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Saúde e Sociedade

versão impressa ISSN 0104-1290versão On-line ISSN 1984-0470

Resumo

NUNES, Fernanda  e  ORTEGA, Francisco. Political activism of autistic parents in Rio de Janeiro: reflections on the “right to treatment”. Saude soc. [online]. 2016, vol.25, n.4, pp.964-975. ISSN 0104-1290.  http://dx.doi.org/10.1590/s0104-12902016163127.

This article approaches the claims of two main parent-activists groups - Light Blue and Sky Blue - in the struggle for the “right to treatment” of autism in the state of Rio de Janeiro. It focuses mainly on the forms of discourses and tensions about care and treatments provided by the Unified Health System (SUS). Therefore, our purpose is to understand to what extent their claims about forms of treatments approach the broader context of national health policies for autistic individuals. The laws drawn up by parent-activists along with political figures are highlighted, as well as the positioning and vocalizations that consider the assistance offered by the Network for Psychosocial Care (Raps) “insufficient” and/or “inadequate”. Our research methodology involved ethnographic research, conducted between 2012 and 2013 in events, meetings, and demonstrations organized by the two mentioned groups of autistic parents, as well as in-depth interviews with qualified informants (activist parents and relatives).

Palavras-chave : Autism; Family activism; Disabilities; Rights.

        · resumo em Português     · texto em Português     · Português ( pdf )