EMORY UNIVERSITY | Rosemarie Garland-Thomson, professor emerita of bioethics and senior advisor at the Hastings Center, emphasized the power of narrative in bioethics, arguing that storytelling offers a more holistic and human perspective on medical decisions than clinical data alone at an event hosted by the Disability Studies Program on Oct. 7.
Rosemarie Garland-Thomson, professor emerita of English and bioethics at Emory University and senior advisor at the Hastings Center, a leading bioethics research institute, explained how narrative storytelling strategies can help communicate bioethical dilemmas at a speaker event titled “Changing the Story: Narrative Ethics Meets Disability Bioethics,” hosted by the Georgetown University Program in Disability Studies Oct. 7.
At the event, Garland-Thomson emphasized that medical jargon and data are neither an optimal nor holistic way to communicate the impacts of life-changing medical decisions faced by countless families every day.
“The truth of story, or what I’m calling ‘narrative evidence,’ carries the power to clarify and persuade because it is closer to the quick of human experience than counting and measuring truths,” Garland-Thomson said at the event. “Story, then, gives flesh and blood to evidence.”
Garland-Thomson was inspired to investigate the role of language in bioethics by a New York Times article that told the story of a couple’s decision to have an abortion because of a severe disability identified in a prenatal scan. The parents said that it was a loving choice. Garland-Thomson highlighted that before the advent of prenatal scans, parents would not have had access to the medical information that informed their choice.
“Our advantage was prenatal anonymity,” Garland-Thomson said. “We were generic pregnancies growing into ourselves without disruption by the medical surveillance that now at once protects and threatens people like my friends and me.”
According to Garland-Thomson, there was not a framework to show the parents what their child’s life could be like beyond what was described by medical terminology, and this variation in information may have influenced the parents’ choice.
“Like everyone else with a life of flourishing and joy, our lives are shaped by a balance of good fortune and grit,” Garland-Thomson said. “We are the flesh and the bone and the blood that have lived our lives, done our work, thought our thoughts.”
In reflecting on Garland-Thomson’s story, event attendee Wyatt Adamovich (CAS ’28) said that it is far too common for disabled people to be judged solely by their conditions.
“If we continue to only define people with disabilities by how they don’t conform to what we expect as the norm, then we will continue to promote a society where they aren’t allowed to live up to their full potential,” Adamovich told The Hoya.
Garland-Thomson argued that one of the caveats of the fast-paced evolution of medical technology is that people must put so much effort in trying to understand the mechanical aspects of health that stories about the flourishing and fulfilling lives of disabled people are overlooked. This imbalance influences the moral choices that people must make regarding themselves and their families.
“This freedom to choose who enters their family and our shared community is constricted then by the limited stories that are available to parents about possibilities for human flourishing,” Garland-Thomson said.
Joel Michael Reynolds, event coordinator and director of the Disability Studies Program at Georgetown, spoke on their personal experience of being introduced to the field of disability studies and mentored by Garland-Thomson during their time studying at Emory University.
“In addition to being one of the most accomplished scholars in disability studies and her helping to found the field, Rosemarie is one of the kindest, most thoughtful people I have ever met, and the extent to which she makes sure to live a life that is welcoming to others and not just talk about it with regards to the academy or medicine is something that I really value about her as a person,” Reynolds told The Hoya.
Garland-Thomson encouraged the audience to reimagine the life that the unborn girl mentioned in the New York Times article could have lived. She drew on the statements of a range of academics who, through historical, economical, philosophical, theological and other lenses, discuss the importance of how all humans are made, treated, loved and included.
“My story aims to persuade you that disabled people should not be eliminated from the world, but rather should be sustained more fully,” Garland-Thomson said.