Bioethics and the Deaf Community
Joel Michael Reynolds, Christine Wieseler in The Disability Bioethics Reader, 2022
In many ways, the history of bioethics parallels the recent history of the deaf community. Although the previous pages do not come close to providing a comprehensive list of the ethical concerns and issues related to bioethics and the deaf community, I hope that they will provide food for thought and a starting point for further discussion. The convergence of emerging technologies has put us at a crossroads; the future of the deaf community is in the hands of today’s medical and scientific researchers. Positing the signing Deaf community as a cultural community that has resisted the biomedical establishment’s attempts to eradicate it has opened people’s eyes to a different viewpoint on hearing variation. The need for deaf people to engage in more discussion about bioethics with bioethicists and researchers is more critical today than ever. From the eugenics movement of the late nineteenth century to the current dialogue about the use of genetic technology in the deaf community, questions about the morality of curing, abating, or preventing hearing loss abound. Opening up dialogue between researchers and different members of the deaf community, whether hard of hearing, deaf-blind, oral deaf, late-deafened, or culturally Deaf, is imperative. Although these discussions may prove to be difficult and painful and may not result in universal agreement regarding a “deaf bioethic,” encouraging this discussion to unfold in the realm of academic bioethics as well as Deaf studies scholarship offers the potential of better understanding, and one hopes, more thoughtful and ethical practices.
Research Methods with Disabled Populations
Francis K. O. Yuen, Carol B. Cohen, Kristine Tower in Disability and Social Work Education, 2013
Data analysis from six focus groups conducted during the survey development phase of the HIV/AIDS Knowledge survey for use with individuals who are Deaf revealed several themes that contributed the final computerized, self-administered HIV/AIDS knowledge survey in American Sign Language. Focus groups comprised of deaf adults from various sectors of the deaf community were shown videotaped ASL versions of potential survey items. Results from the focus groups demonstrated that there is a segment of the deaf community with minimal sign language skills who did not readily comprehend the level of ASL used for the videotaped translations. To successfully meet the needs of the greatest number of deaf individuals whose main form of communication is sign language and who are not fluent in written, spoken or signed English, it was suggested that we include two versions of ASL, one which would meet the needs of deaf individuals who have higher level ASL proficiency, and another version created specifically for the segment of the deaf population which communicates using “highly contextual” ASL. Providing these two versions of ASL made the survey more accessible all members of the deaf community. It was crucial to include accessibility to include individuals with minimal language skills because these are the individuals who have been systematically excluded from surveys due to their lack of English literacy and their level of sign language skills.
Medical students learn ‘sonic alignment’
Alan Bleakley in Educating Doctors’ Senses Through the Medical Humanities, 2020
A key related issue is that of the medicalisation of deafness. A more radical, politicised deaf community resists framing deafness as a disability that must be attended to medically. The sharp end of this is the debate about the value of cochlear implant technologies (Moir and Overy 2014). The majority of people who have had cochlear implants complain that their hearing of music is greatly compromised. Topics such as these invite study through the lenses of the medical humanities.
Working with British Sign Language (BSL) interpreters: lessons from child and adolescent mental health services in the U.K.
Published in Journal of Communication in Healthcare, 2018
The Deaf community has its own identity, culture, and history. Deaf people experience the world predominantly visually. Du Feu describes this as ‘hearing with eyes’ [11]. BSL is a visual language that has a different grammatical structure than that of English. BSL incorporates many elements such as hand shape, orientation, and location; eye contact; facial expressions; lip patterns; and other non-manual features that convey linguistic meaning beyond simple gesture. Subtle differences in these can change the meaning of a word or phrase. Deaf people are seen as very expressive and people can misread and misunderstand what a deaf person is communicating by a lack of understanding of their facial expressions or body language, or by using hearing norms when describing meaning that does not reflect Deaf cultural norms (substantial differences in the use of facial expression, for example). The Deaf community has different social rules and etiquettes compared to the hearing community and this can lead to misunderstandings. Depending on a deaf person’s experience, family background, and schooling, they may use different modes of communication such as oral or SSE (between different modalities) or code mix (use two modalities simultaneously) [18].
Emergency Medical Services Communication Barriers and the Deaf American Sign Language User
Published in Prehospital Emergency Care, 2022
Jason M. Rotoli, Sarah Hancock, Chanjun Park, Susan Demers-Mcletchie, Tiffany L. Panko, Trevor Halle, Jennifer Wills, Julie Scarpino, Johannah Merrill, Jeremy Cushman, Courtney Jones
Recent literature has reported approximately 11 million individuals with any level of hearing loss in the US; however, the methods of gathering this data (i.e., survey methods, survey language, and questions asked) have made it challenging to accurately provide the number of culturally Deaf people, with most sources estimating from 100,000 to 1 million (10–12). The Deaf community has been described as a cultural and linguistic minority given the unique culture, shared life experiences, and use of American Sign Language (ASL) as the primary language (3, 11). Some of the most commonly reported misconceptions regarding the Deaf community have been: (1) ASL is merely a visual form of English conveyed through signs, (2) all Deaf ASL users can read and write in English with the same proficiency as hearing English speaking patients, and (3) all Deaf people can read lips effectively (3, 11). Contrary to these beliefs, ASL has been deemed to be its own distinct language, reading proficiency for Deaf ASL users tend to be around the 4–5th grade level (compared to 8th grade for hearing people), and experts have estimated only 10–30% of English can be accurately lip-read (13–21).
Therapeutic living communities for adults who are deaf and have intellectual disabilities: A conceptual model linking social communication and mental health
Published in International Journal of Developmental Disabilities, 2021
Johannes Fellinger, Magdalena Dall, Daniel Holzinger
Twenty-five percent of the staff are deaf themselves. They are important role models for the residents with regard to self-confidence, communication styles and communication strategies with hearing and deaf interlocutors. Furthermore, in challenging and stressful communication situations as a consequence of limited language skills in residents or hearing staff they serve as “relay interpreters” that secure successful communication (Deaf Interpreter Institute 2019). In addition to expressive and receptive fluency in signed language, deaf colleagues -being part of the deaf community themselves- have the cultural background that is required for sensitive and effective communication such as the speed of communication, interpretation of body language or strategies to direct and follow visual attention.
Related Knowledge Centers
- Audiology
- Cochlear Implant
- Cultural Identity
- Disability
- Hearing Loss
- Deafness
- Sign Language
- Deaf Education
- Signing Exact English
- Medical Model of Disability