User/survivor leadership
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The international mental health user/survivor movement has been around for nearly 40 years. It started as a protest movement but it has over time become more absorbed into the mental health system. The movement has created leadership opportunities in its independent activities, and the idea of leadership in one’s own recovery, but the policy of service user participation in mental health services has failed to deliver consistent participation, let alone service user leadership.
Part of the problem lies with the unequal distribution of power and resources, which is reflected in the lack of an infrastructure to develop peer-run initiatives and the failure to provide users and survivors with tailored training and development, career pathways, standards of practice and so on. Part of the problem also lies with the concept of participation itself. To participate people have to rely on the invitation of others. In the last decade some users and survivors have used a stronger concept of leadership. Unlike participation, leadership assumes people with mental health problems have the power to set the agenda, make major decisions and control resources.
The user/survivor movement arose from the oppressive treatment of people diagnosed with severe mental illnesses. This includes forced interventions, damaging treatments, segregation in institutions and social exclusion. In response, the user/survivor movement was founded on the principle of self-determination - in other words the equal distribution of power at a collective level and ‘empowerment’ at an individual level. These values apply to power and relationships within the movement, but the movement also advocates for their application in mental health services and in the position people with lived experience have in society.
The mental health system was founded on values that are the antithesis to empowerment and equality. Therefore, user/survivor leadership will only thrive with some seismic shifts in the mental health arena on every level.
Firstly, there needs to be a philosophical shift in the way people view madness from the deficits-based pathology view to the view that madness is a crisis of being that value and meaning can be derived from. This is essential because the root of all forms of discrimination is the denial that madness is a legitimate human experience; the deficits-based view perpetuates inequality and disempowerment, despite its benign intent.
Secondly, there needs to be a psychological shift within users and survivors themselves from a marginalised disempowered identity to empowered identity. Similarly, people in the mental health workforce need to change their identities from expert authorities to expert advisors.
Thirdly, there needs to be a political shift from power and resources dominated by professionals and managers to at least an equal power sharing with users and survivors. This is more likely to happen if users and survivors are in leadership roles at all levels of the system – as bureaucrats, managers, academics and in their professions. We need position power.
Fourthly, there needs to be a practical shift that enables services, systems, users and survivors to:
- Create opportunities for users and survivors to collaborate in clinical decisions.
- Define peer run initiatives, their competencies, ethical standards and new practices.
- Plan and fund peer run initiatives.
- Develop the peer workforce.
- Democratise decision making in services and systems.
- Hand over more resources, decision making and responsibility to users and survivors.
- Encourage users and survivors to enter into mental health training and employment.
- Continue to develop recovery-based services that promote hope, self-determination, a broader range of options, and equality for users and survivors in services and in society.
These seismic shifts have rumbled for two decades in western mental health systems but in New Zealand they have been eerily quiet over the last few years. The big shake may be decades away, but it will come, and the mental health landscape will be changed forever.
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