Beyond patientism: Users’ organizations deployment of an auxiliary welfare system in Norway

Although often concerned with users' representation in policy-making, the historiography of illegal drugs has largely invisibilized users’ role in shaping the public system they need assistance from, and whose rules they have to live by–or around. The present study of the Norwegian case examines how people who use/have used drugs have established users’ organizations in response to perceived failures and injustices in public health care, welfare services and drug policy. Further, this study analyzes which kinds of projects users' organizations have conducted, in which relation to established welfare and expertise, and promoting which understandings of users and their rights.

This study is based on oral history and a content analysis of grant applications and official documents. It focuses on the period 2004–2014.

Users have not only used, but relentlessly criticized and shaped the Norwegian health care and welfare system they depend on, and they have complemented it by building their own complementary welfare services. Today’s users organizations have done so mostly from an auxiliary position, i.e. in ways subordinated to the established regulations and priorities in place, although often coming from a more radical critique of the system and promoting sometimes radical change. The organizations have also used a patient rights frame to increasingly promote users' human rights.

Acknowledging the users’ organizations’ historical creation and sustenance of welfare services makes visible the productive agency deployed by users in practice, not within the limited frames of patient agency, but as agents of the social change they want to achieve; and not only as shapers but as providers of the welfare services they argue for. This takes the discussion about users' participation far beyond the question of users' representation in policy-making, and thereby refigures notions of users' participation and agency.