INEQUALITIES and RIGHTS TALK
BI POLAR FELLOWSHIP/SUPPORT IN MIND
Hello. It is great to be here and to have a chance to share some ideas about mental health and physical health and rights.
I am speaking as the special advisor to HUG (action for mental health) and have passed this talk to some of the other service user groups in Scotland to check it might be more or less in line with their thinking.
When I e.mailed the HUG advisory group about this talk I got many views that I will include here but one reply from one of our members said that when she had had a serious problem with her eye, the initial response from the medical profession was to assume it was probably a psychological problem. It took ages before they realised she had a physical condition which needed a major operation, when some time after, she broke her arm in two places in a fall, the A and E department initially assumed this was due to deliberate self harm and when she was due to return to work, her return to work interviews were all about her mental health rather than the problems caused by her injury.
Another member talked about how she was sure mental health professionals arguing about whether a person had a physical or mental illness resulted in his death and another talked about a person who collapsed with physical issues mainly because the mental health problems that lead to his homelessness were not addressed.
Those short stories will be similar to many stories many of you have and illustrate just one of the problems we face when trying to deal with our physical health.
And, of course it is good that in general hospitals there is increasing use of liaison psychiatry where the staff take a bio psycho social approach to us, or in other words they do try to look at us in the whole, do challenge gently, the anxieties some other staff may have about us, do try to refer us to the right people and do their best not to see mental health and physical health as an either or, type of thing, but it is still desperately sad that the judgement that accompanies us when we are seen to primarily suffer from a mental illness can lead to profoundly poor decisions about our treatment and ultimately our health.
Today you will have heard some of the shocking statistics about our physical health. I find it hugely alarming that with my diagnosis I am statistically nearing the end of my life at the age of 53, I find it difficult to understand why the terrible health we suffer is not a national scandal and do not understand why we do not shout loudly all the time about it, why we do not appear on tele, lobby parliament , speak in the papers and on the internet about this basic, basic, inequality.
I have a feeling that I know why we do not speak out as loudly as we can and it follows the following lines.
For many of us, one of the main reasons we die earlier is not just due to our physical health being neglected by professionals, it is not just due to the side effects of the medication we take and it is not just due to the fact that the outcome of some mental illnesses results in death, although those are all indeed tragic reasons why some of us die so early.
One of the major reasons for our early death is due to cardio vascular problems, issues with our heart, our breathing and, much as we resist this, this is often caused by smoking, alcohol, poor diet, drugs, and lack of exercise. We are to put it bluntly not very good at keeping fit and healthy and so, in a world where we are used to people lecturing us about our lifestyle it can be very hard to speak out about this issue.
After all we know what all these lifestyle issues do to us and so why do we not do the opposite and start to look after ourselves?
And at first glance it is hard to challenge this, we live in a world where responsibility, independence, self-management, autonomy, empowerment, control are the buzz words of people left, right and centre and if we accept their rhetoric, the solution is for us to admit to our failings, buck up, pull ourselves together and try to create a future where we control, not only our destiny and dreams, but also our health.
We need to believe in ourselves, we need to tap into our reserves and to bring out of our innermost being, the resources, the will power, and gain the information, skills and confidence to look after ourselves.
In some ways there is a degree of attraction in this message, after all who is ever going to stop smoking unless it is ourselves making that difficult decision? And who is ever going to start to get fit unless we start to walk to the shops and avoid chips and mars bars?
It is beguiling this view and it does a great job at stopping us being indignant, it is very hard to say this is a huge rights issue for our community if the policy makers turn round and say the solution is really in your hands.
And that is why it is hard, that is why our spokespeople can feel awkward when they speak out for our right to smoke when in hospital because that very ideal, that very wish for that freedom could contribute directly to the early death of the huge number of people with schizophrenia who smoke. In some ways you could say that our spokespeople, people like me, sometimes seem to be speaking out for the right for us to have awful health.
I am hoping that I can give some thoughts on why we do this and why the approach of promoting our own personal solutions, misses the point to an extent.
As I write this speech I have just come back from a wonderful weekend in Achmelvich in North west Sutherland, I walked a lot up there, talked and laughed a lot, ate some very nice and mainly healthy food and spent hours in the company of people I enjoy being with. I will come back to that in a moment but by coincidence some of the people on the weekend also work in mental health and they gave me some ideas for this conference.
