0232/2019 - Identidade social de pessoas com condições raras e ausência de diagnóstico: Contribuições a partir de hall, honneth e jutel. Social identity of people with rare conditions and lack of diagnosis: Contributionshall, honneth and jutel.
Pessoas com condições raras constituem um grupo disperso ou possuem uma identidade social que deve ser reconhecida? Refletir sobre pessoas com condições raras nos permite redimensionar a clássica problematização que expõe dois sentidos básicos de injustiça: o tratamento de certas pessoas como inferiores, de um lado, e, de outro, a perpetuação das desigualdades (quer em termos de renda, de saúde, de capacitações, etc). São sentidos enfrentados por Charles Taylor e Axel Honneth, por exemplo, ao refletirem sobre a justiça como reconhecimento. Reconhecemos que pessoas com condições raras são um grupo com identidade social e buscamos compreender quais as implicações deste reconhecimento quanto à estigmatização ou à emancipação destas pessoas. Amparamo-nos na observação de que muitas das pessoas rotuladas com condições raras recebem a informação de que seus sintomas caracterizam uma \"doença rara\", mas não lhes é especificada qual seja. Optamos, assim, por usar a expressão \"condições raras\" já que os sintomas são nomeados de muitas maneiras diferentes. E, nesta medida, muitas pessoas com condições raras tornam-se também \"deficientes\", pessoas com \"dificuldades de aprendizagem\" ou tantos outros rótulos que nem sempre são bem vistos socialmente. Este artigo está organizado a partir de três eixos de análise, fundamentando-nos em Stuart Hall, Axel Honneth e Annemarie Jutel. Primeiramente,
Palavras-chave:
Doenças Raras; Crise de Identidade; Diagnóstico.
Abstract:
Do people with rare diseases compound a scattered group or do they have a social identity that must be recognized? Reflecting on people with rare conditions can help us bring the classic problematization that exposes two basic meanings of injustice into a new dimension: on one hand, the treatment of certain people as inferior and, on the other hand, the perpetuation of inequalities (in terms of income, health, capabilities etc.). Such things are discussed by Charles Taylor and Axel Honneth, for example, who think over justice as recognition. We recognize that people with rare conditions compound a group with social identity and we seek to understand the implications of such recognition in either stigmatization or emancipation of these people. We are guided by the observation that many people who are labeled with rare conditions are told that their symptoms characterize a \"rare disease\", even if it has not been specified for them. We choose, thus, to use the term “rare conditions” since the symptoms are named in several different ways. And, to this extent, many people with rare conditions also become \"disabled\", people with \"learning difficulties\" or they receive so many other labels that are not always well accepted socially. This article is organizedthree axes of analysis, on the grounds of Stuart Hall, Axel Honneth and Annemarie Jutel. First, we discuss the construction
Social identity of people with rare conditions and lack of diagnosis: Contributionshall, honneth and jutel.
Resumo (abstract):
Do people with rare diseases compound a scattered group or do they have a social identity that must be recognized? Reflecting on people with rare conditions can help us bring the classic problematization that exposes two basic meanings of injustice into a new dimension: on one hand, the treatment of certain people as inferior and, on the other hand, the perpetuation of inequalities (in terms of income, health, capabilities etc.). Such things are discussed by Charles Taylor and Axel Honneth, for example, who think over justice as recognition. We recognize that people with rare conditions compound a group with social identity and we seek to understand the implications of such recognition in either stigmatization or emancipation of these people. We are guided by the observation that many people who are labeled with rare conditions are told that their symptoms characterize a \"rare disease\", even if it has not been specified for them. We choose, thus, to use the term “rare conditions” since the symptoms are named in several different ways. And, to this extent, many people with rare conditions also become \"disabled\", people with \"learning difficulties\" or they receive so many other labels that are not always well accepted socially. This article is organizedthree axes of analysis, on the grounds of Stuart Hall, Axel Honneth and Annemarie Jutel. First, we discuss the construction
Gomes, J.S. Identidade social de pessoas com condições raras e ausência de diagnóstico: Contribuições a partir de hall, honneth e jutel.. Cien Saude Colet [periódico na internet] (2019/ago). [Citado em 24/12/2024].
Está disponível em: http://cienciaesaudecoletiva.com.br/artigos/identidade-social-de-pessoas-com-condicoes-raras-e-ausencia-de-diagnostico-contribuicoes-a-partir-de-hall-honneth-e-jutel/17306?id=17306&id=17306
