I don't want to hear you, but I'd like to see you

Abstract

Purpose: To compare attitudes towards clinical genetics between respondents who are Deaf and those who are Deaf-Blind. Previous studies involving Deaf patients have been limited by the barriers inherent in obtaining responses in a clinical setting as well as by a language barrier. This is the first work that elicited non-censored responses from Deaf and Deaf-Blind adults.Methods: Participants in a retreat for Deaf-Blind adults were interviewed concerning their views relating to genetic counseling and treatment of hearing and vision loss. Respondents consisted of Deaf adults (those who identify as part of the Deaf culture in the U.S. and Canada and whose primary language is American Sign Language) and Deaf-Blind adults (those who have both hearing and vision loss). Initial interviews were conducted in-person in the respondent's preferred language and mode of communication. Communication was direct (no interpreter needed) and included American Sign Language (ASL), tactile ASL (the Deaf-Blind respondent read ASL by placing his/her hands on the interviewer's hands while the interviewer signed), and spoken English. Follow-up interviews were obtained within a six-month period.Results: The Deaf adults had negative views towards medical genetics, drawing parallels between treatments to “cure deafness” with eugenics and genocide. However, one respondent would be interested in genetic counseling if the medical personnel had positive attitudes towards the Deaf and would meet the needs of Deaf clients. The Deaf-Blind adults fell into two categories. Those whose communication included both signing and oral methods were interested in preserving both their hearing and vision. Those who identified as culturally Deaf had similar responses as the Deaf adults in terms of resenting the idea of “curing deafness,” while at the same time interested in any avenues that would preserve or restore vision.Conclusions: To provide appropriate services to Deaf and Deaf-Blind adults, it is imperative to establish trust and effective communication. Identifying a contact in the Deaf community who can serve as a cultural mediator is an important tool. In addition, expanding the time frame for clinical appointments and utilizing the preferred mode(s) of communication conveys respect and allows for successful communication. The attitudes of Deaf-Blind adults towards medical interventions differed between those who communicate orally and those who identify as culturally Deaf.