Beyond Autonomy and Language – Towards a Disability Studies’ Perspective on Dementia (CGD, Maastricht University)
The two year research project “Beyond Autonomy and Language” aimed to contribute to the development of a disability studies’ perspective on dementia. It sought to provide a theoretical basis to contemporary thinking about participatory citizenship of people with dementia. It focused on societal practices and discourses that seek to engage the ‘voice’ and articulate the subjectivity of people with dementia. The project combined empirical research of these practices and discourses with philosophical reflection on the presuppositions and consequences of these approaches for the conceptualization of the subject. The larger project included four case studies: representations subject-with-dementia in film and literature (Aagje Swinnen); articulation of the subject-with-dementia in clowning (Ruud Hendriks); mediation of the subject-with-dementia in assistive technology (Ike Kamphof); expression of subject-with-dementia in artistic practice (Annette Hendrikx).
Keeping disability studies’ adage “nothing about us, without us” in mind, the project reflected on (im)possibilities to incorporate the experiences of people with dementia in health care research (including our own!) and/or services. Articulating and listening to the voice of people with dementia themselves is inherently problematic, because dementia concerns an impairment of the ability to form and express thoughts and opinions. This project was thus especially interested in innovative efforts to engage with the ‘silent’ perspectives of people with dementia, often in combination with input of others who speak on behalf of people with dementia (health care professionals, family, designers, artists, et cetera).
This project secured funding from ZonMw (Program: Disability Studies in the Netherlands).
