Schizophrenia, inequalities, the law and our rights

Schizophrenia, inequalities, the law and our rights

Scottish Humanist society

Sunday 11 august

Glasgow

Hello everyone

It is lovely to be here today. I am going to talk for a slightly over half an hour and then hope to join in a discussion with you all.

I am going to talk about my experience of schizophrenia, some of the inequalities that apply to people with severe mental illnesses and maybe contrast it with the good fortune I have in my life. I will talk about what it is like to be sectioned, what it is like to have beliefs you know are true and yet know are maybe untrue. I hope to tell you a bit about my life and what I do and about the recent review of mental health legislation of which I was a part and which reported to the Government the year before last.

I will punctuate this with some readings from my memoirs and hope that by doing this I can celebrate some of the wonderful things in my life.

I am not entirely sure where to start. I think I will start off slightly challengingly and talk about some of the statistics that apply to those of us with psychosis, schizophrenia  and related conditions:

I am going to start off with a quote that someone with experience of psychosis gave in the context of relationships:

“Bottom of the totem pole, very lowest of the low, scum of the earth”—this is how she described her position in society.

I must admit I had that said to me when I was first admitted to an asylum over forty years ago. As I walked onto the ward as a young, frightened and distressed man, an older patient came up to me and said

“You are scum here, scum”

And this is reflected in statistics from Australia where 80% of people with a diagnosis of schizophrenia report being lonely.

And this is a quote from the World Health Organisation

‘People with schizophrenia often experience human rights violations both inside mental health institutions and in community settings. Stigma against people with this condition is intense and widespread, causing social exclusion, and impacting their relationships with others, including family and friends. This contributes to discrimination, which in turn can limit access to general health care, education, housing, and employment.’ 

This is reflected by the fact that we tend to die fifteen to twenty years earlier than the general population, often from preventable reasons, and this mortality gap, rather than diminishing, is getting worse.

People with psychosis are nine times higher than the rest of the population to be in the poorest income bracket.

About 90% of those of us with schizophrenia are unemployed and fifty percent of people with a diagnosis of mental illness are on benefits. In addition fifty percent of people with a severe mental illness do not live independently.

Those of us who are homeless are fifteen times more likely to be psychotic and around ten percent of people with schizophrenia find life so hard that we die by suicide.

We are about 5 times more likely than the general population to die of liver disease and respiratory disease. 

About fifteen percent of the general population still smoke while about forty percent of people with a mental illness smoke.

Around fifty percent of those of us with schizophrenia have substance misuse problems and about four percent of us are in prison compared to 1.5 percent of the total population.

However we are far more likely to have been victims of violence than to carry out violent acts and are much more likely to have been the victims of violent crime but this is influenced both by substance misuse and criminality on our part.

I am speaking as I am writing this talk, if that makes sense.

I hadn’t quite realised just how bad most of my peers lives are with schizophrenia. It might be easy to paint a picture of us as the typical destitute person you see roaming the streets of America; denied care and support and likely to end up in prison so, maybe in contrast, I should offer my perspective which is another aspect of reality and maybe helps us from falling into automatic assumptions.

I have had a diagnosis of Schizophrenia since I was 30, having first become psychotic when I was 28 and first admitted to hospital when I was 20 and, yes I have been incredibly lonely and isolated at some times in my life. I also have a substance misuse problem in that I drink too much and have done for decades, it helps me escape from my thoughts but has also caused damage to me physically and made me even more uncommunicative than I normally am.

I have also been subject to criminal assault as a child and an adult and because I struggle to believe that I actually do have schizophrenia and because when I can, I stop taking my medication; I have been treated compulsorily in the community for the last fourteen years. As far as I can understand, if I stopped turning up for my injection every two weeks, eventually the police would be called and I would be taken to hospital where it would be administered forcibly.

And yet an hour ago, I got home from taking the children to Findlaystone estate. They are my partner, Wendy’s, children but I have been a part of their lives for most of it. Today they slept in until late when I took them a breakfast of sausages and then, while workmen were working on fixing the bathroom, we ambled out with Dash the dog. We wandered around looking at flowers and Lamas and trees; had lunch outside a café where the children tried to persuade me that we needed to get another dog before the end of the day. Then the children went on those huge tyre like swings and zip wires. It was an afternoon full of banter and laughter and warmth which we finished off by getting James a very late lunch from Macdonald’s as he hadn’t liked the food in the café. Now we wait on their mum getting into the station, when I will go and pick her up so she can get home in time for a work zoom call and after that, at some stage, I will make everyone tea and maybe, if we have the energy, we will all go out for a walk with the dog later as there is a breeze and sunshine and I know it is likely to rain tomorrow. Tomorrow, the children will hopefully chill, while Wendy and I work.

