Diagnosing Public Health Crises: What We Can Learn About Ebola from Oral History

In this post, public health journalist Katherina Thomas contemplates the power of oral history to not only document a public health crisis, but also create greater understanding about health inequities by empowering communities and allowing those too frequently silenced to share their stories.

By Katherina Thomas

Last week, as the Democratic Republic of Congo declared a new Ebola outbreak, I thought back to the 2014-2016 epidemic that claimed more than 11,000 lives in West Africa and I hoped: perhaps this time, responders will listen to communities from the onset. The new outbreak in the Congo is much smaller than West Africa’s crisis, which was one of the most serious eruptions of viral hemorrhagic fever in history as health systems in Liberia, Sierra Leone and Guinea buckled. That was a public health emergency stoked by inequity, fragile health systems, lack of trust and gaps in global compassion, but also a crisis of connection  both spurred and slowed by the power of stories.

As the epidemic raged, policymakers did not heed lessons from previous public health crises such as SARS and H1N1. Early global conversations about the response excluded civil society and community leaders in West Africa—the pillars of knowledge and decision-making in local society—and by the time the world realized, many of them were dead. The post-mortem was damning: at the community level, the people with the answers had been shut out. In the wake of the epidemic, countless ‘lessons learned’ reports and conferences emerged, but few placed West African perspectives front and center. Living and working in Liberia as a writer and health journalist during the aftermath of the crisis, I kept coming across pieces of knowledge—shards of story from ordinary people—that the world had chosen to ignore. As vaccine trials advanced and geneticists sequenced the Ebola genome, I, along with five Liberian colleagues, turned to oral history.

Although it is not a tangible tool like a stethoscope or thermometer, narrative is another kind of diagnostic instrument.

Oral history seems a particularly apt medium for understanding the nature of infectious disease outbreaks and how pathogens spread. Although it is not a tangible tool like a stethoscope or thermometer, narrative is another kind of diagnostic instrument. The Ebola virus hijacked human relationships, slashing the fabric of society and making vectors of life’s furniture: bed sheets, door handles, handshakes, love. It infected patients and doctors, police officers and criminals, taxi drivers and passengers. Most importantly, in countries with inequitable access to health information and education, narrative played a pivotal role. In some cases, rumors and stories spread faster than the pathogen itself.

My Liberian colleagues were Paradise Oghenereuse Young and Abraham Fahnbulleh, university students who had led the Liberian health ministry’s Ebola contact tracing operation for western Monrovia. Angie Dennis, a former aid worker, aspiring journalist and an Ebola survivor joined us too. Together we traveled around the country, pressing together the missing pieces of the epidemic through hundreds of oral history interviews.

So far we have collected about 200 oral histories, from city slums to remote villages accessible only by canoe. Our interviews have typically lasted between 40 minutes and three hours each, and include testimonies from Liberian policymakers, thought leaders, activists, traditional and religious leaders, burial teams, hygienists, community health teams, military personnel, active case finders, but mostly from ordinary people: survivors and their families. More than 90 percent of the narrators are Liberians, thus leveling the playing field by propelling community leaders to expert status and illustrating the pivotal roles of ordinary people whose actions helped to curb the outbreak.

The collection is provisionally titled Heart Fall Down: An Oral History of Ebola in Liberia (a Liberian term for when hope is lost). In addition to discussing the disease, we asked about topics including fashion, old photographs, nature and dancing, childhood and family, lovers and marriage, birth and death, farming and food. We talked about nightmares, war crimes, religion, and justice. We asked about hope. In rural places with little access to formal education, this often meant chancing upon deep repositories of oral knowledge, or impromptu storytelling sessions by elders.

Old Ma Bendu Fofee is a 90-year-old traditional midwife who had spent three weeks in Ebola quarantine. “I’m happy you came,” she told us. “Since I’ve been knowing myself, none of you people ever asked to sit with me on the same bench before.” Richard Cooper was a teacher who ran algebra classes in the back alleys of a slum when schools closed during the outbreak. “I want to share. You can be old as anything and still teach people something,” he said. Josiah Karmie was a pharmacist in the West Point community. “Nobody cares to listen to poor people,” he said. “That’s why this Ebola thing happened.”

