Résumés
Abstract
Assisted Living for adults with disabilities is a recent subject inboth Brazilian legislation and public debates. Although stillstigmatized by the idea that those who seek different livingarrangements for their children would be abandoning them, the concernwith both the autonomy of people with disabilities and the well-beingof the caregivers has prompted this theme to gain force in public andprivate spheres. Drawing from an ethnographic work with mothers ofadults with cognitive disabilitiesy from Porto Alegre, Brazil, whoconstituted a group to demand governmental action regarding assistedliving facilities, I propose a reflection on how such plea enables afurther discussion on the way disability and care are enacted. I arguethat by thinking of their trajectories through the care practices theyentail, one can track the moralities surrounding their experience ofmotherhood and how they are telling of the way disability is dealt within this specific time and place. Situating their claim within broaderdebates on institutionalization, I stress how their plea cannot beunderstood without a critical stand on ableism and the invisibility anddevaluation of care work.
Keywords:
- Assisted Living,
- Cognitive Disability,
- Care,
- Brazil,
- Institutionalization
Résumé
Les résidences avec services pour adultes ayant des incapacités est un sujet récent tant dans la législation brésilienne que dans les débats publics. Bien que toujours stigmatisé par l’idée que ceux qui recherchent des modes de vie différents pour leurs enfants les abandonneraient, le souci de l’autonomie des personnes ayant des incapacités et du bien-être des soignants a poussé ce thème à prendre de l’ampleur au public et au privé. S’appuyant sur un travail ethnographique avec des mères d’adultes ayant des incapacités cognitives de Porto Alegre, au Brésil, qui ont constitué un groupe pour exiger une action gouvernementale concernant les résidences avec services, je propose une réflexion sur la manière dont un tel plaidoyer permet une discussion plus approfondie sur le handicap et la manière dont les soins sont donnés. Je soutiens qu’en pensant à leurs trajectoires à travers les pratiques de soins qu’elles impliquent, on peut suivre les moralités entourant leur expérience de la maternité et comment elles racontent la façon dont le handicap est traité à cette époque et dans ce lieu précis. Situant leur revendication dans des débats plus larges sur l’institutionnalisation, j’insiste sur la façon dont leur plaidoyer ne peut être compris sans une position critique sur le capacitisme, l’invisibilité et la dévaluation du travail de soins.
Mots-clés :
- résidence avec services,
- handicap cognitif,
- soin,
- Brésil,
- institutionnalisation
Parties annexes
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