As the number of deaths associated with the current Ebola outbreak in the Democratic Republic of the Congo surpasses 1,000, a new audio archive could offer insight to the best way to combat this deadly outbreak.
Amid the devastating 2014-2016 West Africa outbreak that took the lives of more than 11,000 people, Katherina Thomas and her team set out to record the oral history of Ebola through community members in Liberia by launching the Ebola Listening Project.
Thomas, an independent global health writer and researcher, lived in Liberia for 10 years and she teamed up with two former contact tracers (who tracked people who had potentially come into contact with the virus), and an Ebola survivor to interview as many people as possible about their experiences with the disease.
The group launched the project in 2015 during the West Africa outbreak when they noticed people most impacted by the outbreak were not being heard.
“We all felt really strongly that there was so many more insights that were just not being listened to or being yielded from ordinary people’s stories,” Thomas told Global Citizen.
“At that time, traditional chiefs and traditional leaders were left out of the response process,” Thomas said. “It was very much led by international teams without much feedback from people on the ground.”
We need to look at our language. Even in some of the best media reporting, there's language like "community resistance is hindering the #Ebola response." As long as we continue to frame it that way, rather than seeing communities AS the center of the response, this will go on.— Katherina Thomas (@klgthomas) May 19, 2019
They have collected interviews from more than 300 people across more than 30 communities. They’ve talked to community members and leaders, women’s groups, religious leaders, survivors, burial teams, health workers, and the traditional leaders of all 15 Liberian counties.
Thomas recalls talking to the men who looted a health centre in Liberia in 2014. She said they talked for about two hours, discussing things like the motivation behind their attack.
“We just heard really … human stories at the center of that,” she said. “One guy that attacked the center told us that he did it because his little sister was inside and she was dying and he wanted to rescue her. Another guy told us that he thought that he was saving his community because he thought that people had been bringing Ebola into the community.”
This project is not meant to downplay the grave importance of global health efforts in the response to disease outbreaks like Ebola, but rather include the communities more directly.
“We just really want … the voices of people affected by that epidemic to inform … future epidemic response policy in some way,” Thomas said.
While the context of the current outbreak in the DRC is different than it was for the 2014-2016 West Africa outbreak that Thomas reported on, there are some similarities, like that of public mistrust, for instance.
“It’s just kind of amazing what the … simple act of sitting with someone and listening to their story can reveal, but we just overlook [it] in terms of global health policy a lot of the time,” she said.
Angie Dennis, who works with Thomas on the Ebola Listening Project, is an Ebola survivor herself.
“I haven’t been surprised,” she told Global Citizen, about the interviews she’s conducted. “Everything they were saying, I knew it was true.”
It is totally unbearable to me—and to the hundreds of people affected by #Ebola in West Africa who entrusted us with their hard-learned insights—that our failure to fully listen to communities has cost lives in not one huge #Ebola outbreak, but two.— Katherina Thomas (@klgthomas) May 19, 2019
Dennis contracted the virus in 2014 and was sick for about three weeks. She said the challenges she faced were reflected in the people she’s since interviewed.
“We shared the same fear, we shared the same doubt,” she said.
Thomas said that the stories would “come tumbling out” of people, as the listening project acted as a sort of informal therapy, in a community where there is a gap in psychosocial support.
Among some interesting findings, Thomas points out that they met with a number of undocumented survivors — people who said they thought they had had Ebola, but who never sought treatment.
This is noteworthy not only because it seems that there exists a population of people who survived the virus without treatment, but is also important as it means a population of people were infected and could have furthered the transmission of the virus.
The next step for Thomas is to secure funding so that the Ebola Listening Project can be turned into a publicly accessible archive.
Rather than trying to persuade communities to trust international medical teams, Thomas said it would make more sense for the teams to adapt their response around the communities' concerns.