The ups and downs of social participation: experiences of wheelchair users in Norway

Abstract

Purpose. The primary aim of the study was to explore how people with a disability experience participation in society. A secondary aim was to contribute to the understanding of the concept of participation in terms of the International Classification of Functioning, Disability and Health (ICF).

Method. Six people with disabilities participated in focus group discussions. The data were analysed following the guidelines for the constant comparative method.

Results. Three main categories emerged with regard to the participants' experiences of participation in society. These included: (1) being engaged, (2) being a member of society and (3) interacting as a citizen. Furthermore, a sense of ‘climbing up and sliding down the participation ladder’ emerged as a core category of participation. This image reflected the dynamic interaction between individual and society; between, on one hand, an individual’ attitude, engagement, motivation, interest and capacity, as well as their sense of responsibility vis-a-vis an activity or a social group; and, on the other hand, the opportunities that society and their immediate social worlds offer them.

Conclusions. The fact that participants experience social participation as ‘climbing up and sliding down the participation ladder’ is important as it enables service providers, managers and policy makers to identify which intrapersonal and environmental factors operate together to limit or enhance the social participation of people with disabilities. This also implies that there is a need for a committed relationship in issues concerning participation for all in society, between people with disabilities and urban planners, and service providers. Findings also imply that participation means being autonomous and making decisions about one's own life and that the subjective dimension of participation must be considered in the revision of the ICF model. Another consideration is to separate activity and participation into two dimensions; i.e. to render more visible the fact that participation is related to environmental, as well as to personal, factors.

Keywords:

• Wheelchair users
• participation
• ICF

Acknowledgements

We would like to thank all the participants who willingly shared their experiences of participation in society with us. Thanks also go to the Norwegian Association of Disabled (NAD) South West Region for recruiting members for our research. We are indebted to occupational therapist Bjørg Rene for her contribution to the project plan, assistance in the focus-group discussions and in part of the early analysis process.

Declaration of interest: This study was financially supported by the Norwegian Ministry of Health and Care Services and the Norwegian Association of Occupational Therapists. The authors report no conflict of interest. The authors alone are responsible for the content and writing of the paper.