Eradicating pathology, preserving diversity. Genetic deafness research in 20th century America.
Dr. Marion Schmidt
Saturday 17th June 2017 9 am//Venue to be announced soon
Is deafness a disability to be prevented by genetic technology or merely a non pathological variation that has given rise to a sociocultural minority? Is it ethical to prevent the birth of a child with deafness, and are deaf parents acting immoral if consciously choosing a deaf child? Over the last 100 years, American geneticists have shifted from a clearly medical-pathological defnition to acknowledging Deaf culture and the Deaf community, conscious of the potential ‘genocidal’ impact of reproductive technology. I will ask why, and show an arc from the late 19th century triumph of oralism– the practice of teaching lip-reading and speech at the exclusion of sign language –, with its strong ties to medical and eugenic prevention to the emergence of alternative, sociocultural defnitions of deafness among geneticists and other professionals concerned with hereditary deafness. In particular, I point to the importance of the psychosciences in forming genetic counseling and beliefs about identity and disability. Negotiations over deafness as disability or difference are an integral part of 20th century debates over citizenship, national identity, and overcoming otherness. I talk about how Deaf perspectives were pushed out of science and medicine, of how they slowly entered it again, and what happened when scientists began to pay attention to their d/Deaf clients and patients.
Bio note: Currently Marion Schmidt is an affliated research partner at the University College Freiburg division for Science and Technology Studies. Her research concerns the overlap between the history of biomedicine, disability and the psycho-sciences, with a particular focus on US and German history. She was a 2014/15 recipient of the Woodrow Wilson Foundation Charlotte W. Newcombe Dissertation Fellowship for Work on Religious and Ethical Values, and has also received teaching fellowships for classes on disability, gender and science. She is dedicated to anchoring disability history more strongly in European academia and am an editorial board member of the journal Considering Disability.