The right of disabled people to consultation

Curriculum development in social education

Abstract

The research this article draws on examines the right of disabled people to participate in decision-making in matters that affect their interests in line with the UN Convention on the Rights of Persons with Disabilities (CRPD). Recognising the need to interpret this right broadly, as called for by the Committee on the Convention, this research focuses on participation in curriculum development in the field of social education at the University of Iceland. As licensed professionals, social educators provide key services and supports for disabled people’s right to full and effective participation at all levels of society. Disabled people, therefore, have a vested interest in the education of social educators. Their experiences and views must be heard and included in the curriculum development. This research focuses on consultations with people with intellectual disabilities, recognising that as a group, they often depend on the services and supports provided by social educators but have often had limited opportunity to express their views and concerns in decision-making processes. The theoretical foundation of this research is rooted in the human rights approach to disability, which focuses, first and foremost, on disabled people as rights-holders. States and state actors are responsible for ensuring and upholding these rights. Failure to do so is considered a breach of disabled people’s human rights. The human rights approach is closely related to the CRPD, which it both supports and reflects, including its emphasis on the rights of disabled people to take part in decision-making in matters that affect their lives.

The objective of this research was three-fold: first, to support the rights of disabled people to have a say in matters that concern their interests and affairs, in line with the CRPD; second, to improve the curriculum of a first-year course in the study of social education by drawing on the knowledge and lived experience of people with intellectual disabilities as experts in their own lives; and, third, to serve as an example for social education students of how actively supporting the rights of disabled people to participate in decision making can enrich the process and provide a better outcome.

The research employs a qualitative method, reflecting its emphasis on enlisting the perspectives and knowledge derived from the lived experience of disabled people themselves. Data gathering consisted of two focus group discussions, the first of which took place in June of 2022 and the second in August of that same year, to gauge what issues the participants considered important for social education students to know to be able to support disabled people in adulthood. In addition, semi-structured interviews were conducted with focus group participants to gain their views on the value of their own participation and of this research in general. Themes relating to adulthood covered by the course curriculum were also found and compared to the findings of the focus group discussions to determine where the curriculum could be improved.

The data analysis from the focus group discussions revealed four themes describing topics not included in the existing course material, underscoring the value of incorporating the knowledge and views of disabled people as experts in matters that concern their lives, needs and interests. Furthermore, the participants interviewed reported feeling empowered by their participation in the project and having experienced a shift in the balance of power with regard to service providers as a result of being recognised as experts based on their lived experience of disability. Participants called for the scope of the research to be extended and showed a measure of ownership by volunteering to continue their participation and to contribute to the course curriculum as guest speakers.