”Tur att jag inte blev omprövad i år” – Samtal om ett villkorat liv med personlig assistans

Abstract

Sweden is often highlighted as a pioneering country in terms of personal assistance (PA) and human rights. However, research shows that the assessment of PA is guided by a medical understanding of disability and by austerity rather than by disability policy. Furthermore, the number of people with state-funded PA has decreased. The purpose of the article is to illuminate the contradictions that characterize life with PA in today’s Sweden. PA is about being able to influence one’s living conditions, to participate and to exercise self-determination, but also about lack of power and control since the right to PA can be withdrawn. The article draws on a participant-based research circle in which users and their representatives were among the participants. The results highlight the complex relationships between personal support and the opportunity to shape one’s existence. PA is considered crucial for everyday life, relationships, work and health. Contacts with the authorities evoke powerlessness, and the fear of losing the PA is palpable. The article contributes knowledge about the social aspects of disability and how reforms and cutbacks influence people’s lives. Such knowledge is essential as, in a Swedish context, PA has become a matter of need rather than of human rights.