I want to talk about the mental health service use/survivor movement. I do this not as someone who has personal experiences of using services, nor as a mental health professional. But as someone who regards myself as an ally of service users, a social scientist who has worked with service users (not only mental health service users but others as well) in a research and development capacity, and who has studied the movement from a position which is not value neutral. What I am going to be saying comes largely from the book I wrote with Ric Bowl – Taking Over the Asylum (Barnes and Bowl, 2001, Palgrave). I also want to acknowledge the recent work of David Armes and Tessa Parkes (2002) on this subject.

Collective action amongst people who have variously identified themselves as lunatics, the mentally ill, consumers, service users, survivors, mad people is not a new phenomenon. In 1620 there was a ‘Petition of the Poor Distracted People in the House of Bedlam’. The Alleged Lunatics Friends Society was founded in 1845 and at one time, I’m not sure if it’s still the case, MINDLINK in Liverpool occupied the same offices as a branch of that society.

However, we can trace the origins of the contemporary user/survivor movement to developments that gathered pace during the 1970s and 1980s. This was a time during which collective action amongst a variety of groups was significant in the pursuit of issues of civil rights and individual freedoms. The civil rights movement amongst black people in the US, women’s liberation, student movements and movements amongst gay and lesbian people emerged towards the end of the 1960s to challenge many of the liberal institutions of post war welfare states and the assumptions of homogeneity which underpinned them. Amongst mental health service users amongst the earliest examples of collective action can be identified in the clientenbond in the Netherlands, the Insane Liberation Front and the National Alliance of Mental Patients in the USA, and the Mental Patients Union and the Campaign Against Psychiatric Oppression in the UK. These all emerged in the early 1970s.

If we take the origins of the contemporary movement to lie at that time it is probably fair to say that the movement has now reached a degree of ‘thirty something’ maturity and angst. There have always been differences within the movement about strategies, tactics and priorities and in a moment I want to explore the wide ranging and diverse forms of action that are encompassed within the movement. But my purpose here is not to engage with debates about tactics, rather it is to consider how we can understand the impact of the movement. Have the lunatics taken over the asylum? Is that what they set out to do?

If we look at the contemporary movement we can see a wide range of action encompassed with this. Simply listing that we can identify, at least:

• Individual advocacy – both peer and self advocacy in a range of settings, including special hospitals and in the context of care planning.
• User councils on hospital wards and in community settings.
• User run drop ins and support services.
• Mad Pride – celebrating the mad experience through arts and literature.
• Protest action – such as the lobby of parliament against Community Treatment Orders in 2000.
• Forums in which alternative understandings of experiences can be explored and developed – such as Hearing Voices Forums.
• Projects which make links between the experience of mental distress and other experiences of disempowerment and issues of sustainability, such as Ecoworks
• Direct involvement of service users in policy making at local, regional and national level.
• User led research.
• User trainers and consultants.

We can also identify groups which provide an opportunity for black service users to give voice to their particular experiences, and other sites in which women are supporting other women, or workers who are also users within the mental health system come together.

We could suggest that if we simply take expansion and diversity of action as an indicator, the impact of the user/survivor movement has been substantial. There are many more ways in which people identifying themselves as service users, survivors or in other ways can take part within the movement and many more forums within which their experiences can be given expression. And I do think that this is an important indicator. But let’s look more closely at this.

Drawing from different studies which have explored the experiences of people involved in various ways within the movement we can tell some very different stories about the impact this is having – on the people themselves, on mental health services, and on the way service users are viewed both within and beyond the mental health system.

