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Attitudes to Mental Illness -
A user's Perspective

Joint National Schizophrenia Fellowship Scotland Conference with Maudsley Hospital Psychosis Unit - 1998

 

Hello

As has been said, I am Graham Morgan. I was first diagnosed as having a mental health problem when I was about 21. At that time no one really had much idea what was wrong with me, I was troubled you might say. I had a habit of cutting myself with razor blades, of taking overdoses and not knowing how to talk to other people unless I was drunk, basically I was unhappy. Sometimes people told me that I had a personality disorder and at other times they suggested that I was depressed.

That was a horrible time but it seemed that I had left it behind when I first met the person to whom I am now married.

Around six years ago everything collapsed when I cracked up and kept on dipping in and out of psychosis for a couple of years. I was diagnosed as being Schizophrenic, an event that I have talked about before. Since then I have seen numerous psychiatrists and tried all sorts of different medications. Now I am sometimes depressed and the occasional nagging symptom will flit in and out of my head to annoy, confuse and irritate me. I've also just realised that I have a drink problem following talks with my wife and my psychologist and frequent trips to the bottle bank with my whisky bottles.

For many people Schizophrenia has spelled a life of unremitting unhappiness. For me, although there have been occasions of sheer terror and desperate sadness, and although this diagnosis plays a huge role in my life I am very happy with the life that I have been privileged enough to experience.

There are moments that define my memories: meeting and getting married to my wife; spending nights learning about the legends of the stars in the mid Atlantic; surfing down a wave with phosphorescence lighting the sails of our boat; watching the sunrise in a desert or looking down on the clouds from a mountain top; the day when our son was born and holding him in my arms - I knew for certain after all our indecision and musing what his name would be - the nights when my son climbs into my bed and whispers that he loves me; and being able to do a job that I love.

I would not swap my life for anything, but there is one aspect I would change and that is the fact that I am apart, and I am different and self-conscious about it. My job is partly to campaign for the rights of people with mental health problems. I work with the Highland Users Group and we write reports on every topic under the sun to try and improve things. We're in the middle of a report on stigma and we are actively engaged in challenging stigma through mental health awareness training.

We use the word stigma automatically. All of you in this room are aware of what stigma is and I would imagine disapprove of it. That makes it quite hard to say anything new about it, but let us think for a moment. I am used to the user movement, the carer movement and the whole mental health movement, comparing itself to those campaigns for civil rights and equality as shown by black people, women, gay people and the wider disability movement.

We talk about stigma. In the dictionary there are various definitions of stigma, but the one I will quote is: "Stigma is a mark of disgrace, a stain on ones character, to mark out as something bad. It is dishonour and reproach". Other groups talk of prejudice and discrimination, much more positive and assertive words. They make people understand that what is being done, or thought, is unfair. There is nothing in the definition of stigma that says to be stigmatised is unfair, unjustified and hurtful.

I think that this is an accurate reflection of reality. The shame and hurt of mental illness permeates our society. It is embedded in the culture of our playgrounds, in our stories, in our jokes, in our myths and histories and in our psyche.

That situation is changing more and more. Some of us are beginning to be open about our experiences and to refuse to accept prejudice, but equally there are those of us who will not admit their experiences to anyone and in the extreme, those of us who find it impossible to go on living with the shame of the condition and the fear of the public's reaction.

The consequences of the attitudes that are held against us are, at their extreme harassment, discrimination and abuse. For most of us this doesn't occur. It is usually very hard for people to become aware that we have mental health problems and therefore very hard for people to single us out as the subjects of their fear.

In a rural area this is sadly not the case. In small close communities people know each other, people know who the psychiatrists are and the CPNs. They are very well aware of Craig Dunain and they know who in their community has what problems. Sometimes this can mean that people look out for your welfare which is well intentioned but can mark you out as different, but sometimes, especially if you have been in Craig Dunain or use a mental health facility, you can find yourself on the receiving end of ignorance and fear.

