Background:

Inclusive research is research where people with intellectual disabilities own the research question, have a vested interest in the outcomes and participate as co-researchers. It is about people with intellectual disabilities conducting research with other researchers without disabilities, and being involved as active and not passive participants. The Centre for Disability Studies (CDS) Inclusive Research Network consists of members with and without intellectual disability and conducts research consistent with this approach. It is guided by the motto Nothing About us Without Us. Such an approach to research reflects the rights of people with intellectual disabilities to have control in the research process which in turn is also aligned with the principles of the Convention of the Rights of Persons with Disabilities (CRPD, 2006).

Method:

Members of the CDS Inclusive Research Network designed and conducted a small study to explore the experiences of people with intellectual disability of the impact of the CRPD in their daily lives in the areas of home, employment, education and health - areas the Network members identified as important, and which are also consistent with the CRPD
This paper reports on the findings from the aspect of the study concerned with health. Researcher teams (one co-researcher with an intellectual disability and one without) conducted individual interviews with 24 participants with intellectual disability on their overall health and well-being as well as their experiences with the healthcare system. Interview transcripts and reflective memos comprised the study data and were analysed to identify the key themes and their interrelationships.

Results:

Participants indicated varying levels of satisfaction with their health and their overall well-being, and the healthcare system with which they were involved. They noted the importance of effective communication with health personnel as essential, but very often lacking.
Reflections of the team on the inclusive research experience indicated a growth not only in research skills, but also in team work and respectful collaboration.

Implications:

These findings have highlighted the everyday difficulties many people with intellectual disability experience in exercising their right to health and well-being. Hence, it draws attention to the need to explore the everyday life experiences people with intellectual disabilities of their rights mandated under the CRPD. It cannot be assumed that these rights are recognised by the broader community. Additionally, the reflections of the research team add to the small but growing knowledge on inclusive research and the benefits gained by all team members.