 There have been times in my life that have been horrendous, but despite some of the thoughts I have, I am delighted by life. I live among a warm and loving family, with friends, things to do, enough money to live on. Sometimes I find it hard to believe I could have been this fortunate.

However, when we talk about stigma and discrimination and inequalities I think we also need to have, as far as is possible; some honesty.

Many of my closest friends have a mental illness and some of them live isolated, grey, lonely lives, devoid of affection, things to look forward to, the ability to heat their house or buy a treat to eat at night and yes some of them are hard to get on with.

They can be difficult people. They are lovely people but sometimes unless you have been a part of this world, their behaviour can be hard to fathom. But you know that phrase:

I wouldn’t treat a dog like that.

Some of them had both childhoods and adulthoods being treated as far less than a dog. I imagine those of you that have rescue dogs, will probably love them to bits but it is likely that those dogs were hard to get on with initially, because they had been treated badly. If, all our lives, we have been treated badly we can look on other people with suspicion and distrust; fail to believe it when we are loved, in fact try as hard as we can to get rejected because that is all we expect and believe we deserve. We can react angrily when threatened by small things, we can be full of fear because life has been fearful and just as a dog, who has been tortured by people, can snap and be wary of other dogs, so can we do similar, when that is our experience too.

So yes, some of us, because we not only have terrible illnesses but also sometimes terrible experiences, can lead difficult lives. The combination of our disability and our environment might mean that we never gained the qualifications we needed to get a good education or job. We can struggle to keep ourselves healthy and struggle to maintain our house or to pay the bills or make friends and sometimes that means it is easier to drink or take drugs and sometimes the pain of it all does mean we get into trouble with the justice system.

But despite that, most people who I know who have a mental illness, are the people I feel comfortable with; feel a sense of comradeship and belonging and the complete absence of having to pretend I am anything other than the person I am.

And just to stereotype further, I feel welcomed and accepted by them and have rarely in the forty years I have had a mental illness or worked in mental health services felt fear from anyone’s behaviour towards me.

Now after speaking for ages I had better let those of you who don’t know, have more of an explanation of what schizophrenia is.

Here is a definition I stole from the Oxford dictionary:

A serious mental condition of a type involving a breakdown in the relation between thought, emotion, and behaviour, leading to faulty perception, inappropriate actions and feelings, withdrawal from reality and personal relationships into fantasy and delusion, and a sense of mental fragmentation.

Well that doesn’t sound too good! So maybe a bit about me.

I don’t know when I first started to struggle and I am unsure about the power of trauma or my childhood on my later life but when I was a young and anxious and angst ridden student, I lost faith in life and any purpose in life.

I thought at the time that it was all about nihilism and existentialism and the copy of Sylvia Plaths poems I carted round with me at university and remember the times I tried to convert the Christian students who were trying to evangelise me, into my own rather confused version of atheism.

But, to be honest, I was not despairing because of my vision of the world, instead I was lonely; scared of being an adult, homesick even though I hated home and utterly confused about life and communication and relationships and just basic living.

I really needed lots of love and lots of hugs but I didn’t get them and instead chose lots of self harm and a suicide attempt that landed me in one of the old asylums which, at the time, were just starting to be closed down.

That however is only one side of the story. I remained suicidal for years and in some ways still am but despite failing the finals of my degree I made friends after that admission, found a cause and a mission when I started to volunteer to help other young people like me who were in a half way house in Sheffield and yes, life was that stereotype I mentioned earlier: I had little money; I slept through the day and stayed up late at night drinking too much and solving the problems of the world with  friends while rolling our cigarettes from the discarded remains of the buts of other ones; mixing with people from a drug rehab project and there is the lie to their story of misery because those people were finding a new life from that misery beyond belief. They, by accident, helped me find some hope in life. With my new found friends, I created one of the first and maybe last drop in centres run by young people with mental health problems for young people with mental health problems.

