Service-user organisations and the Chilean mental health system : tracing policy expectations and political contestations

Abstract

Calls for the involvement of service users and their organisations in the design, provision and evaluation of services are prominent in contemporary mental health policy discourse. Models and examples have penetrated national agendas, shaping definitions and expectations about the role and potential contribution of users. The social sciences have addressed this process, especially in the English-speaking world where service-user activism has a long history and involvement practices are well established. Most of this literature assumes that between the goals of service user groups, family organisations and mental health authorities there is continuity. If friction arises, it is marginal in relation to a set of shared aspirations: More prevention, better services, safer treatments, etc. This approach, common in ‘Global Mental Health’ interventions and calls, frames participation and users’ involvement as a technical decision in the hands of mental health systems. On the other hand, a critical literature, particularly based on English-speaking countries, has denounced the futility and superficiality of participatory agendas and their ability to hijack the authentic voices of users on the ground. However, the sharp distinction between a technical and a critical approach does not provide a suitable framework for the identification, description and analysis of the processes by which participation becomes relevant for mental health systems and the emergent self-organisation and self-differentiation of user groups. Applying Niklas Luhmann’s version of social systems theory, and drawing on interviews and participant observation with users, professionals and policymakers, this project simultaneously explores the emergence of mental health service-user initiatives in Chile and the ways in which users’ participation is - and has been - approached and defined by professionals and mental health services. As an exercise of ‘second-order observation’, it takes a step back from the technical/critical distinction, asking how mental health systems observe the collective actions of users and how autonomous user groups organise and define themselves vis-a-vis the observation and expectations of mental health systems. Through four independent papers, this thesis demonstrates that the way in which the mental health system defines and approaches the actions of users is less a result of their organised actions than of the changing needs of mental health policy for ‘user representation’, both at a broader policy level (Paper 1) and at the level of local participatory initiatives (Paper 2). Autonomous user groups, on the other hand, engage in the creation of forms of reciprocity and meaningful action at the margins of the mental health system (Paper 3). They embrace a politics of disengagement and incommensurability that challenges the interests and problematises the situation of social researchers (Paper 4). By adopting a constructivist, historical and reflexive approach, this thesis: highlights the role of policy shifts in determining how participation comes to be valued or devalued; puts forward an alternative approach to the political nature of users’ collective actions, based on practices disengagement, rejection and incommensurability; reframes ethical and epistemological tensions between academic research and activism in the mental health field. Finally, it demonstrates that, regardless of global calls, practices of participation are shaped by local policy scenarios and trajectories. These findings challenge the technical implementability of participation: although involving policy decisions and designs, participation is not a decision. It responds to contingent scenarios, it is subjected to complex expectations and its definition is the subject of contention by autonomous user groups.