Attitudes of deaf individuals towards genetic testing of genes known to cause hearing loss

Congenital deafness is one of the most common birth defects reported. Approximately 70% of congenital deafness is non-syndromic, and approximately 80% of non-syndromic hearing loss results from a genetic cause. Middleton et al.’s1998 study highlighted the negative attitudes of culturally Deaf individuals towards genetic testing for genes known to cause hearing loss. While studies concerning genetic testing for deafness genes reference Middleton’s study, to our knowledge a re-evaluation of the attitudes of Deaf individuals towards genetic testing has not been conducted recently. The purpose of this study is to re-establish attitudes of Deaf individuals towards genetic testing of genes known to cause hearing loss. A computer-based questionnaire was distributed to members of the Deaf community. Responses of participants were recorded and analyzed. The primary investigator then attended Deaf community events and the 2015 Alabama Association of the Deaf Conference, and recruited individuals interested in participating in the study. The surveys were distributed to these individuals and their anonymous responses were analyzed. Our results show there are more positive attitudes within the Deaf community towards genetic counseling, genetic testing, and prenatal testing of genes known to cause hearing loss than were previously documented, although negative attitudes are still present. Additionally, our study shows there is a desire among members of the Deaf community to learn more about and potentially receive these services, despite the fact they are rarely offered by healthcare providers.

Hearing loss and employment: a systematic review of the association between hearing loss and employment among adults

BackgroundHearing loss affects over 1.3 billion individuals worldwide, with the greatest burden among adults. Little is known regarding the association between adult-onset hearing loss and employment.MethodsSeven databases (PubMed, Embase, Cochrane Library, ABI/Inform Collection, Business Source Ultimate, Web of Science and Scopus) were searched through to October 2018. The key word terms used related to hearing loss and employment, excluding paediatric or congenital hearing loss and deaf or culturally deaf populations.ResultsThe initial search resulted in 13 144 articles. A total of 7494 articles underwent title and abstract screening, and 243 underwent full-text review. Twenty-five articles met the inclusion criteria. Studies were set in 10 predominantly high-income countries. Seven of the 25 studies analysed regionally or nationally representative datasets and controlled for key variables. Six of these seven studies reported associations between hearing loss and employment.ConclusionThe highest quality studies currently available indicate that adult-onset hearing loss is associated with unemployment. However, considerable heterogeneity exists, and more rigorous studies that include low- and middle-income countries are needed.

In Between Spiderman and the Incredible Hulk: Crises of Collage, Mutating Identities, and Collective Subjectivities

In this chapter, the reader will find a careful analysis of the impact of mutating identities written by a deaf educational anthropologist who places himself squarely in the liminal zone of identity as an in-betweener, identifying himself as culturally Deaf and as a deaf person who speaks. Using this as a starting point, he argues for a shift from a politics of identity toward a politics of vitalism that rejects a focus on individual bodies and differences and instead focuses on flows of vitality that emerge through difference and movement across multiple bodies and identities. In so doing, he disavows an essentialist and dualistic “us-them” framework and elucidates the richness of the in-between. This serves as a generative force to move beyond a subject’s struggle for an unattainable unified identity and instead seek connections with multiple bodies.

The Body as a Canvas: Developing a Deaf Bodily Habitus in Deaf Signing Preschools

The authors of this chapter, one deaf and one hearing, are educational anthropologists who explore how deaf bodies become social agents that mediate the spaces around them. They describe their research in signing preschools located in three different countries that provide opportunities for deaf children to learn their country’s formal sign language, be introduced to Deaf culture, and acquire a Deaf habitus. There are detailed examples of the process by which these children acquire social awareness and physical approaches to create cultural perspectives of their bodies as representative of their society and of deaf identities. Readers will see how teachers can support the early development of a Deaf bodily habitus by introducing Deaf cultural norms of eye gaze, attention elicitation strategies, joint attention, facial expressions, and body language, which are some of the building blocks of a culturally Deaf identity.

How might the cultural significance of storytelling in Deaf communities influence the development of a life-story work intervention for Deaf people with dementia? A conceptual thematic review

Although life-story work is an established form of support for people with dementia and their carers, culturally Deaf people who are sign language users have been excluded from this practice. There is no evidence base for the cultural coherence of this approach with Deaf people who sign, nor any prior investigation of the linguistic and cultural adaptation that might be required for life-story work to be effective for sign language users with dementia. Given the lack of empirical work, this conceptual thematic literature review approaches the topic by first investigating the significance of storytelling practices amongst Deaf communities across the lifespan before using the findings to draw out key implications for the development of life-story work with culturally Deaf people who experience dementia and their formal and informal carers (whether Deaf or hearing). The reviewed work is presented in three themes: (a) the cultural positioning of self and others, (b) learning to be Deaf and (c) resistance narratives and narratives of resistance. The article concludes that life-story work has the potential to build on lifelong storying practices by Deaf people, the functions of which have included the (re)forming of cultural identity, the combating of ontological insecurity, knowledge transmission, the resistance of false identity attribution, and the celebration of language and culture.

