The struggles of those who survive epidemics do not end when they leave the hospital, said Adia Benton ’99, an associate professor of anthropology at Northwestern University.
At a talk hosted by the Center for the Study of Slavery and Justice Tuesday, Benton discussed her experiences with survivors of the Ebola epidemic in Sierra Leone — specifically, how the deadly disease brought the survivors new problems.
Benton travelled to Sierra Leone over the past three years and interviewed survivors of Ebola to learn about what had happened after the epidemic ended. She found that the country and survivors of the epidemic had been changed.
Benton described how many survivors were personally impacted by Ebola, both in physical symptoms and in their political role. Ebola survivors experience lingering effects of the disease, including neurological disorders such as trouble seeing and hearing, as well as psychological trauma, Benton said. She noted that some survivors are the only members of their families who were left alive after the epidemic.
In addition to physical symptoms, their coveted immunity against the Ebola virus and their experiences contributed to the exploitation of survivors, Benton said. Treatment centers for Ebola sought to employ survivors because they could not contract the virus again, Benton added.
In addition, survivors’ biological samples were misused, Benton said. She recounted a conversation with a survivor who donated plasma expecting it to be used to treat other Ebola patients. Instead, the samples were taken by researchers, many in foreign countries such as the United States, without the consent of the patients, Benton said. American academic institutions valued the samples so much that one institution compared it to “mining for gold,” Benton said.
But, survivors began to advocate for changes to healthcare in Sierra Leone. Although Ebola survivors received a discharge certificate that guaranteed free healthcare from the government, it was useless without access to care. Free healthcare “means nothing if you don’t have a clinician who can help you,” Benton said.
There have already been some changes in Sierra Leone because of the epidemic.
When Benton arrived in the country, where she had lived prior to the Ebola epidemic, she saw something she had never seen before in Sierra Leone: ambulances. Before Ebola, there was no emergency response in the country. But the epidemic made it a necessity, Benton said.
It is unclear how survivor status will play a role in the coronavirus pandemic, Benton said. “It’s always in the background of (COVID-19) discussions,” she said. “Flattening the curve isn’t the end” for survivors.
Lundy Braun, professor of pathology and laboratory medicine and Africana studies at the University and moderator of a Q&A session following the event, took note of the parallels between Benton’s findings and the current pandemic. She described Benton’s story as “extremely interesting and troubling.”
As the COVID-19 pandemic rages on globally, Benton said that survivors of Ebola are still hoping that foreign researchers will make things right. Some survivors have called for reparations for their biological contributions.
“Who is going to benefit from the fruits of that knowledge and that labor?” Benton asked.
Ben Glickman is the 132nd editor-in-chief and president of The Brown Daily Herald. He previously served as a metro editor and oversaw the College Hill and Fox Point beat, in addition to writing and editing about city politics, COVID-19 and the 2020 election. He is the co-creator of the Bruno Brief, The Herald's first news podcast. In his free time, he is passionate about birds (also tweeting) and eating way too spicy food.
