Rights and People with
As has been said, my name is Graham Morgan. I am the Advocacy Project Manager for Highland Community Care Forum and also a user of mental health services. I have a diagnosis of schizophrenia.
Most of my job is spent helping members of the Highland Users Group or HUG, a group representing people with mental health problems, to speak out to try to change the world of people with a mental illness for the better. Today I will do that on their behalf using both their experiences and mine.
When I am asked by people to explain what I do it can get a bit confusing so I often just put my job into a kind of shorthand and tell them that I am there to help people speak out for their rights.
Many of you will have a great deal of knowledge about rights, especially our legal rights, but I hope that you can bear with me as I talk about some of the breaches in rights, both common and rare, as they are seen by some members of Hug in their own lives. Today's talk is about some of the dark times that we experience. It is not a balanced talk. There is a lot in our lives to celebrate and a lot that is good but perhaps that can be told at another time.
Advocacy is about speaking out and it is about testimony and change and perhaps I can start by speaking off one of our member's experiences. She is a lovely woman, strong in her desire to live through to the other side of her illness, fierce in her love for her children and warm to her friends, but not so long ago she experienced daily harassment from her neighbours because she was vulnerable and because she had a mental illness.
Life was a daily battle of name calling, of taunts that she tried to ignore, taunts that wounded and battered her until one day she couldn't keep quiet anymore and in frustration burst out, in a shop, shouting back at those people who were abusing her. She couldn't stop shouting because all the rage about the unfairness and the pain that she was being put through was finally impossible to ignore and had to be expressed, and because she could not stop shouting a crowd gathered talking about how she was mad and a freak and eventually the police came and she was arrested.
She was taken to the police cells and in the shame and sorrow of this, could not cope. Surely what she had done did not merit this. Surely she had right on her side. She began to call out but was not listened to.
She could not manage at all in the confines of a cell and in response to her distress the police came in and pinned her to the floor and stripped her and put her into police clothes, which would not stay up. The memories of her past, of being locked up, of being raped and abused flooded back and she tore at her skin with her fingernails and rocked back and forth and in response the police came into her cell again and handcuffed her.
She asked for a doctor or a psychiatric nurse but none came. Instead in the morning she was taken to court and surely it is not right that someone who cannot cope with harassment is treated this way. Surely it is not right that someone who will be deeply damaged by the environment of a police cell is not given the reassurance, comfort and medical help to let her manage the trauma safely.
The police cells and stations are still regularly used to accommodate people in crisis in the Highlands before they are transferred to hospital. Work is being done to combat this but it is happening slowly. What other group of people could expect the help that they get when desperately ill to start off in a police station or cell? What does it say about society that it can accept this? Even if the police are generally humane, they are not doctors or nurses or therapists of any kind and are certainly not qualified to help people in these situations.
However some of us, like the rest of the population, can and do commit crimes and sometimes we have to go to prison but is it right or just, that 39% of people in prison have a mental illness. Is society not failing people with a mental illness by allowing such a high number to be held in prison?
Continuing the theme of detention - In HUG we mainly agree that there can be a need to detain or section someone under the mental health act. It is usually there for our own protection and yet we have committed no crime and done no wrong. We are one of the very few groups in society who can be forcibly restrained because we experience an illness.
When we look at legislation to allow for our detention, we have to look very carefully at the fact that we are singling out a group in society to receive completely different treatment to any other group, and perhaps it is right that this should happen sometimes, but we have to be secure in our belief that such an infringement is justified.
Do you know what it is like to have everything with which you might damage yourself taken from you; to have the doors of your ward closed to you, to have a nurse accompany you wherever you go, even to the toilet, even to your bath, even to sit over you when you sleep, the indignity, the lack of privacy and the intrusion can be hard to bear. To walk up and down the corridor of your ward day after day - knowing that you cannot be on your own, knowing that the nurse guarding you is nervous of you and unlikely to talk to you and knowing that you have to take drugs that you might disagree with.
This happened to me once for a few weeks and I had not even been sectioned; we have to remember these things; the personal consequences of depriving people of their liberty and autonomy.
Most people who treat us do so with the best of motives but there are those who do not care, those who lack sensitivity and this can destroy our trust in those who are meant to be there for us. Let me give you an example. One of our members was admitted to hospital when she was suicidal and in her desperation was banging her head against a window and a nurse came to her and said that if she broke the window she would have to pay for it and that the police would be called - can there ever be a caring action less tactful than this?
This same member was telling me a story about how sometimes she cuts herself, because sometimes in a world of guilt and shame, a world of despair and sadness the only way in which a person can express and control the pain in their lives is to take a razor blade to their own skin.
This person went to see her doctor because she needed stitches to mend her wounds and, in a place where she may have expected care and compassion and understanding, the doctor turned to her and said that she was a wicked manipulative and evil woman and how should we react to these people who in the casual abuse of their profession only reinforce the worst nightmares that we have about ourselves and take away our right to dignity and respect.