The first thing that struck me was the comment from a friend who works on an NHS Sponsored project with various countries in Africa about men with AIDS. I didn’t catch all she said but one thing that struck me was that she said that, in contrast to many of the women with AIDS, who did all they could to keep themselves and their family together was that many of the men, in many ways, gave up, almost waited to die. According to her, something fundamental about being a man went away with the diagnosis of AIDS and that vison of being a man was key to their identity and with it went the will and the desire to carry on instead there was a ‘Why bother at all?’ attitude.
And I wonder at this. I wonder at identity and the things that make us feel good about being who we are, the things that inspire us to keep in touch with the world to keep that struggle, optimistic and positive.
Maybe for some of us, the society we live in and the way we are treated by that society, our own internal vision of ourselves has a huge impact on that struggle and the desire to be healthy.
What is the reality of mental illness in this country ? What is it actually like? I am sorry but I am going to have to be very negative indeed here.
We know, well what do we know? We know that around 80% of people with a severe mental illness are unemployed, we know that stigma is a routine reality, we know being homeless goes hand in hand with having a mental health problem, we know the same applies to the prison population, we know our services are sometimes at breaking point despite the rhetoric, we can struggle to get admitted to hospital and we can struggle to get seen when we are in distress and a huge number of us live in poverty.
You will of course know all this inside out but let us take the stereotype, let’s first of all add the illness which we know is pretty horrible, this includes all the apathy, all the sadness, all the paranoia, it includes that blankness and emptiness and that stultifying lack of energy
.When we look at this first ingredient of our stereotype does this encourage us to do all those healthy things?
When making a cup of tea is the best we can manage and deciding to get out of bed is the major decision of the day do we really want to walk in the hills and soak chickpeas for a veggie stew later in the day?
And then of course there is the employment stuff, A dear friend I know spends much of her time pretending she has a job, she cannot bear the humiliation of her reply to those casual enquires about what she does; how welcome do we feel in our society when we admit to years without work?
And benefits, just the title of those tv programs and the content of those speeches by some of the politicians is enough to make you wither, to hide, to feel that terrible shame and then there is the other side to benefits; I claimed benefits for the first time in 30 years this year and was lucky enough to get PIP – and that says it all – ‘lucky enough!’ why would I say that? And why am I already wandering what to do when people realise I don’t need it? Why am I already feeling guilty for accepting it and why am I already thinking that there is some sort of advantage to illness when I look at the money that can be attached to it?
And poverty , it is true that you can live cheaply on lentils and rice but people don’t, it is hard and expensive to be healthy, it is hard to be optimistic, it is not likely that you will spend your last fiver on a bus trip to the hills
And so the litany goes on, loneliness, one of the great sadnesses for so many people, without friends and people around you, where is the impetus to make a lovely meal? to go out for a wander, to play a game of football, to just feel happy and content with life?.
And then there are the attitudes around our care and the reality of what is available to us. I am lucky I have my c.p.n. and my m.h.o. and my psychiatrist and happen to get on with them all but let us ratch up this stereoptype a wee bit more:
maybe your doctor is ignorant of the connection between depression and heart disease, or diabetes and depression, maybe for some reason she hasn’t let you know about the weight gain that comes with anti psychotics.
Maybe he doesn’t know that many of the long term conditions are inextricably bound with mental illness, strokes, c.o.p.d., all these things come with depression and maybe he doesn’t know that there are ways of helping with this mind body thing that are effective and helpful.
Maybe she is quite judgemental and doesn’t acknowledge the effect of pain and weight on mental and physical health.
It could be that your doctor is one of the old school and regards the mental and physical impact of ageing as inevitable instead of treatable.
Perhaps the local hospital you go to doesn’t have access to liaison psychiatry where all the links between physical health and mental health are well known with expertise and advice being available to medical staff who are maybe still very wary of the mental health dimension to health.
Maybe you were brought up in an area of deprivation and extreme stress where the future links with future physical illness are well known, but maybe no one is doing anything where you live to stop the same thing happening to your children,
Or perhaps you are one of the huge number of people with a mental illness who have experienced abuse and trauma in the past, you might have that horrible label, a personality disorder and trust is an issue for you, abandonment is an issue, maybe you crave human warmth but the past means that you struggle to accept it and often it goes wrong and maybe you are always one step from the most dreadful self- harm and yet when you say ‘Please, please help me,’ you are told to remember your d.b.t. skills,
When you say you cannot cope you are told to remember your ‘steps’ course and when you say you don’t feel at all safe that you need somewhere to be looked after, you are told that the decision to live or die is your own personal responsibility and when you lose it and get drunk and try to harm yourself you are either left to walk home once you have been stitched up or maybe kept safe in the police station because there is no other service that will help you when under the influence and when you plead and say
‘I cannot cope, I cannot cope’
you are assessed as not being sectionable, or admittable, you are assessed as not being a high enough risk, you are given a fifty minute chat until you gain the strength to walk home and wait for the next time and the next time and how does that feel?
