Department of social security
Scottish government
14 march 2018
Talk on experiences of mental ill health and the barriers and issues people can face with this.
Graham Morgan (Mental Welfare Commission for Scotland)
Hello everyone
Thank you so much for inviting me along today, you have already heard from Kathleen about the Mental Welfare Commission and the work we both do with it.
Just to remind you; I work with people with direct experience of a mental disorder such as a mental illness, personality disorder, autism, learning disability, dementia or autism.
Before I worked with the Commission I spent about 25 years or more working in the third sector; mainly with people with mental health problems. It is these people, who are often my friends and colleagues, who I will be talking of but to be honest I will mainly be talking about myself.
I hope I can bring to life some of the experiences we go through when we have a mental illness and the issues that can then arise when dealing with agencies such as the DSS that are meant to be there to help at times when we cannot work or struggle to cope and I do apologise to those of you who also have direct experience yourself or who have worked extensively with people with a mental illness. I do not claim to have more expertise or a superior understanding than you but I do have an experience that may be helpful.
Well that was a long and rambling start to my talk.
I am going to go back so far into the mists of time that I hardly remember them.
People first thought I had mental health problems when I was still a school boy. I don’t quite know what I was like at the time. My school report says that I was so lethargic that the teachers sometimes wondered if I was in a coma. I was lonely and terribly shy, I spoke in a whisper, I looked down at the ground and never at people. I did not answer questions in class, in fact my form tutor said he would refuse to let me go on a school trip unless I spoke to my fellow students and proved I could interact with them. I did, I went on the school trip, loved it and then left the school never to see my new friends again. I refused to see the psychologist my teacher wanted to refer me to; I just did not like authority; had an idea that some black suited person would take my brain apart and ruin me.
I am going to make some very basic points and I do hope you can bear with me: at that age, about 17, no one knew I might have a mental illness. I knew nothing about mental illness and didn’t have the slightest idea that there might be something wrong with me but despite all that has happened since, that was probably the worst time of my life. I dreaded going to school and I dreaded going home, speaking coherently; understanding what I was going through or communicating with anyone who had any sort of power over me would have been impossible. I had a very poor relationship with my family and not a single person I could call a friend. Sometimes we can be very vulnerable: we don’t fit in; we are bewildered by the world, we need looked after but haven’t the faintest idea how to get help and such things as forms or interviews are beyond us.
Anyway going forward a few years. I ended up a student, much to my present embarrassment: an angst ridden student, who clutched copies of Sylvia Plath’s poetry to my chest and went around trying to convert born again Christians to the pointlessness of life. Again I had few friends, struggled with ordinary living and with being a student. The only way I fitted in as a student was in the amount of alcohol I drank when I had the chance to. I took an overdose and ended up in one of the old asylums which is a whole other story. After leaving hospital I continued receiving my student grant and then when I stopped being a student ended up on benefits for some years I’m not sure which one but it wasn’t a sickness benefit.
I was lucky that in those years; no one seemed to care if I worked or not and so I did not feel much pressure claiming benefits except from my a family member who wrote some letters, telling me I should get a job and stop scrounging off the state.
I would love to be able to describe what I was like at this time. I left finding a house to live in until two days before the lease on my room finished. I still spoke in a whisper. I did voluntary work but the people I worked with were better for me than I was for them and work and stuff, all that stuff; night was day. I would stay up all night with a flat mate smoking roll ups; using the fag ends to make new foul cigarettes. I spent my time lying on my bed in the day staring into space and occasionally cutting myself. I was still lonely; totally disorganised. I had no money except for a few months when a person I met in hospital helped me drink a small inheritance away. I never spoke to my parents, didn’t trust people; was absolutely useless at budgeting or paying my rent and saw no point in life at all.
There is always a cloud with a silver lining. I met my ex-wife and life became vibrant, colourful, joyous. I ended up as a paid but incompetent yacht skipper in the Far East; I say incompetent – I learnt how to berth a million pound yacht for the first time at the moment I took over the yacht I was to skipper for the next year and a half.