When we look at
mental illness it is tempting to look at it purely as an illness for
which there should be a number of clear treatment options, but mental
illness, perhaps more than any other illness, is as much a social and
cultural experience as a scientific phenomenon. It is a part of our
identity and in trying to make sense of it and to live with and cope
with it and in trying to incorporate it into our vision of ourselves;
we may come up with idiosyncratic even eccentric ideas about it.
I was talking about illness and mental health problems being more than a set of symptoms. When we become ill we may lose a huge amount of opportunities available to the general public. In HUG we have a vast variety of people - lawyers, teachers, social workers, college lecturers, nurses, chemists and accountants and also people who have never worked.
We all have a vast amount to give; we all wish to have things to do that will bring pleasure to ourselves and those around us. However, nearly all of the members of HUG are unemployed many living lives greatly restricted by the low income they receive. In fact 85 % of people with a severe and enduring mental illness are unemployed, and yes many of our members would find employment impossible to sustain.
Yet if our ways of working changed, if employers and society could adapt to the great variety of skills and knowledge that we have and the different ways in which it could be used, then perhaps our talents could be harnessed, perhaps our lives could change perhaps we could regain our sense of usefulness, of belonging, perhaps we could regain our right to be needed and to be valued; unlike the sixteen year olds with mental health problems we are sometimes told about, who are bluntly told not to expect to have any chance of a working life.
Where we live and stay and the houses we live in are hugely important to us as they are to everyone else. Sometimes at the office we book bed a breakfast rooms for members of Hug who are coming to meetings. On a few occasions when the landladies have realised that it is people who use community care services who are staying they have made it clear to us that they would not be welcome.
The same thing has happened when whole communities have objected to the attempts to build psychiatric hospitals for those who are most damaged and most ill in both Glasgow and Aberdeen. Just as other communities have done when mental health facilities and accommodation are being built or developed in their area.
Can you imagine what it would be like to know that sometimes those around you do not want you there? That they fear and despise people like you? That they do not acknowledge your right to be a part of the community. Can you imagine what it would be like, as happens to some people, that your neighbours would actively discourage their children from talking to you?
Some of our members cannot manage their houses, cannot keep up payments, and cannot stay in the place that reminds them of the pain in their lives but again is it right? Is there not something deeply wrong in the fact that 44% of the homeless have a mental illness?
Is this not yet another case of our society neglecting a sizable proportion of its community, neglecting to realise that some of us cannot cope, that some of us cannot adapt and in this neglect, alienating, marginalising and discarding many of its citizens.
I will finish with a brief description of one of our member's wishes to be heard. This person who now lives in a different area had spent most of her adult life in hospitals and nursing homes. Her dream was to live in her own house back in her community and recently it became more and more likely that this would happen.
She did get a house, a house that she loved and she moved to it and felt as though she was in heaven as though she had moved into a new and vibrant life. But as the months moved on it became, on occasion, too much to cope with and she ended up back in hospital on a six-month section, and as her dreams tumbled around her she became very frightened about her future.
She felt that no one was listening to her that all they were interested in was what they thought was best for her not what she wanted. She asked for an advocate, someone to be there for her, someone on her side who would help her speak up and make her case and there was no one in the whole area in which she lived that could be found to help her give voice and weight to her feelings and you wonder how lonely she must have felt and how isolated; surely a right to be listened to is something we can all expect?
I started off this talk about a member of Hug who was fierce in the love she had for her children. A few days ago I met yet another of our members who had lost her baby because she could not manage to look after him any more and maybe it is true, maybe sometimes we cannot look after our children. But to see the pain some of our members go through, to have the most precious person in your life taken away to have to face the fact that other people can think that you do not have a right to your children, that you cannot look after your children because of your illness, is a horrible, horrible thing to think about,
As I said at the beginning I only have a sketchy understanding of human rights and the examples that I have talked about represent the extremes of people experiences. But to our members some of the things I have mentioned to today are just some of the ways in which we feel that our rights can be ignored and in which so many of us can end up feeling discarded and alienated by our society.
As a last point to me as I have said already, some of the most basic rights are to have dignity, to be respected to have a belief in yourself, to have friendships and to be accepted for who you are. For many of our members this is not the case. As an example I have a diagnosis of schizophrenia, this means that there is a one in ten chance that someone like me will commit suicide. I have already tried this once, which means that I am statistically ten to thirty times more likely than the general population to succeed one day.
Suicide to my mind is something that happens to those who have lost hope and to my mind hope is one of the most precious things a person can have. It surpasses rights and yet many of our members find at times that hope has become a remote and distant feeling and unfortunately some never find out, as I have, how precious life can be.
You are all influential and powerful people. HUG is about giving voice directly to those who have experienced mental health problems. We want to change the world for people like us for the better, but we are a small group and we need allies. I hope that the things I have said today have affected you and will influence you in your daily work in trying to make society a better place for all of us that live in it.
That's the end of my talk. I have talked of the extremes that we experience. This is a daily reality for some people but by no means all. If you ever want a similar talk but this time based on coming through to the other side of having a good life despite having mental health problems, please let me know.
Highland Users Group
Tel: (01463 718817) Email: firstname.lastname@example.org