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悲剧与灾难:关于伦理与残疾的争议性论述

Tragedy and catastrophe: contentious discourses of ethics and disability.

作者信息

Clapton J

机构信息

Centre for Work, Leisure and Community Research, Logan Campus, Griffith University, University Drive, Meadowbrook, Queensland, Australia.

出版信息

J Intellect Disabil Res. 2003 Oct;47(Pt 7):540-7. doi: 10.1046/j.1365-2788.2003.00533.x.

Abstract

Undertaking theoretical-conceptual research, this paper identifies and explores two dominant discourses that seemingly underpin ethical considerations about people with intellectual disability in this current biotechnological era. The discourses, identified as tragedy and catastrophe, are constructed from conjunctions of particular theoretical understandings of disability and particular frameworks of ethics. For example, both tragedy and catastrophe are founded upon notions of disability as personal tragedy; and ethics, especially bioethics, primarily practised as medical ethics. What differs between the discourses is the apparent intent of each, and subsequently the arena in which they are activated. This paper asserts that the identification and deconstruction of these discourses, and their implicit ethical agendas, cannot be ignored and indeed should be challenged, when considering the impact of technological and scientific advances, such as the Human Genome Project. However, there has been little attention given in contemporary ethical discussions as to whether these discourses are contestable, or the power base of their constructions questionable. In fact, the insertion of 'counterstories' from relational experiences with people with disability may offer both alternative understandings and a more appropriate ethical platform from which to engage in critical discussions. The challenges are, then, whether these counterstories can be heard in such a climate; and what currency will bioethics, as a discipline, give them against the very powerful and partnering disciplines controlling the biotechnological revolution?

摘要

通过开展理论概念研究,本文识别并探讨了两种主导性话语,它们似乎构成了当前生物技术时代有关智障人士伦理考量的基础。这两种话语被确定为悲剧和灾难,它们是由对残疾的特定理论理解与特定伦理框架相结合构建而成的。例如,悲剧和灾难都基于将残疾视为个人悲剧的观念;而伦理,尤其是生物伦理,主要作为医学伦理来践行。这两种话语的不同之处在于各自明显的意图,以及随后它们被激活的领域。本文断言,在考虑诸如人类基因组计划等技术和科学进步的影响时,对这些话语及其隐含的伦理议程的识别和解构不能被忽视,实际上应该受到挑战。然而,在当代伦理讨论中,很少有人关注这些话语是否具有可争议性,或者其构建的权力基础是否存在问题。事实上,从与残疾人的关系经历中引入 “反叙事” 可能会提供不同的理解,以及一个更合适的伦理平台,以便展开批判性讨论。那么,挑战在于,在这样一种氛围中这些反叙事能否被听到;作为一门学科的生物伦理会给予它们怎样的影响力,以对抗控制生物技术革命的非常强大且相互协作的学科?

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