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“自闭症本身实际上并非残疾”:协商“正常”与“异常”的自闭症身份认同。

Autism itself actually isn't a disability': Negotiating a 'normal' versus 'abnormal' autistic identity.

作者信息

Lester Jessica Nina, Karim Khalid, O'Reilly Michelle

出版信息

Commun Med. 2014;11(2):139-52. doi: 10.1558/cam.v11i2.20371.

Abstract

The opposing positions of the social model of disability and the biomedical framework of impairment have created tensions regarding what constitutes 'normality'. In this article, we drew upon focus group data of parents, professionals, and people with autism, to explore how the dilemmatic tensions of normality and abnormality and of disability and ability were managed. Our findings illustrate how the boundaries of normality in relation to autism are blurred, as well as how the autistic identity is fluid. The members of the focus group invoked their epistemic rights to assert their positions and delicately considered the limitations of the rhetoric of cure. Our findings have implications for professionals working with families of children with autism, specifically as they aim to maintain a balance between providing sufficient support and not being intrusive, and we show how a medical sociology can facilitate an understanding of autism as a social category.

摘要

残疾的社会模型与损伤的生物医学框架这两种对立立场,在何为“正常”的问题上引发了紧张关系。在本文中,我们利用了来自家长、专业人士和自闭症患者的焦点小组数据,以探究正常与异常、残疾与能力之间的两难紧张关系是如何得到处理的。我们的研究结果表明,与自闭症相关的正常边界是如何模糊的,以及自闭症身份是如何具有流动性的。焦点小组的成员援引他们的认知权利来坚持自己的立场,并审慎地考虑治愈言辞的局限性。我们的研究结果对与自闭症儿童家庭打交道的专业人士具有启示意义,特别是当他们旨在保持提供充分支持与不过度干涉之间的平衡时,并且我们展示了医学社会学如何能够促进将自闭症理解为一种社会类别。

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