Rights-based Rehabilitation: How can disabled people be involved in shaping services?

Rights-based Rehabilitation explores how disabled people’s views and experiences of the rehabilitation process can shape services and help to develop a rehabilitation policy which incorporates disability rights. The UN Convention on the rights of persons with disabilities includes the provision of ‘comprehensive habilitation and rehabilitation services’ (United Nations, 2008: n. pag.). Yet the World Health Organization identifies a lack of involvement of disabled people in the design, delivery and evaluation of rehabilitation services (2011). In reviewing the literature, I found minimal evidence of the involvement of disabled people in the shaping of research on rehabilitation. Funded by the CLAHRC East of England’s Patient and Public Involvement (PPI) Theme, the research agenda was informed by a project advisory group made up of disabled people who have been through rehabilitation. The group has advised on issues including the production of accessible participant information leaflets, recruitment and data analysis. The study involved 36 participants living with long-term physical and sensory impairments in the East of England. Data collection included semi-structured interviews, focus groups and a creative writing group. The latter generated new insights into the role of creativity and narrative in facilitating agency in rehabilitation. I analysed transcripts from the fieldwork abductively and iteratively, looking for key themes. The themes which emerged most prominently were: - the question of what it means to be involved in rehabilitation, including the importance of relationships; - the significance of being able to take up agency in rehabilitation, and the role of narrative in this process; - the temporality of rehabilitation experience and its connection with being valued. The thesis makes a distinctive contribution to our understanding of disabled people’s lived experiences of rehabilitation through its close analysis of new qualitative data, its deployment of PPI and its use of creative writing as a research method