How do you trust your helpers and those around you when those tired words about being manipulative and attention seeking are still commonly used in the worst of all senses?
And really that sad roll call explains everything to me, why do some of us smoke and drink and sit watching tele? Why do we not comply and not conform? and why do we do nothing much at all and get progressively more unfit and progressively more unhealthy?
There are a host of reasons not least of them being the medication that is there to help us and the lack of schemes to address our health such as yearly MOT’s and the lack of knowledge of those that are there to help us but key to me is the reality that for many of us mental illness and all that accompanies it can signify despair and loneliness,
it signifies poor housing and little food, it is where the hope we maybe had as children is wiped off of our faces and we shake our heads at the way life and our dreams have turned out.
And if you feel this way and if you feel alienated and feel that society not only doesn’t care for you but actively dislikes you then it is no wonder that you do not always have the resources and the resilience to make life a better, happier, brighter place.
And so when a well meaning health professional suggests cutting down on the drink or taking some exercise it can feel just too much, there can be that bit I mentioned earlier about the African men with AIDS, a sort of what’s the point? reaction, a sort of
‘Of course I should but why bother when my only pleasure is a drink in the evening and a fag with my coffee in the morning? Why would I be worth looking after and preserving?’
I fear that for some of us our self- image and our identity actively stops us trying to be healthy, it really is too much for us and however much people preach responsibility and control at us, this will have little impact if we have no reason, no sense of our own self- worth to encourage us to take that active role in our health and wellbeing.
Which leads me to another thing that that person said, I asked her what could be done in Africa where so many young men die of AIDS when they do not need to and she said it is no use well-meaning people telling people what to do, what is needed is for people to listen to them, to understand them, because unless you are that young man who is dying, you are unlikely to know just what it is you may be feeling or wishing for and therefore unlikely to know how to help.
And of course the same applies here, we need to be listened to, and that means so much more than giving us an opportunity to express ourselves, it means really trying to understand what we are saying and why we are saying it even when it doesn’t initially make sense to you and it means throwing away the cloak of expertise and judgement which can stop enquiry and really finding out about our world and how we inhabit that world.
A classic example in Scotland would be the acute wards. I haven’t been to a hospital where people have said there is too much to do, I have been to many places where patients say they are bored out of their minds that there is nothing to do, nothing to brighten the day, that the stodge of mealtimes is the highlight of the day and yet ask any nurse and they will say there are indeed things to do, that they do try to encourage people to take part in activities and that is also true.
But, If we have a group of people saying they want things to do and another group of people saying there are things to do but that we lack the motivation and the energy to do anything then of course we need to listen. We need people to find out what it is that would actually get us involved and that means a lot more than just listening to the words of someone like me from a platform on a stage such as this.
Listening means something profound, it is a sharing and a learning and melding of different perspectives and different experiences and beliefs and of course varied levels of expertise. If done well it is something that is done with respect and honesty and with understanding coming at the heart of it.
When people listen and assumptions about each other are left aside we get to the point where we can reach powerful partnerships; if I can quote consultant psychiatrist and associate Professor Peter Aitken it might make more sense:
‘The physician ought to be open to biological, psychological and sociological explanations for the symptoms, whatever they are, and the patient ought to be able to trust that no matter how they tell their story, biological, psychological and social aspects will be explored.
If both parties are engaged, trust one and other, and have the bio-psycho-social model agreed between them, then symptoms, physical and mental can be explored for biological, psychological and social explanation.
This is incredibly enriching if a physical pain needs to be addressed by psychotherapy. Equally depression and fatigue may need to be treated by chemotherapy for the underlying cancer.’
Well, moving on from that point to the next one:
The other person I spoke to at Achmelvich on my weekend is Polish. When we first talked she seemed angry, she said the system is so bad that we need a revolution, we need to completely overhaul everything, we need to stop thinking that not conforming is a sign of illness, we need, we need and then she stopped and said we do not need revolutions because coming from a country like hers she knows the consequence of revolution but we do need a revolution in thinking.
And I completely agree with her, the words we started to use were about compassion, they were about love and belonging or being cared for.
