On Becoming a Hero: The Entrepreneurial Configuration of Users and in the Independent Living Programmes for People with Down Syndrome in Spain

• In Event: Becoming Otherwise: STS Inroads into Techniques of the Better Self - II: Limits and Agency

Abstract

The emergence of the independent living (IL) paradigm, together with direct payment aids to promote the move out of institutions for people with Down Syndrome (DS), produced a significant change in how the organizations in the field worked out their housing programs in Spain. Within this framework, during the last 10 years this sector lived a split of services working on the promotion of IL.
Drawing on a collection of ethnographic observations and interviews within the Catalan Foundation of Down Syndrome, we will show how the IL support service “I’m going home”, allows the move from the parental house by facilitating technical and human support. Support here is driven by the users’ right to choose, and materialized on the individual "Plan for Independent Living". At the same time the aim of the program is to help the users to establish social relationships in the community. Building from here, the paper examines the discourses, practices and sociomaterial arrangements that enact an independent life, and examines the emergent configurations of usership. In particular, it focuses on the production of a constantly self-motivated and entrepreneurial user. A “quotidian hero”, as professionals working in the field usually define them. A living image about what someone with DS can be, by working on become active, self-motivated and open to continuous learning. In the same vain the paper reflects on how this “hero” is made possible not only against the stigma associated with DS, but in relation with it.
The paper ends with a reflection on the implications of these processes on shaping disabled people’s subjectivity, as well as on the impact on their identity.

Authors

• Joan Moyà-Köhler, Open University of Catalunya

• Israel Rodríguez-Giralt, Fundació per la Universitat Oberta de Catalunya