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Abstract(s)
Escrever sobre a história do Tiago e de uma Associação de Famílias Para Apoio a Pessoas com Necessidades Especiais leva a transferir histórias de vida para o espaço escolar, mostrando que a inclusão não se concretiza apenas por decreto, mas na conjugação de um trabalho conjunto, num compromisso com a construção de uma escola e sociedade inclusivas, dando a todos os alunos, independentemente das suas características, todas as oportunidades para realizarem aprendizagens significativas, respeitando-os e valorizando-os nas suas potencialidades. A escola atual deve ser um espaço onde se corrigem assimetrias e onde se deve desenvolver ao máximo o potencial de cada aluno, sendo este um desígnio e um desafio para o qual todas as escolas e a sociedade, em geral, estão convocadas. É neste contexto que emerge este trabalho de investigação aqui desenvolvido. Delimitou-se o objeto de estudo na seguinte questão: O que carateriza a história de vida do Tiago?
Tendo em conta o problema enunciado, definiu-se como objetivos de investigação: conhecer os principais problemas de saúde do Tiago; analisar as principais dificuldades no seu percurso de inclusão; identificar os fatores facilitadores do percurso de vida do Tiago; averiguar o contributo dos centros de atividades ocupacionais que o Tiago frequentou ao longo da sua vida; descrever a importância Associação de Famílias Para Apoio a Pessoas com Necessidades Especiais na vida do Tiago. No trabalho empírico seguiu-se uma metodologia de investigação qualitativa - estudo de caso - cuja recolha de dados foi realizada através de entrevistas semiestruturadas, observações e pesquisa documental. Para se compreender melhor a história de vida do Tiago e a Associação de Famílias Para Apoio a Pessoas com Necessidades Especiais contou-se com a participação do pai do Tiago e do Diretor da Associação.
O Tiago tem 41 anos e possui uma doença rara - SLO – Smith-Lemli-Opitz doença geralmente com deficiência mental profunda e a sua história de vida ajudou a compreender melhor um sem número de afetos, sensibilidades, dedicação, entrega e dificuldades na gestão do dia a dia de pais que sofrem e vivem angustiados com a incerteza do futuro. O pai e a mãe do Tiago, desde o seu nascimento, que recusaram a visão assistencial da educação das pessoas com necessidades de saúde especiais, procurando mostrar que as pessoas com deficiência mental merecem, em idade escolar, um plano educativo cuidado e, mais tarde, quando adultos, ter à sua disposição uma rede de centros ocupacionais, com o é exemplo a Associação de Famílias Para Apoio a Pessoas com Necessidades Especiais , que dá resposta às necessidades de cada utente, numa visão holística e humanizada do verdeiro cuidar de pessoas com necessidades especiais, garantindo-lhes o direito a viver com dignidade.
Writing about Tiago’s story and the Associação de Famílias Para Apoio a Pessoas com Necessidades Especiais, leads to the transfer of life stories to the school space, showing that inclusion is not only achieved by decree, but with a combination of joint work, a commitment to the construction of an inclusive school and society, giving all students, regardless of their characteristics, every opportunity to make meaningful learning, respecting them and valuing them in their potential. Schools today should be a space where asymmetries are corrected and the potential of each student is developed to the fullest, which is an objective and a challenge to which all schools and society in general are called. It is in this context that this research work developed here comes to light. The object of study was delimited in the following question: what is the relevance of Tiago’s life story to other lives with disabilities? Considering the stated problem, the following research objectives were defined: to know Tiago’s main health problems; to analyze the main difficulties in his inclusion path; to identify the facilitating factors of Tiago’s life course; to ascertain the contribution of the occupational activity centers that Tiago attended throughout his life; to describe the importance of the Associação de Famílias Para Apoio a Pessoas com Necessidades Especiais in Tiago’s life. The empirical work was followed by a qualitative research methodology - case study - in which the data collection was performed through semi-structured interviews, observations and documentary research. To better understand Tiago’s life story and the Associação de Famílias Para Apoio a Pessoas com Necessidades Especiais,Tiago’s father and the Association Director participated. Tiago is 41 years old and has a rare disease - SLO - Smith-Lemli-Opitz which is a disease that is usually associated with a profound mental handicap and his life story has helped to better understand a host of affections, sensitivities, dedication, commitment and difficulties in managing the disease and the daily life of parents who suffer and live in anguish about the uncertainty of the future. Tiago's father and mother, since his birth, who refused the welfare view of the education of people with special health needs, trying to show that people with mental disabilities deserve a careful educational plan, and later, as adults, deserve to have at their disposal a network of occupational centres, such as the Associação de Famílias Para Apoio a Pessoas com Necessidades Especiais, which responds to the needs of each user, in a holistic and humanized view of the true care of people with special needs, ensuring them the right to live with dignity.
Writing about Tiago’s story and the Associação de Famílias Para Apoio a Pessoas com Necessidades Especiais, leads to the transfer of life stories to the school space, showing that inclusion is not only achieved by decree, but with a combination of joint work, a commitment to the construction of an inclusive school and society, giving all students, regardless of their characteristics, every opportunity to make meaningful learning, respecting them and valuing them in their potential. Schools today should be a space where asymmetries are corrected and the potential of each student is developed to the fullest, which is an objective and a challenge to which all schools and society in general are called. It is in this context that this research work developed here comes to light. The object of study was delimited in the following question: what is the relevance of Tiago’s life story to other lives with disabilities? Considering the stated problem, the following research objectives were defined: to know Tiago’s main health problems; to analyze the main difficulties in his inclusion path; to identify the facilitating factors of Tiago’s life course; to ascertain the contribution of the occupational activity centers that Tiago attended throughout his life; to describe the importance of the Associação de Famílias Para Apoio a Pessoas com Necessidades Especiais in Tiago’s life. The empirical work was followed by a qualitative research methodology - case study - in which the data collection was performed through semi-structured interviews, observations and documentary research. To better understand Tiago’s life story and the Associação de Famílias Para Apoio a Pessoas com Necessidades Especiais,Tiago’s father and the Association Director participated. Tiago is 41 years old and has a rare disease - SLO - Smith-Lemli-Opitz which is a disease that is usually associated with a profound mental handicap and his life story has helped to better understand a host of affections, sensitivities, dedication, commitment and difficulties in managing the disease and the daily life of parents who suffer and live in anguish about the uncertainty of the future. Tiago's father and mother, since his birth, who refused the welfare view of the education of people with special health needs, trying to show that people with mental disabilities deserve a careful educational plan, and later, as adults, deserve to have at their disposal a network of occupational centres, such as the Associação de Famílias Para Apoio a Pessoas com Necessidades Especiais, which responds to the needs of each user, in a holistic and humanized view of the true care of people with special needs, ensuring them the right to live with dignity.
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Keywords
Histórias com vida Tiago Associação de Famílias Para Apoio a Pessoas com Necessidades Especiais Inclusão Stories with life inclusion