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Impacto Da Incapacitação E Do Ableísmo Nas Pessoas Incapacitadas Em Portugal: 'Fado', Cidadania E O Eu Corporizado the I

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Impacto Da Incapacitação E Do Ableísmo Nas Pessoas Incapacitadas Em Portugal: 'Fado', Cidadania E O Eu Corporizado the I Impacto da incapacitação e do ableísmo nas pessoas incapacitadas em Portugal: ‘Fado’, cidadania e o eu corporizado The impact of dis/abl(e)ism on disabled people in Portugal: Fado, citizenship and the embodied self EMA CRISTINA RIBEIRO FERNANDES LOJA Tese apresentada na Faculdade de Psicologia e de Ciências da Educação da Universidade do Porto para obtenção do grau de Doutor em Psicologia; sob orientação da Professora Doutora Isabel Menezes e Professora Doutora Maria Emília Costa. [Thesis submitted to the Faculdade de Psicologia e de Ciências da Educação da Universidade do Porto for the degree of Doctor of Psychology; under the supervision of Professor Isabel Menezes and Professor Maria Emília Costa.] PORTO, MAIO DE 2012 Trabalho financiado por Bolsa de doutoramento com a referência SFRH/BD/41485/2007 [Research financed with a PhD grant (Reference: SFRH/BD/41485/2007) from Fundação para a Ciência e Tecnologia] 2 3 4 SUMÁRIO Pela ausência de um campo de Estudos sobre a Incapacidade em Portugal, a investigação na área da incapacidade é escassa e carece da perspectiva das pessoas incapacitadas. Esta dissertação pretende alargar o estudo da incapacidade física no nosso país numa perspectiva sociopolítica, focando-se na compreensão do impacto da incapacitação e do ableísmo nas vidas das pessoas incapacitadas, nomeadamente na sua qualidade de vida, corporização e identidade. A investigação enquadra-se nos paradigmas sociopolítico, do ableísmo e da corporização e inclui três estudos que envolveram metodologia quantitativa e qualitativa. Cada estudo está incluído em três artigos científicos que foram publicados ou aceites para publicação. Para além destes, é apresentada uma proposta de mudança na área da incapacidade constituída pelas sugestões dos participantes. O 1º. artigo inclui um estudo qualitativo com seis líderes associativos no qual se procurou aceder à perspectiva de especialistas no que se refere ao contexto português na área da incapacidade. O 2º. artigo contém um estudo sobre qualidade de vida e discriminação com 217 pessoas incapacitadas. A validação do questionário QoL.Q (Schalock & Keith, 1993) e da Escala de Suporte aos Direitos das Minorias (Nata & Menezes, 2007) foi realizada através de procedimentos de análise factorial confirmatória. Análises estatísticas descritivas e de correlação foram também efectuadas. O 3º. artigo compreende um estudo qualitativo com sete pessoas com deficiências físicas visíveis. O impacto e a resistência aos discursos ableistas acerca de corpos com deficiência e a relação da corporização com a identidade foram analisados através da teoria da corporização e dos conceitos ableísmo (Campbell, 2001) e capital físico (Bourdieu, 1990). Os resultados mostram que a incapacitação e o ableísmo têm um impacto profundo na qualidade de vida das pessoas incapacitadas, assim como na sua corporização e identidade. Um ciclo paradigmático vicioso de tragédia é dominante, sendo contestado por uma minoria que se suporta numa tríade de factores baseada na consciência dos direitos. Mais do que isso, as pessoas incapacitadas manifestam formas corporizadas de resistência que contrariam as normatividades ableistas que constrangem o seu capital físico e o reconhecimento de uma identidade. 5 6 SUMMARY An understanding of disability and the perspective of disabled people in Portugal has hardly yet been reached, mainly due to the lack of a field of disability studies. This dissertation aims to extend the study of physical disability in Portugal within a sociopolitical perspective by focusing on the understanding of the impact of dis/abl(e)ism on disabled people’s lives, specifically their quality of life, embodiment and identity. The research was designed within sociopolitical, ableism and embodiment paradigms and consists of three studies that combined qualitative and quantitative methodologies. Each study is included in three scientific articles that were published or accepted for publication. Besides the papers, a proposal for change in regard to disability provided by participants’ suggestions is presented. The first paper includes a qualitative study with six leaders of disability associations and attempts to get insights from these experts about disability in regard to the Portuguese context. The second paper contains a quantitative study on quality of life and discrimination with 217 disabled people. Validation of the QoL.Q (Schalock & Keith, 1993) and the Minorities’ Rights Support Scale (Nata & Menezes, 2007) was carried out with CFA procedure. Then descriptive and correlational statistical procedures permitted the analysis of quality of life in disability and the impact of discrimination. The third paper comprises a qualitative study with seven people with visible physical impairments. The impact of and resistance to ableist discourses about impaired bodies and the relation of embodiment with identity are analyzed within embodiment theory and the concepts of ableism (Campbell, 2001) and physical capital (Bourdieu, 1990). Findings suggest that dis/abl(e)ism has a profound impact on disabled people’s lives, embodiment and identity. The prevalence of a tragic vicious cycle paradigm is challenged by a minor group of disabled people through a rights awareness-based triad of factors composed by financial and personal resources and social support system. Beyond that, disabled people manifest embodied forms of resistance that contradict the ableist normativities that undermine their physical capital and that impact on the recognition of a disability identity. 