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The Stigma of Mental Illness -
Joint National Schizophrenia Fellowship Scotland Conference with Maudsley Hospital Psychosis Unit, September 2000

 

 


Hello

As has been said I am Graham Morgan and I work for Highland Community Care Forum as the Advocacy Development Worker.

This really means that I work with the Highland Users Group who represent people with a mental illness, and with People First in the Highlands, another advocacy group that represents people with a learning disability and lastly in the development of a Highland Advocacy Strategy.

In the next twenty minutes I will talk about the stigma of mental illness from a personal perspective and Emma who is the HUG Communications Worker will talk about what we have been doing in the Highlands to challenge it.

A couple of weeks ago a friend gave me an old second hand copy of a book written in the year that I was born. It is called Stigma. I've only read a few paragraphs of it, but it seems to me that the stigma that I have grown up to experience in this new century is very similar to the stigma that Erving Goffman wrote about in 1963. Public attitudes to people with a mental illness have really changed very little in the last 37 years, which is very sad.

I have a mental illness, which has been diagnosed as schizophrenia. Sometimes the things that I go through are horrible, but for the vast majority of the time I live a happy and enjoyable life. However, as we all know, for many people, mental illness can be a debilitating and traumatic experience. It is an attack on fundamental perceptions of self and reality and the possibilities of happiness.

Once people have become mentally ill it is possible to be excluded, to be seen as different, as a threat or a burden and an embarrassment. It is possible that you will be avoided, talked about maliciously or as a problem, that you will lose your friends and that in the extremes that you will be actively persecuted.

I could almost stop here. To think that people, who through no fault of their own, have slipped into an illness, from which there is sometimes no escape and little hope should then, on top of that, be looked on as separate and inferior that they should be put apart as different to everyone else, that they should be judged on something that they could do nothing about, is frankly obscene.

It is something for which we have no excuse, no let out. As a society we have a responsibility to treat people with respect and fairness, and should embrace the different experiences we can all bring to it. We all have to stand up and admit that we have all failed people with a mental illness.

Whilst I believe all that I have just said, I would however say that stigma is more complicated than this. It is everywhere but it is not always intentional. It can be both melodramatic and subtle and we as people with a mental illness, can ourselves, live up to its stereotypes, deny it even exists or even encourage it.

Our perceptions of mental illness are a medley of our upbringings, our cultures and values and everything is swirled around and mixed up. Nothing is really black and white. As a person with a mental illness I do not consider myself to be a permanent victim. I do not feel oppressed by society or the words used about people like me and yet at the same time I do.

I am going to use myself and those around me as an example of how stigma is confusing because like many members of HUG, I have never felt overtly discriminated against. No one has spat at me, no one has refused me service or denied me employment because I have been ill and yet the feeling of difference exists.

My son is eight years old, along with me wife, he is my joy. He is the most important person to me. I love him and he loves me. We go bicycling together and walk along rivers and every night we read his bed time story together and often he will talk ten to the dozen and I will ignore him and he will get cross, in other words we have an ordinary family relationship.

Yet every day my son will call me a nutter or a weirdo or sometimes a lunatic. Sometimes I feel a tightening in my heart and I want to cry out to him to stop it. Sometimes I feel angry and I want to shout at him that yes I really am a nutter and does it matter?

My son has picked up these words from the playground. He has little sense of what the words mean and no idea of how offensive they really can be. They are just fun and it's nice to use them with daddy because we all know he doesn't really mean it and that daddy will often laugh.

I suppose that with those innocent actions we embrace a whole world of stigma.
Most people use language about us that is derogatory and that demeans us as a matter of course; in the papers, in the jokes, in the films and comedies. It is a devise for a few laughs and a compelling headline. It is both deeply malicious and completely irrelevant to our lives.

The other side of my son's comments is the fact that he has no idea that I have ever been really mad or really a nutter. He knows that I have an illness, but he does not know what it is and is not very interested in it at all.

You will hear later that we are going to be doing work in schools but at the moment I have no idea of how to tell my own son about my illness. How do you sit down with someone who is unaware and unprepared and talk about the times that life is unbearable. How do you say to someone who is so good at enjoying life that his whole body wriggles with excitement, that sometimes his daddy takes a razor blade to his own skin and that once his daddy's only wish in life was to continue stubbing cigarettes out on himself, that sometimes his daddy thinks that he is so evil that he wants to be isolated from everyone else.

