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Chapter 2 The service-user movement
Jo Lomani
Contents
Introduction 47
1 The development of the service-user movement 501.1 Improving services or assimilating threat? 52
2 The service-user movement today 552.1 The service-user movement in the digital age 58
3 Nothing about us without us: research practice and the service-user movement 603.1 Coproduction and patient participation and involvement 613.2 Service user-led research: a voice of our own? 63
Conclusion 66
Further reading 67
References 68
Introduction
‘Held back’ by Rosie Cook
There’s really no such thing as the ‘voiceless’. There are only the deliberately silenced, or the preferably unheard.
(Roy, 2004)
This chapter introduces the significance of the service-user movement in the field of mental health. It begins by considering the term ‘service user’ and moves on to exploring some of the history of the service-user/survivor movement. The chapter then looks at issues in mental health survivor activism, including an examination of some of the ethical dilemmas and pitfalls. The second part of the chapter will take a close look at service-user involvement and coproduction in mental health research.
As this chapter progresses, it will become clear that the phrase ‘service-user movement’ is a misnomer. This is because mental health patients have diverse perspectives, experiences and identities. We call ourselves many different things: patients, peers, service users, clients, survivors, consumers, people with lived experience, experts by experience, people with a psychosocial disability, and some of us self-identify as ‘mad’. These terms can reflect some very different and contested perspectives (Christmas and Sweeney, 2016). The chapter will use a number of these expressions, but for the sake of consistency it will tend to use ‘service user’ as a shorthand for a diverse range of terms.
If you aspire to work in the field of mental health, it is crucial that you recognise the immense power you will have over your clients. If you become a therapist, you will decide how long the sessions are; you will say when time is up; you will write notes about your client. You may discuss and interpret your client with a supervisor. Those of you who end up working within the formal mental health system may have even more power over service users, perhaps making decisions about the liberty and treatment of patients (as discussed further in Chapter 18).
Why is power so important? Because it is the abuse of power that provided the foundational context in which the survivor movement flourished. It was called the survivor movement because many patients have had to survive something terrible – something connected to power (or more specifically, to a lack of power). Historically, mental health patients have been silenced. The truth about their experiences of barbaric treatments and psychiatric interventions was kept locked behind the closed doors of early asylums. Yet even in those oppressive and restrictive contexts, patients found creative ways for their narratives to be heard. In her book Agnes’s jacket, psychologist Gail Hornstein offered useful insights into these narratives:
Despite every attempt to silence them, hundreds of other patients have managed to get their stories out, at least in disguised form. Today, in a vibrant underground network of “psychiatric survivor groups” all over the world, patients work together to unravel the mysteries of madness and help one another recover.
(Hornstein, 2017)
This chapter aims to:
summarise some of the key historical changes that have occurred within the service-user movement
explore