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自闭症谱系中的伦理倡导:超越片面代表。

Ethical Advocacy Across the Autism Spectrum: Beyond Partial Representation.

机构信息

University of Pennsylvania.

出版信息

Am J Bioeth. 2020 May;20(4):13-24. doi: 10.1080/15265161.2020.1730482.

Abstract

Recent debates within the autism advocacy community have raised difficult questions about who can credibly act as a representative of a particular population and what responsibilities that role entails. We attempt to answer these questions by defending a set of evaluative criteria that can be used to assess the legitimacy of advocacy organizations and other nonelectoral representatives. With these criteria in hand, we identify a form of misrepresentation common but not unique to autism advocacy, which we refer to as partial representation. Partial representation occurs when an actor claims to represent a particular group of people but appropriately engages with only a subset of that group. After highlighting symbolic and substantive harms associated with partial representation, we propose several strategies for overcoming it.

摘要

近期,自闭症倡导界出现了一些争议性话题,这些话题围绕着谁有资格作为特定群体的代表,以及这一角色需要承担哪些责任等问题展开。为了解决这些问题,我们尝试提出了一套评估标准,该标准可用于评估倡导组织和其他非选举代表的合法性。有了这些标准,我们确定了一种在自闭症倡导中常见但并非独特的代表性缺失形式,我们称之为部分代表性。部分代表性是指,一个行为者声称代表某一特定群体,但只适当地与该群体的一部分人互动。在强调了部分代表性所带来的象征性和实质性伤害之后,我们提出了几种克服该问题的策略。

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