A "pessoa humana" com distrofia muscular congênita e sua "mãe autêntica" em contexto educacional e domiciliar: um estudo fenomenológico em Edith Stein
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Data
2025-05-06
Autores
Cosmo, Jolimar
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Universidade Federal do Espírito Santo
Resumo
The research is situated within the field of Special Education and Inclusive Processes and seeks to investigate, from a phenomenological-existential perspective, what it is and how it is to be the “human person” Castiel, a young man with congenital muscular dystrophy (CMD), in both educational and home-based pedagogical support (HPS) contexts, alongside his “authentic mother” Catarina. This inquiry motivated a comprehensive description of the being-in-the-world of this subject with his mother, highlighting their educational, intersubjective, and existential experiences. The general objective of this study is to comprehensively describe what it is and how it is to be the “human person” Castiel, a young “being-in-the-world” with CMD in educational and home contexts, almost always accompanied by his “authentic mother” Catarina. Specifically, the objectives are: to describe what it is and how it is to be Castiel (with his mother Catarina), a “human person” with CMD, revealing his formative experiences and his subjectivity, intersubjectivity, and interiority; to identify national, state, and municipal special education policies that influenced the formation, inclusion, and ways of being of Castiel and his mother, especially in the schooling process and home-based support, through a descriptive approach; and to produce an empathetic phenomenological-existential analysis, inspired by Edith Stein, of Castiel’s “human personhood” (with his mother) as a being-in-the-world with CMD. The study is grounded in Edith Stein’s phenomenology (1891-1942), discussing concepts such as human person, authentic mother, empathy, intersubjectivity, subjectivity, interiority, and formation. It also engages with references in special and inclusive education, analyzing the relationship between the person with CMD, educational spaces, and HPS. This is a qualitative study with a phenomenological-existential approach. Data production instruments included interviews, field diary entries, photographs, documents, and social media interactions with Castiel, Catarina, and teachers involved in his educational journey, along with an analysis of school, HPS, and home care records. Data interpretation followed a comprehensive hermeneutic, seeking to unveil Castiel’s modes of being-in-the-world. The analysis of narratives and experiences indicates that Castiel experiences education as a space of resistance, freedom, and meaning-making, despite the limitations and possibilities imposed by CMD. His “authentic mother” Catarina emerges as a central figure mediating this process, embodying a being-for-the-other in a relationship of empathy, care, formation, and dedication to Castiel. The findings reinforce the importance of public policies for education, HPS, and teacher training for effective inclusive practices. The research contributes to understanding the “human person” with CMD in their educational journey and home-based support, highlighting the need for an empathetic and phenomenological perspective in inclusive education. Keywords: human person; Congenital Muscular Dystrophy; home-based pedagogical support; authentic mother; phenomenology.
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Pessoa humana , distrofia muscular congênita , atendimento pedagógico domiciliar , Mãe autêntica , Fenomenologia