Life really was rosy in those years; the countries we went to, the people we met, the things we did.
Returning home I was confident enough to apply for a job in mental health and community development and get it with no qualifications or training to my name.
A year later I had moved into our first house; our son was born and when he was five months old I decided I was evil and possessed by evil spirits. I thought my blood was infected and that I was poisoning my wife and son who I loved so much. My solution was to get rid of all that evil. It did not really occur to me that this would kill me. I ended up sectioned and in hospital for the next four months where I burnt weird patterns into my hands, refused to touch or be touched by anyone, tried to electrocute myself, saw spirits in every glitter of light around me. It was a truly terrible time.
For the next few years I was in and out of what we call psychosis and ended up diagnosed with schizophrenia. It was the most awful time for my ex-wife; to the extent that she decided that I was such a stranger that I even smelt different to the man she had fallen in love with and married.
I had a superbly accepting workplace – I nearly went onto half pay but never did because I was owed so much time from when I did manage to work.
In fact in the last 22 years since I have been diagnosed with paranoid schizophrenia I have never lost a job or used up all my sick time. But I have such a clear memory of so many people saying 22 years ago that I would be bound to get DLA if I applied for it and this sense of distaste about it; a huge embarrassment that I might be entitled to it and a great shame that I might actually ask for help with my daily life when I already had enough money to manage on.
That would have been when I was twenty eight and now about six admissions to hospital later and having spent the last nine years on a compulsory community treatment order, I have now been on PIP for two years.
I want to explain that: getting PIP was purely finance driven; I had come down to the central belt and was working part time. Initially I needed to travel from near Helensburgh to Edinburgh nearly every day for work- my salary had slumped to £19550, and the fare by rail was £30. I tried to save money by going mainly by bus through to Edinburgh as I had a bus pass, but getting up at quarter to five and not getting home until after 8.30 pm was just too tiring, so I started using as cheap a train route as I could manage; saving myself £10 in the process, but I couldn’t cope.
For some reason, every time I was at the lower level of Central Station I wanted to throw myself on the tracks, until I dreaded going there, felt sick to my stomach at walking down the stairs there; often on the train, when someone sat down away from me, I thought they could see how bad I was and were avoiding me and often when someone looked at me I thought they were reading my thoughts.
It was all getting pretty tiring until a welfare rights worker friend reminded me that I could probably get PIP and then a disabled rail pass that would mean that I could afford the direct train route to Edinburgh on a train I felt safer on.
As usual I thought this was so silly but gradually the idea grew on me, until one day I went to the CAB.
I cannot tell you how embarrassed I felt; I felt such a fraud. I went in to my appointment and spent the first five minutes apologising, saying it was ridiculous of me to even think I could get any benefit and that I was sorry for bothering them. The worker was just so nice, so nice I felt like crying. She assured me I would get PIP, it was just a question of how much.
I was not able to and still couldn’t fill in the forms, they feel dreadful. When she asked me the questions I would say that I was perfectly fine and then she would ask a bit deeper; get some more detail until, although I knew what was on the form was the crystal truth, I found it hard to accept; to think that was me.
I still feel some shame at the fact that I was awarded PIP without even a face to face medical, still feel slightly amused that the thing I thought I was going for which was mobility turned out not to be what I was awarded and I still feel a fraud.
I know that I speak well, dress ok, can more or less cope with life, do a lot of laughing and a lot of working and am already imagining that one of you will ring the DWP to get me investigated despite last week having my section under the mental health act renewed yet again.
So the moral of the tale; we are often not what we seem to be and the barriers and difficulties to getting benefits are huge.
Let me conclude by mentioning basic issues my friends have experienced trying to get benefits.
