A responsabilidade de educar e de cuidar: quando a deficiência segrega mães-cuidadoras de estudantes com TEA

Abstract

This is an investigation about on the dynamics of the care betwen mothers who care of students with autism spectrum disorder (ASD). The objective of the study is to elucidate how / what is the dynamic of care among mothers, analyzing the convergent and divergent processes of care, after the National Policy of Inclusion of Special Education in the Perspective of Inclusive Education / 2007. Was investigated the problem: how the segregation imposed by care and disability if relate historically and socially with the everyday experiences of mothers who caregives about protection, education and care of children and adolescents with asd? The hypothesis of the research was based on the idea that mothers caregivers of children and adolescents with ASD suffer social segregation over time. There is a speech at the Centro de Atendimento Educacional Especializado Pestalozzi da Bahia (CAEEPB) that are them responsible for not inclusion or greater difficulty in educational inclusion of their children / students. In this intricate complex of multifaceted relationships, I believe in the relation of proximity with the other, in moral ties, and in the recognition of the situation of disadvantage (restriction, silence, discrimination and confinement), as conditions that reaffirm the understanding of the stereotyped role of the mother caregiver. The option for the qualitative methodology was made to value the narratives of the families and the ethnographic aspect of the insertion of the researcher in the field. Were participating in the study 05 mothers caregives of students with ASD at CAEEPB, all the families are beneficiaries of the Benefício de Prestação Continuada - BPC na escola Program a direct income transfer policy that aims to promote citizenship and the educational inclusion of theirs beneficiaries, with zero and eighteen years. Were used semi-structured interview and field diary scripts in data collection. After reading and analyzing the data, the interpretations lead to believe in the physical and emotional overload with the activity of caring as a factor of depression and social isolation. The special school is considered support for care and social insertion. The ethics of care is linked to the ethics of justice and the effective recognition of difference and the promotion of equality; the transfer of responsibility from caring to mothers / families maintains the condition of main caregiver of the disability; the poverty of the support network and the demands for care, provision, protection and visibility, with the inclusive policy impose on mothers the profession of care.