In a talk titled “Disability Bioethics: Toward Theory and Practice,” Rosemarie Garland-Thomson, an English professor and the co-director of the Disability Studies Initiative at Emory University, discussed her unique approach to bioethics using her literary background. Throughout her lecture, Garland-Thomson analyzed elements of literary style to offer a humanized view of disability and to strengthen the cultural, political, and material climate in which people with disabilities can flourish.
“I only know how to do one thing, and that is be an English teacher,” she said, addressing the tactics she uses to teach about bioethics.
Garland-Thomson is trying to develop a disability bioethics curriculum that uses the skills, methods, perceptions, and premises of literature and cultural studies to bring ideas and knowledge forward in bioethics.
The talk was part of the Park Street Speaker Series, a series established last year that aims to engage students by exploring values and ethics related to health care practices. The event was sponsored by the Park Street Corporation and Boston College’s Institute for the Liberal Arts.
Garland-Thomson began her talk by posing a question to the audience.
“What kind of world might we want to build and inhabit together?” she asked.
In response to this question, Garland-Thomson described her theory of “conserving disability.” Disability, Garland-Thomson said, provides human communities with opportunities for expression, communication, resourcefulness, and relationship.
Because disability is a natural facet of the human condition, Garland-Thomson argues, we should recognize what we gain from disability and what we lose when disability is eliminated from our shared world. Her goal for the talk was to bring light to the cultural and material advantages that disability offers. Disability conservation promotes human biodiversity.
Garland-Thomson described the elements of what she called a “habitable shared world” for people with disabilities. She argued that we need to design environments that anticipate a spectrum of various disabilities to enhance everyone’s well-being and performance. She expressed the need for disability-friendly public spaces and communication tools to make the world more accessible for those with disabilities.
“For humans to thrive, we need to be ensconced in an environment that sustains the particular form, function, and needs of our bodies.”
— Rosemarie Garland-Thomson, an English professor and the co-director of the Disability Studies Initiative at Emory University
“For humans to thrive, we need to be ensconced in an environment that sustains the particular form, function, and needs of our bodies,” Garland-Thomson said.
She explained how politics plays a role in her idea of a “habitable shared world.” This includes the goal to provide equal access to open and integrated institutions such as the workplace, the marketplace, and the media. It also includes access to public institutions like schools, health care centers, archives, and governmental spaces.
“An accessible, sustainable environment creates social diversity and supports the civil and human rights based on understandings of disability,” Garland-Thomson said.
She then led a guided reading, using her literary background to show how narratives may humanize a disabled experience.
Garland-Thomson presented a reading of a New York Times Magazine article from 2003 titled “Unspeakable Conversations” by Harriet McBryde Johnson, an advocate for the disabled. McBryde Johnson is disabled and works as a disability rights lawyer.
McBryde Johnson’s story is a personal narrative that shows what it is like to live as a disabled person in today’s world. McBryde Johnson’s narrative describes two encounters with Princeton University’s Peter Singer, a utilitarian philosopher and bioethicist whose views on bioethics she strongly opposes.
McBryde Johnson uses literary devices and techniques to humanize the disabled experience and contradict Singer’s work. She begins with a question and an allusion to Singer’s utilitarian philosophy.
“Should I have been killed at birth?” McBryde Johnson wrote.
McBryde Johnson’s story is about issues of humanity, like infants who were disabled at birth, and is told through her unique point of view. She presents herself as a disabled person with close ties to family and meaningful ties with the world.
Garland-Thompson concluded that sharing and analyzing McBryde Johnson’s story has an important purpose.
“It provides for us a model of a habitable world, a world that wants me in it,” Garland-Thomson said.
Featured Image by Savanna Kiefer / Heights Editor