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About this book

One of the most critical developments within `welfare' in recent years, has been the transformation of service users from `passive recipients' to `active subjects' of welfare policy and practice. People who use services have challenged paternalistic notions that professionals are always the experts, and have offered alternative analyses both of the experience of living with disability or illness, and of policy and practice responses to such experiences.

Taking Over the Asylum explores the way in which users or survivors of mental health services - people too often regarded as `lacking capacity' to make decisions about their own care - have taken action to empower themselves. The authors examine evidence of the impact this action has had on their lives, on services, and on practice in mental health. They argue that disempowerment can be exacerbated by racist and gendered assumptions and they question the way we think about `mental health' and `mental illness' and what it means to live with `madness'.

Drawing on the writings of activists and on international research evidence of action by users and survivors, this important book explores different strategies being adopted to achieve change both within the mental health system and in the lives of those who live with psychological distress. The wide-ranging analysis of current debates provides a valuable and clear insight into the potential and dilemmas of collective action by service users and survivors.

Table of Contents

1. Mental health and empowerment

Abstract
People who are seriously disadvantaged in society rarely have single problems — they have multiple interlocking problems. They do not compete on a level playing field. They suffer a ‘cycle of deprivation’. Empowerment must address all their problems together if it is to be meaningful. Poverty, poor housing and the nature of the social security system put a strain on relationships and lead to widespread demoralisation. Depending on the circumstances of individuals they can lead to physical and mental ill health, criminality, addiction and the persecution of individual or collective scapegoats: racism, sexism, picking on individuals who are ‘different’. Disadvantaged people usually can only afford to live in areas where there is poor air quality, low car ownership but heavy traffic and other inferior environmental conditions — particularly those which pose a danger to children and thereby add to the stress of their parents. (Davey, 1999: 37)
Marian Barnes, Ric Bowl

2. From lunatics to survivors

Abstract
The history of the mental health users movement in the UK remains sparsely documented, a function perhaps of its consciously informal nature and its relative recency. Writing in 1991 Rogers and Pilgrim (p. 130), also suggest that ‘developments in Britain are not as advanced as in other countries’. They considered that this might reflect both the lack of as strong a tradition of participatory democracy as in most other developed European states and the UK’s insularity towards those continental influences. It is the ambitious aim of this chapter to trace the evolution of the movement in the UK and to offer an analysis of those influences that have shaped it. This will involve brief examination of changes in the UK’s political and social structure and the influence of developments elsewhere, both in Europe and further afield. The chapter continues with a review of the current nature of the movement and reflects upon the similarities and differences between the objectives and nature of the diverse groups that constitute the movement — including between those that might be distinguished as users or survivors and those characterised as carers or relatives. It concludes with a brief examination of changes within the state that have extended opportunities for the service user movement to influence those services that most impact upon service users’ lives.
Marian Barnes, Ric Bowl

3. Strategies for empowerment

Abstract
As we discussed in Chapter 2, self-organisation among people who use mental health services or who have been designated as ‘mad’ or ‘mentally ill’ is not an entirely new phenomenon. Nevertheless, the development of both autonomous action on the part of mental health service users, and action from within service systems to in some way ‘involve’ service users has gathered pace since the 1980s. These two different movements: one based in experiences of oppression, of being unheard and of having civil rights violated, the other deriving from consumerist notions of ‘listening to the customer’ are paralleled in the context of other areas of public policy and service delivery in the UK and elsewhere (see for example Gyford, 1991; McLean, 1995; Trainor et al., 1997; Barnes et al., 1998, 1999a and b). As the mental health user movement has developed in the context of, first, neo-liberal notions of the benefits of welfare markets, and with the advent of a ‘New Labour’ government in the UK in 1997, an emerging discourse of ‘partnership’ between the makers and subjects of public policy, different models of organising and different priorities for action have emerged within the movement.
Marian Barnes, Ric Bowl