7 8 RÉSUMÉ: En raison de l'absence d’une filière d'études sur l’incapacité au Portugal, la recherche dans ce domaine est rare et ne présente pas le point de vue des personnes handicapées. Avec ce travail on prétend élargir l’étude de l’incapacité physique dans notre pays, à travers une perspective socio-politique qui met l'accent sur la compréhension de l'impact de l'incapacité et de l’ableism dans la vie des personnes handicapées, notament leur qualité de vie, leur embodiment et leur identité. La recherche s'inscrit, donc, dans les paradigmes socio-politique, de l’ableism et de l’embodiment et comprend trois études qui ont utilisée une combinaison des méthodologies quantitative et qualitative. Chaque étude a été objet d’un article scientifique publié ou accepté pour publication. Une proposition de changement dans le domaine de l’incapacité composée des suggestions des participants suit la présentation de ces études. Le premier article comprend une étude qualitative avec six dirigeants associatifs dans laquelle on a cherché à accéder au point de vue des experts à l'égard du contexte portugais dans le domaine de l’incapacité. Le deuxième article porte sur une étude quantitative auprès de 217 personnes handicapées versant la qualité de vie et la discrimination. La validation du questionnaire QoL.Q (Schalock & Keith, 1993) et de l’Escala de Suporte aos Direitos das Minorias (Nata & Menezes, 2007) a été réalisée par moyen des procédures d'analyse factorielle confirmatoire. Des analyses statistiques descriptives et de correlation ont également été réalisées. Le troisième article comprend une étude qualitative avec sept personnes ayant des handicaps physiques visibles. L'impact et la résistance aux discours ableist sur des corps avec un handicap et la relation de l’embodiment avec l'identité ont été analysés par moyen de la théorie de l’embodiment et des concepts d’ ableism (Campbell, 2001) et de capital physique (Bourdieu, 1990). Les résultats montrent que l'incapacité et l’ableism ont un profond impact sur la qualité de vie des personnes incapacités, ainsi que sur leur l’embodiment et leur identité. Un cercle vicieux paradigmatique de tragédie est dominant, quoiqu’il soit contesté par une minorité qui, à travers multiples facteurs, prend conscience de ses droits. Plus que cela: les personnes incapacités manifestent des formes “corsées” de résistance contraires aux normes ableist qui nuisent à leur capital physique et à la reconnaissance d'une identité. 9 10 Aos meus pais, meus verdadeiros anjos da guarda. To my parents, my true guardian angels. 11 12 NOTAS DE RECONHECIMENTO ACKNOWLEDGEMENT NOTES Neste espaço, quero dar as minhas notas de agradecimento e de reconhecimento a todos os que estiveram comigo no percurso deste trabalho. In this part, I want to give my thankful and acknowledgment notes to those who had been with me along this work process. Ao Paulo, pela imensa paciência e por me dar sempre uma ‘casa’ no paraíso ou onde quer que estejamos. À Bruna, pela companhia e afecto incondicional. Aos meus amigos fiéis: Lara Morgado, pela sua extraordinária capacidade empática; Cátia e Gil, pela respectiva persistência na amizade; Dave, por ter sempre a porta aberta para mim. À Fernanda Rodrigues, pelo mesmo último motivo. À Professora Maria Emília Costa, por acreditar em mim e apoiar-me desde o início. À Professora Isabel Menezes, pelo muito que me ensinou como investigadora e por sempre estar no lado da justiça social. Às Professoras Paula Mena Matos e Cidália Duarte, por me terem acompanhado neste percurso. Ao Professor Joaquim L. Coimbra, pela abertura e respeito que sempre teve comigo e pelo meu trabalho. À Inês Rothes, pela imensa cumplicidade. À Joana Cabral, pela imensa generosidade como colega e amiga. À Maria Jesus, pelo companheirismo. À Helena Carvalho, pela genuinidade da sua ajuda. Ao Gil Nata, pela estimulante discussão em tasca indiana. Ao Pedro Teixeira, por um dia me ter convencido a entrar no pioneirismo. Ao Pedro Ferreira, por ter sido meu par nas discussões e pela partilha da sua biblioteca particular. À Raquel Barbosa, por me ter iniciado no embodiment. À Graça Silva, por, entre outras dádivas, me ter dado um xi-portátil para usar em terras escocesas. Às pessoas que me ajudaram em tarefas de investigação e que deram o seu rigor e profissionalismo: Maria João Duro, Ana Pinto, Deirdré Matthee, Roger Phillips, Aline Rodrigues, Joana Leal, Helena Mesquita, Mafalda Lopes e Manuel Francisco. 13 Aos dirigentes da ADFA, APD, ACA-M, CNOD, Fundação Liga e ANDST que pronta e gentilmente partilharam a sua experiência de anos. A todos os participantes que preencheram e divulgaram o questionário sobre qualidade de vida e discriminação.
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