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As necessidades educativas especiais do aluno com Distrofia Muscular de Duchenne
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Advisor(s)
Abstract(s)
Embora reconhecendo que as pessoas com deficiências ou incapacidades não se
constituem como um grupo homogéneo, é inegável que este é um dos segmentos da
população que mais tem sofrido os efeitos da exclusão, os quais se tornam impeditivos
da sua participação ativa na sociedade e comprometem, de forma inaceitável, o
exercício de uma cidadania plena.
Cabe, portanto, a cada um de nós, por exercício da livre vontade, assumir as
nossas responsabilidades, enquanto cidadãos ativos e reflexivos, como elemento chave
na construção de uma sociedade mais rica em valores como a tolerância e a
solidariedade, uma sociedade criativa e respeitadora dos direitos do Homem.
É imprescindível termos sempre em mente a máxima de que a Educação é algo
fundamental à própria existência da pessoa, mas a história elucida que nem sempre
assim se entendeu tal direito em relação às pessoas com deficiência.
Constata-se, sobretudo, através da análise de documentos legislativos, a
existência de diversas alterações na construção social da Deficiência que apontam para
uma contínua evolução nas atitudes sociais e políticas, as quais, nas últimas décadas,
têm vindo a encarar a pouco e pouco a pessoa com deficiência como um cidadão de
pleno direito. Como tal, assume-se como uma preocupação a sua educação e assiste-se
ao enfoque da sua integração educativa como estratégia de combate à exclusão.
Porém, atualmente, a opção metodológica e filosófica que o sistema educativo se
encontra empenhado em promover, relativamente às crianças e jovens portadores de
deficiência, para além da sua integração, é a da sua inclusão nas estruturas regulares de
ensino. Deste modo, emerge a necessidade de analisar o quadro das respostas educativas
proporcionadas a estes alunos nessas mesmas estruturas. Analisar até que ponto estas
convergem para os princípios orientadores desta nova filosofia educativa que se
encontram perfeitamente definidos na Declaração de Salamanca (1994).
Assim, o presente estudo, visa contribuir para a análise e reflexão acerca da
problemática da deficiência, mais concretamente da Distrofia Muscular de Duchenne,
no âmbito das situações de inclusão nas estruturas regulares de ensino, em particular,
nas Escolas do 2.º e 3.º ciclos do Ensino Básico, no sentido de procurar verificar se uma
universalidade de acesso e sucesso na educação pode ser, efetivamente garantida aos
alunos portadores de deficiência. Decorrente da prática profissional da Educação Especial, explorou-se um estudo
de caso com um aluno portador de DMD, integrado na saldo ensino regular do concelho
de Guimarães, e verificar que a sua integração nesta escola, veio indubitavelmente
valorizar as suas competências e aumentar a sua autonomia e socialização no meio
envolvente.
Com o presente trabalho pretende-se contribuir para a reflexão sobre um
domínio particular de investigação: As Necessidades Educativas Especiais do aluno
com DMD, escolhido porque se considerou importante tentar compreender a relação
entre o contexto, interlocutores e o jovem/adolescente com a dita distrofia na interação
social.
As conclusões obtidas remetem-nos para a necessidade de uma reestruturação no
sentido de suprimir algumas das barreiras evidenciadas, quer ao nível arquitetónico e
físico, organizacional, bem como, em termos pedagógicos e de recursos humanos.
Avançam-se alguns elementos teóricos, na tentativa de dar conta de alguns dos
parâmetros que orientam a pesquisa.