This, in some situations, has meant people having bricks or stones thrown through their windows, having children constantly ringing the door bell and running away, having people urinating in your room, being spat at in the street or alternatively having people cross the street to avoid you.

I remember one of the members of HUG meeting me in hospital. I remember him holding onto my clothes and begging me to find some way that he could stay there permanently so that he wouldn't have to endure the harassment of the community that he lived in.

Perhaps the two most hurtful situations that I have heard of are when a community decides that, because someone has a mental health problem, that they are a paedophile or at the very least a danger to children. This has occurred not only in local communities but also on those occasions when supported accommodation is being opened. I remember local news coverage reporting a councillor who equated the idea of putting accommodation for people with a mental illness near a children's playground, as being as silly as putting someone with a drink problem above an off licence.

The other situation is where our children have experienced harassment in the school playground from other children, sometimes to the extent that they have had to be taken out of school, or people have had to move area.

Far more common is the action of the community that could not be called subtle, or even any less hurtful, but is harder to prove. Those situations where, before you were in Craig Dunain, you had lots of friends and now that you are out you don't. People don't ring up or call round or invite you out and people feel uneasy and don't know how to treat you. Where once you would be asked to help out, perhaps to baby-sit or something like that, people now think maybe not.

In the pubs there is not the instant recognition and, as our members know all too well, that is because you have been in Craig Dunain and the reason they know that is because they too were brought up to avoid someone who had been in a mental hospital.

At its least offensive are the comments of concern that stereotype you into a perpetual role of illness and helplessness, so that whenever people meet you in the street they ask after your health. Not in the meaningless way we all do but in the way that says they are acutely conscious that you have a serious illness and that they are consciously looking out for your welfare. This is nice but it can get irritating.

It is not just other people that stigmatise us - it is also ourselves. We grew up with the same attitudes; we were the children whose parents told us not to go over the canal to play because the psychiatric hospital was over there. We are the people who talked about the "men in white coats" coming to take you away; we talked routinely of people being "mad" and "crazy" and "nutcases" in our everyday conversation, and as we grew up and began to read newspapers we began to read of "schizos" and "psychos".
We began to learn that community care didn't work and that these people were violent and had been released as potential time bombs into the community.

If we weren't reading of violence, we were reading stories and talking of the horror of mental illness and of the tragedy and fear and misery of illness, and when it wasn't the agony of illness, it was the barbarism of the old foreboding institutions that should have been closed years ago. We saw the films like "One flew over the Cuckoo's Nest" and we heard of ECT, medication and sectioning.

Eventually we, who had been brought up to think of these people as different and strange and frightening, who had been brought up to fear and ridicule the institutions and professionals and treatments, became ill ourselves, and is it any wonder that many of us assumed that this was our lives over?

Out of the window would go careers and relationships and friendships. From a place of hope in our future we had come to hopelessness. Is it any wonder that we reacted negatively and that some of us denied that we were ill at all, or if we were ill, we were not like those others who were really ill or we became angry and indignant or sad and depressed.

Whatever the reaction, for a large number of us we found ourselves feeling that we were living on the verges of society due to the reaction we have to the way society treats us and due to our own feelings about our self worth.

There is a story that illustrates this. One of our members was told that she would be admitted to hospital and travelled down in the ambulance. She was so scared that her husband would stop the ambulance and get out and leave when he found out where she was going, that she didn't tell him until the last possible moment of the journey.

Once in hospital she kept her coat on all the time in the hope that people would think she was a visitor, and not a patient, and when she left the ward she waited until the nurses did the same in the hope that those people seeing her would mistake her for a nurse.

These stories and these accounts should be depressing to you, but no surprise. However, the effect is enormous. I remember the first time I decided that I needed help I was sitting on the wall outside the doctor's surgery for so long, frightened to go in, so embarrassed and ashamed to say that I could no longer cope.

Everything turned out well that time because the doctor had seen me and left instructions with the surgery for me to be sent straight up as soon as I plucked up the courage to enter the building, but there are so many people who, even if they know that they are getting ill, will not accept or go for help. This is especially so if they have to get help from a mental health service.