I don't know how to do this. I know I should but even as I write this I feel my stomach churn with the hurt of it all to talk so close to home to a child, to change our illusions and perceptions about who we are in each others eyes - it frightens me.

Stigma as I think I have just shown is not an 'other' people thing. We are all fully signed up participants. We are all people who have been brought up in it. We have all been brought up into the idea that life is about laughter and loving, It is ideally about success and glamour and possessions. We are meant to be dynamic and rational and healthy and good at talking and socialising. We are meant to be in a world where life is all about living.

And so, for some of us, the greatest stigma comes from us. It colours our lives and is reinforced by the illnesses we have, so that although we can say this life is purely a result of my illness and not our fault, many of us can't believe it; when for us the sun loses its joy, when life becomes a pale mockery of what we had wished for, when those around us echo back our pain, when we lose our jobs and don't complete our education, when there are devils in the glitter of a summers day we feel that we have sinned not only against ourselves but also against those we love and all those things we have been taught to wish for in our lives.

Illness stops being relevant and it all turns into the question of how bad we really are to ourselves and those we love. It is not so easy to say that the sadness is not our fault that we are not responsible when everything, ourselves, the nature of our illness and our society conspires to say that it is.

Not talking is the cloud that creates stigma. When I first became ill, when I first wanted to die, we agreed that my grandmother would not be told because she was from a culture and of an age that could not accept such things, and yet although I know she wouldn't have understood I think I would have liked her to know, especially as she also nowadays spends a lot of time wishing that she too could die. She often thinks people are stealing from her and very rarely has much memory of who her grandchildren are and almost none of her great grandchildren. This secrecy this desire to protect only damages ourselves and reinforces the ideas or wrong doing.

Stigma is the clouds of blame we wheel around ourselves. There has always been a moral question about illness and its causes.

For me - I became ill just at the tail end of when it was still fashionable to blame families for illness and really what better reason when you are young and angst ridden than to blame your family? I hated my family in those years that I was becoming an adult and blamed them for what I was going through and sometimes I still do.

The first my parents knew about my attempted suicide was when they received a benefits form to fill in from the hospital. Sometimes I try to understand what they went through. To know that your child wants to die must be a terrible, terrible blow but to be told that he won't see you and that he blames you for his misery is a shock and a blow that must be a wrenching agony to live through.

I remember that they often said that if only they could go through what I was going through they would. I remember they reached out and I would not respond and really there, you can understand stigma because there are wounds that will never heal, that will always be feared and not spoken about, for the very pain that they cause and mixed in with it is a shame that cannot be justified and cannot be shaken off and in that guilt and fear we build up differences that set us apart.

Stigma is not just about pain it is about an illness that is full of social consequences. No illness exists in isolation. It can damage and wound all those who you hold dear to you because illness of whatever kind is not pleasant and easy to bear.

Recently I was sitting down with my wife and we remembered a time I had forgotten about. A time when I was trying to convince the doctors surgery that it would have to be sterilised after each time I visited it, and at such times you remember that once life was a place of optimism, when the phrase of "in sickness and in health" was a glibly given promise, a freely given commitment with little idea of what can happen.

When my reality splintered those shards were not pretend. For a time the commitment my wife and I had given each other was also close to bursting. When the person you love is in another world and they have become a stranger to you, all the promises and hopes you give so happily to each other become a mockery to your dreams and it is only with huge effort that you can both keep together and try to build lives that you hope will sustain themselves in the future even in the face of uncertainty and fear of what could happen all over again.

When those that are close to you find that the pain is too much and curse the illness that has stolen you, you can understand how people come to fear it and in the disintegration of love and family you can see the growing power of stigma.

I shall not carry on my story too much longer but I do have a few more examples of the way stigma and shame can enter our lives so easily.

The services that we use have a history that cannot be ignored. However much they may ultimately help, they can also be about a form of control that is hard to accept and can seem, through their own at times barbaric history, not to be the place that people inevitably turn to when they fear they have become ill.

They can come to symbolise fear and failure and punishment. I am sure that those are some of the feelings that went through my sisters mind when a health visitor suspecting postnatal depression made arrangements for her to see a psychiatrist, an appointment that she wanted to keep but did not attend for fear of what would happen to her and her baby.

