TUSKEGEE, Ala. — While preparing for a keynote address at Tuskegee University back in early 2013, Dr. Joan Harrell read a quote that she immediately knew would change her life forever.
She was reading comments from Ernest Herndon, the last survivor of the infamous U.S. Public Health Service Syphilis Study at Tuskegee, when one particular line struck her.
“He referred to himself as a nobody, and he also referred to the other man in the stories as nobodies. That really struck me to my heart,” said Harrell, now the associate director of community engagement for the National Center for Bioethics in Research and Healthcare at Tuskegee University. “At that very moment, I can still visualize the physical space where I was. I became extremely saddened, but at knew at that point a part of my work should include a method to help the descendants realize that they had to tell their stories. At that point, the stories were only being told from a clinical, medical, public health ethics perspective. There was a need for their voices to be included in the public discourse.”
Since that day, Harrell has made it her goal to give them that voice.
As part of her duties in community outreach, she has changed the face of the media operation that seeks to benefit the Tuskegee bioethics center. She helped launch a website that now houses photos, videos, history and stories from the descendents of victims of the study.
“She does a great job and is very professional,” said Dr. Cesar Fermin, the associate dean for graduate studies and research in the College of Veterinary Medicine, Nursing and Allied Health at Tuskegee University. “(She is) true professional who has done much good work for the Bioethics Center.”
Among the most difficult parts of her job, she says, is getting the descendents to open up to her about their personal experience with the study. Such openness is required, however, to promote the story and keep it alive to increase awareness.
“It is critically important that people don’t think, ‘Well, this is something that happened back in the 1930s, and it was revealed back in the 1970s.’ There’s still descendents,” Harrell said. “There is a descendent who is a granddaughter who was born with syphilis. There’s a woman who cannot have a descendent who is a daughter who cannot bear children, because her mother contracted syphilis from her father. People are still living not just with emotional and mental angst. They’re living with physical scars.”
Harrell, a graduate of Stephens College in Columbia, Missouri, has the heart of a story-teller, as she later received her Master’s of Journalism from Columbia University. She’s now also an ordained Baptist minister after graduating from the Chicago Theological Seminary.
All of the skills she’s fostered and developed over her career in communication and ministry have now found a shared purpose in her work today. As long as she is around and there are stories to tell of the effects of the Tuskegee syphilis study, Harrell will be the one doing her best to tell them.
“I can never feel what they’re feeling,” Harrell said. “I’m devastated when I hear their personal stories, so I can’t begin to imagine what that sense of pain must have been. It’s still very prevalent, very fresh.”
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