“Being Number One is the Biggest Obstacle”:

Abstract

This paper was inspired by a peculiar theme that emerged from qualitative interviews in Iceland, Norway and Sweden with leaders of Centres for Independent Living (CILs). CILs are peer-led organisations that maximise user-control of disability services. Paradoxically, the Nordic reputation as forerunners in deinstitutionalisation and independent living was considered an impediment to implementing Article 19 of the UN Convention on the Rights of Persons with Disabilities which requires “access to a range of support services, including personal assistance necessary to support living and inclusion in the community”. This contradiction prompted the questions: How is Article 19 implemented in Nordic welfare services? And why is previous progress towards independent living and personal assistance seen as an impediment to implementing the rights-based approach required by the Convention? The findings suggest that it is difficult to change a developed welfare system in which there are vested interests in maintaining the status quo. The reputation of “being number one” conceals problems such as inflexible services and the imbalance of power where the control of services lies with the system and the professionals, not the users. Keywords CRPD, disability, human rights, independent living

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