Sometimes the joy we can feel at the creation and realisation of a vision we just never thought could happen; the sense of wonder at our community of people trying to make a difference and slowly realising that though we thought we did not have any value at all, we did really did make a lasting difference; did bring joy, did bring meaning to ourselves and our friends and our peers. That joy is hard to forget.

That was a long, long, time ago and at the time I was diagnosed with a personality disorder.

When I married, after a lot of travelling and maybe quite a carefree life, my world managed to fall apart.

We had a son, and five months later, I was on a section in hospital, convinced I was so toxic and evil that no one could touch me; sure that I had been taken over by devils and that my thoughts were being changed and altered by the spirits of every bright reflection of the overhead lights or the sea or whatever.

I thought my blood was poisoned and wanted to drain it from my body. I wanted to electrocute myself. I spent some months, behaving bizarrely and very dangerously towards myself.  Those months of psychosis were one of the things that destroyed my marriage.

I am not sure how to describe and maybe I will never know how awful it was, but to sit down in an evening for a drink when our son had gone to sleep, only for me to announce I needed to go to the sacred woods and cut my wrists open and proceed to try to do just that, or some months later when my son was toddling and just starting to talk, for him to get into the habit of walking to the small trap door in our sitting room floor, to point at it and say ‘Daddy’, because for days and days I had been lying four foot below in the rubble below our house, dressed up in oilskins because I thought they would protect me and my family from the evil spirits that besieged me.

It is no wonder that when I regained the world to some extent, my then wife, was exhausted and traumatised and maybe no surprise that she was too ashamed to tell any of her family what we had been going through and it maybe explains why, with me on medication, that she said though she still loved me I was now a stranger to her, that I even smelt different and that under no circumstances should we think of having another child.

This would, among many other reasons, explain why ultimately our marriage failed, especially as even when I was well, I was never too far from these experiences and when I wasn’t, I tended to be in hospital on a section. It may also be one of the reasons that I have not seen my son more than twice in the last fourteen years.

From brief readings of your website I see a wish for the autonomy of people; all people, to be preserved and championed but I wonder how you see autonomy in the presence of mental illness where our judgement is impaired and our capacity to make decisions open to challenge.

The reason I get sectioned is because I am seen to have a mental illness. And my belief that I am causing the end of the world as part of a network of devils and therefore need to kill myself to save those I love and indeed the world, is seen as having judgement that is impaired. I suppose people would say these are not the sort of beliefs others have and not the product of reasoned thought or indeed a reflection of my authentic self. Also, the people who treat me, believe that I will get better with treatment and in a way I do.

Each time I am sectioned; after some weeks or months in hospital, I go home, no longer determined to harm myself or kill myself.

I do not however have good memories of my hospital treatment. I suppose when anyone looks back on weeks when you have been so determined to harm yourself that you have had a person within arms reach of you for 24 hours a day. When you have to shower and go to the toilet in front of nurses, watching your every move. When the light is not allowed off because in the dark or the gloom you may find it easier to harm yourself.

And of course at such times, being desperately unhappy because of the illness and exhausted, because at such times I stop sleeping and may get ideas in my mind about purifying myself by not eating, or reaching nirvana by walking constantly until I reach what I call the light.

It is not nice, it is not nice to spend months without access to nature and fresh air; confined to the sterility of the ward and a small square of the fresh air that you can access in a courtyard at the centre of the ward and it is not nice seeing nurses gather as you approach the door to the ward in case you try to escape, or for that matter when you do manage to escape, being caught and frogmarched back to the ward in front of colleagues and friends.

But although the very thought of the ward makes me cold inside and the sound of the alarm when I now hear it, makes me tense up; it was done to keep me alive and as little damaged as possible. And I am alive and I am very glad I am alive most of the time.

However, I am now sixty one and in some ways I grieve the decades of this. If it is an illness and I really hope it is and that I am not really a devil, then it has been horrific and has not only damaged me but my family, those I love and my friends.

Most of all, despite the drama of the, so called, delusions, I miss that feeling of colour and zest and energy in my life. It may be the illness or depression or it may even be the medication or a mixture of all of these, but I do remember occasions in the past where I used to glow with the joy of life. But now, now I live like I was covered in cobwebs, with my emotions far from me. I really, really, hate that. Most of all I hate that I cannot give to my new family in the way I wish I could.

Now after these sad sentences I think I will talk about how life is not always like this.

