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带着“残疾”标签生活:个人叙事作为生物医学和生物伦理学中做出响应且明智实践的资源

Living with the label "disability": personal narrative as a resource for responsive and informed practice in biomedicine and bioethics.

作者信息

Bishop Jeffery, Sunderland Naomi

出版信息

Narrat Inq Bioeth. 2013 Winter;3(3):183-6. doi: 10.1353/nib.2013.0067.

DOI:10.1353/nib.2013.0067
PMID:24407115
Abstract

What is it like to live with the label "Disability?" NIB editorial staff and narrative symposium editors, Jeffery Bishop and Naomi Sunderland developed a call for stories, which was sent to several list serves, shared with the 1000 Voices Project community and posted on Narrative Inquiry in Bioethics' website. The request for personal stories from people who identify with the label "disabled" asked them to: consider how the label "disability" interacts with other aspects of their life in health care settings; does the term "disability" reflect their actual embodied experiences of impairment or does it fail to do justice to their particular experience of impairment; describe the kind of experiences that are possible because of the impairment(s); discuss how the label has affected their "authentic voice"; and many other concepts about what effects the label has on their lives. These authors share deeply personal experiences that will help readers understand their world, challenges, and joys. Thirteen stories are found in the print version of the journal and an additional five supplemental stories are published online only through Project MUSE. The stories are complemented by four commentary articles by Elizabeth R. Schiltz; Lorna Hallahan; Nicole Matthews, Kathleen Ellem, and Lesley Chenoweth; and Jeffery Bishop, Rachelle Barina, and Devan Stahl. These scholars come from the disciplines of law, social work, media studies, medicine, and bioethics from Australia and the United States. Together, the symposium's storytellers and commentators offer striking and informative insights into the everydayness of living with disabilities.

摘要

带着“残疾”这个标签生活是怎样的呢?《叙事探究与生物伦理学》(NIB)的编辑人员以及叙事研讨会编辑杰弗里·毕晓普和内奥米·桑德兰发起了一项故事征集活动,该活动被发送到了几个邮件列表服务中,与“千声计划”社区分享,并发布在了《叙事探究与生物伦理学》的网站上。向那些认同“残疾”标签的人征集个人故事,要求他们:思考“残疾”这个标签在医疗环境中是如何与他们生活的其他方面相互作用的;“残疾”这个术语是否反映了他们身体损伤的实际体验,还是未能公正地体现他们特定的损伤经历;描述因损伤而可能产生的各种经历;讨论这个标签是如何影响他们“真实的声音”的;以及关于这个标签对他们生活有哪些影响的许多其他概念。这些作者分享了深刻的个人经历,将帮助读者了解他们的世界、挑战和喜悦。在该期刊的印刷版中有13个故事,另外还有5个补充故事仅通过MUSE项目在线发布。这些故事由伊丽莎白·R·席尔茨、洛娜·哈勒汉、妮可·马修斯、凯瑟琳·埃勒姆、莱斯利·切诺韦斯、杰弗里·毕晓普、蕾切尔·巴里纳和德万·斯塔尔撰写的四篇评论文章作为补充。这些学者来自澳大利亚和美国的法律、社会工作、媒体研究、医学和生物伦理学等学科。研讨会的讲述者和评论者共同为与残疾共存的日常生活提供了引人注目的、信息丰富的见解。

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