on the post-millennium experience.
Barrer interviewed seven people who are HIV-positive or who have AIDS in her hometown of Ann Arbor, Mich.† She got in contact with her participants through a counseling organization in the area.
Through the interviews, Barrer discovered that people living with HIV and AIDS today in the U.S. have a much more positive experience than they would have had just a few decades ago, and that there is less stigma attached to the disease because it is no longer a “death sentence.”
Barrer’s interviewees described better treatment options, such as the drug azidothymidine (AZT) that allows HIV-positive people to live and function with the disease. Still, they consistently indicated that people “just don’t understand” the disease.† They described a disconnect between people who are infected and those who are not and several misconceptions people have about the disease.
For example, some described being faced with people who feared they could contract the disease by sharing a water glass or bathroom with an infected person, although HIV can only be spread through the exchange of bodily fluid.
Astonishingly, three out of seven of Barrer’s interviewees described the growing phenomenon of “bug chasing,” in which non-infected people, usually young gay men, seek HIV-positive sexual partners in order to contract the disease. According to Barrer, for some in the young gay population, contracting HIV/AIDS is seen as a rite of passage, demonstrating the disconnect between those who are infected and those who are not.
The availability of AZT drugs and significantly fewer side effects of the disease since the late twentieth century have led “bug chasers” to underestimate the ramifications of their actions.
Although the interview process was exhausting and emotionally draining for Barrer, she felt inspired by their stories.
“It was inspiring how happy everyone was to talk to me even after losing friends, partners and family to the same disease and surviving,”††† she said.
Wall also interviewed 15 HIV-positive people in the towns of Ho and Cape Coast in Ghana, where she traveled last summer with the help of the††††††††††††††††† Copeland Fund.
Wall was surprised to discover that HIV/AIDS carries more of a stigma in Ghana, where it is very prevalent, than the U.S., where there are fewer cases.
While Barrer’s research indicated that infected people carry less of a stigma in the U.S. than they did 20 or 30 years ago, Wall discovered that there is a very strong stigma attached to HIV/AIDS in Ghana.
This stigma has led to what Wall described as the “cycle of silence,” in which infected people endure their disease in silence in the face of being shunned and outcast by their families and communities.
“I think that education could help break the cycle of silence,” said Wall, who further explained that the government and schools do not educate people about the disease or how to prevent infection. “It’s like having the birds and the bees talk with your family ó they just don’t want to do it,” she said.
Barrer’s and Wall’s I.S. projects have served to “start the conversation,” said Barrer. By drawing attention to the HIV/AIDS epidemic in different parts of the world, their topics serve to educate and begin a dialogue about the conditions and social stigmas associated with the disease.