I have written two memoirs, one called START and one called Blackbird Singing. They have had good reviews and I am very proud of them.

I got together with Wendy my partner over ten years ago and those years have been wonderful. So here is a reading from START when I was living in Nairn and saw her most weekends before moving to live in Argyll.

START: Raindrop in a Sunbeam

……………………

I like that short chapter and the finding of love and joy when I thought that would never happen again.

Despite the illness I have worked for most of my life, for a time as a very, very, incompetent yacht skipper in the Far East but mainly in the field of mental health where I have worked with my community to try to make our experiences visible.

I used to manage a small charity which had, at its biggest size, only seven staff. We were all about creating voice. We worked in the Highlands and spoke out about everything from employment to hospital to poverty and homelessness in a series of written reports which all had an effect of one sort or another. We worked to challenge stigma, we went into schools with dramas and appeared in arts festivals, we created videos and postcards. We did all sorts of things and spent a lot of time in Europe when we were part of the European Union working with peers in Romania, Catalunya, Poland, the Czeck Republic and Portugal to help increase our voice.

I now work for the Mental Welfare Commission for Scotland which is also about rights.

Along the way I have been given an MBE for services to mental health, been made Joint services user contributor of the year by the Royal College of Psychiatrists and give the Andy Lawless Award for changing attitudes to mental health. I have been a part of every review of our mental health legislation since 1998 and have spoken at the United Nations Committee against torture and so on.

I have enjoyed this but am lately realising it wasn’t as important as I thought it was.

I have been talking for a long time now and am going to slowly wind down by talking about the legislation that applies to us and then natter for a bit about how much I treasure life nowadays.

First of all another reading from START about detention.

START: All in How We See IT

…………….

Those were some of my views on being sectioned.

Late in 2022 the Scottish Review of Mental Health Legislation chaired by Lord Scott reported to the Scottish Government. I was joint vice chair of this review and led on the reducing coercion workstream and played a part in our social cultural and economic rights workstream as well as the capacity and supported decision making workstream.

Most current mental health legislation worldwide is about those times when we intervene against someone’s will. The aim of that is to keep people alive but many people say such interventions are barbaric and should be stopped, including the United Nations Committee for Disabled people though, maybe not the convention they are guided by.

In our conclusions to the review we still thought coercive treatment needs to continue; we don’t want people to die because they are so ill that they cannot accept help, equally we have many ideas about how we can reduce the need for that compulsion and have suggested changes to legislation which if they are ever implemented will have far reaching consequences.

This would involve a shift from coercion to a concentration on our human rights,  which I hope will now be more understandable, now that I have described some of the inequalities we face.

In very, very, very abbreviated form and I mean extremely abbreviated as our final report was 1000 pages long we think:

Anyone with a mental disability including illnesses such as mine should have a right to human rights enablement in all their treatment. This means that in future we would be able to legally challenge the inequalities we all experience and which all impact on our mental health. So issues like our housing, employment, health care, income and so on will become issues we can pursue legally. By having basic rights to such things as health, citizenship and housing and so on will, we hope, ultimately lead to a better quality of life for so many people with a mental illness or learning disability or autism or dementia.

This should be made more possible with the progression of the Scottish Human Rights  bill into domestic law here.

This would not just apply to those of us who are being treated against our will but to anyone with a mental disability. If compulsory treatment is likely to happen then we would need to go through an autonomous decision making test to see if the decisions we are making are our authentic decisions and reflect our genuine will and preference and as part of that we would also have a right to support in making these decisions so they do reflect our will and preference, it would only be when people agreed that the decisions we are making do not reflect our true wishes and that they are damaging us or other people that our autonomy could be restricted so a shift from having legislation which is about other people acting on their view of our best interests when we can no longer look after ourselves to legislation that as far as possible recognises the fact they we are citizens too and as far as possible should be supported to act as autonomous individuals with the same agency as other people – this is  a slightly optimistic view in my opinion – there are times that can last for decades where people like me cannot act as others do and this could lead, if we were not protected, to the death of people like me but at the same time my ability to make most decisions about my life are usually much the same as anyone elses. In combination with having access to the whole range of social economic and cultural rights that apply to us and others then maybe one day the sad lives I described earlier will not be quite so bad.

Callum wanted me to do another reading from START so I will give this now before my final couple of minutes.

…….