There are a number of issues about stigma and challenging it that are unique to people with mental health problems. I have talked about the reaction of the community to us, and the implication of that has been that it shouldn't happen. I would agree with that, but in many ways I can understand why people feel wary and ill at ease, and at the extremes avoid us when we are actually ill.

We live through things that no one wants to live through, we act and express and communicate feelings and emotions that no-one wants to have to face or acknowledge. When I am sitting in a chair waving a cigarette over my hand in the hope that I can overcome my wife's wishes to the contrary, and burn magical patterns on my skin and thus get rid of the spirits I think inhabit me, I am myself in a world of emotions and experiences that I would give many things to avoid - but so also is my family.

When my wife reminds me of the time I hid under the floorboards, sleeping on the rubble that made up the foundations of our house with our son sitting on top of the trap door pointing down and saying daddy, I hope to myself that never again will I do something like that which my son will be grown up enough to see and fear.

When I see talented, vibrant, creative people full of different things to give to society sink into depression, who think of themselves so badly, whose energy has trickled away, who can hardly look at you or even think of an end to the darkness that they are in, I feel a huge frustration in me. I do want to shake them; I do want them to pull themselves together. They are my friends and I want them to see how much I like them. I want them to see how much they could like themselves, and yet I can't reach them.

When I see someone talking, and talking in a welter of ideas, movements and emotions where bursts of brilliance and energy light the air next to fantasy, stupidity, embarrassment and confrontation, I know that the best that I can do is occasionally smile. I know that I will not understand, or be able to keep up, and I wish that the good bits could be harnessed and the ugly bits thrown away and that someone will be able to find some way to calm them down.

Maybe sometimes we can talk about the liberation we sometimes experience when allowed to express emotions when we are ill, that we wouldn't ordinarily do or the ways we can grow having lived through experiences like these. These are certainly important points, and in many ways I am glad of the things that I have gained through the experiences that I have lived through, but I could never claim that it is desirable to live this way. In an acutely depressing story, one of our members told of how a chicken marked out as weak or different would be pecked and pecked by the other hens in the hen run, and then compared their reaction to that of the rest of society to us. Some people thought this a very negative view of society, and yet sadly it seems to hold some truth - many of us will avoid those extremes of negative emotions, which you see in illness.

There is the phrase "health, wealth and happiness", a condition to which we are all meant to aspire, and yet when we look at the majority of people with mental health problems is it any wonder that people avoid us, or feel awkward or sorry for us, we don't have health and part of this ill health takes away happiness and our status in society means that earning even an average income is unlikely.

When we talk of removing stigma we often talk of comparing our illness to diabetes or some such chronic illness. I find this a silly thing to do. As I have just tried to say, mental illness is not just an illness; it is an experience laden with judgment and values, which are so fundamental to our aspirations, and wishes that they couldn't be disentangled. At the moment the statement that stigma is a natural consequence of our experience seems to me to be understandable. We seem only to be at the level of saying stop bullying and avoiding us and start realising that people with these lives need support and understanding.

This of course only reinforces stigma. The level of just trying to support us and understand us can be so patronising and derisive. I want to go a step further, and although I only have a half hearted belief in it, would suggest that we look at our emotions.

When we look at happiness we also look at sadness. Without an experience of the negative emotions we cannot be aware of what all the positive emotions are. Perhaps we can go a step even further and, instead of saying that the experience of sadness reveals to us what happiness is, the existence of the whole range of negative emotions have a purpose in their own right and to resist their reality is to resist the diversity of life itself.

It would be nice to have a theory that proves to other people that the negative experiences, so common to people with a mental health problem, do not mark them out as justifiably avoided. I don't have that theory, but as we all know you just need to be in the company of people who have experienced mental health problems to realise that the dictionary definition of stigma should include that the disgrace is unjustified.

 

 


Highland Users Group
Tel: (01463 723560) — Email: hug@hccf.org.uk

 

 

 

 

 

HUG Talks - Attitudes to Mental Illness