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Bioethics and the Deaf Community
Published in Joel Michael Reynolds, Christine Wieseler, 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.
Medical students learn ‘sonic alignment’
Published in Alan Bleakley, 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.
Deafness and hearing loss
Published in Michael Horvat, Ronald V. Croce, Caterina Pesce, Ashley Fallaize, Developmental and Adapted Physical Education, 2019
Michael Horvat, Ronald V. Croce, Caterina Pesce, Ashley Fallaize
The development of communication is essential for integration into regular classes as well as for communicating in the deaf community (Stewart & Kluwin, 2001; Stewart, 1987). Although many professionals may disagree on the methods for improving communication, several methods are viable for physical education teachers. These include signing, amplification, and auditory training.
Supporting deaf learners in Nepal via Sustainable Development Goal 4: Inclusive and equitable quality education in sign languages
Published in International Journal of Speech-Language Pathology, 2023
Kristin Snoddon, Joseph J. Murray
However, unlike the Salamanca Statement, the CRPD avoids making direct reference to issues regarding school placement. Instead, the CRPD emphasises inclusion principles and includes a sensory exception to the principle of so-called full inclusion in regular schools (Arnardóttir, 2011; Murray et al., 2018). Article 24(3) grants special status to deaf, deafblind, and blind children; this is a result of an alliance during the CRPD negotiation process between the WFD, World Blind Union, and the World Federation of the Deaf Blind (Murray et al., 2020). Article 24(3)(b) calls on governments to facilitate “the learning of sign languages and the promotion of the linguistic identity of the deaf community.” In addition, Article 24(3)(c) states that governments are to ensure that education for children with sensory disabilities “is delivered in the most appropriate languages and modes and means of communication … and in environments that maximize academic and social development.” Article 24(4) further states that governments “shall take appropriate measures to employ with teachers … qualified in sign language and/or Braille.” The fact that such an alliance was needed highlights the dominance of normative and assimilationist concepts of inclusion as placement instead of as full and equal participation in education and communities. The provisions of the CRPD and of “quality education” (SDG 4) are affirmed and further explicated by the WFD’s Position Paper on the Language Rights of Deaf Children and Position Paper on Inclusive Education (World Federation of the Deaf, 2016, 2018).
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).
A New Ethical Framework for Assessing the Unique Challenges of Fetal Therapy Trials
Published in The American Journal of Bioethics, 2022
Saskia Hendriks, Christine Grady, David Wasserman, David Wendler, Diana W. Bianchi, Benjamin E. Berkman
While arguing for one view over the other is beyond the scope of this paper, the selected approach can affect the perceived benefits of a study, especially when the accounts of well-being might diverge. For example, some objective accounts of well-being would suggest that individuals are better off without deafness, whereas that is not the experience for some members of the deaf community (Dennis 2004; Werngren-Elgstrom, Dehlin, and Iwarsson 2003). Reducing cognitive impairment in Down syndrome (DS) (Bacharach 2016; Tamminga et al. 2017) would likely score well using objective accounts, which generally consider improved cognitive abilities to make people better off (e.g., by increasing autonomy) (Gottfredson and Deary 2004; Whalley and Deary 2001). Whether improving cognitive functioning improves the subjective well-being of individuals with DS is however an open empirical question (De Wert, Dondorp, and Bianchi 2017; Inglis et al. 2014). These cases also show that certain fetal therapies may offer medical benefits, but future children would not necessarily be better off in some meaningful psychosocial ways. This presents another way in which considering only narrowly defined medical benefits may inadequately capture the relevant interests.