treatment towards those who have become too distressed or overwhelmed to function. Service users have fought for the right to receive humane treatment, to access adequate housing and welfare provisions, to expect reasonable workplace adjustments and sometimes simply to remain free from psychiatric detainment. Wallcraft et al. offer the following definition of the movement:
The ‘service user/survivor movement’ is a term used to describe the existence of numerous individuals who speak out for their own rights and those of others, and local groups and national organisations set up to provide mutual support or to promote the rights of current and former mental health service users to have a voice.
(Wallcraft et al., 2003, p. 11)
The right to one’s own voice is important. Some describe themselves as ‘mad activists’ as an assertion of a positive identity; that is, they have chosen to use the word ‘mad’ rather than being subjected to a label imposed on them by psychiatric professionals.
Beginning in the 1980s, under Ronald Reagan (then president) in the US and Margaret Thatcher (then prime minister) in the UK, the ideals of ‘self-management’ in mental healthcare were promoted while, simultaneously, funds for mental health services were cut. Community-based mental health teams were established in the UK to save money and to prevent long-term institutionalisation, so patients were more likely to be managed at home. The service-user movement gained increasing popularity during this time, partly because (generally speaking) patients were no longer locked away indefinitely in asylums. Service-users’ opinions began to differ in regard to whether mental health services should be reformed from the inside or abolished entirely (see Information box 2.1). Television and the media began to reveal the realities of mental health patient experiences. In 1983 the first television programme entirely edited by psychiatric survivors was broadcast in the UK. Hay’s (1986) documentary We’re Not Mad…We’re Angry! enabled survivors to share their harrowing experiences and criticisms of the psychiatric system with a larger audience than ever before.
Information box 2.1: Reformation versus abolition
Service-user activist groups responded to the psychiatric reforms of the 1980s with conflicting agendas. Some groups aligned themselves with the reforms – they believed that they could improve the existing mental health services by working within and alongside them. Other groups retained their abolitionist stance (i.e. where the aim is to get rid of psychiatry). Some groups formed alliances with prominent anti-psychiatry professionals. Different group agendas had an influence on how patients referred to themselves. For example, patients who wanted to work within the system in order to pursue psychiatric reform began to identify as ‘consumers’ or ‘service users’, while those who promoted psychiatric abolition were more likely to define themselves as ‘survivors’ to reflect the violent nature of their psychiatric experiences and the harm inflicted on them.
The service-user movement has always struggled with the tension between those who wish to improve existing mental health services and those who wish to dismantle these services in order to create something better. In truth, most of us probably identify somewhere between these positions.
1.1 Improving services or assimilating threat?
History suggests that assimilation and co-option happen when a social justice movement becomes popular enough to present a threat to established power structures. Thus, some survivors avoid too much cooperation with formal services:
Assimilation and co-option These terms refer to a process whereby service-user groups become incorporated within professional organisations and their oppositional voice can therefore be neutralised.
Once a social justice movement becomes co-opted, it has in turn been immobilized as it is swept up into becoming a part or extension of the larger group or system(s) it initially sought to dismantle and transform. Both co-option and oppression are insidious and sneaky processes: the path to co-option is often paved with the very best of intentions and the oppressed are often at first unaware of their own oppression.
(Feldman, 2018)
Despite these anxieties, several features of service-user activism have been professionalised and are now integrated within the mental health system (Voronka, 2019). ‘Peer support’, for example, originated within the survivor movement – people have always found ways to support one another within mental health institutions, so it became an integral part of early activism. Due to the grassroots and context-dependent nature of peer support, there is no single definition, though there are common themes:
Peer support occurs between people who share similar life experiences and as a result can provide each other with reciprocal support, advice, empathy, validation and sense of belonging and community which professionals and/or others who have not endured the same difficult situations may not be able to.
(Murphy and Higgins, 2018, p. 441)
Grassroots peer support can subvert the power dynamics within the mental health system by providing support mechanisms for patients who are defined by the users themselves. Nowadays, mental health peer support exists in many forms, such as one-to-one (Gillard and Holley, 2014), group (Castelein et al., 2008), and online, which is becoming increasingly popular (Barak et al., 2008). Since 2009, various forms of peer support have been formalised within the UK mental health system (Munn-Giddings et al., 2009). The introduction of the peer support worker role within statutory services has generated employment for thousands of people who have experienced mental health problems and used services. However, the lack of agreed definitions of peer support has opened the term up to be co-opted into ways of working that re-enact the problematic power differentials that it originally began to counteract (Faulkner, 2013). A clear tension exists between formalised peer support and ‘grassroots’ peer support, with the former predominantly focusing on service-provider outcomes (e.g. standardised depression scores) rather than service-user led priorities (e.g. support for accessing benefits or stable housing).
In addition to problems of assimilation, there are many structural and attitudinal barriers that peer support workers must endure once they are employed. Overt discrimination and microaggressions from other, non-service-user staff are common (Sinclair, 2018), and I am aware from my own experience and observations that there is no career progression.
Despite the problems associated with formalised peer support roles, many service users really value the opportunity to use their lived experience in a paid, professional capacity (Basset et al., 2010).
Lived experience The value given to those who have experience of difficulties or mental health services and the expert knowledge this gives them.
2 The service-user movement today
Activity 2.1 below provides the opportunity to evaluate your own ideas about what being a service user means, before going on to explore the current context of the service-user movement.
Activity 2.1: Who is a service user?
Allow about 10–15 minutes
What do you think of when you imagine a mental health service user? Based on your own ideas and on your reading of the chapter so far, try to answer the following questions concerning who should be allowed to identify as a service user.
1 Can people who have used mental health services and are now trained mental health professionals be considered service users? Which services must people have used in order to qualify for service-user status?
2 If
