Living Arrangements and the Enactment of Disability: Reflection on Care Practices and Cognitive Disability in South Brazil

• In Event: Beyond the Prosthetic Imaginary: New Intersections between STS and Disability Studies - I

Abstract

Assisted Living for adults with disabilities is a recent theme in both Brazilian legislation and public debates. Drawing from an ethnographic work with a group of mothers of adults with cognitive disability from Porto Alegre, Brazil, who constituted a Movement to demand governmental action regarding assisted living facilities, I propose a reflection on how such plea enables further discussion on the way disability and care are enacted. The claim for different living arrangements for their offspring brings to the fore and is an object of constant judgments connected to the experience of disability. Moreover, since such spaces are often not only the place where one lives but also where therapeutic activities are performed, their experience is embedded in broader discussions of institutionalization and normalization of disabled bodies and minds. Through the present work and relying on critical disability studies and science and technology studies, I argue for the complexity of this matter. Drawing attention to how discussions on the rights of people with disabilities, autonomy, and independence must be accompanied by considerations on the experience of care-takers I trace the associations of which multiple versions of disability and care are the effect. With that, I propose the claim for assisted living, as a location where disability enacts everyday life, can be a productive site to think on different ways of being in the world. In such a way that the house, more than a space where one lives is also where cognitive disability is enacted.

Author

• Helena Moura Fietz, Universidade Federal do Rio Grande do Sul - UFRGS