And that shocks me, it shocks me to think that a system , a multibillion pound system that employs thousands of people does not understand that basic message and needs reminded that when life is at its very worst, When every day is a struggle you do not need to be given yet another workbook on stress management, you need to feel held in warmth, you need to feel treasured and believed in, you need that human connection that makes you think there is some point to be being alive, some point to one day taking the first move along the being responsible route.
And when you think of that basic necessity which we all know about, when you fell down and skinned your knee as a child your mum kissed it better, when a rescue dog is being looked after it needs, first of all, to learn to trust the very species that has harmed it so immeasurably ,when an entire section of our community is set aside it needs the people that have rejected it to reach out and to apologise and to try to do better rather than telling that community that it is all its own fault and that if it just retrained, took the meds and looked for work life would be better.
And before I finish with a final bit focusing on rights, that, to me is the answer, if we feel a sense of belonging and acceptance, if we are valued and treasured and cared for and can share our experiences and our food and our stories, if there are places we can go and be with our own and if there are places in the wider community where we know we will be welcome rather than having to carve out our own acceptance then of course we can begin to think of ourselves in a new and more positive light. And then the ideals of self- management or recovery and of autonomy can flourish in a healthy way.
And for that we need to look at rights properly. Many years ago the dreadful discrimination that aboriginal communities faced, the terrible alienation and the assumptions of superiority by the colonisers were quickly understood to be one of the key reasons they had such awful health inequalities, it was quickly understood as a key human rights issue; we need to make our community’s health the same human rights issue. The same thing where we demand and expect a response to this basic injustice.
We can start with discrimination. The right not to be discriminated against underlies almost all human rights legislation. We need to look at stigma, we need to look at our own self stigma, we need to look at what expertise really is and to work out when we are being given valid and helpful therapy and advice and when we are being subject to the views and prejudices of other people who, whether they be politicians or doctors, radical social workers or user activists have decided they know what is best for us and have stopped listening to our real live living world and our own interpretation of that world.
In other words we need to be aware of the power so many of us have over each other and how much damage we can do if we do not acknowledge that power or examine how we act when we have power over others.
We need to look at the basics of this discrimination – parity of esteem has quickly become a buzz word in other words, the need for fairness in spending on mental health and physical health – at least in England we have heard commitments to do something about this –I haven’t heard this so far in Scotland.
We need to look at the disproportionate effect of welfare reform on people with mental health problems and recognise that when a person is sanctioned because she cannot make an appointment, because life is just absolutely awful and nothing gets done properly or on time anymore that this is discrimination just as it is when people get discharged from mental health teams and psychology departments because they are too distressed and ill to actually get to appointments . All of this discrimination inevitably leads to poor physical health.
And we need to remember that the bedrock of much human rights legislation is about participation, that includes listening to people like me and actually hearing us but it also means listening to those that struggle to speak, it means resourcing advocacy groups so that they can reach out to those that struggle to speak or are not heard and it means listening somehow to those challenging opinions and the angry opinions too in their own setting because we cannot all speak softly and reasonably but still we need some sort of forum to express that anger safely for us and those around us and to have it heard in some way.
And we need the basics of the basics; that encouragement and that belief in us that actually allows is to start to consider what might help us and what we want rather than just sitting waiting for life to pass us by.
And lastly we need to remember we have a right to the best health we can get; we have a right to life. The sad and tragic reality is that too many of the members of our community do not have that right, because of the way society acts, because of our illness, because of prejudice, because of exclusion ,because of all the numerous inequalities, we die earlier, much earlier than the rest of the population. Sometimes we die even when we are begging for help, we reach out of our despair and say;
‘Please, Please, help me!’
and we are turned away with the inevitable consequences and sometimes because we are so lost, so alone, we do not have love, we do not have friends and at that, the point of health becomes meaningless; again with inevitable consequences.
And for a conclusion – I had a lovely time in Achmelvich – I am, as I write, sitting in a train in the sunshine feeling fresh and energetic. I have a serious illness or so people tell me, maybe I really do, after all I got PIP without even having to see a doctor and yet I have people who believe in me, people who value me, I have a surfeit of cuddles and kisses, I have work, I have money, so, of course I have the motivation to look after myself.
In many ways I have the ideal life and I certainly don’t want to lose it. It should not be rare individuals like me who can glow with that privilege – people should not think that the support I get is unusual, whether that be from friends and family or professionals, the welfare state, society, the support we get should be something we take for granted – something we know of as our right.
Thank you.
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