Congo Ebola crisis: To fight disease, an anthropologist heals distrust

The crisis in Butiaba began with a grave.

When a man named Makombela got sick in September in this isolated village in Congo’s lush green eastern borderlands, his family did just what the radio PSAs and awareness posters had instructed. They called an emergency number, and told them they had a possible Ebola case.

And when he died at a clinic, 50 miles away in a town they had never seen, the family swallowed their fear and consented again.

OK, they demurred, he could be buried there, in a cemetery shared by strangers.  

But back at home in Butiaba, a cluster of mud-brick houses huddled at the edge of the rainforest, the message hadn’t gotten through. The chief had already dispatched a group of young men to dig a grave in the town cemetery, a hacked-out clearing a few hundred meters into the forest. And now it sat gaping and empty like a crater.

This was a bad omen, said Moshi Katwakima, an elder. A man with an air of quiet authority, he told the chief that he had seen what happened when graves were left open in the past. Failed harvests. Scores of young people suddenly unable to find work.

The conversation quickly turned barbed. Why do we have to follow their rules, they wondered about the Ebola responders, when they clearly don’t respect ours?

When the young men in the village caught wind of the conversation, they decided on a plan. No more Ebola responders would be allowed in Butiaba, or on the dirt road that passed through the village. They couldn’t be trusted. Not after this.

**

Fifteen miles away, at the World Health Organization logistics base in the city of Mambasa, Dr. Julienne Anoko’s phone began to ring.

Since the world’s second-most deadly Ebola outbreak began in eastern Congo nearly 1 1/2 years ago, Dr. Anoko is often called when relationships with local communities get complicated. A Sorbonne-trained anthropologist from Cameroon, she has the job of heading off conflict between Ebola responders and the communities they’re meant to protect.

Slight and compact, with an easy laugh, Dr. Anoko seems at times the embodiment of what she hopes the Ebola response can do better: take up less space. Talk less and listen more. Disease outbreaks, she is fond of telling her colleagues, are often social crises as much as they are health emergencies.

That work has become especially urgent as responders reel from the murder of four of their own in two attacks by local militias on the night of Nov. 27. In 2019, nearly a dozen health care workers were killed and more than 80 injured in nearly 400 attacks on health facilities.

Meanwhile, the current epidemic has infected at least 3,200 people, and killed 2,200, since it began 16 months ago. There are no simple answers to why people keep dying this way. But Dr. Anoko also knows from two decades of experience in responding to disease outbreaks, from Zika in Latin America to Ebola in Guinea, that there are often good reasons for people to fear the experts who, from the outside, seem to have all the answers.

“What people want in times of suffering is empathy and compassion,” she says. What they often get, instead, is the brusque urgency of a giant international health bureaucracy trying to stop a disease from spreading.

And so she leads by example. Crawling into body bags and being carried through a town in the rainforest to understand complaints that the dead aren’t being carried gently. Crying with grieving mothers. Arm-wrestling teenage boys or learning a local dance, to break the ice. 

Today, as her colleagues explain the crisis in Butiaba, she imagines herself as part of one of the farming communities here who live and die by the loamy red dirt that squishes underfoot. Here, stability depends on the health of tidy rows of peanuts, beans, rice, and corn that flank the village. It is a fragile way to live, and the unseen forces that govern it can feel mercurial, even vengeful.

The problem, she explains, was us. We buried an elder far from home. We neglected to tell the leaders of his village. We made them afraid.

“So now we need to fix it.”

**

In theory, there has never been an easier time to fight Ebola. Since a 2013-16 outbreak killed more than 11,000 people in West Africa, researchers have developed and tested a highly effective vaccine. It has now been used to immunize nearly a quarter million Congolese, and a second vaccine has recently been introduced. Treatments are improving.   

But there is theory, and then there is the eastern Congo.

For more than two decades, the region has been convulsed by war, which neither the Congolese government or the world’s largest United Nations peacekeeping force has been able to stop. In its major towns, baby-faced soldiers patrol the streets with AK-47s slung over their shoulders like school backpacks. U.N. tanks roll through neighborhoods of tin-roofed houses and tiny convenience stores, swiveling their guns this way and that in warning to would-be attackers. And still, somehow, massacres and kidnappings by militia groups go on, month after month, year after year.

