IFSW EUROPEAN CONFERENCE AND SOCIAL SERVICES EXPO
Hello
Thank you so much for coming to listen to me and hear some of my stories. I really hope that your conference is going well and continues to go well.
I am going to talk about a number of things some of which might seem trivial and some of which might seem important but mainly I want to give you some idea of my world and the world of people like me.
I work with HUG (action for mental health) which is a group of people with a mental illness who speak out to change the world, to create better services, to challenge stigma, to aim for justice and equality and ways out of the bitter drink that mental illness can be. We have a young person’s element to our work and an older person’s side, we have the voice of parents whose children have been taken into care and the voice of those in prison. We give speeches and we speak with politicians, we appear on the television and create our own films, we go into schools and we write reports of our views and ideas. We do a whole host of things. In the jargon we are known as a collective advocacy group. We are very lucky indeed to have the right to this enshrined in the Scottish Legislation. You can visit a very out of date website (HUG.UK.NET) or our Facebook page HUG (action for mental health) to keep up to date with what we do. Our motivation is I imagine much the same that caused many of you to do the work you do today.
That really is the preamble, the bit that has to create context. I am lucky enough to be a person that people ask to speak about himself and lucky enough to sometimes revel in these requests.
I am 52, I have a diagnosis of schizophrenia, and also experience depression and anxiety. In the past I have had real problems with my drinking. I have been detained under a compulsory community treatment order for the last five and half years and was first sectioned, as we call it, about twenty five years ago.
And what do I want to say? I want to challenge some stereotypes. Some people assume that those of us that are detained for long periods have tragic lives or are angry or are pretty damaged in a whole host of ways. And in some ways we are and have and yet.
And yet, I have almost completed a book on my experience of compulsory treatment and although large stretches of it are bleak and sad indeed, it is really a story of joy and of love and of that strange optimism you may get when your future is uncertain but there is a glimmer of the shine of that joy when you wake in the morning and know that you look forward to the day.
I spend most of my time being astonished that I am in love, that far from being destroyed by the wreckage of my marriage and the loss of contact with my son that I have a new family who have welcomed me into their lives. Every evening I spend about an hour on the phone to Wendy, my love, every weekend we see each other and every other weekend I am privileged enough to spend time with her children who make me think of puppies scrambling over each other. I have a job I love, I have friends, I have a good income, I have my own tiny house.
Those people who care for me would say that it is the compulsory treatment that has given me this lease of life, this joy in being alive, that the slide of medication from my injection every two weeks gives me the quality of life other people would never have had a chance of a couple of decades ago. I am not so sure of this but I do know that even though I spend a lot of time thinking if I could only be brave enough and strong enough I would kill myself that actually this chance to breathe and talk and love and cuddle is the most amazing thing to have ever happened to me.
Six years ago I was in hospital, I had decided I needed to burn myself alive to become a spirit in the sky and to slit my wrists to drain my blood. For weeks I was followed everywhere I went, the light in my room was never turned off, the toilet door was never shut, each time I tried to burn myself with boiling water, or to rip myself with tin cans the nurses tried to stop me, each time I plucked up the courage to run from the ward the alarms would blare and I would be chased down the corridor and up the car park and frog marched back to the ward in front of my friends and acquaintances.
And now I know what I want to tell you. I want to talk of connection and also of otherness and I want to talk of love and compassion and boundaries and rules and regulations and humanity.
It is really humanity I want to talk of.
There was a time when I was released from hospital after all those months of detention, all those months when I was trying to kill myself that I opened the door to my house and walked into the garden and knew I could do what I wanted, could walk where I wanted and eat what I wanted and I felt this huge need to give thanks for being alive. It is such a cliché but at some points colours are brighter and smells stronger and your heart beats lightly.
I thought to myself of the people in hospital, the nursing assistant whose murmurs of comfort when my sobs and the loss of connection with my son flooded out of my room and to the wider ward, tethered me allowed me to feel safe, the nurse who assured me that I would one day be able to talk about the darkness that I cannot talk about, the psychiatrist who by detaining me kept me alive, the speech and language therapist who got me involved in creative writing, the social worker who sought out my medical records of twenty years ago, who came into my life tentatively and quietly and with respect.
