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首页> 外文期刊>Ciência & Saúde Coletiva >Social identity of people with rare conditions and the lack of diagnosis: contributions based on Hall, Honneth and Jutel
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Social identity of people with rare conditions and the lack of diagnosis: contributions based on Hall, Honneth and Jutel

机译：具有罕见条件和缺乏诊断的人的社会形式：基于大厅，霍尼和捷克的贡献

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摘要

We acknowledge that people with rare conditions constitute a group with a specific social identity and seek to understand what the implications of this acknowledgement are either in the stigmatization or emancipation of these individuals. We base ourselves on the observation that many people who are said to have rare conditions are told that their symptoms constitute a “rare disease,” without specifying which illness it might be. And, in this respect, many people with rare conditions are considered “handicapped,” people with “learning difficulties,” or are given many other labels that are not always socially well accepted. This article is structured around three analytical standpoints, basing ourselves on Stuart Hall, Axel Honneth and Annemarie Jutel. Initially, we discuss the construction of the social identity of people with rare conditions based on Hall’s definition of the “identity crisis.” We then examine the identity of people with rare conditions from the perspective of the theory of justice as recognition, especially in relation to what Honneth refers to as “reciprocal recognition.” Lastly, we highlight some of the specificities of the demands for recognition of people with rare conditions – albeit without a diagnosis – basing our study on the sociology of diagnosis from the standpoint of Annemarie Jutel.
机译：我们承认有罕见条件的人构成了一个特定的社会形式的团体，并寻求了解这一确认的影响是在侮辱或解放这些人的情况下。我们基地基于观察说，许多据说有罕见的条件的人被告知他们的症状构成了“罕见疾病”，而不指定它可能是哪种疾病。而且，在这方面，许多具有罕见条件的人被认为是“障碍”，人们“学习困难”或者被赋予许多并不总是被社会接受的标签。本文围绕三个分析立场构建，基于STUART HALL，AXEL HONENTH和ANNEMARIE JUTEL。最初，我们讨论了基于大厅对“身份危机”的定义的罕见条件的社会形式的构建。然后，从正义理论作为识别的角度来看，从律法理论的角度来看有罕见的条件的身份，特别是关于霍尼斯是指“互惠识别”。最后，我们突出了一些罕见条件识别人民要求的一些具体性 - 虽然没有诊断 - 从尼斯·捷克的角度来看我们对诊断社会学的研究。

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