Locals have a lifetime of experience watching outsiders – from the capital, Kinshasa, from the U.N., from international aid groups – arrive with cash and promises they can’t keep. And in their eyes, whatever the crisis, someone always stands to get rich.

Although the WHO and the Congolese government say the response to Ebola is woefully underfunded, from a local perspective it is practically printing money. International organizations working for La Riposte­ – the response – jostle along the region’s stomach-churning dirt roads in new SUVs, booking out hotels and building state-of-the-art disease treatment centers in the shadow of crumbling public hospitals.

Many here see the disease, at worst, as a complete fabrication, and at best a smokescreen, yet another excuse for outsiders to get rich off the region’s suffering.

That puts Dr. Anoko in a paradoxical position. No matter how many times or how gently she tells people that she too is a mother, she too is an African, she is also an outsider here. And workers like her have been hired to make the response work better, “not to criticize the institutions doing the responding,” says Adia Benton, an anthropologist at Northwestern University who has researched international public health responses in Africa.

The scholar in her, meanwhile, often hungers to slow down. She has always been dogged and exact in her work. Back when she was a young anthropologist in training, she spent weeks wandering around a French village learning about their wine growing culture (“everyone wondered who that black girl with the foreign accent was,” she recalls), and then years learning to hunt with a group of hunter-gatherers in Cameroon. Now, she is lucky if she can spend more than a day in one village, untangling as much as she can of its history and traditions before she is back on the road, headed to the epidemic’s next crisis spot.  

Most days, the best she can do is just get her colleagues to look up from their PowerPoints, which swarm with numbers and the cold, clipped language of disease control – the deceased and the cured, suspected and probable and confirmed cases.

“It may seem strange, but it’s easy to forget that Ebola cases aren’t just numbers, they are people,” she says. “People we are meeting at the worst moments of their lives. To understand what they are doing, especially when it doesn’t seem logical to us, we need to feel what they are feeling.”

It isn’t doctors, Dr. Anoko knows, who decide whether people follow the tradition-bending demands of this disease, whether they stop cuddling their sick children or wiping the brows of their feverish spouses. It’s worried mothers and heartsick husbands and grieving friends.

“That’s a hard thing to accept, I know, for scientists who spent 10 years studying to be where they are – that it might be a woman in a village with no [formal] education who decides if their protocols work,” she says. “But it’s the truth.”

And so there she is, asking to be carried in a body bag. (Once she instructed burial teams on how to carry the dead more gently, she says, people stopped objecting to their loved ones being buried in sterile biohazard bags.)

And there she is gathering community leaders after an Ebola treatment center was burned to the ground in Butembo, their anger still a live wire. Not because the treatment center had burned. But because no one had thought to ask them if they wanted it built in the first place.

So she asked.

Yes, they assured her, they did want another clinic, but it must be built with their own hands. A place made by the sweat of their women would sacred, they told her. (Not to mention, she knew, if leaders bought into the clinic, they might be able to keep the local militants who had likely burned its predecessor at bay.)

In the end, locals rebuilt and blessed the clinic. It hasn’t been attacked since.

But often her work is far less dramatic. She often spends hours in the back of SUVs bound for this and that village resistant to the response, bouncing along dirt roads cratered with holes as wide as the car that turn into four-foot-deep mud puddles whenever it rains. Sometimes, there is a crackle of gunfire ahead and the car turns back. Sometimes the road ends and she has to continue on foot, squelching through the mud in black rain boots.

And when she arrives, after she settles into the town’s dark airless concrete schoolhouse or under a drooping mango tree, her job is often to sit and be yelled at.  

People have always gotten sick here from diseases we couldn’t cure, someone might ask. Why didn’t anyone come to help us then? 

How can you expect a mother to let strangers take her sick baby away from her?

Why did we never see this disease before all of these foreigners arrived? Why are you trying to kill us?

“Why hasn’t anyone from our village been hired to help with safe Ebola burials?” a man asked her recently at a community meeting, referring to the teams in spacesuit-like protective gear who urgently descend on the dead with jugs of chlorine. “We don’t know these people who are taking our families away.”

No matter how many times she has heard a particular complaint before, Dr. Anoko always writes it down. And she always says thank you.