“I never knew what Ebola was, I never went to no workshop about Ebola,” said Sean Don, a jeans salesman who broke into and looted an Ebola treatment unit in Monrovia’s West Point slum. “I only knew that movie, Resident Evil…. a scientist creates a virus and he spreads it around so he can get more money because he has a cure. People kept saying, ‘Ebola is real, Ebola is real,’ but I never knew what it was. It didn’t mean anything to me.” Dr. Mosoka Fallah, a Liberian epidemiologist and foremost expert on Ebola, said, “people were in pain. People were hurting. One morning I remember the health minister coming into work and a colleague of ours, Dr. Brisbane, had just died … and I remember going home that day and my friends were having a birthday celebration. They said, ‘can you come by the party?’ I looked at them and I just said, ‘no, I’m going home.’ That was the lowest day of my life… There was a lack of hope, you know.” Folo Siakor, a softly spoken midwife who delivered the babies of pregnant women infected with Ebola, said, “it takes more than medicine to make an Ebola patient well. Even the talk from your mouth can help make them well.”

In some cases we traced the stories of affected communities from start to finish, following the journeys of taxis, ambulances, extended families, and groups of friends as the virus spread through them, and among them. But amid data challenges during the outbreak, our interviews revealed a more nuanced picture. About one in eight of our interviewees at the community level claims to have survived Ebola without treatment, suggesting many more people may have contracted the disease and survived than official figures imply.

Together, the oral histories we collected form a crowdsourced picture of the outbreak in Liberia that could inform our response to future health crises. Still, stories are not science, and there were times the fault line trembled between fiction and memory. Sometimes recollections of events shifted during second interviews, or changed with the faces in the room. We fact-checked many memories— names, data, places—against records from the Liberian health ministry and aid agencies, but sometimes stories splintered, or fell apart in our hands. Every death from Ebola meant not only a cut to family or community but a loss of knowledge, a hole in our understanding of the outbreak.

The project raised challenges. We approached our work from both journalistic and oral history ethics, but in a country with unreliable and inequitable access to health information, sometimes narrators asked us questions. One man wanted to know whether he was responsible for sexually transmitting Ebola to his late girlfriend. Because we worked closely with the Liberian Ministry of Health, we knew that he had. But we didn’t know how to answer him both fairly and ethically, and neither, it seemed, did any oral history textbook.

Many narrators cried, often freely and at length. In most cases, they wanted to continue the interviews, but we worried about the toll it might take on them. This was an unfunded project on a traumatic topic and none of us had access to much in the way of psycho-social support. Thanks to the kindness of colleagues, I eventually completed a short course in trauma interviewing and counseling, and we referred narrators to licensed clinicians wherever possible. But these kinds of questions persist in my mind: how can we, as oral historians researching trauma, do better to safeguard the wellbeing of our narrators as well as ourselves?

Ultimately, we hope to publish these oral histories as a book and establish or contribute to an archive of publicly accessible oral histories of people affected by the outbreak. Substantial resources have tackled the health system gaps that fueled Ebola, but science and medicine are only part of the picture. We think that the lessons of an infectious disease outbreak like Ebola can only be fully digested when communities, no matter their size, come together and share their learnings. Perhaps an oral history research project such as this one, carried out at the community level, could become a replicable model for deepening understanding in the wake of other public health crises.

Katherina Thomas is a Harvard and MIT-affiliated writer-in-residence, and a Logan Nonfiction Fellow at the Carey Institute for Global Good. She began her career in journalism on the foreign desk of The Independent in London, and lived and worked in West Africa for ten years, where she covered global health and human rights and translated French poetry. She was the founding editor of Ebola Deeply, a Rockefeller Foundation-supported platform that covered the outbreak in depth, advancing global health literacy through public service journalism. She is an MPH candidate at the London School of Hygiene and Tropical Medicine, and has held patient advocacy and health information equity positions in Liberia. Her research interests include narrative medicine, literature, medical anthropology, and patient experiences. Her writing has been published by The Guardian, Reuters, BBC, Guernica, The Economist, PEN America and many others, and recommended by The New York Times and The New Yorker. 

Images courtesy of the author.