It’s given me a life and without it I wouldn’t have dreamed of doing half the things I do now. It’s given me confidence, assurance… I get up now and speak at a conference quite happily. A few years ago I would have no more done that than fly! (Barnes and Shardlow, 1996)

Six years ago, the idea of saying to management we’d like you to come and meet a group of twenty users to listen to what they think about the services you are providing would have been a joke. Unheard of. But people are used to that now. (Barnes et al, 1999)

Yeah, the word’s getting through to people on the front-line…that you can’t treat us like second class citizens. You can tell, well not everywhere, but in some places it’s got through (Parkes, 2002)

…I think we’ve reached the sort of strength now that we’re unlikely to be taken over by professionals or other interest groups and therefore we can reach out for allies to help (Armes)

There’s been a lot of cosmetic changes but the power balances are still there – around treatment in particular, medication and my position has always been one of challenging that and trying to redress that balance of power (Barnes et al, 1999)

…there’s increased funding for user groups, that has meant the potential for more people to get involved. But the type of involvement on offer is usually based on a very limited model of involvement, which is either about individual partnership or about collective involvement in a very imbalanced way… The whole framework Is defined by people who are commissioning or providing services and users don’t really have much say in its set up in the first place (Armes)

When I work with user groups there is talk of a war of attrition about who can wear the other person down the soonest and you get that impression when you talk to service users. They’re just worn out by it. They’re just worn out with banging their head against a brick wall. (Parkes, 2002)

… they don’t want us to have power, because once we have that power basically we are a threat to them. They want people who appease them, ideally who fit in with what they want to do because it fits their system perfectly and if we turn around and say we’re doing this they don’t like it. (Parkes, 2002)

My strongest memory here is of a young woman who told the subcommittee a painful story of her life both in and outside of hospital. In the awkward silence which followed she began to cry. "It’s no good for you to send committees," she lamented. "Unless you actually do something, the next time you come back, I’ll be dead." (Church, 1996 p.33)

We can tell one story about the user/survivor movement that would point to the insertion of service users into spaces and places that would have been unimaginable in the 1970s: into the Institute of Psychiatry, the Mental Health Act Commission, into training for mental health professionals, seminars to discuss evidence and research in preparing new mental health legislation, as well as into Trust Board meetings, regional mental health partnership networks and elsewhere. We can point to senior professionals within the mental health system who have come out as service users, and to other users who have been able to draw on their experience to take on roles as researchers, educators and consultants. We can also suggest that the stigma of mental illness is less profound when popular celebrities and unpopular government advisers are prepared to come out and acknowledge experiences of mental distress.

But we could tell another story that described acute wards that are overcrowded, unsafe and rarely therapeutic. We can point to the fear, anger and loss of those subject to the exercise of compulsory powers in ways that undermine an already fragile sense of self. We can acknowledge that a place amongst those deliberating on a new mental health act was not enough to ensure that the use of compulsory powers would not be extended to the community. And we can recognise the huge challenge faced by people who one day are subject to inadequate care from ward staff and the next are negotiating with the Chief Executive of the Trust about service improvements and user involvement in service monitoring, so that they sometimes decide that it is all too much to do anything about.

So how do we assess these two very different stories? How do we make a judgement between the different messages coming from those active in the movement about the transformative impact it has had? I’m not going to offer a definitive response to this question, but I do want to suggest some ways in which we might address it.

The first point is the need to distinguish between the impact of any one example of ‘user involvement’ or the experience of any one user group, and the movement as a whole. I have used the term ‘movement’ to describe the diverse range of action encompassed within the contemporary movement, summed up from one perspective by Simon Morris: ‘The user movement is currently being empowered to learn to hold meetings and enter the more than 36 chambers of bureaucracy. Mad Pride empowers us to rave in space at the very least, and at best to take our dreams for reality.’ This quote indicates the very different ways in which those who might consider themselves to be active within the movement as a whole might conceive of the outcomes they seek to achieve. The notion of impact here is more appropriate than that of outcome in considering the changes – both intended and unintended, which might have flowed from the broad range of action within the movement.