“This will help us make the response work better,” she says, after listening to someone tell her for the hundredth time that they have heard no one comes out of an Ebola treatment center alive. “Thank you for coming to speak with us today.”

**

In those stuffy rooms, on those long afternoons, Dr. Anoko doesn’t say it, but she thinks sometimes, I know how you feel.

Richard Valery Mouzoko Kiboung was a Cameroonian epidemiologist with high cheekbones and a wry sense of humor, a man with a long history of slogging away at disease outbreaks the world seemed to have forgotten. But before any of that, he was also her best friend’s baby brother, the eager younger sibling hovering on the edge of their after-school games in the Cameroonian city of Bafia.

And so, when there was time at the end of their long days, they filled each other in on 20 years of missed biography. He spoke to her in Bafia, their mother tongue, which had grown distant and awkward on her lips.

“He reminded me of the words,” she says. And when he wrote her WhatsApp messages, he always began them the same way.

Bonjour grande soeur. Hey, big sister.

On April 19, Dr. Anoko returned to WHO headquarters to a hushed scene. Colleagues told her that gunmen had stormed a staff meeting at a hospital in Butembo, where she was based at the time. “Ebola doesn’t exist. You’ve invented the disease,” they allegedly yelled as they sprayed the room with bullets. Two people had been injured. And Dr. Richard was dead.

**

He was gone and she was still there. Still convincing the communities his killers had come from to trust her. Still trying to end a disease, in communities that often seemed to resent the effort.

Outside the Ebola bubble, meanwhile, life went on. Her sister sent photos of her niece’s fourth birthday in Yaoundé, Cameroon, and she ached for the milestones she was missing. Her husband texted his Bitmoji blowing her a kiss, and videos from their teenage son’s jazz band concert. Soon, he’d graduate from high school. She didn’t want to miss that too.

She didn’t go home in December, when bullets from militants punched holes in the wall of her hotel room in the city of Beni and she slept on the floor for three days wondering if they’d be back. She didn’t go home when one treatment center was burned to the ground, and then another. And while she did go home to bury Richard, flying in the WHO-chartered plane beside his coffin, she came back.  

“It was the greatest mistake they could have made to kill Richard. Now everything we do is to continue what he started,” she says.

Everything, including the goat.

Because in the end, that is what drove Ebola out of Butiaba, the village with the empty grave. Not the checkpoints that line the main roads here, manned by listless soldiers with AK-47s and women with chirping electronic thermometers. Not the cheesy awareness jingle that crooned out of tinny speakers across the region. Ebola, ebola, invisible enemy.

It was 50 kilos of rice, enough neon red palm oil to fill a bathtub, and a goat.

When Dr. Anoko arrived in Butiaba a few months ago, just after the grave had been opened, that’s what the chief told her they needed. To make amends to the spirits angered by the open grave, he explained, they would perform a ceremonial burial. Lay a banana frond – “the lifeblood of our village” – in the grave and then hold the funeral. And then there would be a party to celebrate the old man’s life – hence the food.

So Dr. Anoko secured a budget of $179 and made her purchases.

“What I’m trying to give people is the kind of compassion I have looked for in the difficult moments in my own life,” she says.

It was a small victory. But all around, the response was still struggling. Every day, wheezing 18-wheelers and old passenger buses passed through the dusty main drag of Mambasa, a trade hub where Ebola was spreading. A sick person could be in Kisangani, a city of 1.6 million, within a day. And from there, head down the Congo River to the densely populated capital, Kinshasa.

A few days after the ceremony, a Red Cross burial team was turned away from a village two hours from Mambasa. The community wouldn’t let them out of their cars to bury a man who had died there. “We’ve never seen you here before,” one leader told the team.

And why should they do any different? Dr. Anoko thought aloud.

“We are managing an outbreak in a place where people have been suffering for two decades, where they’ve been raped and slaughtered. And yet we want them to believe it’s Ebola they must be most afraid of,” she says.

Had she had the chance with that village, she thought, she would have come sooner. She would have been there to ask what the local burial traditions were and to begin negotiating.

It might not have worked. But it is always worth trying, she believes.

“What I say to people is, no, [Ebola] isn’t the most terrifying thing you’ll ever see,” she says “But this is a terrifying thing you have control over. This is one story whose ending you can write.”

Kudra Maliro contributed reporting.