User empowerment 11

Whose service is it anyway?

(this article appeared in Openmind 104 July/August 2000)

In the second of their occasional 'head-to-heads', Peter Beresford and John Hopton debate the meaning of user-centred services.

Dear Peter
I am becoming increasingly confused about the question of user-centred mental health services. I've always believed that the best way to combat ignorance about mental distress/madness/ mental illness is to emphasise that anyone might experience it at any time. As most people are motivated, to some extent, by self-interest, the philosophy that mental distress is part of the normal range of human experience also seems to be the best starting-point for convincing people of the importance of having user-centred mental health services.

However, I get the impression from various verbal and written sources (for example Comment OM98; Letters OM99) that some survivors are irritated by such arguments. I agree that there is something fundamentally dishonest about a mental health professional who turns up at a conference and claims 'potential user of mental health services' as an identity (Letters OM99). Mental health professionals help to sustain a system that is far from perfect, and therefore have a conflict of interest regardless of how user-centred their practice is. I also accept that the term 'distress' does not adequately account for some of the complications that arise from self-harm, hearing voices, having beliefs which others regard as irrational or many other experiences psychiatrists would call 'mental illness'.

On the other hand, there is a difference between claiming 'potential service user' as an identity, and acknowledging that anyone can become a user of mental health services at any time. I have never had time off work as a result of mental distress, or used mental health services, but there have been times when I have experienced the pain of emotional turmoil and hopelessness. For example, when a colleague was murdered by one of our students, and in relation to various family crises. I accept that I cannot ever know what is happening inside the head and heart of a person in acute emotional crisis, but how can anyone assume that, because I have never had to use mental health services, I cannot imagine what such crises might be like? After all I don't need to experience being run over by a car to have an idea what that might feel like physically, emotionally and mentally. Or am I missing the point? JH

Dear John
You raise some fundamental questions about madness, distress and identity. Sadly these are usually posed to challenge the credibility and legitimacy of mental health service users/survivors and our organisations. 'Who are you to say what you do', the argument goes. 'What mandate have you got? Why should we listen to you?' Of course, the boot is now beginning to be on the other foot, as some mental health service users/survivors say to the system, 'Why should we listen to you?'

Going back to your car crash example, as someone who has had a head-on collision on a motorbike with a car, the lesson that I learned was that you do have to experience it to have an idea what it is like. That doesn't mean you can't listen to, or try and understand, other people's experience. But you can't assume you can imagine or truly know it. I can remember very clearly what my thoughts were - and I expected them to be my last thoughts. They weren't flashback or terror, but with my eyes full open to the moment of impact, just 'What a waste.'

Of course, madness and distress are part of our condition as humans, but unless and until we experience them, none of us can comment on them with authority. But equally important is the 'psycho-system' itself. One of the reasons some survivors define identity in terms of use of the system rather than 'madness' or 'distress', and perhaps see these as inseparable from the system, is that for them the core issue is the system, and its destructive, oppressive and discriminatory effects. So whether or not someone can 'imagine' what 'crises' are like, what they can't do is know the 'system' unless they have been through it. Nor can they 'know' or be subject to its often lifelong harm and stigma. As long as there is a mental health system that creates problems and barriers for people, there will be fundamental barriers between mental health service users and non-users. But don't confuse these with differences in our states of mind. PB

Dear Peter
There's a lot to think about in what you say. My first thoughts were about the limits of imagination and the difference between imagining and knowing. Your example of the motorbike accident helps to put that into perspective. I accept that no one can truly know what another's distress/madness/mental illness is like; and that you have to have firsthand experience of using the mental health system to appreciate just how oppressive it can be. In that sense, I agree that users/survivors of mental health services may be in the best place to develop a critique of the mental health system. However, there are two issues that I struggle with. If no one can have expertise in the management of another's distress, how can a service user/survivor's views about general principles of managing distress be any more valid than the views of a psychiatrist? For example, the majority of activists in the mental health service users' movement seem to be in favour of the total abolition of ECT. How can that be reconciled with the fact that some other service users find it helpful? Second, I'm unclear whether the survivor movement generally thinks there would be a role for mental health professionals in a user-centred mental service. JH

Dear John
Your two issues are important. First, no one is saying that all mental health service users are the same, or that one survivor can glibly speak for others. But there are boundaries that we cross when the identity of 'mental health service user' is imposed on us. It is the same with all oppression and discrimination. They create a sense of commonality, of shared understanding and allegiance with those in the same boat, as well as of separateness from others. At the same time, we know that such experience may lead us in different directions and still leave us different people.
That is why social movements, including the mental health survivors/service users movement, place so much weight on collective action, on doing things together. It is why we as survivors must work things out for ourselves together. It is vital as survivors not to ride roughshod over the differences among us or deny their importance, whether they relate to gender, sexuality, 'race', disability, age or how we understand our own and other survivors' experiences and perceptions. We have to encourage opportunities for shared learning. Crucially, it is a matter of moving from our individual understandings to develop shared and collective knowledge and understanding. There may be a long way to go, but the survivors' movement has already acknowledged this and taken giant strides towards doing it.
Second, I think there will be a role for skilled and dedicated workers. It is, however, probably time we stopped thinking about them as 'mental health professionals' and avoided all the problems surrounding professionalisation. We should also expect their role to be very different, building much more on the involvement, knowledge and experience of service users and rejecting a medical model of madness and distress. Their work will also be about much more than 'special services'. It must fit into a broader context, concerned with the world we all live in and the power each of us can exert to influence and change it. That is why, as you suggest, ultimately this must be a debate that includes everyone, because it concerns everyone. But it must be one that is initiated and controlled by mental health service users, if it is not to perpetuate past and current mistakes, cruelties and divisions. PB

Dear Peter
We'll probably disagree on this, but I feel that handing over control from one group to another will just create a new set of problems. On the other hand, current approaches to user-involvement are often little more than tokenism. I'd like to see a collaborative effort to reshape the so-called mental health professions and develop strategies for people to be more in control of their care and treatment from the moment they become users of mental health services. JH

Dear John
Just when I think we're reaching agreement, I find we're not! But at least we're being open with each other. The issue is not about replacing one powerful group with another, but of supporting people to define their own experience and feelings and to work out together what works to help them live their lives as best they can. Mental health service users/survivors will need a lot of help to do this. We have centuries of discrimination to deal with, and the wheel is now turning full circle, so that we are now regarded as threatening and dangerous. Surely there's a support role here for the many progressive workers looking to go beyond psychiatry? PB

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