Experiential knowledge in mental health policy and legislation: can we ever change the agenda?

Abstract

The longstanding joint efforts of many disabled people’s organisations as well as the committed work of individual activists resulted in the adoption of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) in 2006. Signed and ratified by numerous countries along with the European Union, this unique international treaty also guarantees the fundamental rights of people with psychiatric diagnoses. Its Article 4 (3) stipulates that: [i]n the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations. (emphasis added) As clear and legally binding as this provision is, it cannot by itself reverse centuries of the exclusion and silencing of people labelled mad. Despite the latest discourses of personalisation, inclusion and co-production, the most important decisions about our lives continue to be made without us. Building on my long-time activism in the European movement of mental health service users and survivors of psychiatry as well as my research work, I want to explore how this happens and the prospects of us and our organisations becoming real instead of just declared protagonists in matters that directly affect our lives. The advocacy and political work of many organisations of people who identify as mental health service users, psychiatric survivors or psychosocially disabled can be divided into the era before and after the UN CRPD. The injustices that our organisations have been protesting against for decades are now acknowledged as human rights violations (Russo and Shulkes, 2015).