In reporting an epidemic, narratives of life on the ground add impact and color to hard data on deaths and recovery rates. First-hand accounts of how the disease and local conditions touch people in the region bring the story to life -- and are just as effective in mobilizing international response, says Ebola Deeply's managing editor, Kate Thomas.
In 2007, the year I first moved to West Africa as a journalist, I visited Phebe Hospital in Liberia’s Bong County, to report on health system gaps in the wake of the country’s 14-year war. I remember long corridors the color of hospital scrubs, and a maternity ward without light or fans. The day I visited, the morgue was full. I sat with a woman who had just given birth; in the cot next to her healthy baby was the body of a newborn who didn’t make it. That year, the statistics were grim. One in four children did not reach their fifth birthday. There were 30 Liberian doctors; one for about 100,000 people. The government’s health budget was $10 million.
The minister of health at the time, Dr. Walter Gwenigale -- who retired in 2015, well into his 80s -- was worried. He was spending his Saturdays on duty as a surgeon, adding one more pair of hands to the small physician data bank. The statistics, shocking as they were, weren’t bringing in resources, he said. Liberia’s health system had been largely in the hands of emergency NGOs during the war years, but as the country pulled away from a narrative of conflict, many essential health programs dried up. Donors were pleased by the prospect of calm in Liberia, but not enough to bolster it. The statistics whispered to the world; they should have been cries for help.
Data is critical to any public health response, but on its own it is not enough. Stories color data with meaning, infusing them with empathy and a sense of connection. If I tell you that the maternal mortality rate in the West African country of Guinea-Bissau is 1,000 per 100,000 live births, it’s a tough figure to stomach. If I then share a story about the delivery room on the country’s island of Bolama, where leg stirrups hang either side of an open window giving onto the main street (in the absence of electricity, the only way to let in light), the data begins to sink in. Just as both quantitative and qualitative studies are essential to research, we need both facts and stories to make sense of a situation. The two have a symbiotic relationship; when they are in balance, any public health response is smarter, faster and deeper.
Ebola taught us that. In the first few months of the Ebola outbreak, data lagged stories. Responders struggled to pin down accurate case numbers, chasing moving targets as the outbreak shifted and spread. On the ground, fact-based messaging was fragmented, incoherent and inconsistent. Stories grew tall, feasting on the fear that moved into the gaps. Rumors -- essentially super-charged stories, accelerated by the force of adrenalin -- spread quickly. One rumor had it that salt water could cure Ebola; another said that the disease was caused by poisoned well water; another, that Ebola had been brought by a cursed queen from the underworld. When community mobilizers delivered facts to doorsteps, the rumors slowed. The United States and Europe were not immune to rumors, either; amid a shortage of facts, fear bred harmful narratives, clouded judgment and influenced policy. All of these bloated stories were sense-making mechanisms: they gave communities something to hold onto.
When we launched Ebola Deeply in October 2014, it was with the aim of providing the public and the global health community with more and deeper contextual information: we worked to balance science and stories, facts and feelings. An outbreak cannot be understood in pieces, and we reasoned that access to better information could help mend the holes. We particularly wanted to amplify the stories of experts left out of critical early conversations on Ebola, such as community leaders, religious leaders and local health workers. Their stories helped us broach the empathy gap between West Africa and the rest of the world -- a precursor to Ebola, and a contributing factor to its spread.
Some of the Ebola survivors we interviewed said they found the experience of sharing their stories cathartic. Interviews, a vehicle for the need to talk, often ran over as words poured out. Stories also provided a lens into the everyday lives of communities in West Africa; our team of reporters from Guinea, Liberia and Sierra Leone knew the context, understood the deep trust issues that plagued the response, and pitched stories that reflected the concerns of those most affected by the outbreak. Of course they are storytellers by nature, but they believed that their local reporting could also help, bit by bit, to shift community perceptions of Ebola and contribute to curbing the outbreak. It did. The Ebola outbreak slowed once the public health community began to crack the science and the stories that sparked its spread. Neither approach would have worked alone.
Although we may see further resurgences of Ebola in West Africa, we can now celebrate the end of widespread, active transmission in the region. But the statistics are still grim. Across the region, 512 medical staff died from Ebola. In Liberia, a baby now has a one in 13 chance of not reaching his or her fifth birthday; in Guinea, that figure is one in ten. And emergency Ebola health programs are ending, just as they did in the wake of West Africa’s past conflicts. There is a drive to invest in long-term health strengthening, and some donors and external organizations are backing the provision of essential public health services, but that’s not enough.
As the affected countries pull away from the Ebola narrative, let’s not forget the stories. Just as we keep on top of data, we should continue to engage with stories from places no longer in the grip of crises. With the advent of approaches such as narrative medicine, health and stories are working more closely together. Public health reports such as Biosocial Approaches to the Ebola Pandemic, co-authored by Dr. Paul Farmer, are drawing on both stories and science. The world is increasingly connected; we have more tools and mechanisms for storytelling at our disposal than ever before.
So let’s keep reading the work of local journalists. Let’s look out for the photography, literature, music and art that comes from regions recovering from crises, for they tell stories, too. Stories will never give us the full picture -- truth, if there is even such a thing, is made of many different fibers -- but neither will data, for it, too, can be manipulated, hidden or lost. To be truly accountable in the wake of the Ebola outbreak -- and during future public health crises -- we must keep our eyes on both.
Cross-posted from Ebola Deeply.
Kate Thomas was the managing editor of Ebola Deeply from its launch in October 2014 until its closure in January 2016. Before Ebola, she covered infectious disease outbreaks, including lassa fever and cholera, also reporting on non-communicable diseases, access to health during conflict and health systems challenges across the global south. Her research interests include the intersection between medicine and narrative, medical anthropology, and cultural interpretations of illness. Her website is www.katherinathomas.com.