Synchronizing autonomies: study on an independent living service for people with Down syndrome
The emergence of the independent living paradigm (IL), together with changes in policy aids to promote the move out of institutions for people with learning disabilities (LD), produced a significant change in how the organizations in the field worked out their housing programs in Spain. The principles in which this paradigm is based, –focused on a strong decision-making power on the part of the user– encounter problems when it comes to joining the field of people with LD, as this collective still lives under the umbrella of stigma and infantilizing discourses, and their “capacity” for taking “good decisions” is usually under discussion.
Drawing on ethnographic observations within the independent living program ‘Me’n Vaig a Casa’ (from the Catalan Private Down Syndrome Foundation), and building upon STS premises and concepts, we will explore what does it mean to “become an autonomous subject” for a person with Down Syndrome, how this autonomy is performed, and to what extent the service enables or disables people with learning disabilities. In the same vein, the monograph discusses how this independent living program facilitates, through a concrete assemblage, and a constant work of adjustment of an actor-network, the coexistence of two different notions of independent living that circulate within the field. On the one hand, the idea of “emancipated autonomy”, the need to find a space for self-realization for people with intellectual disabilities, and, on the other, a “ensured autonomy”, or the need to provide a safe place for living. We explore the notion of “synchronized autonomy” as the resulting autonomy from this process of constant adjustment that allows a person with down syndrome to live independently.
The work ends with a reflection on the relationship between independent living and learning disability, and how this cross-over leads us to enrich the postulates of the Independent Living philosophy. Finally, the thesis also makes a reflection on the very notion of Down syndrome based on the concept of assemblage that we take from the Actor-Network Theory.
Moyà-Köhler, J. (2018). Sincronitzant autonomies: estudi d’un servei de vida independent per a persones amb la síndrome de Down (Tesi Doctoral) Universitat Autònoma de Barcelona (Barcelona)