The blog of the 2009 – 2017 Presidential Commission for the Study of Bioethical Issues

Experiencing Ebola: First-Person Perspectives from the Diaspora and Health Care Workers

Among the many unfortunate outcomes of the recent Ebola outbreak is how public reaction played out in the affected communities, both in the countries themselves and also in the western African diaspora in the U.S.

As the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) continued its review of U.S. engagement in the global response to the current Ebola epidemic, it considered the experience of people who were quickly swept up in the tumult.

Oretha Bestman-Yates, who immigrated to the United States from Liberia in 1987 and now serves as president of the Staten Island (New York) Liberian Community Association, said Liberians in this country — even those who had been here for years — suddenly found themselves subject to suspicion and discrimination.

“I was directly hit by the stigmatization,” she said. “I even lost my job because I visited Liberia in July and my son, who was proud to call himself Liberian-American, now does not want to be associated with anything from Liberia. We were targeted by our neighbors…As you boarded a train or ferry people actually stood away from you because of your accent.”

Chernor Bah, Youth Engagement Officer of A World at School and Chair of the Youth Advocacy Group at the Global Education First Initiative, discussed the epidemic from the perspective of communities in western Africa. Bah is a former child refugee from Sierra Leone and has connections through non-profits to all three countries affected by the epidemic.

He said there were unfortunate aspects of the international response that fed fears and paranoia in the affected countries that the Ebola infections were caused by some type of conspiracy. Bah said one response that was particularly jarring was the decision by certain countries to ban any flights from Sierra Leone and Liberia.

“That created a sense of isolation and also a sense of helplessness,” he said. “It allowed conspiracy theories to fester and it took so much time for the counter narratives to take root.”

A similar sense of isolation and stigmatization also affected U.S. health care workers who have worked the Ebola wards of western Africa. Patricia Henwood, Director of Global Health Initiatives in the Department of Emergency Medicine at the Hospital of the University of Pennsylvania, has served on two Ebola-related medical missions to Liberia. She spoke to the Commission the day after her 21 day isolation period from her most recent mission.

Henwood noted the surreal experience of working in the intense environs of Ebola treatment centers, “quietly crying in our facemasks and goggles while holding the hand of children as they draw their last breath,” and then returning to a growing wave of suspicion, inconsistent policies and calls for quarantines.

“At times it felt more of a challenge to manage the return to the U.S. than to do the Ebola work in West Africa,” she said. “We were touted as heroes when we worked in West Africa, but treated as pariahs when we returned home.”

The stories from the front-lines of the epidemic clearly moved members of the Commission. Christine Grady, R.N., Ph.D., Chief of the Department of Bioethics at the National Institutes of Health Clinical Center, teared up as she thanked the panel. “I just want to say I think you are all heroes and I wanted to shout out to the nurses because I am a nurse.”

Commission Chair Amy Gutmann said she has been impressed by how returning health care workers have been so “rationally passionate and passionately rational.”

As the fears in the United States appear to be dying down, Bah said he now finds it jarring how a disease that had so consumed American media and politicians just a few months ago is now largely ignored in the U.S., even as cases continue in Sierra Leone.

“Yesterday we had 21 cases in Sierra Leone,” he said. “We still have schools that have been closed down for a year. People are still dying every day, but we are speaking about Ebola as if it is in the past tense.”

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This is a space for the members and staff of the 2009 -2017 Presidential Commission for the Study of Bioethical Issues to communicate with the public about the work of the commission and to discuss important issues in bioethics.

As of January 15th, 2017 this blog will no longer be updated but continues to be available as an archive of the work of the 2009-2017 Presidential Commission for the Study of Bioethical Issues

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