User empowerment 12

Which way to Utopia?
(this article appeared in Openmind 98 July/August 1999)

Thoughts on 'user involvement' by Peter Linnett

'A map of the world that does not include Utopia is not worth even glancing at' Oscar Wilde

Recently I completed two years as the first user-involvement development worker employed by a large English mental health charity. It was the hardest, most gruelling job I have ever done.

The purpose of user involvement is to change the balance of power in an organization to take some away from professionals and to give more to clients (I prefer this term to 'service user').

Underlying user involvement is the idea that clients are the experts on their own needs. Involving them in policy-making, training, recruitment and so on, ideally ensures that their needs and concerns become central to the organization's service delivery.

User involvement now has 'politically correct' status in mental health. In any organization, unstated organizational purposes usually underlie stated ones. In the case of mental health user involvement, these may include the desire to impress organizations that purchase mental health services, and to appear to be doing the right thing. These purposes are not necessarily incompatible with the stated ones. But if action does not match the stated commitment, staff and clients may develop doubts about the real purpose.

Roles and power

Being a professional is a socially acceptable and sustainable role. Being a 'user of mental health services' is not - except in the mental health world. In that world, clients may have unofficial kinds of power - such as the power to protest to purchasers of services, funding bodies and the media about the quality of service they receive. They do not have official kinds of power, unless these are granted by the organization. Such granted power may include membership of management committees and other policy-making groups. But if official power is granted to clients, it can also be taken away. At worst this power may be an illusion, acting to damp down demands with which an organization feels uncomfortable. It may confine people even more firmly in the role/category of 'service user'. This is exemplified by the often-used expression 'the user perspective'.

If clients do gain genuine official power, they are no longer solely clients or 'service users'. But they are still regarded as such by the organization concerned - they may even regard themselves as such. Boundaries between roles become blurred, usually without those involved realizing or accepting the implications. In these circumstances, the balance of power has shifted. A fundamental change has taken place, which should lead to changes throughout the organization. These cannot happen unless 'clients' cease to be seen solely in that role.

It is hard to achieve this, because there is little or no fluidity of roles in mental health. We all embody multiple roles: our roles are fluid, so is life. Rigid role distinctions make user involvement impossible to achieve. They cut off the possibility of a creative approach to running services and to living our lives. Consider the acute crisis of identity suffered by some mental health workers who have also experienced mental distress. Staff's role is to deliver a service - not to be 'mentally ill'. Clients' role is to be 'mentally ill' - to receive a service, not help deliver it.

When these roles become blurred, confusion and anxiety result. It is understandable that people end up preferring the security of traditional roles. Even if they genuinely want change, there are tremendous pressures to maintain things as they are. The paradox of 'user involvement' is that achieving it means people being released from the exclusive roles of 'client/service user' or 'employee/ service provider'.

Genuine user involvement leads to fundamental change. This is rare because managements usually haven't the stomach for it. It means staff giving up some of their power and status. For clients, it means taking on responsibility and being accountable for any work they do. Organisations have to take a long hard look at how they work and ask whether their methods are compatible with the work's aims.

An example. Disparities of income and employment status play a large part in creating distance between staff and clients. However well-meaning, a senior manager earning 40,000 a year will have trouble understanding the life of a client living alone in a bedsit on 50 a week. There is a tremendous amount of money available to run organizations and employ staff - could more of this money be given directly to the people these organizations exist to help? Impossible, you say? Not practical? If organizations think this kind of change is impossible, they should not even try to implement user involvement. If they are going to do it, they must address implications such as this. For user involvement has major personal, organizational, social and political implications. It's hardly surprising that individuals and organizations are reluctant to address these implications. Even if they want to address them, the social/legal/political structures that would make action possible barely exist.

The idea of a 'mental health service'

In his book Asylums, Erving Goffman discusses the classic distinction between the server and the served. 'The server' provides a service (a shopkeeper, solicitor, mechanic and so on). 'The served' person receives or makes use of the service. Provided both sides observe mutually-agreed rules, their transaction should be straightforward. When the 'transaction' involves more intimate matters - such as in a doctor- patient relationship - problems tend to arise
in adhering strictly to this model. In mental health work, a client's experiences and the means used to deal with them create fundamental personal changes. A worker and a client may both spend a great deal of time in the same environment. The worker often finds that this work stirs deep and sometimes disturbing emotions. It is highly demanding and challenging, in ways that require a response as a person, not as a detached professional.

Is the mental health worker ('the server') simply delivering a service to 'the served' (the client)? Essential to this model is the element of impersonality in the relationship - exemplified in the 'serviced' person paying for the service. The two sides should not let the relationship become personal; if they do, a straightforward transaction becomes less likely. But to be truly humane, relationships between 'workers' and 'clients' must have a personal element - 'workers' must truly 'attend to' 'clients'. (The word 'therapeutic' derives from the Greek therapeuo - wait on, attend.) If this happens, people are no longer merely elements of an impersonal 'service'. Sometimes relationships are not humane, and they then act as a powerful reminder of what should be happening. By imposing an inappropriate model on mental health work, western societies have compromised the true aims of that work.

What does this have to do with user involvement? Everything. Once we accept that mental health work must have a personal element, we open the way to seeing people as individuals - not as 'clients', not as 'employees' or 'service providers'. This is not just a matter of words or of sentiment. Once we accept that no one is ever just a 'client', just an 'employee', we open up the revolutionary path of user involvement. For it is revolutionary: its implications go beyond mental health to the wider society. In its strategy to tackle so-called 'social exclusion', the UK Government would be well advised to heed the lessons of user-involvement activity. (Tackling 'social exclusion' currently appears to mean committees and expensive conferences for people who are very much a part of society.) The questioning of roles that occurs in user involvement has the potential to transform not only mental health work but society itself.

A utopian idea?
I said user involvement is revolutionary. It is more than that; it is a Utopian idea. Sir Thomas More's book Utopia (1516) described 'an imaginary place with a perfect social and political system'. The word Utopia is often used to describe 'an ideally perfect place or state of things' (OED).
Utopia is a Latin word. It means 'nowhere'.

That the idea of user involvement exists at all is a tribute to many survivor activists (though most go beyond it to the idea of user-controlled services). If we bear in mind the history of psychiatry, it is a miracle that any attempts at user involvement have been made at all.

User involvement is a Utopian idea - not because it is so hard to practice, but because as soon as it is done genuinely, it becomes something else. In this sense, there cannot be such a thing as 'user involvement'. The organization/people concerned move beyond fixed roles, and permanently change the balance of power. They are then in uncharted waters, ones we have no name for at present. They are 'nowhere'. If attempts at user involvement fail, it is often through fear, such as an explorer might feel in an unmapped landscape. But usually organizations do not get this far. Either they do not realize the implications; or they are aware of the implications and evade them; or wider pressures beyond the organization inhibit or prevent progress.

You may think I have been unduly critical of sincere attempts at user involvement. Having attempted it myself, I am critical because it is too important to be done unthinkingly. Doing user involvement means becoming revolutionary. Unwilling or unaware revolutionaries are not going to change anything for the better. They may even make things worse.

Should the mental health map contain Utopia?

Peter Linnett is a freelance writer on mental health issues. Contact him on peter.linnett1@btinternet.com or on 07931 194252

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