'Them And Us' In Mental Health

When I was a user of services I was often criticised by workers for having an out-of-date and undesirable ‘them and us’ view of the world of mental health. It bugged the hell out of me, because for years I had been trying to act from the opposite perspective (I still am) - but then something would happen that sent me back to thinking ‘they’ occupied some other world. In my everyday life I try to let-go of preconceptions, but then someone says or does something, which shows they still perceive, believe in, or approve of some basic divide.

Now of course, it must be to some extent what I choose to notice, and we all have a tendency to notice differences rather than similarities. However it is unfortunate that most of the time it is workers who are inclined to assert there is no more (or should not be any more) ‘them and us’. I’m also as aware as anyone that amongst workers there is a range of ‘lived experience’ - I myself, between my first and second admissions, was briefly a student mental nurse.

The answer to why a ‘them and us’ situation (and it is a social situation, not an attitude) persists, and perhaps must persist, despite the increasing dialogue between workers, users and carers is really very simple. But first, a look at the proposition:

‘As part of the human condition, we are all engaged in the same daily struggles to maintain our wellness. There are no “them” and “us” - just us. Commonality between us all is emphasised rather than differentiation. Some of us may need more robust wellness strategies than others, but the process is similar for us all. Our daily routines, our relationships and our levels of resilience become very important in maintaining our wellness.’ (Devon LIT Workforce Development Group Recovery - Concepts and application Version 2. 10.4.08)

(This is the missing item referred to in my January post - The Recovery Movement [part one] )

A few years ago I came to the conclusion that as part of my own self-management I had to treat every encounter, every relationship as personal. For the irony is, that the mental health system has traditionally been structured around providing impersonal, bureaucratic care for clients whose very problems manifest themselves in an inability to maintain intimate relationships! My only solution, to guarantee that I act for the right reasons, and feel the right emotions - is to only turn-up to do something today, because someone I care about has asked me to be there, or because I am likely to meet someone I’m attached to.

The fundamental building blocks of ‘them and us’ are the Mental Health Act and client confidentiality. By virtue of being a user it is so easy for workers to maintain the notion that you’re the one with the problem. You feel constrained in the way you are with them - I must look calm, not agitated, the things I say must sound reasonable. Because you know the person you’re talking to only has to make one phone call, express their ‘concern’, and a whole chain of events may lead to the use of the Act. It’s a sense of vulnerability that persists despite it being over five years since my last admission. I know my self-management skills are excellent, that there is no need for me to ever be an in-patient again, but nonetheless, the feeling remains that the obligation is on me to conform to their perceptions of reality. In a sense, my fear still allows ‘them’ to define what ‘appropriate’ behaviour is!

Client confidentiality is presented as protection for the client, but it’s convenient for them too. Remember, in the vast majority of encounters it is we who disclose not them, and our notes usually record what they choose to record. They decide what can be kept confidential and what they are ‘obliged’ to share with other workers and agencies. Equally, you inform them about concerns regarding yourself, and occasionally other clients, and they choose whether to act. And there need be no comeback for them. Because you are seen as the one with the problem the quality of your knowledge and judgement is rarely acknowledged, let alone acted upon.

There is however a third factor which helps to maintain them and us, it is the way that Involvement (public participation and feedback) is organised. Involvement procedures have become as bureaucratic as the rest of the mental health industry. The rules and regulations, intended to be objective, calculable and de-personalised in order to treat everyone the same, with fairness and equality, mean the individual can rapidly be lost - more remoteness is the last thing someone needs who has become ‘ill’ as a result of a lack of communication skills in interpersonal relationships!

No one service user’s view becomes any more valid than that of another on any particular issue. Although we have differing skills, this counts for nothing - we are all ‘experts by experience’. So when at a meeting each of us gets an equal opportunity to state our views and we say different things, the consensus seeking Chair (having allowed us to ‘let of steam’) need take forward to others - what? One mechanism of bureaucratic control is to be told that whatever your view is, though legitimate, is yours alone - a cause for individual complaint or change in treatment, but not a reason for workers to question their working practices.