4. Diversity, difference and empowerment

Abstract
The experience of severe psychological distress is one which can come to people at any stage in their lives. It can affect people of all classes and ethnic groups. However, we cannot assume that either the issues around which different users of mental health services might wish to organise, or the processes through which they might become empowered will be the same. There are many ways of looking at this. For example, different forms of distress affect people in different ways. For some the experience of psychological distress will be of extreme depression, isolation and lethargy. Others, or the same people at other times, might experience rushes of energy which cause them to engage in constant activity and movement. Others may hear voices which act as a benign or antagonistic influence on them. The interest and ability to act to represent individual or collective interests may vary throughout the life of someone living with severe psychological distress, as will the mechanisms through which they can become empowered.
Marian Barnes, Ric Bowl

5. Changing lives and minds

Abstract
We have described in earlier chapters the gradual acceptance of the validity of the users of mental health services exercising more autonomy, either outside or inside mainstream services. We have also stressed important differences between autonomous action, initiated and controlled by people who identify themselves as users or survivors and action taken from within service systems to consult or more actively involve users in decision-making processes. In the latter context, we have described how ‘benefits’, whether to service users themselves or to the services, are imputed rather than always carefully thought out. In particular, confusion may arise between seeing user involvement as a therapeutic goal and creating opportunities for service users to significantly influence the nature of support provided for them.
Marian Barnes, Ric Bowl

6. Changing the system

Abstract
Within Chapter 5 we set out to examine evidence of the impact of user self-organisation and involvement in the planning and delivery of services on both service users themselves and the attitudes of individuals. In contrast, this chapter looks for evidence of influence on the structures and policies of the organisations that deliver mental health services. We described towards the end of Chapter 5 how, since the late 1980s, both legislation and policy guidance impacting upon mental health services have stressed the need for service user involvement in the planning and delivery of services. We also described how, even where legislation does not specifically require it, user involvement has become established as good practice. In themselves these developments would appear to indicate changes in the ideas of those managing and providing services and perhaps in the minds of the public who provide policy makers with a democratic mandate to make changes on their behalf. Nonetheless, we also alluded to the fears that both in Canada (Everett, 1998) and the USA (McLean, 1995) strategies encouraging increased user involvement had not necessarily produced real changes in mainstream mental health provision. Indeed, diverting the energy of the movement away from its oppositional role may have lessened the momentum for change it had generated.
Marian Barnes, Ric Bowl

7. Social movements and social change

Abstract
Our aim in this chapter is to step outside the mental health policy arena to consider the place which mental health service user movements might occupy in the context of broader shifts in the nature of social action and the contribution that may make to social change. We argued in Chapter 1 that empowerment needs to be addressed within a broad social context and here we offer an analysis of user self-organisation which can address ways in which this wider concept of empowerment may be achieved. In this analysis our perspective is on the movement as a whole, rather than on individual user groups or specific examples of user-led projects, although we will use these to illustrate how specific groups or projects may be contributing to a broader design. In order to address user self-organisation from this perspective we apply analyses developed to understand what have been termed ‘new social movements’ and to relate such analyses to post-structural analyses of power relations. We start by providing a brief introduction to new social movements (NSMs) and theories that have sought to account for their development, strategies and impact.
Marian Barnes, Ric Bowl

8. Future prospects

Abstract
In this final chapter we summarise some of the conclusions which can be drawn from the evidence we have presented throughout this book concerning empowerment and mental health. We also highlight some of the changes that are taking place in social policy at the start of the new millennium and the way in which these are likely to influence the context within which struggles for empowerment will take place. Finally, we reflect on how the nature of education and training for mental health workers and the organisational strategies adopted within their employing agencies can help or hinder empowerment. Our discussion is located primarily within the context of UK developments and refers specifically to changes in policy and infrastructure within UK health and social care services. However, important themes within contemporary thinking on ‘welfare’ are not restricted to the UK. A focus on social exclusion and social cohesion, and on work as a means of reducing exclusion and achieving cohesion, is evident within North American and European social policy. This provides a new context within which the empowerment struggles of users/survivors are being fought.
Marian Barnes, Ric Bowl
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