From the Mental Patient to the Person

Dr Peter Barham, Peter Barham, Robert Hayward

• Publisher: Routledge
• Year: 2002
• eBook ISBN: 9781134952878
• Topic: Medicine
• Subtopic: Health Care Delivery

The aim of contemporary mental health policy is to enable people who have had a severe mental illness to lead relatively independent lives in the community, rather than be sequestered permanently in the large mental hospitals. In recent years plans to hasten the closure of many of these hospitals have become controversial and generated sharp debate about community care. From the Mental Patient to the Person contributes to this debate through an exploration of the experiences of a group of people with a history of schizophrenic illness, who are living in the community.

1
THE PERSON IN QUESTION

INTRODUCTION

Our twenty-four participants were selected from a larger group of fortysix, thirty-nine of them men and seven women, the majority aged between 25 and 45. Thirty-two were single (five of them women), and the rest either widowed, divorced or separated. Twenty-five of the group had no educational qualifications; of those with some qualifications three had attainments of degree standard.

As can be seen from Table 1, most of the group lived either in accommodation provided by the council (one-bedroomed flats in nearly all cases), or in self-care hostels.

Twenty-four people appeared to have stable accommodation (regardless of the quality) and had been at their present address for at least two years; on the other hand seven people had had more than five moves in the last two years. None of the group was homeless though three were in the most temporary of accommodation, and one but for the fact that he had recently been hospitalised would have had no roof over his head.

Table 1 Housing

Table 2 Duration of illness

Thirty-six of the men, and four of the women, were on benefits of one form or another, thirty-one of them on Invalidity Benefit. Of the others five were in temporary employment on community programmes and similar ventures; only one person was in full-time employment.

As can be seen from Table 2, the average duration of illness (calculated from the first hospitalisation) was sixteen years. In reality it may well have been longer because several of the participants could recall being unwell for a considerable period of time before admission to hospital.

At the time we saw them, thirty-nine of the group reported that they were suffering in varying degrees from the kinds of experiences that are regarded as symptoms of psychotic illness. Thirty-one of them were receiving depot phenothiazines and in some instances other forms of medication in addition; of the remainder only five were not taking psychotropic drugs.

About a quarter had some form of daily contact with services provided either by the health or local authority or by the voluntary sector; about half had a weekly contact, much of it fleeting; and the remainder even briefer contact at monthly or three-monthly intervals. In three instances contact was almost non-existent. The average time spent receiving services, including waiting time at out-patient clinics, for example, was about thirty minutes per week.

At the present time facilities for mental health care in Northtown are still largely hospital based though the health authority is presently attempting to develop a comprehensive local psychiatric service. The mental hospital serving the area has several acute wards, two ‘rehabilitation wards’, and various supporting departments, including a day hospital, out of which a community support team operates. Elsewhere in the town there is a rehabilitation unit with day care facilities for people with chronic mental illness and also a small day hospital. There are a number of hostels for the mentally ill run by the social services as well as hostel places provided by voluntary agencies.

QUESTIONABLE PEOPLE?

The following is an extract from a typical field-note in our initial encounter with the larger group. Ian is 36 and had his first breakdown in his early twenties when he was training to be a teacher. In the past fifteen years he has been admitted to hospital more than twenty-five times. He is now more stable but

Sees his biggest problem over the past 5 years as trying to find work. Has applied for many jobs recently but doesn’t even get to interviews. Wants to work and feels able to. Has ‘appalling’ work record, many gaps difficult to explain away. Spends a lot of time in the library reading, watching TV and listening to records. Lives in a council flat, at present someone dossing on his floor (also an ex-mental patient). Says he lost all his confidence after his illness, the general public not sympathetic. Gets impression people think him violent. Doesn’t normally tell people he has been diagnosed schizophrenic. Three nights prior to interview, talking to man in a pub, said he was schizophrenic, man became aggressive, threatened him. Still hears voices, ‘has to put up with them’. Benefits allow him to get out for drink only rarely, yet wants to meet people socially as he feels isolated.

From this and similar vignettes we can derive an impression of the structural predicaments of our participants but the question is at once raised of how we are to read them. Our initial discussions had taken us so far but now we wanted to probe more deeply into some of the issues that had been raised, and to pursue these questions we decided to work more closely with a representative sub-group of the larger group of forty-six. To throw some light on the sorts of issues that our participants judged to be the most important we start with an extract from a discussion between Ben, Frank, Sarah and Vaughan. Sarah is in her early twenties, Ben and Vaughan in their mid-thirties, and Frank has just turned 60.