Whereas it is recognised that people with disabilities do not constitute themselves as a homogeneous group, it is undeniable that this is one of the segments of the population that has suffered the most the effects of exclusion, which have become an obstacle to their active participation in society and have undertook, unacceptably, the exercise of full citizenship. It is therefore up to each of us, by the exercise of free will, to assume our responsibilities as active and reflective citizens, as a key element in building a society richer in values such as tolerance and solidarity, and to endorse a creative and respectful society of Human Rights. It is imperative that we always keep in mind the maxim that Education is fundamental to the existence of a person, but history elucidates that this has not always been understood as so regarding to people with disabilities. There is, above all, through the analysis of legislative documents, the existence of several changes in the social construction of Disability that point to a continuous evolution in social and political attitudes, which, in the last decades, have been gradually facing the disabled person as a full-fledged citizen. As such, their education is assumed as a concern and the focus of their educational integration as a strategy to fight exclusion is noticed. However, at present, the methodological and philosophical option that the educational system is committed to promoting, with regard to children and young people with disabilities, it is their integration and inclusion in regular educational structures. Thus, the framework of the educational responses provided to these students in these same structures should be analysed. It is important to analyse the extent to which these educational responses converge to the guiding principles of this new educational philosophy that are perfectly defined in the Salamanca Statement and Framework For Action on Special Needs Education (1994). Therefore, the present essay aims to contribute to the analysis and reflection on the problem of disability, specifically Duchenne's dystrophy, in the context of situations of inclusion in regular educational structures, particularly in Schools of Second and Third Cycles of Basic Education (ages 11 to 15) Portuguese Educational System, in order to try to verify if a universality of access and success in education can be effectively guaranteed to students with disabilities. Due to the professional practice in Special Needs Education, a study was carried out with a student with Duchenne dystrophy, integrated in the regular educational system of the municipality of Guimarães, and it was confirmed that his integration in this school, undoubtedly, valorised his skills and increased his autonomy and socialisation in the surroundings. This work aims to contribute to the reflection on a particular research: The Special Needs Education of children with Duchenne ! ! This case was chosen because it was considered important to try to understand the relationship between the context, the interlocutors and the young person / adolescent with this dystrophy in social interaction. The conclusions point us to the barriers for a restructuring in order to eliminate some of the evidenced needs, both at architectonic, physical, and organizational level, as well as in pedagogical and human resources. Some theoretical elements are advanced in an attempt to account for some of the parameters that guide the research.
Whereas it is recognised that people with disabilities do not constitute themselves as a homogeneous group, it is undeniable that this is one of the segments of the population that has suffered the most the effects of exclusion, which have become an obstacle to their active participation in society and have undertook, unacceptably, the exercise of full citizenship. It is therefore up to each of us, by the exercise of free will, to assume our responsibilities as active and reflective citizens, as a key element in building a society richer in values such as tolerance and solidarity, and to endorse a creative and respectful society of Human Rights. It is imperative that we always keep in mind the maxim that Education is fundamental to the existence of a person, but history elucidates that this has not always been understood as so regarding to people with disabilities. There is, above all, through the analysis of legislative documents, the existence of several changes in the social construction of Disability that point to a continuous evolution in social and political attitudes, which, in the last decades, have been gradually facing the disabled person as a full-fledged citizen. As such, their education is assumed as a concern and the focus of their educational integration as a strategy to fight exclusion is noticed. However, at present, the methodological and philosophical option that the educational system is committed to promoting, with regard to children and young people with disabilities, it is their integration and inclusion in regular educational structures. Thus, the framework of the educational responses provided to these students in these same structures should be analysed. It is important to analyse the extent to which these educational responses converge to the guiding principles of this new educational philosophy that are perfectly defined in the Salamanca Statement and Framework For Action on Special Needs Education (1994). Therefore, the present essay aims to contribute to the analysis and reflection on the problem of disability, specifically Duchenne's dystrophy, in the context of situations of inclusion in regular educational structures, particularly in Schools of Second and Third Cycles of Basic Education (ages 11 to 15) Portuguese Educational System, in order to try to verify if a universality of access and success in education can be effectively guaranteed to students with disabilities. Due to the professional practice in Special Needs Education, a study was carried out with a student with Duchenne dystrophy, integrated in the regular educational system of the municipality of Guimarães, and it was confirmed that his integration in this school, undoubtedly, valorised his skills and increased his autonomy and socialisation in the surroundings. This work aims to contribute to the reflection on a particular research: The Special Needs Education of children with Duchenne ! ! This case was chosen because it was considered important to try to understand the relationship between the context, the interlocutors and the young person / adolescent with this dystrophy in social interaction. The conclusions point us to the barriers for a restructuring in order to eliminate some of the evidenced needs, both at architectonic, physical, and organizational level, as well as in pedagogical and human resources. Some theoretical elements are advanced in an attempt to account for some of the parameters that guide the research.
Description
Keywords
Educação Especial (EE) Distrofia Muscular de Duchenne (DMD) Necessidades Educativas Especiais (NEE) Inclusão Sucesso escolar Duchenne Muscular Dystrophy (DMD) Special Education (SE) Special Needs Education (SNE) Inclusion Success at school