Some of you will know that terrible time when you wake and the world is grey and you just do not have energy, do not have the will power even to get dressed, where making breakfast seems more than you can bear and even speaking with loving friends inspires a sick fear in your throat. I know so many people who have experiences of depression who, when they are in that place do not have the energy or self confidence to even apply for benefits or look at the brown envelopes and though they know they are important, hide them under the bed.
And anxiety; that cold white hollow of absolute fear, where you cannot face people: where approaching a building with people who will ask you personal questions makes your vision blur, makes you feel sick, makes you struggle to get a word out or to communicate in any meaningful way.
And that liberation of mania where you feel you can do anything; have never been ill. Where you are far too impatient to deal with the bureaucracy of the systems that deal with you, just cannot give it the time and patience, in fact get furious when someone mentions the rent or budgeting or applying for benefits.
And of course all those people I know who like me do not feel they actually have an illness, that in my case, feel like we defraud the state by applying for benefits or in other people’s cases, feel that they are betraying themselves by saying they have an illness they do not think they have. Who will not apply for benefits because of what they would have to admit.
This doesn’t even go along the route of what people feel like when they are paranoid and are called on to account for their actions, feel that the system is out to target them.
Or those who feel so worthless that they cannot bring themselves to think that they deserve help or those who are so chaotic or confused or sleepy because they find sleep a distant and remote concept or who are just divorced from the world, who, if asked to attend an appointment just can’t. They know it is important but they lack the ability to organise themselves, the wherewithal to think how to approach other people.
And lastly all those people who feel shame for their condition, shame for being out of work, shame for their loneliness and incompetence, shame when they see the tele programs that make them out to be benefit cheats and liars.
There is a whole area of reaction which is maybe less to do with mental illness and more to do with culture and upbringing, the anxiety of approaching officialdom, the worry about being assessed, the bamboozlement that a system or a form can inspire in us and the consequent emotional reaction we may have to this.
It is a truly difficult job that you do and I do not know how you manage to keep your spirits up when you do it and it is maybe a hard ask because it will cause you pain, but mental illness is often about all those things we find distasteful and try to avoid. The very experience we go through may have with it a host of impairments that make it almost impossible for us to navigate the system.
It is quite easy to know what to do to make an office accessible for someone who uses a wheelchair but what do you do for someone who cannot look at you? Who cries when you speak to them? What do you do about someone who has been treated so badly as a child that they do all they can to prove to themselves how unlovable they are, beg for love and at the same time act viciously and angrily to those who reach out to help them.
These are some of the hugely difficult situations I am sure that you encounter all the time, usually more prosaic; a person who is just slowed down, blank faced or with a jiggling leg but important none the less.
If I knew the answers to all this I would be a very rich and famous man indeed, but I suppose that I would leave you with the comment that if you can get your head round what many people go through you will be a long way forward and in a much better position to help them get what they are entitled to: in a much better position for them to walk away feeling that they still have some value.
I will leave you with an image of me. I doubt I will be able to attend my review for PIP or whatever it is that will happen next year: it would just be too awkward and humiliating. I know I cope fairly well, I know you will leave thinking I can express myself, articulate myself, handle myself ok. But when I sit down on the train home today I will be wondering how many more people I have infected with evil having given this speech; how much closer I am to bringing a world I love to its end; thinking just how far my evil spreads just by me being alive. I will be wondering if you have known my innermost thoughts while I have been speaking and whether you will also know that yes of course I don’t have schizophrenia, despite what my psychiatrists and CPN’s and mental health officers and friends and relatives tell me and I suppose that is where I really do stop.
I hope I have got you thinking. I am really excited by all the things that might be happening with welfare benefits over the coming years in Scotland and you are the people who will play such a big part in making it a success. Good luck with it and look after yourselves: it must be a hard and difficult job that you are all tasked to do.
Thank you.
(Photo: Dumbarton Town Centre, 11 2020)
For more information on the Mental Welfare Commission visit : https://www.mwcscot.org.uk/
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