And I wanted to go up to all of them, I wanted to give them all a hug, a great big joyous hug to say thank you for keeping me alive when I didn’t want that and I didn’t do that because even when people like you save my life I cannot give thanks except in the most subtle ways. I remember a CPN saying that hugging clients could lead to disciplinary action, I remember that time when a member of staff would give me Reiki and although I do not believe in it, those times lying down with music and softness gave me more peace than any amount of lorazepam did and yet one day that person gave me a hug, not anything more than that communication of humanity and in that action, which someone observed, she was forbidden from working with me again while I was in hospital, because I was vulnerable and people who are vulnerable are subject to abuse if non vulnerable people touch them and that made me very lonely.
There is something incredibly lonely when you are seen as psychotic and when you are a patient, even on a busy noisy ward with lots of skilled staff. Somehow we all start acting out the roles assigned us. I passed my time when I was on special observations writing poetry. I really wanted the people who spent every hour of every day besides me to ask to read it because it expressed how I was feeling and experiencing the ward but they never did. All they did was tell me my lap top would be taken off of me if I wrote about other patients.
Telling the illness story over and over again, is humiliating. Each shift having to confirm that you are psychotic and to have your helpers confirm back to you that you are psychotic and your reality untrue and their intervention needed, is draining and shaming.
And I know my experience will seem trivial to some of you from countries whose ways of working I can only guess at but there is something I resent. On our ward we had a kitchen where we could make tea and coffee and toast and have cereal and it may seem silly but as a fifty year old man I found it hard to be told by a twenty year old that I couldn’t have more toast because we had used too much butter already, I found it annoying that milk was rationed when patients drank too much and that I had to eat at five in the evening when normally I eat much later.
It is these little things that make us act and feel in different ways, the tiny rules that seem to infantilise us, that seem to make us seem as potential enemies and disturbers of systems that need conformity in order to allow it to run smoothly. It is that sense of difference when we are patients, when you stop being a worker or a friend or a father, when you are subject to a host of regulations you are not quite sure how to navigate, when even when you are not detained, the doors to the hospital are locked at night and you walk up and down the corridor wondering why you cannot go out to walk in the night with the breeze and the stars.
It is learning to work out which nurse will stare directly at you when you are going to the toilet and which one will give you the dignity of keeping the door almost shut. Somehow I sometimes want to say – I have sailed over oceans and I have climbed mountains and I have loved and laughed and I have friends and I write and I cook. I have given speeches and I have met royalty and yet you, the people who are meant to care for me have to keep me at an emotional distance, at that safe professional gap between me and you, that to my mind diminishes our joint humanity even though it is understandable.
I don’t quite know how to describe it. Sometimes when I am being an advocacy worker and people do not know that I am also a service user, we will be having an animated conversation and then I let drop that I have a mental illness, that I am a patient, a client, and there is that subtle tightening of face that you almost don’t notice but the conversation becomes more formal and more measured and that sense of otherness is rammed home despite all we would do to connect with each other.
And sometimes I do this too, I assume negative reactions from other people which because I already expect negativity can force my helpers to see me as other and different by the attitude I display and the way that I act.
It is almost traditional when people like me speak of our lives for us to highlight our suffering and the inadequacy of the systems we are a part of. I do think the resourcing of our world and the systems and ways of treating us could be improved but it is important for me to say that I do know the dedication with which people like you tend to approach your work, the frustration you too must face with lack of time and outcomes and targets to achieve that are unachievable and the difficulty there always is to plan and create services that are those we would all want when there is limited time to do so and limited political will to resource such things. And indeed the frustration there must be to hear from people such as me who sometimes present insoluble problems to you and frequently criticize and show little sense of gratitude to you and the work that you do. Sometimes it seems to me that you need a voice as much as we do. But to continue my story:
To be different is a huge part of my life. I used to think living right on the edge of life made me glamorous and interesting but now I would give so much not to feel different and not to worry about people’s reactions to that supposed difference.
