Improving understanding of service user involvement and identity: Disabled people bringing ourselves out of the half-shadows

Abstract

Abstract: We are a group of disabled service users ‘whose experiences are semi-visible or semi-acknowledged within normative discourses’. We have conducted research with other disabled service users to circumvent challenges of research co-production and facilitate inclusion in research of ourselves and our disabled peers who are frequently described as ‘hard to reach’. We carried out this research in order to enhance our own visibility as researchers and bring our experience as disabled service-user representatives out of the ‘half shadows’. In doing this we hoped to expand awareness of the dynamics at play in service user-representation. This research arose directly out of the concerns of the late Patricia Chambers, a disabled woman who expressed deep concern about how her experience as a service user –representative was routinely rendered semi-visible or semi-acknowledged within normative discourses. It begins to explore the extent of our rendition to the half-shadows and to work out strategies for bringing our experience in to the light.

Keywords: research access; visibility; service users; user-led research; experience