We're Building an Ebola Narrative Archive

In 2015, during the devastating 2013-16 West Africa Ebola outbreak, four of us came together for a unique project: to carry out hundreds of in-depth oral history interviews with community members affected by Ebola across Liberia, with a view to establishing the first ever archive of Ebola patient and community experiences. 

We funded the initial phase of the project from our own pockets, and over 300 people in over 30 communities entrusted us with their stories: community members and leaders, women’s groups, religious and traditional leaders, survivors, burial teams, health workers, and the traditional leaders of all 15 Liberian counties. To honor them, we now have an opportunity to establish and grow this archive, making it widely, freely and publicly available to researchers in sub-Saharan Africa and the U.S., applying its insights to other outbreaks and public health crises. To make this happen, we need to raise funding.

Our Team and Approach 

Two of us are Liberian former epidemiological contact tracers who went door-to-door for Liberia’s Ministry of Health during the outbreak. One of us survived Ebola herself, and one of us is an independent global health writer and researcher who lived in Liberia for ten years. We trained in mental health and trauma counseling, as well as ethical oral history techniques during crises. We funded this work from our own (not-very-deep) pockets, traveling as far as we could around the country—from densely-populated urban communities to remote areas we could only reach by canoe.

We saw the project as an act of radical listening: at the time, the voices of West African community members were not being heard loud and clear. Yet we knew their experiences would yield important contextual information, complementing the clinical and epidemiological aspects of the response to build trust and help save lives. We knew they would reveal compelling insights about the ways communities process epidemics and illness, and how interactions between international medical responders and communities are understood.

https://soundcloud.com/kate-thomas-1/sound-clip-from-ebola-survivor-angie-on-how-she-experienced-her-symptoms-after-losing-a-friend 

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The Insights

https://soundcloud.com/kate-thomas-1/blackie 

When incidents happened—the looting of Ebola treatment centers, or attacks on healthcare workers—we sat down with all parties: witnesses, perpetrators, staff, and government, so we could deeply understand why. One man who attacked an Ebola Treatment Center told us, in detail, why he instead believed he was saving his community. We traced superspreader events and chains of transmission, listening to the intersecting stories of families and groups of friends. These weren’t 30-minute conversations: they were in-depth, nuanced and detailed, often lasting several hours. The narratives span five languages but are predominately in Liberian English. Far more people than expected told us they believed they survived Ebola without treatment, a finding that could contribute to our understanding of the true case incidence of Ebola.

Our Invitation to You

We’ve worked quietly on this project for four years, and we have imagined the many ways this archive could serve African and international global health responders and researchers. Its insights could be applied to the ongoing Ebola response in the Democratic Republic of Congo—where gaps in community trust and understanding are costing more and more lives—and to public health crises more broadly. At last, we now have opportunities to make this collection widely, freely and publicly available, and to do that we need to secure funding.

If we reach our funding target of $12,000, we will be able to complete the collection and donate it to Harvard University’s Center for the History of Medicine, where it will be accessed in perpetuity. We will be able to transcribe the remaining 400 hours of audio recordings, and make them available to researchers at institutions in several sub-Saharan African countries, and we will collaborate with institutions to hold exhibitions in three continents. We will be able to make it available as a resource to educators. We will also be able to fairly compensate our Liberian team members for their phenomenal work. In short, we’ll be far closer to our vision of ensuring that community perceptions of infectious disease are at the very heart of outbreak response.

https://soundcloud.com/kate-thomas-1/sound-clip-from-ugly-papay-70-who-attempted-to-gain-entry-to-an-etu-to-find-his-children 

We believe that health equity, especially during epidemic response—when human connection is most in crisis—must mean deeply listening, with empathy, integrity, and time, to those most affected: patients, people and affected communities. Together we can make sure that these vital stories and the important information they contain do not go unheard any longer. If we surpass the funding target, we can consider the possibility of applying and scaling our approach to other global health crises in sub-Saharan Africa, including the DRC outbreak.

We're grateful for your consideration. Of course, we know that donations are not possible for everyone, so we'd also love to hear from you if you might know of a good funding fit for us, or if you want to support us in spirit.

Thank you!

Katherina Thomas, Angie Dennis, Abraham B. Fahnbulleh, and Paradise O. Young.

Contact: klgthomas@gmail.com

Photos by Ricci Shryock (top, Liberia, 2014) and Glenna Gordon (center, Liberia, 2014).

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  • Robert Richards 
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Organizer 


Katherina Grace 
Organizer
Jamaica Plain, MA
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