Doctor of Philosophy
Health and Rehabilitation Sciences
Kinsella, Elizabeth Anne
In self-managed attendant services, disabled people organize and manage their own personal support services. ‘Self-managers’ take responsibility to recruit, hire, train and manage ‘attendants’ in order to have greater autonomy in attendant services, and in everyday life. Where the tasks associated with self-managing attendant services are often represented as responsibilities, this research begins with the assumption that these activities constitute work. Following critical disability studies and critical feminist scholarship, work is defined broadly as efforts made to organize and manage attendant services within self-managed models. The research presented adopts a reflexive ethnographic methodological approach to explore multiple perspectives on the work self-managers and potential others contribute in the context of one self-managed program in Ontario, Canada.
This dissertation is comprised of four integrated manuscripts, in addition to introduction and discussion chapters. The first manuscript interrogates a reflexive account of my personal and professional experiences as an attendant working within a self-managed model and theorizes embodied reflexivity as an approach to the generation of practice-based knowledge. The second manuscript elaborates a critical disability studies theoretical framework and applies this framework to critically analyze official accounts of the Ontario self-managed attendant services program. The third and fourth manuscripts present findings from the ethnographic study, reporting on the work of self-managing attendant services and considering implications. The third manuscript presents an analysis of participant-reported tasks and responsibilities, highlighting the often-invisible character of self-managers’ work and discussing factors that may be implicated in rendering this work invisible. The fourth manuscript adopts a temporal theoretical lens to explore the relational work self-managers and attendants reported in the study, and to consider both the liberatory and marginalizing dimensions of such work.
This thesis contributes knowledge pertaining to social, economic and cultural factors that shape the work self-managers and others contribute through participation in self-managed attendant services. This research further contributes theoretically informed insights about the work of self-managing attendant services, and opens a number of theoretical, methodological and ethical discussions. This work has implications for self-managers and others who participate in self-managed attendant services, for advocates and policy-makers, for professionals, and for health professional education.
Katzman, Erika, "The Work of Self-Managing Attendant Services: A Reflexive Ethnographic Study" (2018). Electronic Thesis and Dissertation Repository. 5853.