The Danger in Losing Sight of Ebola Victims' Humanity

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Sierra Leone’s troubled history is written into its landscape. If you walk the roads around Kono, you’ll see shelled structures that were once beautiful homes. A brutal 11-year civil war ended 12 years ago, displacing hundreds of thousands of Sierra Leoneans. The war’s legacy is everywhere: in the bullet shells buried in dusty roads, in the thousands of ex-rebels who now drive motorbikes for the extra cash, and in the amputees populating cities and towns. Almost everyone carries a war story, and has lost loved ones in the conflict. The war and post-war period have left a legacy of lasting fear and suspicion of the government and of humanitarian aid organizations, which often leave communities to make do when funding runs out.

This distrust is amplified by a history of the government falling short on its promises. For example, in 2010 the Ministry of Health launched the Free Health Care Initiative to provide free health care for pregnant and lactating mothers and children under five. Four years later the reality, at least in Kono, is that these people are often still asked to pay for care at public hospitals. Drugs are in short supply, and health workers implement fees to maintain their inventory. Often, health workers cannot offer essential care because the necessary equipment, drugs, and trained professionals are not, or never were, available.

When a crisis like Ebola strikes in this context it is not surprising that aggressive, opaque public health measures are met with suspicion, resistance, and anger. The Ebola task force meetings I continued to attend increasingly focused on these community level challenges. The hour long task force meetings turned into four hours, circling around and around one issue: “the lack of understanding.” Funding began pouring in from the large NGOs for door-to-door sensitization. Pickup trucks with large speakers drove slowly through the market each day, blasting: “It feels like malaria, but it’s not! If you want to survive, go quickly to a facility!” One day, my motorbike taxi was halted as a several-thousand-person “Ebola protest” marched through town, families vehemently chanting as if to scare the disease away.

As public health authorities in Freetown and Kono—as well as the international media—increasingly complained of how people in Kailahun “did not understand,” the situation was spiraling out of control. Several times, patients were forcibly removed by their relatives from isolation wards and disappeared into the rural provinces. This, too, was interpreted as a result of ignorance, and inspired a new round of educational initiatives arguing against the use of local healers and traditional medicine in Kono and elsewhere.

“Many people in Sierra Leone, where an Ebola epidemic has gripped the country for the first time, refuse to accept that the disease can be tackled by Western medicine,” a writer for The Economist’s Baobab Blog explained. As the outbreak continued to spread, so too did a shallow discourse of socio-cultural explanations. Health authorities, experts, and the media increasingly blamed communities for the continued spread of the disease.

In public health, the emphasis on “harmful behaviors” arising from ignorance fails to acknowledge the complex socioeconomic factors and structural conditions that can lead to poor health. In the wake of the first Ebola cases in Guinea, the Guinean government and later the Sierra Leonean government launched a massive campaign to persuade people not to hunt and consume bushmeat, which is thought to carry Ebola. Though well-intentioned, these campaigns did not adequately consider that malnutrition is widespread in rural West Africa, and villages in which the population heavily relies on bushmeat are often healthier—in our experience, they even have significantly lower rates of malnourishment. It wasn’t just an issue of people “not knowing” not to eat fruit bats and gorillas—bushmeat was their only source of protein. Continuing to eat it can be understood as a rational decision based on a risk assessment—malnutrition will likely always lead to more deaths in West Africa than an Ebola outbreak.

But I’ve also observed through four years of fieldwork in Sierra Leone that public health interventions that rely on the passive reception of “medical facts” by target communities and that hinge on getting "them" to think like "us," are simply ineffective. To health workers, taking patients home to die in surrounded by their families, to be collectively buried and remembered in their villages might be considered “irrational” or “contributing to the spread of the disease.” But these practices also allow for a kind of solidarity and resilience in the face of capricious, cruel disease.

Over the past several weeks, things took a definitive turn for the worse. Sheik Humarr Khan, the physician leading the country’s Ebola response, contracted the disease and died along with several of his colleagues. This threw the healthcare system into panic; many doctors closed their clinics, nurses went on strike. Ebola has been identified in all but one district in the country, with up to 20 new confirmed patients per day.

On July 31, President Ernest Bai Koroma, recognizing the need for urgent action, declared a “state of emergency” which enabled the response to be further militarized. Houses in Kono that are connected to Ebola patients are now surrounded by soldiers and police 24 hours a day (with varying efficacy) and entire swaths of the country are now cordoned off. In neighboring Liberia, clashes broke out Wednesday in a slum that had been forcibly quarantined. While urgent action is warranted, such measures may only serve to further dissuade people from going to clinics and facing the shame and the loss of control that comes with being quarantined.

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Responding to Ebola requires putting patients and families into inescapably horrific situations. Being diagnosed with the disease means confronting and accepting the absolute terror of a likely-terminal condition—I am probably going to die. It requires accepting the results of an opaque test done in a faraway lab even when it still just feels like the flu. It then requires accepting that you may never have human contact again for the rest of your life—and that the only communication you will have will be with a masked man tasked with isolating you, not saving you. In the United States, we expect that such a process would be accompanied by humane counseling and social support, by health workers guiding families through letting go and last goodbyes.

But in a public health emergency of this scale and danger, patient communication and counseling can be brushed aside under the pretext of urgency. Ebola patients can be considered mere disease-carriers rather than complicated, emotional human beings—and while at the highest levels reducing transmission is the top priority, neglecting the humane aspects of care can gravely undermine the public health response.

As tensions between health workers and patients have gotten more heated, discussions of the disease have begun to take into account social context. "You may not be able to walk in and just say, 'OK, who in this village has Ebola?' That may not be something that's culturally acceptable," a Johns Hopkins epidemiologist said on National Public Radio.  But while cultural differences could contribute to the tension, it may also be that more universally human processes are going unacknowledged. In what culture would it be acceptable or productive to walk into a village and so brusquely identify and inform people that they have only days to live?

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Presented by

​Raphael Frankfurter

Raphael Frankfurter is the executive director of Wellbody Alliance, a nongovernmental organization based in Sierra Leone.

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