P.B.:

To go back to what Sarah was saying earlier, describing herself as having a schizophrenic disability. Would you agree with that, Ben, would you describe yourself like that?

Ben:

No, I do have this illness that recurs, so called schizophrenic- type, but when I get over it I don’t consider myself disabled. I’ve always refused to take this disability pension [Invalidity Benefit] and wanted to get back and live…

P.B.:

And the reason for refusing it is?

Ben:

Because I feel it’s a stigma, and also I have a belief that it’s not a permanent thing. I like to think that I’ll get better. But that’s as much to do with my internal kind of coping with it—whether I’m just rationalising!1

R.H.:

But is that belief supported by the kind of care you’ve had from, say the medical services, this belief that you can recover from it and it’s only a thing that comes in phases? … Is that supported by the doctors or do they tend to see you as someone who is ill all the time but more ill at some times than others?

Ben:

Ah, that’s a good question! I don’t know. Given that I have medication that is supposed to stop it from happening indicates that I’m not ill when I’m out of hospital, but whether they really think I’m a bit ill and that I just get very ill I don’t know. I like to think that I’m all right and that I do get ill from time to time. But I have a disagreement about the cause of that, and the way it is treated, because I personally think it is something to do with the way we cope with the choices and dilemmas of social and human life. If you just take (this is only me and my reflections on it) the various choices you have in, say, religion—there are a whole host of dilemmas there and if you’re a thinking kind of person those dilemmas can create terrible tensions in your head in trying to cope…. What you are yourself, or what you could be…. And it’s the same with politics…. So that social argument outside is reflected in my brain. We have a mass of choice and I find it’s to do with that kind of observance of outside that affects me, and that’s the point I’m making. It’s not just like a broken leg, it’s not just internal to me, there is an external thing. I think I have some kind of weakness that makes me not able to cope with that as much as other people maybe.

Sarah:

But there was a time when you would have been able to cope with all these decisions and identify and so on. And when you have schizophrenia or whatever, it’s taken away from you and you can’t cope with it as much. I can’t explain why but that’s why it becomes a problem. There was a time when you’d have probably been able to cope. You’d have said ‘I want to be this or I want to be that’, but you can’t make those decisions any more.

P.B.:

How would you describe the schizophrenic disability, as you put it?

Sarah:

I can describe it in very poetic terms if you want me to!

Vaughan:

You can’t do that! [laughter] Sarah: If you believe in the inner man and the outer man, if you understand something about the inner man…. Well, that’s what breaks and that’s why it makes you less confident, and more difficult and hard to form relationships and all the rest of it. That’s the only way I can describe it…. That’s the thing that happens. So that’s why I just regard it as an internal disability, if you see what I mean. And that’s where you get all the problems of trying to decide who you are again and stuff like that.

P.B.:

Do you see yourself as having a schizophrenic disability, Vaughan? Or do you agree with what Ben said more?

Vaughan:

Yes, sometimes. But just at the moment things are going right for me, no problems. I don’t look on myself as being ill now. It might appear again but just at the moment I don’t look on myself as being ill. In fact I’m feeling better now than I’ve ever done in my life. I’ve definitely been ill before, though…I’ve had a year to get over it now. I would have said I was disabled when I was ill, there’s no way you can sort of act normal…you’re not able to do a job, so I would say you’re disabled. There’s no way you can go out to work, there’s no way you can cope with just normal life. Mind you, it’s not physical, it’s more mental.

Sarah:

I don’t think it is, I disagree. I’d say it’s more physical than mental. To me, mental is a stigma and basically anyone who turns round to me and says I’m mad— that’s wrong. It’s just something that’s happened which makes me act and behave in the way I am. I just feel it to be more physical than mental. Your brain still works so you can still talk, you can still act, you’re not mad or totally mad or anything like that, but you’ve still got this disability which stops you from making relationships and things like that, so I regard it more as a physical disability. A little later Sarah turns to some of the other changes that have been brought about in her:

Sarah:

I find some of my values have changed since I’ve had my schizophrenic illness. I don’t care about money so much, and having a car and having a house and all the rest of what normal society does. I’m content to live my own life as I am myself I find my values have really changed and I accept people a lot more than I used to before and that’s the important thing as well.

P.B.:

Is that something you regret?

Sarah:

To a certain extent but—how can I explain it—I think, well I can’t have it now so…

Ben:

I don’t live very well, but as long as I get food and things I’m not going to be bothered about other things that much. That’s a feeling I have…

Sarah:

I’m sure that you become more acceptable to society, look you’re a successful citizen or whatever, that’s the only thing it means in the end—having a nice car and a nice house and all the rest of it. So that society can look at you and say, ‘Oh she’s more normal than I thought!’ Do you know what I’m trying to say? That’s why you want all these things.

