It’s Not U(sher), It’s the System – Towards Co-Created Pathways of Support?

Young people living with Usher syndrome navigate adolescence in intersection with a progressive combined vision and hearing impairment. This article is part of a Danish action research project involving three Future Workshops with young people with Usher syndrome (n=8), relatives (n=7), and deafblind consultants (n=6). The article is based solely on data from the workshop with young people to examine how support becomes meaningful from their perspective. The main argument is that deafblind counselling is experienced as meaningful when it helps young people create and protect spaces where autonomy and identity can be exercised. The analysis also shows how such spaces are threatened by institutional logics and bureaucratic fragmentation. By combining perspectives from disability studies on ableism with Bamberg’s (2011) model of identity dilemmas, the article shows how young people actively negotiate identity and agency within welfare systems not fully adapted to a life with a progressive impairment. Thus, the article points to the need for co-created pathways of support that align professional practices with young people’s lived temporalities and their pursuit of autonomy and space. This contributes to debates on the Nordic welfare model by examining how welfare services, despite their inclusive ambitions, can unintentionally constrain young people’s autonomy when support is organised around predefined service packages and administrative timelines.