Psychiatric services have a huge image problem to overcome before we can feel free to ask for help and to be open with those who are there to help us. When we fear the very services that help us then the existence of stigma is of little surprise.

As you might have gathered a lot of my identity is based on what I have gone through when ill. Illness and disability is as much a part of my self-image as those events in my life where I have experienced times of beauty and joy and wonder.

I find it hard to feel comfortable with people who have not experienced illness. There are things that other people cannot understand or appreciate if they have not seen it or felt it.

Recently I met a friend of a friend who knew I worked in mental health but not that I had been ill. When after a little tentative and frightened discussion we realised that we had both been mentally ill, the tension of do I or don't I admit it disappeared to be replaced by a feeling of ease. You can see this in drop in centres or places that we meet.

Sometimes I think, when seeing my friends and acquaintances at ease and making jokes of the most awful situations, that some of us who have a mental illness do have our own culture. Although we are equal members of society we also have an identity that should not be subsumed by attempts to make us normal or ordinary or conventional in the name of inclusion. Equality does not have to automatically mean integration and sometimes it is easier for a time to be around those we consider our own.

For me being diagnosed was a liberation. It gave justification to what I was feeling. It gave legitimacy to what I was going through and gave me something to come to terms with but, as we all know, some diagnoses carry with them echoes that determine how we treat people, not how we treat them as individuals nor how we respond to a persons problems, but how we slice a person into a set of generalisations that have little to do with that persons identity or reality.

I have felt this as a father, when various sets of people have in turn thought that my son may be epileptic or have aspergers syndrome or perhaps attention deficit disorder and there you can see the dangers of our labels, to put a series of disorders layered and bound up with assumptions and generalisations onto anyone is wrong, to do such a thing to an eight year old just beginning his life feels repugnant and in this belief where we fear even to name the problem we can see the power of stigma.

What I have been trying to do is to show that even in a family such as mine or maybe yours that would normally say it has been free of stigma, that we are not. The stigma of illness is in all of us whether we want it or not.
Our actions are coloured both by the image and mythology of illness. Our perceptions of how people should act in our society, our own self-image, the illness itself and the history and actions of the services that are there to help us

Fundamentally it is our belief in what is normal and acceptable that damages us.

We all set impossible standards of success and happiness and when we are not berating ourselves for our own so called failings we can leave those who don't succeed behind on the different margins with which we draw up our pictures and images of the worth of other people.

I haven't given much of a rural context to this. In HUG we do a lot of media work and whilst I have said that I have never been discriminated against, I don't give my personal story to the media. In the back of my mind is what could happen to us with the wrong sort of rumours in the village in which we live. It's not a paranoid fear either.

Although local communities can give a support and backing not found elsewhere the lack of anonymity and the ability to come to the wrong conclusions have led to a few people in the Highlands being beaten up, ignored and even forced to leave their communities.

This type of action is not something that just rests with prejudiced people coming to ignorant conclusions. I know of doctors who have called people with a mental illness wicked and evil, who think that it is a problem confined to the homeless and unemployed who call a cry to be helped a sign of attention seeking and manipulation. In their own way these sorts of actions are just as damaging.

Do any of you know those times when life is so hard that you cannot do basic things like deal with money without fumbling it and getting confused?

A friend of mine did this on the bus not so long ago and in scenes that take you back to the 60's, the driver said that he didn't know why people like my friend were ever let out of hospital, and yet here is the difference and the reason groups like HUG can exist. Although my friend left the bus in embarrassment and anger a fellow passenger saw what was happening and complained and the driver was disciplined. Stigma hasn't gone away by any means, but we are standing at the point where we cam all give it a shove to send it away.

It is tempting to leave desperation behind. Sometimes now that I am happy so often, sometimes when I am sitting at the base of one of the trees in the garden with a whisky in my hand and horses and rabbits on the field below I have yearnings to forget all about this.

In HUG we try to give a wider view. Mental illness is widespread and is horrible to go through, but it is possible to live with it and to enjoy life, to make friends, to find work and to have families. It will be a great deal easier if people let go of the fear that they think that they have of people like me so that we can all be as open as we like about our experiences without fear of retribution.

Thank You


 

 


Highland Users Group
Tel: (01463 718817) — Email: hug@hccf.org.uk

 

 

 

 

 

HUG Talks - Stigma