声称正常:阿曼的残疾,耻辱和关系性
1Department of Anthropology, University of Colorado Denver, Denver, Colorado, USA.
Medical anthropology quarterly
|May 26, 2025
概括
约旦的母亲将唐氏综合征重新定义为家庭和社区关系中的正常现象,挑战耻辱. 这种重新定义使残疾正常化,将其从感知到的风险转变为被接受的生活方式.
科学领域:
- 关于残疾人的社会学
- 家庭研究 家庭研究
- 文化人类学 文化人类学
背景情况:
- 残疾人的耻辱感往往与社会关系和社区的看法有关.
- 现有的叙述可能将体现的差异视为需要制的风险.
- "正常"的概念既可以压迫,也可以赋予权力.
研究的目的:
- 探索约旦安曼的母亲如何处理与抚养患有唐氏综合征的孩子相关的残疾污名.
- 检查亲属关系和社区关系在挑战唐氏综合征负面观念中的作用.
- 分析家庭如何利用"正常"的概念来重新定义残疾.
主要方法:
- 基于母亲抚养患有唐氏综合征的孩子的经验进行的定性研究.
- 分析家庭和社区内的社会动态.
- 检查围绕残疾和正常性的叙事构造.
主要成果:
- 亲属关系和社区关系是母亲患有唐氏综合征的经历的核心.
- 家庭积极"收回"唐氏综合征作为正常,挑战社会耻辱.
- "正常"的概念被战略性地使用,以抵制残疾作为关系风险的叙述.
- 挑战性耻辱导致唐氏综合征被视为生活和人际关系的一个不例外的方面.
结论:
- 残疾人的耻辱深深植根于社会和家庭关系中.
- 家庭可以通过重新定义唐氏综合征在他们的社会背景下是正常的,从而颠覆耻辱.
- 战略性地使用"正常"可以赋予家庭权力,促进包容.
- 这种方法突出了关系动态的潜力,以重塑对残疾的理解.
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