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Interface - Comunicação, Saúde, Educação

On-line version ISSN 1807-5762

Abstract

OLIVER, Fátima Corrêa et al. Participation and disabled people's growing awareness of how to exercise their rights: an analysis of a community experience. Interface (Botucatu) [online]. 2004, vol.8, n.15, pp. 275-288. ISSN 1807-5762.  http://dx.doi.org/10.1590/S1414-32832004000200007.

This article discusses a 12-month project of community-based rehabilitation in a Sao Paulo City neighborhood. Focus is directed towards the program's joint proposition and management by health providers and relatives of disabled children and youth, which was called The Co-existence Group. This qualitative study reconstructs the experience by drawing on the meanings assigned to it by the different agents involved. Analysis is based on focus groups with female participants, interviews with community members, and with officers representing local social equipments. The importance of mothers and local inhabitants is highlighted both in diagnosing disabled people's condition and in constructing collective strategies in order to deal with the family's experience of isolation. The Group allowed participants to deal better with the intense psychic pain they expressed, particularly the mothers, and to establish social and emotional exchanges, leading to social support, construction of emancipation and autonomy [empowerment]. The process also led to increased awareness of social rights and of the legitimacy of this social segment's claims. It helped to enhance the visibility of disablement issues amongst community members and to reaffirm the importance of actions based on social-family integration, in order to minimize both disabled persons' and their relatives/caregivers' vulnerability, thus lessening processes of social exclusion.

Keywords : Handicapped advocacy; disability; rehabilitation; social support; community participation; human rights; caregivers.

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