The workforce however is divided into professions with what are thought to be unique sets of knowledge and skills (the specialised division of labour) which they must maintain, or lose their value in the job market. There are good reasons therefore for them not to work collaboratively, and management may also concur, not wanting their workforce to identify a collective interest with each other. The Involvement worker stands between client and service provider or commissioner, describing themselves as facilitators or trainers (training staff how to Involve, and clients how to become involved) but may in reality act as ‘gatekeepers’. They will encourage the client to see beyond their own problems and learn the manners of consultation and compromise. But often what occurs is a process of incorporation, whereby the powerful group facing opposition seeks to incorporate the members of opposing groups into their own organisation as a way of nullifying that opposition. Such individuals often rapidly take on the values of the group to which they were formally opposed, and indeed can then be used as a channel for ‘selling’ the dominant group’s set of values back to opposition groups as a whole. As Involvement develops, as users and carers sit on various NHS committees, it is unclear whether they sit there in their own right or as in some sense ‘representatives’ of their own groups or networks. A few years ago my local mental health trust formalised its payment policy for Involvement. (Workers are always keen that the ‘contribution’ of clients and carers be recognised; in their turn some will refuse to attend unless they are paid). The Trust recognised three levels of payment, each with its own mini ‘job description’ on the expectations and obligations of the role, from simply turning-up, to doing work for and being responsible to a particular committee whilst at the same time being a ‘representative’ of, and feeding back to, any user or carer group the individual might belong to!

Involvement activity also has something of the character of ‘consumer rights’ or political ‘special interest’ groups. In a them and us situation you are not only the victim of the powerful in terms of rights and resources, you also allow them to define the terms of the debate and the ‘world view’ you have of yourself. For example, complaining that the experts aren’t expert, but instead of taking back power, simply demanding better experts! And in forming networks and lobby groups there is also the danger that ‘complaining and campaigning’ becomes an end in itself - a different kind of dependency where you remain tied to those who seem to oppress you rather than seeking a genuine alternative. Worse still, in trying to be an effective opposition, the way your own group is organised may come to look much like those you seek to challenge. There is the phrase ‘grievance gravy train’ (first used in New Zealand) to describe the activities of individuals and special interest groups who used employment, welfare and equal rights legislation; not just for the resolution of individual disputes, but for the building of careers, organisations and political influence for their own sake. (New Zealand also provided the term ‘Pro-sumer’ - meaning a professional consumer of health and social welfare services).

The reason such processes as bureaucratic control, incorporation and special interests occur and serve to further underpin ‘them and us’ is that health authorities are not actually prepared to negotiate with those they seek to help. Nowhere in law is anything conceded apart from the right to be consulted. Through Involvement activities you can turn yourself into a professional patient, rewarded for conforming (accepting training in how to ‘present’ your experiences, or how to become a quasi worker by formalising peer support!) At worst Involvement becomes an add-on to traditional practice, a way of making work and expanding influence. Alas during my four years involved in Involvement I cannot think of a single issue raised by users or carers in a forum which then led to a change in the way workers practiced during their day-to-day encounters with clients. But then groups being what they are, once you express such pessimism it rapidly comes to be seen as disloyalty!

Those who pursue a Recovery approach sometimes claim to have gone beyond the need for formalised Involvement because relationships are negotiated at every level between client and worker in an open and transparent way. But it remains the case with Recovery, as with any other client-centred approach, that the worker will always claim your views are valid, but only to you. They will never accept that your views could be representative. They will waste thousands of pounds on surveys designed by themselves in order to gather opinion, little realising that a few hours spent reading user’s blogs will furnish the entire range of opinion from across the globe. Equally, they will never concede that you could have superior knowledge on the causes and best treatment of mental distress - by definition the mental patient cannot have a greater insight than them, despite the common mantra that you ‘know yourself best’.

Despite all the above the relationship between user and professional may become very close. Often the same workers who have tried to support you over many years are those with whom you end-up trying to negotiate. You like and are attached to them, but they do not reciprocate the hard work you have put into trying to affect real reform. You listen to a hypocritical remark, or occasionally a blatant untruth which they have convinced themselves must be the case, and you know for certain sure, that now ‘it’s not me, it’s the others’ and that it is time to leave.

Stephen Fry And I - self-stigmatisation?

Acquiring the DVD of Stephen Fry's two part documentary The Secret Life of a Manic Depressive has caused me to reflect on how differently I now feel about mental health services, Stephen, and myself - 5 years on from when the programmes were made.

Stephen and I go back a long way. I've often relied upon him for a bit of 'vicarious living', although of course we have never met. We seem similar in many ways (apart from the sexuality that is - I consider myself 95% straight).

Everyone enjoys some vicarious living, and since the rise of Hollywood in the 1930's, probably more so in our time than in previous eras. But the more socially isolated one is - the more one lives in fantasy with little 'reality checking', and the more one depends upon it for the sense of intimacy and belonging one would normally get face to face. Stated another way, those with a diagnosis or label of  mental illness depend on fantasy more than others.

