Atuação política de grupos de pais de autistas no Rio de Janeiro: perspectivas para o campo da saúde

Abstract

The period between 2009 and 2012 was considered a landmark in the history of autistic people in Brazil, due to the enactment of the Federal Law 12.764, on December 27, 2012, which recognized autistics, for all legal purposes, such as people with disabilities. The use of disability as a political and identity tools has defined new directions of "struggle for rights". From the analysis of different strategies of political action undertaken by three groups of parents of autistic in the State of Rio de Janeiro (APADEM, Mundo Azul e Pelo Direito dos Autistas), this work will discuss about their main demands and claims. The choice of these three associative devices is justified by their respective coordinators exclusively attributed to parents and families of autistic, and also the national recognition of their participation in the formulation of projects, laws and events related to the spectrum. Therefore, this master thesis aims to answer the following questions: a) what processes and motivations allow a private matter (having an autistic child) become a public issue? b) how they group together, what are their claims and whom they are addressed? c) what expectations, strategies and tensions are involved in the "movement " of autism social movements? In addition to interviews with qualified informants, the research methodology involved participant observation in demonstrations, public hearings, lectures and commemorative dates, such as the World Autism Awareness Day. However, most of the ethnographic work was focused on the city of Volta Redonda, where fifteen years ago, was founded APADEM, paradigmatic case of political action of parents of autistic in the State of Rio de Janeiro. Through the partnership between civil society and government, Volta Redonda currently holds three municipal laws directed to autism and a range of specialized services. Finally, when presenting how the three groups of parents of autistic configure the politicization of the experience of disability, this dissertation aims to contribute to the academic field of new social movements and disability studies, both of great heuristic potential, but still little explored in Brazil.