The Ever Changing Face of Disability
Georgetown University’s Kennedy Institute of Ethics (KIE) hosted its annual Conversations in Bioethics on Thursday, February 2nd. The event combines in-depth, semester-long study by students with a vital bioethics topic with visiting pundits. This year the KIE spotlighted Disability. The panelists were: Julia Watts Belser, Ph.D., M.A., M.DIV, an Associate Professor at Georgetown University, Lydia X.Z. Brown, a Georgetown Alum and a current law student at Northwestern University School of Law, Teresa Blankmeyer Burke, Ph.D., M.A. an Assistant Professor at Gallaudet University, Rick Guidotti, a photographer, John Hockenberry, journalist and author and Donna R. Walton, ED.d, CCBT, CEO of LEGGTALK. Each of the panelists has either experienced disability discrimination first hand or work with those who are disabled.
The panelists discussed their insights on disability, the definition of disability and the overt and subtle ways in which discrimination occurs. Each discussed their idea of what disability is, what it means to them and why it is important to keep the discussion respecting disability and what it encompasses open and public. As technology and medicine advance so do the roles of those who are disabled in society. Enhancements increase access but also serve to act as tools to “normalize” those with disabilities. The panelists discussed the roles they see themselves in and how their disability or working with those with disabilities increased their appreciation for the differences within each person.
Unfortunately, the panelists noted, they are often pressured to “normalize” their physical appearance to “fit in” with societal expectations. The conversation revolved around how moves in technology and medicine elevated others to try and standardize their disability while they were comfortable with who they are and how they look. Rick Guidotti, who once photographed fashion models, but began to photograph those with disabilities several years ago, spoke of the perception of beauty. He believes the established standard of beauty is restrictive and does not encompass the beauty of those who are different. The panelists agreed each disability has its beauty and freedom because the disability makes them unique.
Further discussion included the issues within the deaf community, led by Teresa Blankmeyer Burke; she is the first signing Deaf woman in the world to receive a doctorate in philosophy. Dr. Burke explained the cultural-linguistic view of those within the Deaf community. This view acknowledges the Deaf community as a minority group in society. Dr. Burke discussed the controversial topic of selecting to have a child who is Deaf. She and the panel discussed how some parents who are Deaf seek to have a child who is also Deaf.
The discussion included how some are born into the disability community while others are brought into it due to illness or injury. Dr. Walton, who was born able-bodied, lost her leg in her battle to survive cancer. She shared her experience of being viewed as a “whole, fully functional woman” and how that changed once she had her leg amputated. As a woman, she is not viewed as a person who would be interested in dating or having children. She shared how she didn’t ask her standard sexual history questions because the doctor assumed she was not sexually active.
Other topics discussed by the panel were: selective abortion, preimplantation genetic diagnosis, advancing disability awareness issues and creating health policy to reflect the needs of those living in the Disability community. All panelists agreed there needs greater to be a community and governmental support in the effort to advance the rights of those with disabilities.
1. “Conversations in Bioethics 2017: Disability.” Conference, Kennedy Institute at Georgetown University, Washington, DC, February 2, 2017.