Manor-Binyamini Iris, Shoshana Avihu
Department of Special Education, University of Haifa, 199 Aba Khoushy Ave. Mount Carmel, 3498838, Haifa, Israel.
Department of Counseling and Human Development, University of Haifa, 199 Aba Khoushy Ave. Mount Carmel, 3498838, Haifa, Israel.
Cult Med Psychiatry. 2018 Jun;42(2):401-418. doi: 10.1007/s11013-018-9567-x.
This article examines how Bedouin mothers in Israel describe, perceive, and interpret their experiences raising a child with autism. Data were collected using semi-structured ethnographic interviews with 18 Bedouin mothers of children with autism, aged 6-16, living in recognized and unrecognized settlements in the Negev. Analysis of the study findings shows how the subaltern status of Bedouin women, which includes their husbands' constant threats of divorce or taking a second wife, makes it difficult for them to be mobile and interact in the public sphere without the presence of a man and creates an experience unique to these mothers, which we call "Exclusion within Exclusion". The Bedouin mothers report not only stigmatization, a lack of social support and loneliness but also structural-cultural characteristics that prevent them from obtaining information and participating in decision-making about the child with autism and that restrict their agency in dealing with and coping with their child's autism. In light of this situation, the discussion highlights the unique connection between local cultural scripts and the phenomenology of autism.
本文探讨了以色列的贝都因母亲如何描述、感知和解读她们抚养自闭症孩子的经历。研究数据通过对18位居住在内盖夫已获承认和未获承认定居点的、孩子年龄在6至16岁的自闭症患儿的贝都因母亲进行半结构化人种志访谈收集而来。对研究结果的分析表明，贝都因女性的从属地位，包括她们的丈夫不断以离婚或娶二房相威胁，使得她们在没有男性陪同的情况下难以在公共领域活动和互动，并造就了这些母亲独有的经历，我们称之为“双重排斥”。贝都因母亲们不仅报告了遭受污名化、缺乏社会支持和孤独感的情况，还指出了一些结构文化特征，这些特征使她们难以获取信息并参与有关自闭症孩子的决策，限制了她们应对孩子自闭症的能力。鉴于这种情况，讨论突出了当地文化脚本与自闭症现象学之间的独特联系。
