By Baylee Materia
“Well, it was pretty darn scary,” recalls Don Chaplin when asked about the early days of the HIV epidemic in North Carolina (Chaplin 0:34:45-0:34:50). An openly gay physician, Chaplin bore witness to an aggressive, unsympathetic social and political climate that demonized HIV/AIDS patients and the LGBTQ+ community. Now retired, Chaplin is grateful to live in generally more accepting times. However, in many rural areas throughout North Carolina and beyond, a lack of information surrounding AIDS and HIV transmission continues to fuel harmful stigma surrounding the typically fatal disease.
Acquired Immunodeficiency Syndrome (AIDS) is a chronic and all-too-often fatal disease caused by the human immunodeficiency virus (HIV). HIV is typically transmitted sexually, and it can also be transferred through the use of shared needles or other methods of contact with infected blood. The virus does incredible damage to the immune system through the destruction of CD4 T cells (Mayo Clinic). HIV/AIDS has taken a disproportionate toll on the LGBTQ+ community since its rise in the early 1980s. Many coined it a “gay disease,” and conservative government leaders made it a taboo topic. This resulted in HIV/AIDS research being left significantly underfunded (Bennington-Castro). Don Chaplin recalls being frightened by stories of hemophiliacs’ homes being burned to the ground in rural Florida (hemophiliacs frequently receive blood transfusions and were thus at a higher risk of contracting HIV at this time). He even remembers such instances in his own North Carolinian backyard: a restaurant cook in Raleigh was fired for being perceived as gay out of fear that he would spread the disease to guests, and a man dying of HIV was paroled from a state penitentiary and left to die on the streets of Raleigh (Chaplin 0:35:45-0:38:34).
Today, while much light has been shed on this once misunderstood and unexplained disease, many rural North Carolinian residents remain in the dark when it comes to HIV transmission. For their Stories to Save Lives (SSL) project, interviewers with UNC’s Southern Oral Histories Project sat down with workers at CommWell Health, a community clinic in rural Dunn, NC. Albrea Crowder, a medical case manager who works mainly with HIV/AIDS patients, discusses the ignorance and stigma she has witnessed through her work at the clinic:
“The lack of knowledge people have about transmission of HIV just really gets to me” (Crowder 0:45:52-0:46:00).
While doing community outreach and awareness events, she would frequently receive questions such as whether or not an HIV-positive hairdresser could transmit the disease to their clients (Crowder 0:47:07-0:47:25). Despite the nearly forty years that have passed, the same ignorant thinking that left an innocent Raleigh cook unemployed in the early 1980s remains prevalent in many parts of North Carolina today.
Janette Godwin, another employee of CommWell health in Dunn, NC, identifies poor health literacy as a root cause of stigma:
“A lot of people are just not aware of what causes a lot of the problems, or there’s a lot of things that don’t get talked about that should get talked about. I think you should educate yourself” (Godwin 0:37:28-0:37:52).
For many individuals, however, self-education is not a simple task. Many North Carolina public schools, specifically those in rural areas, continue to teach abstinence-only sex education despite the severe lack of supporting evidence (Lloyd et al. 42). Additionally, obtaining important health information oneself is often a challenge for rural residents. Dr. Paul Smith, a rural health literacy researcher and family physician, explains that “[health information] is harder for rural folks. Harder to find, to use, to understand. It’s all harder for rural areas, especially with the lower educational achievement levels” (Temple).
Poor health literacy can manifest itself in HIV/AIDS stigma on multiple levels. Ignorant misconceptions amongst friends and families leads to what is referred to as “interpersonal stigma.” Additionally, negative HIV/AIDS perceptions are often prevalent at the wider community level, such as in religious institutions (Fletcher et al. 351). These forms of stigma can create very isolating experiences for people living with HIV/AIDS (PLWHA). The negative social consequences can cause physical harm as well. In her SSL interview, Albrea Crowder discusses the “out of sight, out of mind” mentality towards testing that she has witnessed through her work at the clinic:
“It’s like people look down on the people who know they’re HIV-positive” (Crowder 0:46:20-0:46:35).
Because of this, many individuals are reluctant to learn their HIV status, seek treatment, or continue with care. Moreover, people of color are disproportionately affected by HIV/AIDS and its associated stigma. In 2018, black people made up 42% of new HIV diagnoses despite being only 13% of the US population (Gilead). Studies have shown that those with “co-occurring devalued social identities” are more likely to face significant stigma, thus making them even less likely to seek diagnosis and care (Rao et al. 2018).
In order to dismantle HIV/AIDS stigma, this lack of understanding must be tackled from multiple fronts. First and foremost, public school systems must pivot away from abstinence-only sexual education. In a recent study of rural southerners, adults reported youths becoming sexually active at increasingly younger ages “yet receiving far less guidance in sexual health issues, such as STI/HIV prevention” (Lloyd et al. 45). The issue of uncomprehensive sexual education is far from improving – the percentage of US schools requiring education on HIV prevention fell from 64% to 41% from 2002 to 2014 (Berger). Understanding how HIV works is critical to mitigating the stigma surrounding it and its transmission. Additionally, another way to attack interpersonal stigma is through the home. In her SSL interview, Janette Godwin discusses the importance of open dialogue between parents and children regarding safe sex. Many families perpetuate the notion of sex being an “uncomfortable topic” and leave their kids in the dark on many sexual issues. “Sometimes it’s better to hear it from your parents than it is from all the kids at school,” Godwin explains. “Parents don’t want to have that conversation. I’d rather have that conversation” (Godwin 0:38:59-0:39:56). On the community level, addressing HIV stigma in religious institutions is crucial. Churches and other faith-based organizations have been strong perpetrators of HIV stigma due to their conservative ideals and the disease’s ties with the LGBTQ+ community. Bible Way Ministries in Atlanta, Georgia is tackling the issue by providing free HIV testing monthly in an effort to “remove the stigma.” Additionally, HIV activist Pamela Foster “developed a faith-based, anti-stigma course built on curriculums used by the Christian Council of Ghana (one of the few such curriculums available) and the N.A.A.C.P” (Landman). Such efforts must be implemented on a larger scale within North Carolina to continue suppressing the stigma. Another significant factor to note is the previously mentioned heightened effects of HIV stigma on communities of color. Addressing structural racism and viewing HIV stigma through an intersectional lens is necessary for fully confronting the issue at hand. Finally, community clinics such as CommWell Health (at which Albrea Crowder and Janette Godwin work) do valuable outreach and advocacy work that increases health literacy in rural areas and can contribute to decreases in stigma.
Overall, while HIV/AIDS is generally much more understood today than it was in the 1980s, persisting misinformation fuels negative perceptions that inflict shame upon PLWHA and presents barriers to proper treatment. Civil servants and community leaders must enact changes to improve health literacy within their communities, and individuals must be more open minded in regards to HIV and sexual education. These combined efforts on the societal and personal levels are necessary to improve the physical and mental wellbeing of PLWHA and to create a future in which they are more accepting of and comfortable with their diagnoses.
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