Dept. of Sociology and Anthropology, Ben-Gurion University of the Negev, Israel.
Department of Medical Ethics and History of Medicine, University Medical Center Gottingen, Germany.
Soc Sci Med. 2018 Mar;200:65-72. doi: 10.1016/j.socscimed.2018.01.024. Epub 2018 Jan 28.
The important work done by various associations of and for people with disabilities is legitimated by their claim for collective representation. However, there is little empirical research that examines the organizational basis for such claims. We focus on patient/disability advocacy associations that illustrate a split of representation between organizations of and for autism. Drawing on documentary analysis and semi-structured interviews conducted in 2015-2017 with members and office-holders of autism associations in Germany and Israel, we highlight several common gaps and their relations to the organizational characteristics of the associations: Representing only part of the autism spectrum, and lack of efficient procedures for including the variety of members. We conclude by discussing the language and epistemology of "high-functioning"/"Aspies" vs. "low-functioning"/"Kanners" as politically and culturally embedded, highlighting the significance and difficulties of dialogue amidst autism-related epistemic communities.
各种残疾人和为残疾人服务的协会所做的重要工作，其合法性来自于他们对集体代表性的要求。然而，很少有实证研究来考察这些主张的组织基础。我们关注的是病人/残疾倡导协会，这些协会说明了自闭症组织之间代表权的分裂。本研究利用 2015-2017 年在德国和以色列与自闭症协会成员和官员进行的文献分析和半结构化访谈，突出了几个常见的差距及其与协会组织特征的关系：仅代表自闭症谱系的一部分，并且缺乏有效的程序来包容各种成员。最后，我们讨论了“高功能”/“阿斯伯格症”与“低功能”/“卡纳”之间的语言和认识论，认为它们是政治和文化上的固有观念，突出了在自闭症相关知识社区中对话的意义和困难。
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