P.B.:

You’re saying you don’t bother with that in a sense any more, those kinds of definitions?

Sarah:

I am still bothered about it, because I still want to be integrated into society. Now that I’ve come down I still want to be integrated into society so I am bothered. But you just have different ideas and you think about other people, and you think about people in Africa who are starving and stuff like that, and it just doesn’t match.

R.H.:

When you say you want to be integrated this gives me the feeling that you don’t feel you’re part of society or not part of the mainstream. Is that how you feel?

Sarah:

Well, I’m not working—I haven’t got a job and things like that. Now I suppose it comes down to the family — if I was working, and if I did have a job and all the rest of it, they’d be happier and therefore I’d be happier— you’ve still got your responsibilities towards your family.

R.H.:

Does anyone else feel not quite part of society?

Ben:

I have felt that at times, I have felt very separate. But I’ve spent a lot of time—wasted years anyway, whether it’s to do with my illness or not—hating the world in the sense of unjust systems and not wanting to be part of things I felt were wrong…. I find it depressing and it stops me from accepting the normal kind of activities. I find that difficult to explain but for me I don’t see why people can’t just sit down and say ‘Well, these people need this and these people need that’. Social life doesn’t seem to work in a very sensible way—people are involved in their own personal games and interests and things, and so it’s not often you come across people that are particularly interested in you.

Vaughan:

It’s hard to have a social life when you’re on the dole. Making ends meet. It’s surprising how a bit of money changes you…

Ben:

It does, I tell you, I think if they gave all the patients up at the hospital a few thousand pounds, I think they’d be cured very quickly!

Frank:

What would they do when the money runs out? [laughter]

Vaughan

If you’ve no money you can’t go out, you’re not doing anything, you’re not mixing. You’re stuck at home wondering what to do next, and that’s when your thoughts take over.

Ben:

I agree yes, because I think you need other people to help you.

Vaughan:

To stimulate you, don’t you? I think you need company and you need conversation, even if it’s just about sport and soon.You definitely need to mix with someone don’t you?

This discussion can perhaps help us to identify different dimensions of the personal and social upheaval which the experience of a schizophrenic illness inflicted on our participants. Each of them can be seen to be implicated in the wider question of how ex-mental patients are now to make sense of the narrative of their lives and re-establish a basis both in their understandings of themselves and in social life from which they can move forward. Broadly we can extract from them a conception of a field of social and cultural forces in which agents confront three sets of problems:

1. Exclusion designates the structural constraints which impinge upon ex-mental patients in areas such as housing and employment, and the barriers which limit the terms of agents’ participation in social life.
2. Burden refers to the cultural freight which agents are obliged to carry in virtue of the resonances which disclosure of their psychiatric histories evoke across a wide variety of contexts and the ambiguous meanings enforced upon them by official psychiatric frameworks.
3. Reorientation identifies how agents strive to reorientate themselves in respect of their vulnerabilities to those kinds of ‘beings’ and ‘doings’ which are regarded as symptoms of mental illness, to account for them and learn to cope with them, and assimilate them into their understanding of themselves.

Clearly in any one life these problems can be shown to interact upon each other. So, for example, as was suggested by Ben’s account of the dilemmas and conflicts of human agency, the effort at reorientation may lead the agent to theorise about his predicament in ways that conflict with the official meanings attached to such predicaments.¹ We shall now provide some examples which illustrate these areas of difficulty, and the interactions between them, more fully.

Disclosure and effect

A problem common to all our participants was how to account for themselves to others. Philip, who has had two schizophrenic breakdowns in the past and has chosen to struggle along on his own without recourse to medication or to psychiatric services for the past ten years, describes the burden of his psychiatric history and the effects that he knows from experience would result from disclosure. He has been able to secure friendships, particularly in a local railway society of which he is an active member, but it is evident just how precarious he feels the terms of his acceptance to be. He has gained a foothold in ordinary relationships but his personhood is constantly on probation and he feels that he could easily find himself thrust back into isolation:

I’ve bui...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Acknowledgements
• Introduction
• 1 The Person in Question
• 2 Community Mental Patients?
• 3 On the Edge of the Common
• 4 Battling on
• 5 Revaluations
• 6 Ben: One Person’s Journey
• 7 The Person (Mental Patient) Predicament
• Notes
• References