在英雄主义与边缘化之间:智障儿童母亲的经历

Hanna Zaremba-Kosovych
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引用次数: 0

摘要

本文分析了乌克兰上世纪70年代和90年代生育智障儿童的母亲的经历。话题性是由乌克兰几乎没有进行过类似的研究这一事实决定的。该出版物的新颖之处在于,没有分析苏联时期残疾政策的背景及其对公众对智力残疾的看法的影响。本研究的理论和方法基础是社会建构主义理论。实证研究采用定性方法:2019-2021年在基辅、利沃夫和利沃夫地区进行半结构化深度访谈和民族志纳入观察。通过定性内容分析,确定了已经有智力障碍成年子女的母亲的一些典型经历:与具有象征权力的卫生专业人员会面,将(智力)残疾儿童及其家庭排除在社会空间和社会交往之外、对残疾儿童及其家庭的污名化、对智力残疾儿童的永久照料、经济困难、在社会活动和社会包容中重新考虑儿童及其母亲的残疾问题。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Between Heroism and Marginality: Experiences of Mothers of Children with Intellectual Disabilities
The article is analyzed the experiences of mothers who gave birth to children with intellectual disabilities during the 1970s and 1990s in Ukraine. The topicality is determined by the fact that almost no similar research has been conducted in Ukraine. The novelty of the publication is that the context of disability policy in Soviet times and its impact on public perceptions of intellectual disability have not been analyzed. The theoretical and methodological basis of the study is the theory of social constructivism. The empirical research was conducted by qualitative methods: semi-structured in-depth interviews and ethnographic included observation in Kyiv, Lviv and Lviv region during 2019-2021. Due to the qualitative content analysis, a number of typical experiences were identified for mothers who already have adult children with intellectual disabilities: meeting with health professionals as bearers of symbolic power to exclude children with (intellectual) disabilities and their families from social space and social interactions, stigmatization of a child with a disability and his / her family, permanent care of a child with an intellectual disability, financial difficulties, rethinking the disability of a child and his / her motherhood in social activities and social inclusion.
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