From Substitute to Supported Decision-Making: Participatory Action Research on the Convention on the Rights of Persons With Disabilities

In this article, we present findings from a participatory action-research program in France on the exercise of human rights and supported and substitute decision-making, inspired by the United Nations Convention on the Rights of Persons with Disabilities (“CRPD”). Bringing together persons with the lived experience of disability; academics; and health, social care, and support professionals, the project used the method of “experience-based construction of public problem” to transform experience into collective expertise. This enabled the exploration of support that people in vulnerable situations, whose capacity to exercise their human rights has weakened, need to make decisions in their lives and participate meaningfully in public debate. The relationship between the awareness of rights and exercise of rights is discussed. We argue for the need to balance out the positions of different contributors in participatory action research, in a reasoned manner, by recognizing the scientific and citizen-based participation of all partners.