To question and support the participation and citizenship of people with multiple disabilities and of their relatives. – Polycitoyens

“Polycitizens" is a participatory social science research-action project. It involves sociologists, Handéo (a federation of associations in the field of disability and autonomy), a group of parents and professionals, and a third-party helper. It follows a participatory research project called "Polyordinaries", which focused on the day-to-day functioning of families with a multi-disabled member.
Context. Today, the focus is on the inclusion of people with disabilities and the recognition of their civil rights. This inclusive movement crosses a movement of deinstitutionalisation. Families of people with multiple disabilities have expressed their fear of this movement and their concern for social participation for their member with multiple disabilities. The public authorities want to develop the provision of services for this population, and need knowledge about the needs of people with multiple disabilities and their families.
Research axes and methodology.
1. To conduct a research on citizenship and social participation of people with multiple disabilities, and of their families.
1.1. Modalities of social participation of persons with multiple disabilities and their relatives in their daily lives. Three questions will be explored: 1. how do the relatives of a person with multiple disabilities try to involve him/her in decisions, activities and his/her life project, and to make him/her exist as an autonomous subject? 2. what are the different registers of social participation? How is the social participation of all family members modified and how can medical and social services support these social participations? Method: interviews (parents and professionals), observations in institutions and services.
1.2. Voting rights. Recently, France has adopted a reform whereby the judge can no longer withdraw the right to vote from people under guardianship. For people with multiple disabilities, this raises theoretical and practical questions. 3 questions will be explored: What are the legislations and practices put in place by countries that have carried out this reform for a long time? How do families and professionals conceive this right to vote for people with multiple disabilities? How do they make it effective? Method: documentary survey, study trips (European countries), interviews (parents and professionals).
2. Co-production of stories with parents as a resource for social participation
The "Polyordinaries" project has led to the development of a "Narrative" method. The objective is to explore the possibility of publishing these stories with the parents, and to use them to improve their social participation and that of people with multiple disabilities. Methodology: co-production work with each parent and collective reflection during workshops.
The participatory approach: setting up a watch committee (with some parents and professionals), a research discussion group (with all participants), a thematic workshop. The third-party helper will help to make room for and clarify everyone's positions, to equip the researchers and participants to enable collaboration, to think about other research productions. Handéo will contribute to mobilising the actors in the field, to transferring knowledge into concrete actions and to valorising the research for a wide audience.
The expected results: 1. scientific (to produce knowledge on a little explored question), 2. political and practical (to produce tools to raise awareness, to enlighten public authorities), 3. methodological (to formalize the conditions, the stakes and the limits of the participative approach).