Vida precária, alegria e solidão: a coragem da verdade na experiência de si de crianças deficientes

Abstract

In Brazil, traditionally, children with disabilities were educated in special needs schools, shaping a very specific area of special needs education, since the middle of the 19th century. These schools established themselves as segregated spaces, fostering students with many physical, sensory and cognitive needs. However, since the last decade of the 20th century, inclusion in schools have become an imperative and entered in the “order of discourse”, establishing new truths for education of the afore-mentioned children. Therefore, they acquire the “right” to education at the same schools where other children attend, by a policy labeled as special needs education in the inclusive education perspective. Nevertheless, what predominates in the existence of these children are experiences of rejection and exclusion, opening a field of discontinuities between the official discourse and the excluding practices that emerge routinely in schools. Although these children live in common educational spaces, they are submitted to the artifices of a biopower that consider them abnormal and act in order to correct and standardize them. In the present dissertation, I take as the object of study the experiences of two primary school students enrolled at public schools in Belo Horizonte. Both of them have disabilities and I refer to them with fictional names. The first student is 7-year-old Gabriel, a wheelchair user and enrolled in the 1st grade at beginning of this research. The other one is 9-year-old Samuel, a child with multiple disabilities (blindness, physical disability and communication disorder) and enrolled in the 3th grade at beginning of this research. The objective of this study was to comprehend the self-constitution of these children, facing the experience of disability, by verifying if they pursue freedom practices that denote an ethical possibility towards life. This study has as its main theoretical and conceptual framework the notion of ethics proposed by Michel Foucault. In this framework, some themes such as: “practice of freedom”, “the aesthetics of existence” “life as works of art” “parrhesia”, “the courage of truth” were relevant. The methodological approach of this research was inspired by the proposal presented by Foucault, in his studies of genealogy of ethics. It refers to the four elements with which a subject develops an experience of the self, namely: ethics substance (ethical problematization); ways of subjection; activities forming the self (practices of the self) and teleology (finality). This research has shown that these children’s experience of the self is related to the ethical problematization of living a precarious life. When faced with such problematization, they demonstrate as ways of subjection the joy as affirmation of life. The practices of the self involve activities of looking, waiting and learning to live in solitude. The finality of this ethical problematization is the courage of showing the disability life and living it intensely by means of the courage of truth. The main thesis developed in this dissertation is that, although these children live a precarious life, they declare their existence by an ethical and aesthetical work, disclosing a courageous relationship with the truth.