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Most of us struggle with our mental health at some point in our lives. Most people’s journeys to find support contain a mix of helpful and unhelpful experiences. Some people may see a mental health worker for a brief time, while others remain in services for many years. The service-user movement is a rather nebulous term. What exactly does it mean? Why has there been, and why does there continue to be, such prolific activism around mental health?

In order to answer these questions, it is important to explore the oppressive context within which the service-user movement emerged. As you read in Chapter 1, conditions in the early asylums were often brutal. Asylum practices, even in relatively modern times, have included the use of chemical castration, prolonged seclusion and psychosurgery (Harrington, 2019). It was the brutality of historical psychiatry that forced patients into collective action and resistance. Years later they were joined by prominent, radical psychiatrists who were dissatisfied with conventional psychiatry. They began what is now referred to as the ‘anti-psychiatry movement’, which gained popularity in the 1960s. Academics and psychiatrists such as Ronald Laing, Thomas Szasz and Erving Goffman publicly challenged and undermined the legitimacy of psychiatry. More specifically, they highlighted the subjective nature of psychiatric diagnosis. These challenges were validating for patient activists, who themselves were trying to challenge damaging psychiatric narratives and win the right for people to maintain their own beliefs about their mental health experiences.

Service-user movement A term used to describe the broad coalition of groups and individuals who speak out, individually and collectively, for their own rights and to draw attention to the difficulties experienced by those who have cause to use or receive mental health services.

Missing from the works of these prominent anti-psychiatrists, however, is a record of the influence that their patients had on them – none of their writings or lectures were coproduced with service users (Section 3.1 looks at coproduction). Thus it is not the patient activists’ names that are associated with the radical changes that took place during and after the formation of the anti-psychiatry movement. This is a significant point because a continuing aim of the survivor movement is to have its own independent voice.

The service-user movement is not one unified group of activists. It is a collective name for a multitude of groups and individuals who have, over the years, tried to improve care and 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.