Nothing About Us Without … Who? Disability Rights Organisations, Representation and Collaborative Governance

Abstract

When governments invite disability rights organisations to policy deliberations, how does the slogan ‘nothing about us without us’ translate into practice? This article draws upon a study about local disability organisations and their relationship to a regional consultative citizens’ council on disability issues in Sweden. Interviews were conducted with organisations that had seats on the council, politicians and officials on the council, as well as with disability organisations without seats on the council. Results show that conceptualisations of ‘disability’ in policies that regulate deliberations not only define what type of organisations are eligible for appointment to the council, but also influence how disability organisations identify, present themselves and what issues they advocate for – leading to divisions among organisations. The findings have implications for collaborative governance structures and disability rights organisations elsewhere – problematising issues around representation, institutionalisation of inclusion and the constantly evolving concept of what counts as ‘disability’.