On most mornings this summer, I feel like an adult. A few minutes before I head to my very important 9-to-5 job, I perch on a chair in the Parker & Otis patio while sneaking sips of my almond milk latte between every couple of headlines I scroll through onmy News app, shaking my head at the latest atrocity committed. Being a millennial version of a middle-aged dad from a family sitcom keeps my self-esteem above sea-level. But the news about social justice issues I read? Sometimes, that makes me feel impotent.
Don’t get me wrong: my work excites me. My lab is trying to understand how HIV infection affects the neurophysiology and behavior of individuals living with the virus. Although combined antiretroviral therapies have enabled HIV positive people to live long and healthy lives, many of these individuals suffer from HIV associated neurocognitive impairments that can severely debilitate daily functioning.
Besides running fancy machine learning algorithms and studying jaw dropping multimodal MRI brain scans on the daily, the reason I love my lab is because it focuses on a highly vulnerable and stigmatized population set: HIV positive individuals with mental illnesses. In the United States, HIV affects gay African Americans and Hispanic men and transwomen horrifyingly disproportionately. On a global scale, two-thirds of the 36 million HIV+ individuals live in economically disadvantaged sub-Saharan Africa.
However, the reason that make this research meaningful—the study of a disease tied to stigmatized populations—also makes me doubt its ability to enact change. Does finding out what white matter tracts suffer deficits due to chronic HIV infections really matter if hundreds of thousands of people are dying to AIDS—a preventable end—because barriers to healthcare, institutionalized racism and homophobia, and systemic economic inequalities prevent HIV positive individuals from accessing antiretroviral treatment?
Stigma prevents the fruits of medical research from reaching the people who need it, and Dr. Emilia Chiscop-Head believes in the “impact of positive storytelling as a means to eradicate stigma.”
Dr. Chiscop-Head is a graduate of Duke University’s Master of International Development Policy Program, preceded by a master’s degree in Bioethics at Case Western Reserve University as a Fogarty International Center fellow. In the past, she was also the Senior Manager for Education of the Duke Initiative for Science & Society and the Manager of the Huang Fellows Program where she was highly involved in curriculum design, implementation and teaching.
Before moving to the United States, she had an internationally awarded career in journalism, in her native country, Romania, where she investigated the highly stigmatized population of the Roma and mental health issues that also disproportionately affect this population. The Roma are stereotyped to be “stupid, uneducated, and dirty” and are plastered with demeaning labels like “gypsies” and “Tzigani” that roughly translate to “slaves.” Dr. Chiscop-Head said that, as a child, she was told that “if she did not behave well, the Tzigani would kidnap her.” The stigma to which she was exposed, however, didn’t take root in her mind.
Dr. Chiscop-Head believes that integration of the Roma in Romanian society and the rest of Europe is not only the most ethical and humane course of action, but also economically smart. For years, she worked with the Roma, writing and publishing pioneering news articles that showed the Roma in a positive light. Her journalism also draws attention to mental health issues that are running rampant—and the lack of resources dedicated to cure or prevent them.
Media gets rid of the teeth of stigma that bury themselves in society—it cracks open a door for the products of science to reach the populations the science had set out to help on the first place. In fact, the line of my own summer research was born out of fiery activism and the media that fueled its flame to burn brighter.
The AIDS Crisis of the late 80s and early 90s created a generation of activists who successfully campaigned for increasing the funding for HIV/AIDS research, making drug test trials more ethical, and reforming the FDA drug approval process. The plague attacked the highly vulnerable communities of gay men and transwomen in cities, but because of the horrendous stigmas attached to these people, their plight was taken lightly. At first, at least. The undeterred dedication of activist organizations and the power of the media to humanize HIV/AIDS victims were necessary to push policymakers and scientists to search for a cure. Decades later, this search continues.
“Strong storytelling creates powerful ripples,” Dr. Chiscop-Head said. The cries of hundreds of thousands of protestors at the base of the Washington Monument from over 30 years ago calling for AIDS research echo in the clicks of my mouse as I scroll through the million dollar brain scans on my lab computer. I’m riding a ripple. And it’s empowering.
Tauseef is from Dyersburg, Tennessee pursuing a major in Neuroscience with minors in English and Psychology.