Nodding Syndrome

Listen to “Nodding Syndrome”

Robert Oyo, 17, lies on the floor of his home in a village in Pader District, Uganda. A chain runs from his ankle to the roof of the hut. Robert suffers from Nodding Syndrome, a rare disease effecting young people in east Africa. Parents sometimes chain their children to prevent them from wandering aimlessly, a symptom of the disease. (Photo by Matt Kielty/John Alexander Project.)

I vividly remember the open sore on Benson’s chest. He was sitting in front of me in a jail in Malawi, the tenth poorest country in the world. Benson told me about the night he killed someone in self-defense and how he turned himself in to the police. They locked him in this jail and left him there. By the time I interviewed him, he’d been incarcerated for 28 months and had yet to see a judge or go to trial.

Jails in Malawi are notoriously unhealthy and overcrowded so in those conditions, Benson contracted scabies.  His chest sore oozed pus. So did the sore under his arm that he gingerly covered with a napkin.  I tried not to stare.

When the interview was over, guards escorted Benson out of the room. I climbed into an air-conditioned pick-up truck and eventually returned to my gated hotel where I ate a full meal sitting next to a swimming pool — all expenses paid. I felt dirty.


The dichotomy of my life and Benson’s life has stayed with me ever since that moment a few years ago. My privilege was never more clear. And, I was being paid handsomely to report his story while he remained locked-up. Worse still, as I write this, I’m uneasy because I don’t know what has become of him.

Perhaps because misery loves company, I was pleased to learn that reporter Matt Kielty had a similar experience after reporting in Uganda late last year. Matt traveled there to report on Nodding Syndrome for the Above the Fray Fellowship — a partnership between NPR and the John Alexander Project. He returned to the U.S. confused and troubled about “objectification.” As he put it “… making a name for yourself and trying to further your career… on the backs of these people who are suffering immensely.”

Matt shares his concerns and confusion on this HowSound. And we feature one of the stories he produced on the syndrome. (Here’s a link to the other story.)

While you listen, I’m going to find out what happened to Benson.

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