多发性硬化症患者残疾的元话语

Ana-Maria Jerca
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引用次数: 0

摘要

本研究定性分析了Reddit子社区r/MultipleSclerosis上围绕多发性硬化症(MS)患者残疾一词的元话语。它探讨了影响多发性硬化症患者是否认为自己是残疾人、抵制这个词或以其他方式进行认同的医学和社会因素,并讨论了多发性硬化症患者如何重新获得残疾的话语。多发性硬化症是一种针对中枢神经系统的自身免疫性疾病,它的独特之处在于它可以“隐形”:它并不总是以明显的方式影响患者。因此,当用户讨论他们如何认同“残疾”一词时,疾病的进展只是被引用的一个因素——社会和后勤因素也有影响。因此,我建议,与其规定一个术语来指代残疾人,不如接受残疾人称呼自己的多种方式。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Meta-discourses of disability among people with Multiple Sclerosis
This study qualitatively analyzes meta-discourses surrounding the term disabled by people with Multiple Sclerosis (MS) on the Reddit sub-community r/MultipleSclerosis. It explores medical and social factors influencing whether people with MS identify as disabled, resist the term, or identify in other ways, and discusses how people with MS are reclaiming the discourse of disability. MS, an auto-immune disease targeting the central nervous system, is unique in that it can be “invisible”: it does not always affect the person who has it in noticeable ways. Consequently, the progression of the illness is only one factor cited when users discuss how they identify with the term disabled—social and logistical factors have an influence as well. Therefore, I suggest that instead of prescribing a term to refer to people with disabilities, it may be better to accept the many ways in which individuals with disabilities refer to themselves.
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