While pursuing the original research question and observations of the Covid-19 Pandemic, research began on prior health pandemics within the United States. With the original goal of achieving broader participation in public health initiatives, research exploring fractured responses in the United States during past disease and drug epidemics uncovered an obvious throughline: the persistence of stigma. Defining stigma here as “the situation of the individual who is disqualified from full social acceptance” (Erving, Goffman. 1963. Stigma. London: Penguin.), research evolved to investigate the following question:
How Has Stigma Impacted the United State’s Response to the HIV/AIDS Crisis?
The nature of “stigma” describes broader phenomena. Stigmatization occurs for different reasons, regardless of distinctly harmful effects. Stigmatization can apply to behaviors, people, cultures, and, of course, illnesses. Epidemics in the United States across the 20th century have documented examples of stigmatization based on xenophobic stereotypes. The 1918 Influenza Pandemic, SARS, H1N1, the Ebola outbreak, each saw immediate xenophoblic stigmas correlate with the news of novel disease transmission. During the Covid-19 outbreak and resulting pandemic, that same pattern repeated itself in the United States: statistics show an increase of hate crimes on Asian Americans and those of Asian descent after the outbreak began. (Lee and Waters 2020) Death minimization was a common phenomenon as well, leaning on stigmas of personal responsibility for health and age.
Beyond the biological threat of a virus, societal responses compound the impact of disease on the affected individual and those in their proximity. Cultural stigmas can force an invisibility around those struggling, those contagious, or just random people associated with the spread. Fear and misinformation can make those requiring medical assistance less likely to self-identify or even get tested, and discrimination from health providers worsens health outcomes. Referring to the motivations for the original research question, epidemiologically speaking, we are all vulnerable and better off with limited-to-no disease spread, so pandemics can be conceived as a collective equalizer. This has not been the case. When preventable diseases continue to plague marginalized populations there remains a wider societal cost, future risk, and unethical suffering.
This is the history of HIV in the United States. This project will explore how stigma affected responses to the crisis, and examine the role of stigma in human reactions to epidemics. Stigma has repeatedly been an element of pandemics. This is true both for stigmatized views of the afflicted, the perceived vector, the “other”, which historically factor into racist and xenophobic views, but also in stigmas relating to medical conditions that range from transmitted diseases, to mental illness and substance use disorders.
Since the first recorded case of HIV in the United States in 1981, public health responses were marred by the exact such stigmatization, which tainted scientific direction, and ultimately guided the resulting impact of the disease. Over the course of this epidemic, a broad cross-section of people have become the victims. While this can often be conceptualized as disease primarily that primarily affected homosexual men and IV drug users, the impact has been far broader. While there was an immediate crisis specific to homosexual men and drug users, it was not limited to them. Stigmatization of homosexuality during the HIV crisis misguided medical experts and corrupted the governmental response, including that of the Centers for Disease Control. There are a variety of primary sources documenting this stigmatization. Perceptions of AIDS as a “disease that mortally afflicts a tiny fraction of the population whose willful behavior results in the infection” were widespread, however inaccurate. (Kilpatrick, James J. “PUT IT IN PERSPECTIVE.” Philadelphia Inquirer (Philadelphia), June 08, 1988.) This was true inside and outside the medical establishment. Documented accounts of those facing barriers to adequate medical care, as it relates to such stigmatization, are required primary sources for this assignment. Overlap exists between recent news reports of Covid-19 and this ugly bias from 1988.
The common and co-occurring stigmatizations of sexuality and drug use is a lens that deserves attention as well. Finding primary source documentation that has direct perspective would be the most ethical way to approach this group as well. There has been significant research accomplished on this already. Ultimately, limiting conceptualization of this epidemic to one stigmatized subgroup was not only incorrect, but more broadly harmful. Mitigation efforts were weakened by people falsely believing they were not vulnerable. Expectations that this virus would remain within one segment of the population failed to understand epidemiology, but also the diversity of human sexual identity. The stigmatization of HIV/AIDs and its broader social personification as a “gay man’s” disease also led to wider activism around an artificially created invisibility. Women, for example, organized to change the definition of HIV/AIDS. (Elbaz, Gilbert.. “Women, AIDS, and Activism Fighting Invisibility.”, no. 96. N.p.: Revue Française D’études Américaines, 2003.) Their accounts of activism, as well as their experiences are documented in both primary and secondary sources.
This project may attempt to investigate the impact of stigma specific to class, sexuality, and race. Using data archives from the CDC as a primary source will provide some picture of how the disease spread over time, and who it harms today. (Division of HIV/AIDS Prevention, National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention, Centers for Disease Control and Prevention, 2020) A 20-30 minute podcast will explore how that existing stigma has negatively impacted the response to the HIV/AIDS epidemic in the United States, and compare this response to the current Covid-19 outbreak. Intersecting stigmas, such as IV drug use, sexuality, race, HIV positivity, are perspectives of particular interest because of the immense degree of stigmatization. Other epidemics are also of interest to compare the effects of stigma in the US historically. A podcasting medium will provide an opportunity for recorded audio and considering the timeframe of the research period begins in the 1980s, audio records are both obtainable and desirable. The literal voices of those most impacted can be heard, and responsibly contextualized in this project.