残疾的未知社会方面——以多发性硬化症患者为例。

Edyta Barańska, Anna Jamroz-Wiśniewska, Konrad Rejdak
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引用次数: 0

摘要

前言和目的:在残疾的背景下,关于残疾和社会排斥的问题说了很多。其中一群残疾人是那些患有多发性硬化症的人,他们经历着完全不同形式的社会排斥。这篇文章的目的是展示它采取了什么形式,以及为什么这种形式的排斥对患者来说如此痛苦。材料和方法:采用定性方法进行研究,特别是自由形式的访谈或叙述性访谈。对患病至少7年的多发性硬化症患者进行了7次访谈。结果:多发性硬化症和由此导致的残疾不仅是患者的医疗问题,而且还影响他们在社会中发挥作用的能力。受访者指出了他们所面临的困难,包括社会排斥和排斥,他们认为这与非多发性硬化症的残疾人所经历的不同,而且更令人痛苦。多发性硬化症患者经常报告说,他们没有被认为有残疾,因为他们的残疾往往是看不见的,有时还被指责为装病。他们被迫不断地解释和证明他们的症状。为了避免不愉快的情况,他们经常感到被迫否认自己有残疾,即使它确实存在。结论:本案例中失信人的隐性残疾导致社会反感。这是因为,在社会背景下,这些人不被视为“残疾人”,而是被视为“怪人”。结果,这导致了隐藏(已经)的现象。“隐藏”/无形的障碍。因此,这些人的问题不在于残疾,而恰恰在于社会对他们缺乏残疾的认知——缺乏对他们残疾的社会认可。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Unknown social aspects of disability - on the example of patients with MS.

Introduction and objective: In the context of disability, much is said about the problem of disability and social exclusion. One such group of disabled people are those suffering from MS who experience a completely different form of social exclusion.The aim of the article is to show what form it takes and why this form of exclusion is so painful for the sufferers.

Material and methods: A qualitative method was used to conduct the study, specifically a free-form interview, or a narrative interview. Seven interviews were conducted with MS patients who had been ill for at least seven years.

Results: MS and the resulting disability present not only a medical issue for those affected, but also impacts their ability to function in society. Respondents indicate the difficulties they face, including social rejection and exclusion, which they describe as different and more distressing than that experienced by individuals with disabilities other than MS. People with MS often report that they are not perceived as having a disability because their disability is frequently invisible, and are sometimes accused of faking it. They are forced to constantly explain and justify their symptoms. To avoid unpleasant situations, they often feel compelled to deny that they have a disability, even though tit exists.

Conclusions: The conclusion is that the hidden disability of discredited people in this case causes social distaste. This is because, in the social context, these people are not seen as 'disabled' but as 'strange'. As a result, this leads to the phenomenon of hiding an (already) 'hidden'/invisible disability. The problem for these people, then, is not being disabled, but precisely the lack of social perception of them as disabled - the lack of social recognition of them as disabled.

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