On Feb. 2, the Kennedy Institute of Ethics (KIE) held its annual Conversations in Bioethics series examining disability through the personal narratives of six activists and scholars from the disability community.
Maggie Little, director of the KIE and Georgetown philosophy professor, moderated the panel discussion. Students and faculty from Gallaudet University, a leading university for the deaf and hard of hearing, also joined the audience.
After an address from Little, journalist and author John Hockenberry spoke on disability as a theme for mainstream discussion. “Disability is not a fringe issue as it is often seen,” he said, “but one of the issues of our generation and a lens for rethinking what normal even is.”
To articulate his point, Hockenberry, a paraplegic since the age of 19, rolled to the front of the stage showing off wheels decorated with colorful LEDs. He installed these lights at his daughters’ request, which to his surprise attracted classmates who would jump on his lap and go on rides with him.
“I made the decision to anoint my chair with this decoration,” said Hockenberry, “embracing the chair in a way that I didn’t realize the consequences of: that the children would all say, ‘Gosh, I wish I had a father who was in a wheelchair. My dad is so boring.’”
Julia Watts Belser, a theology professor at Georgetown, shared about her coming to terms with cerebral palsy. After being told repeatedly to “walk right,” she instead struck up a fondness for her peculiar gait. “One of my earliest memories is of listening to the ‘rock, slide, drag’ of my own step. That was like my signature—and I loved it,” she said.
For Belser, who now uses a wheelchair, disability gives renewed insight into her studies in Christian and Jewish traditions, particularly how it relates to her belief in being made in the image of her God that embodies both power and sacrifice.
Photographer Rick Guidotti spoke on de-stigmatizing disability from an artist’s perspective. As a former fashion photographer, he was always told what was beautiful. However a transformative moment came when Guidotti spotted a young girl with albinism waiting at a bus stop. Stunned by her gorgeous lack of pigmentation, he immediately wanted to photograph her. The bus arrived, however, and she soon took off.
“I’m so glad that happened,” he laughed, “because she was twelve and I would be in prison at the moment,” he said.
Donna Walton spoke on workplace discrimination. As a former Disability Program Manager for the Equal Employment Opportunity Commission (EEOC), she has worked to ensure that people with disabilities continue to be included and valued in the workforce.
“I never understood why the part of me missing was seen first rather than the whole person,” she said. Growing up, Walton said she was told repeatedly that she was less than a woman because she has only one leg. Now, as founder and CEO of The Divas with Disabilities Project, she works to prove that achievement, femininity, and disability are not mutually exclusive.
The panel also discussed the concept of deaf gain rather than hearing loss. “The signing deaf community has absolutely transformed…the way I see the world,” said Teresa Blankmeyer Burke, philosophy professor at Gallaudet University. She hopes to frame the deaf community in terms of intellectual, creative, and cultural contributions to society rather than a condition to be cured.
Lydia Brown (COL ‘15), an autistic activist, writer, and speaker, spoke on discrimination within the disability community. As a high-functioning autistic person, Brown has been criticized for not knowing what it is like to be genuinely disabled, and, as an asexual, queer-gender Asian American, for being unable to represent a community dominated by straight white men.
In closing, the panelists agreed that while this year’s discussion may have captured but a sliver of the full spectrum of disability ethics, beginning the discussion at all is a huge step forward.
“We’ve come a long way in finally getting together on these extraordinary conversations about civil rights, ethics, medicine, and civilization,” Hockenberry said.