Endangered Sign Languages

This chapter provides an introduction to endangered sign languages specifically designed for linguists who know little about sign languages but who may have an interest in the documentation of endangered sign languages. Focusing on ten Southeast Asian sign languages, nine of which are endangered or dying and six of which are being documented by fluent Culturally Deaf users trained through the Asian-Pacific Sign Linguistics Program in The Centre for Sign Linguistics and Deaf Studies at The Chinese University of Hong Kong, this chapter provides information about: the historical relationships of these sign languages, sign language phonology, “alphabetization” of signs by formational parameters, sign language morphology, sign language syntax, and sign language lexicons and lexicography. Finally, the chapter provides some discussion about the possible future of the documentation, conservation, and possible revitalization of endangered sign languages.

"Coming out" rhetoric in disability studies: Exploring the limits of analogy by looking at its fit with the Deaf experience

This article takes as its entry point the borrowing of coming out discourse in Disability Studies. It first discusses the limits of using such analogies and then investigates its fit when considering the specificity of the Deaf experience. The research is based on five personal histories garnered through in-depth interviews with individuals primarily discussing their processes of coming to identify as Deaf, but also some discussion of coming to identify as gay/lesbian. Their stories indicate that unlike its deployment in broader disability studies, the discourse of coming out in relation to adopting a Deaf cultural identity does not resonate. Instead, the narratives show that while these Deaf individuals did use a sign for "coming out" to describe their process of identifying as gay/lesbian, they did not use it to describe their Deaf identity development. Their narratives of coming to identify as culturally Deaf instead predominantly use a phrase that can interpreted from sign language as "becoming Deaf," although some of the same processes and features of identity development are present. It concludes with a discussion of the tensions between Deaf and disability studies, the limits of analogizing disability with other categories and particularly the limits of coming out discourse regarding the Deaf experience, as well as a discussion of the universalizing view of disability studies.

Hearing children of Deaf parents: Gender and birth order in the delegation of the interpreter role in culturally Deaf families

Background: Culturally, hearing children born to Deaf parents may have to mediate two different positions within the hearing and Deaf cultures. However, there appears to be little written about the experiences of hearing children born to Deaf parents in the South African context.Objective: This study sought to investigate the roles of children of Deaf adults (CODAs) as interpreters in Deaf-parented families, more specifically, the influence of gender and birth order in language brokering.Method: Two male and eight female participants between the ages of 21 and 40 years were recruited through purposive and snowball sampling strategies. A qualitative design was employed and data were collected using a semi-structured, open-ended interview format. Themes which emerged were analysed using thematic analysis.Results: The findings indicated that there was no formal assignment of the interpreter role; however, female children tended to assume the role of interpreter more often than the male children. Also, it appeared as though the older children shifted the responsibility for interpreting to younger siblings. The participants in this study indicated that they interpreted in situations where they felt they were not developmentally or emotionally ready, or in situations which they felt were better suited for older siblings or for siblings of another gender.Conclusion: This study highlights a need for the formalisation of interpreting services for Deaf people in South Africa in the form of professional interpreters rather than the reliance on hearing children as interpreters in order to mediate between Deaf and hearing cultures.

Expert Listening beyond the Limits of Hearing: Music and Deafness

Attitudes to the relationship between music and deafness suffer from two related misconceptions: the enduring assumption that hearing is central to musical experience in conjunction with an extreme impression of deafness as total aural loss; and, more recently, the tendency to reduce deaf listening to tactility, as narratives about inborn sensory acuities among the deaf proliferate in the popular imaginary. Increasingly, deafness symbolizes a set of sensory polarities that obscure an intrinsic diversity of musical experiences from which musicology stands to gain, a diversity that encompasses members of Deaf culture and non-culturally deaf people alike, and that is signaled through the person-centered compound “d/Deaf.” My article builds on recent music scholarship on disability to offer a pluralistic understanding of music and deafness. Beginning with Scottish deaf percussionist Evelyn Glennie, I investigate a range of d/Deaf accounts of music, including those of Deaf sign language users, hearing aid wearers, and cochlear implant recipients, and of people with music-induced hearing loss. Deafness resists automatic entry points into music, unsettling any straightforward hierarchy of the senses. Deaf people reflect on the musical status of aurality in markedly different ways, just as they offer a complex understanding of vision and touch. For instance, vision is a highly versatile listening strategy and is often more reliable than vibration; touch is feasible because of its contextual dependence on visual cues, and is further tied to a set of material and environmental variables. Ultimately, I argue that d/Deaf listeners enrich customary notions of musical expertise: deafness belongs in musicology as a diverse set of experiences within the full spectrum of listening.