I am suggesting that it is useful to understand the user/survivor movement as an example of what have been termed new social movements in order to reflect on the impact it has had. As is virtually always the case, there are differences between social theorists concerning the nature of new social movements and what makes them different from ‘old’ movements. But what is helpful for our understanding of the user/survivor movement and its impact is to locate this within broader theorisations about the nature of contemporary society. In the context of a world in which identities are no longer derived from occupation and class positions, and political action which can give expression to experiences of oppression and dissent is no longer effectively based in class based mass political action, new social movements are not solely or primarily concerned with redistributional objectives. Rather they are sites within which shared identities are negotiated and constructed through action. Their overarching objectives can be expressed as transformation rather than redistribution. Goals are cultural as well as material and concerned with the ways in which meaning and knowledge is created.

Thus, for example, feminism has not only been concerned with equal opportunities, but with creating a different way of understanding gender and gender differences. The notion of ‘consciousness raising’ that was so important in the early days of the movement was designed to enable women to articulate their own experiences together in order to generate alternative understandings and explanations of women’s experiences. Similarly, the disability movement’s campaigns have challenged the dominant medical ‘explanation’ of the problem of disability, through a social model of disability which locates the problems not in the impaired bodies of individual disabled people, but in the disabling practices of society.

This introduces the second way of thinking which I want to suggest is helpful to considering the impact of the user/survivor movement. This relates to how we can understand power. Once again, power has been theorised in a number of different ways – it has also been used in very different ways in the claims that are made about how service users can be or become empowered. One way of understanding how power works is through looking at how a particular way of thinking about the world become accepted as the ‘right’ way. Who gets to determine what is the right way is based on who has both the power and the authority to do so. Thus, for example, the way in which unusual behaviour is understood and explained has changed at different times throughout history and across different cultures. It is only comparatively recently that such behaviour has been defined as mental illness – this coincided with a period during which scientific explanations in general and medical explanations in particular were becoming dominant and the medical professions were establishing themselves and claiming ownership of the terrain of disease.

It could be argued, therefore, that one of the most significant ways in which the mental health service user/survivor movement could have an impact would be not through users taking over the asylum in a literal sense (as in users running mental health services), but through transforming the way in which we think not only about the nature of asylum, but about madness, about mental illness, and about those people who experience the state of madness, or suffer from the effects of mental illness. The way in which notions of madness or sanity construct social relations would be unsettled - our responses to people would no longer be based on assumptions about irrationality or incapacity attaching to a psychiatric diagnosis. It could be argued that such a transformation would represent a more profound shift in the balance of power than would be the case, for example, if service users were majority decision makers on Trust Boards, or if people subject to compulsory detention had the right to an advocate at the point of assessment.

In order to make such a transformation we would expect to see significant internal impacts within the movement itself. We would expect to see users and survivors constructing their own identities, developing their own alternative explanations and ways of understanding experiences of madness, as a basis from which to challenge both lay assumptions and professional discourses. We would expect to see networks amongst user activists developing and relationships within and beyond the movement which are not determined by the allocation of diagnoses – which I suggest can be illustrated by the unsettling effect of service users in the role of educators of mental health professionals.

So – has such a transformation happened? At this point I will gratefully recognise that my time is up and invite you to offer your views!.

 References

Barnes, M and Bowl, R (2001) Taking Over the Asylum: empowerment and mental health, Basingstoke, Palgrave

Barnes, M and Shardlow, P (1996) ‘Identity crisis? Mental health user groups and the problems of identity’ in C Barnes and G Mercer (eds) Exploring the Divide: Illness and Disability, Leeds, The Disability Press.

Barnes, M, Harrison, S, Mort, M and Shardlow, P (1999) Unequal partners – user groups and community care, Bristol, The Policy Press.

Church, K (1996) ‘Beyond ‘Bad Manners’: the power relations of ‘consumer participation’ in Ontario’s community mental health system’, Journal of Community Mental Health, 15(2), 22-5.

Parkes, T (2002) Feathers and Thorns. The Politics of Participation in Mental Health Services, PhD Thesis, University of Kent.