The prenatal genetic testing arena has witnessed great changes over the past decades and has been the focus of extensive discussion of its ethical, legal, and social implications. Germany and Israel were previously known for strongly contrasting regulations and attitudes of both professionals and laypeople towards genetic testing. Based on qualitative analysis of 37 semi-structured interviews, this study compares German and Israeli family members of individuals with Down syndrome and disability activists, thereby examining the interplay between lived experience and cultural scripts and their impact on the formation of personal views toward disability and prenatal testing. We have found that the differences between Germany and Israel remain, despite the emergence of new technologies, and that family members and disability activists reflect the norms of their socio-cultural environments, thereby emphasising the role society plays in shaping the views of those with direct experience of disability.
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http://dx.doi.org/10.1016/j.socscimed.2022.115021 | DOI Listing |
BMC Pregnancy Childbirth
December 2024
Department of Health and Society, University of Toronto Scarborough, 1265 Military Trail, Toronto, ON, M1C 1A4, Canada.
Med Humanit
January 2025
History of Capitalism, Technology and Culture, University of Delaware College of Arts & Sciences, Jersey City, New Jersey, USA
Domestic alarms are highly personal technological appendages that help us achieve an individual sense of safety and familial well-being-like baby monitors that help us care for children and alarm clocks that ensure a daily routine and help us get to work on time. Alarms can be understood as technologies that extend our eyes, ears, and memory to monitor our homes and ourselves in various ways beyond typical human capacity. The designs of domestic alarms tend to favour audible forms of alerting, and disabled users and inventors have hacked and redesigned alarms to fit their own families' needs.
View Article and Find Full Text PDFJ Aging Stud
December 2024
Faculty of Law, University of Technology Sydney, Broadway, NSW, Australia. Electronic address:
Dementia is known to unequally affect women, whether as women living with dementia, or women who provide unwaged or paid care, yet dementia and long-term care ('LTC') research and policy often ignore gender. Using Australia as a case study and building on critical dementia, critical disability, and feminist scholarship, this discourse analysis study explored representations in the Australian Royal Commission into Aged Care Quality and Safety ('ACRC') Final Report of experiences of women with dementia, and women care partners of people with dementia, using long-term care. This paper argues gender remained an overlooked topic in relation to dementia in the ACRC Final Report.
View Article and Find Full Text PDFThis essay explores how the authors' curatorial process has roots in wonder: how it is one of inquiry, beginning and ending with open questions. The authors describe how their "crip" curatorial methods can be used to refuse extractive practices that might result from a disengaged wonder and to generate exhibitions that hold both the viewers and the artists with the care necessary to move passive viewing into a reciprocal engagement that can lead to an activist turn. These curatorial methods acknowledge and embrace medical professionals as potentially fellow disabled people and view them as current or potential allies.
View Article and Find Full Text PDFJ Med Humanit
December 2024
School of Modern Languages and Cultures, Durham University, New Elvet, Elvet Riverside, Durham, DH1 3JT, UK.
This essay examines the breast cancer accounts of four Arab female celebrities who have spoken out in public about their illness experience: the Egyptian TV presenter Basma Wahba and the actress Yasmine Ghaith, the Iraqi actress Namaa al-Ward, and the Lebanese pop singer Elissa. By reading their testimonies against the backdrop of critical literature on illness narratives and memoirs, as well as on cancer narratives and activism, the essay asks: how are the accounts of these women's cancer diagnosis and treatment disclosed and described? In what medium do they communicate and circulate their breast cancer experiences? What significance do these public disclosures have on challenging and breaking the Arab taboo of cancer? In conclusion, the essay argues that these women's willingness to share their stories in public constitutes an important form of multimedia activist intervention-visual, sonic, and performative-that is playing a key role in the development of a breast cancer movement.
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