So having imaged for many years that Stephen and I had a temperamental connection, the revelations in the two documentaries came as no surprise. But my attitude on first viewing was very different to the one I have now. Then I was happy to describe myself as Bipolar, the label had explanatory value for me. Indeed the only reason to accept a diagnosis should be if it has some practical use value to you; if it explains something about you to yourself, making it easier to live with yourself; if it gives you access to useful help, or helpers; if it helps you to act differently, or to let you get things you want but don’t already have.

Also at that time I believed mental health services still had some useful expertise I could acquire (even though by that stage I'd been a service user - off and on - for 18 years) Equally, alongside 'Bipolar' explaining something to me about myself, when I found some supposed characteristic of the Bipolar person I'd not previously known about, I still gave serious thought to the possibility that I must have missed something more about myself. I was well on the way to becoming the next Kay Redfield Jameson.

Why do we hang-on to beliefs, routines, habits which appear illogical and sometimes positively self-destructive? Because they appear safer than the alternative. All change (good or bad) is at first experienced as stressful (occasionally terrifying). Others will be reassuring and tell you of the benefits of change, but this of course counts for nothing! Any change requires acting before we really feel competent to do so.

Having learnt something of the above much has changed in my life over the last five years. I have no 'symptoms' so cannot legitimately use the label, my identity is based upon my actual activities and the social contacts I make, my explanations of myself come from evolutionary biology and neuroscience (natural variation in the limbic system and as a consequence a lot of dodgy learning) and not from psychiatry or clinical psychology. But as I get better and happier, the more angry I become about the pathetic record of mental health services, past and present. However, I still take one prescription drug - having been on one mood stabilizer or another for 17 years, it gives me a certain minimal status and some entitlements in the face of unemploy-ability!

And Stephen? Well, I still follow his antics and enjoy his writing - he persists in making me laugh. I can see that his giving-up smoking and taking more physical exercise are hugely beneficial. But it now seems crazy for him to use an intense work schedule as therapy - a way of staying one step ahead of depression rather than stopping and confronting it. It is not until we give ourselves permission to relax that you can feel and let go of pain. He remains a man uncomfortable in his own body - especially in those moments of verbal linguistic magic. And that takes us to the core fear of the supposed Bipolar person - that recovery, change, or just stopping to relax and let go, means an end to creativity. IT'S A MYTH. Indeed, the ability to let go brings greater spontaneous creation. Stephen declares he must shut himself away in order to write, even to the extent of keeping the curtains drawn to shut out the rising sun. Tish and pish I say my fluffy friend, raise your eyes to the horizon, the answers come from being at home in the outside world.

For more on labelling ourselves, see my February post Goffman and Becker; stigma and labelling.

Stephen's website is at; http://www.stephenfry.com/
The DVD is available at Amazon; http://www.amazon.co.uk/Stephen-Frys-Secret-Manic-Depressive/dp/B002XT38GO/ref=sr_1_2?ie=UTF8&s=dvd&qid=1277016760&sr=1-2

Walking Through Life - how mental distress is caught and taught

As a child you watched how parents or siblings walked and then you began to copy them. So it was with everything else you learnt, as peers and other adults entered your environment. Experience and learning are inseparable. The more you practice existing skills, the more you try to reproduce today, the world as it was yesterday. All learning consists of first imitating (copying or modelling) how others behave, then repeated practice (trial and error) - both mentally and physically - until you gain a skill. All behaviours are habits. And the only way to overcome an unwanted habit is to copy a better one from someone else. We are social animals with a social brain.

At some point you learnt to walk down the street and avoid eye contact with someone (the invitation to normal social interaction), if that became a habit, not just towards those you disliked for a reason, but a practice applied to the whole social world of others you acquired a mental 'illness'. The classic way of avoiding eye contact is to look down and away (a gesture normally reserved for the occasional experience of shame), but if you stare at the pavement for a lifetime - rather than naturally allowing the eyes to return to the horizon giving an automatic upright posture - then you become a physical cripple because of your social isolation.

Another form of isolation is when we look through people, being physically present but mentally somewhere else. But that leaves the person terribly exposed, you can't do two things at once - fantasise and be in the present moment. Very quickly others notice that your speech simply doesn't fit the situation. The so-called 'psychotic' person follows an erratic path and easily becomes disorientated because they are disorganised. Eventually, they too will look down and away.

Sometimes people come to believe that hanging-on to familiar, habitual, well understood, fears will keep them safe, not just from occasional real physical danger, but from other anxieties in everyday living. The desire to be in control too much - causes more isolation from others. But when you make eye contact with others, when you operate your body in the same way as someone else, you begin to have the same kinds of thoughts (though the content may be different). The desire to belong, which is in all of us, is rewarded.

(See previous posts on meditation, and physical therapy for the 'up' side of the story. The acquisition of new social skills and better habits will be discussed in future posts).