I have been arrogant for much of my life. I have devoted it to helping my peers speak out and for us to live in a better and more just world but when I look at the voice of my community – it is less than it used to be and whether we have had an effect is debatable.

As far as I can see the services we get now are more pressured and more restrictive and more controlling and judgemental than we have had in some decades and maybe that is a key lesson for me.

Influencing policy, speaking with Ministers for Health or addressing cross parliamentary committees or whatever we do – we have been listened to but to be honest there really is no clear answer to what would really make a difference for us and though making a community visible and getting involved in endless debates about our place in society is maybe, now I think about it, far less important than my memories after a conversation with a friend who I used to work with when I worked in the Highlands. She was telling me about a journey to the West Coast and a meeting in a village hall near Poolewe. She had no recollection of the meeting just the memory of how beautiful the world was when we came out of the hall where the land had been made wonderful with falling snow. These are maybe the differences we make. I think the difference I have made has really been in drinking coffee with people, listening to them, having excited conversations about this and that, or hearing them when they say they have drawn pictures and they have been exhibited or spoken in public or eaten in other peoples company for the first time in years and that this has made a fundamental difference in their lives.

To me that is so important; the little things that are actually the really important things.

I see that in my family life too. Before I met Wendy, I quite liked it when people admired me when I talked about sailing across the Atlantic with no engine on our yacht and no electricity and few navigational aids, or when I walked into a minefield in Israel or when I camped in the desert on Plage Blanche in Morocco in a sand storm when out tent ripped apart or when, as a young boy, I climbed to such a standard that when I was on the crag, I would often have a crowd of twenty or thirty adults watching me.

I think Wendy found such fake humble boasting quite cringe making and now I agree wholeheartedly. I have learnt that the drama of such things is insignificant compared to hugging wee Louie good night and telling her I love her too when she says she loves me, or bringing James food I think he will actually eat, up to his room when he is gaming. Or getting Wendy coffee every morning and so consistently that after nine years living together in the same house, she still doesn’t know how to work the coffee machine thing or giving her lifts all over the place because she doesn’t drive or just doing the shopping cleaning and cooking or maybe learning from her yet again that even if I know I am right in an argument there really is no need to prove it or to batter someone with my words to show them how mistaken they are with what they say.

It is about learning how to appreciate the smell of the coconut of gorse or enjoy the wonder of the seals on their rocks with their tails hoisted up in an arc in the air or the joy of making someone smile at Jeans Bothy a mental wellbeing hub I go to. Or phoning my mum every night to witter about almost nothing or visiting a family member who like me, has a mental illness but unlike me, doesn’t have a tendency to drink too much, instead has a tendency to take too much heroin and who despite that is wonderful and like many of us needs not only to learn to allow herself to be loved but also to allow herself to forgive herself.

I like to cook for people, I like to try to understand that a good life is not about activism and change and some weird revolution in thought but taking the children to school in the car, despite my eco ideas because the bus gets so crowded that the whole day starts off wrong when they join the queue for it.

I like knowing I have few answers and that most of my opinions and beliefs could probably be demolished by other people who are cleverer than me and might wish to prove this for some reason and that that doesn’t matter. I like knowing that in the passionate debate about Gaza I know enough to know my opinion is totally uninformed compared to any Palestinian or Israeli and I like the naivety with which I believe in love and kindness and not killing people for an ideal or principle or even for revenge.

I like that my family are currently in the lake district dog sitting  so we can have a holiday in a place we never imagined staying in and that they don’t mind that I have come home early to give this talk and do some work tomorrow and I like that when I pick them up on Tuesday they will probably tease me on the way home and I will realise that I am loved.

That is no a small thing at all but sometimes we overlook it and sometimes we don’t realise that some of the people I mix with everyday do not feel loved, do not expect to be loved and have lost the possibility of daring to dream of that possibility and that is one of the reasons I do the job I do.

I want my peers to feel loved and respected and treasured not only by their family and friends but by the professionals who are there to help them.

Thank you so much for listening to me – it has been a very long talk and I am grateful for your patience.

I am not sure how our discussions will go but if you do have any questions for me do ask anything you want. I can easily not answer if I have no answer or it is too embarrassing. I have some copies of START with me but you can buy both START and Blackbird Singing as an E.Book on Amazon.

I will finish with a short reading just to remind myself how wonderful life can be.

BLACKBIRD SINGING :WENDY: Glenarn Gardens

Thank you.