I have an overwhelming need to be liked and respected and an equally overwhelming assumption that I won’t be. I speak to my nurses and my psychiatrists and my social workers, and sometimes I speak about the most painful and shameful things, I make myself so terribly vulnerable and all the time I know the people I share these things with are paid to be in my life, are paid to be respectful and caring and so, like many people I assume this is likely to be false. That though I might like one day to sit in a pub or a café, to sit and gossip with them, that when they get home they heave a sigh of relief to be free of the burden of listening to the lives of people like me, that for them it might be that I am the cause of their tiredness and their weariness and then I find myself terribly lonely and terribly sad because I know why people like you need that space, need that distance but it makes me feel inferior and different and other and lost.
It is those tiny, tiny, things; like the time I wrote a long, long, letter to the staff of one of the wards I was on to thank them for all they had done for me, to really let them know how grateful I was yet again, that they had kept me alive and delivered me to a better place and yet I received no reply and none of the staff who I frequently bump into around the hospital mentioned it. And I knew all along that they wouldn’t, that somehow thanking them in that way breached some sort of unspoken protocol but it does make me a wee bit awkward.
It feels silly to be all lovey dovey and make a plea for humanity and compassion to shine through the necessity of the structure of a system that needs standards and protocols to work out how to deal with people like me and it seems silly to say I really would like to spend some time being ridiculous and zany and bouncy when you are rushing from appointment to appointment and wondering how to deal with your paperwork at the end of the day and it feels silly to say sometimes when I am feeling anxious and slightly desperate that when I meet you, I would like to rush up to you and give you a great big hug and say “Thank you so much for seeing me, lets grab some coffee I have so much to tell you, let’s talk and talk.” And to know that for some reason that is inappropriate.
And yet I know why this happens, some things that have happened to me are wrong and should never happen but I want to reflect on this question of roles and also the question of freedom.
I am probably the only person in this room who is not free, who is restricted in what I can do and how I live by the state, under laws that are found in every country. Some of my fellow patients find this completely unacceptable. They say how dare anyone have the arrogance to give themselves the role of deciding on our capacity and this mysterious thing we call mental illness? How can people determine what the right reality is? How can people imprison us when we have done nothing wrong and compel us to take treatment when we resist with our very souls that very treatment?
And yet of course everything is more complex than this, I find the idea of freedom a wee bit confusing, the obligations we have to our families and our neighbours and our culture all restrict how we act and what we do, all that really happens to me is that every two weeks I have to turn up at the hospital for a jag in my arm. I can think of so many other things that irk and annoy me more in my life than that jag and yet sometimes I too hate it.
Sometimes I crave so much to have nothing to do with the system that I have been made a part of, I would like never to speak to a cpn or a psychiatrist again or a mental health officer or an occupational therapist. Sometimes I just want to escape, I want to stop talking of sadness full stop. I want to stop concentrating on failure and impairment and I have no wish to talk of the opposite either I don’t want to concentrate on my assets or on hope. I just want nothing at all to do with any of you, I want to be free from all of this.
And that is where that tenderness and humanity is so important because I know that I need you and you have some sort of obligation to try to keep me well and thriving.
I do not know how my social worker does what she does, when I am in hospital I am lost and although I smile politely, all I want to do is harm myself. I am in a world where I cannot explain myself and which I cannot escape from. I lose grasp of the fact that I am hurting those I care for more than anything. To me the only thing that is important is that I am a devil and that the end to the world is happening and there are people gathered around me assessing me, working out therapies and risk assessments for me.
And I am desperate and hurting and a large part of me wants to be held and comforted and a huge part of me craves oblivion and nothingness and a large part of me hates you all for what you are doing to me and deciding for me.
And freedom at these points is not a possibility and yet is the thing I hate being taken from me. I can’t stand the memory of the piles of magazines at the entrance to my room that the nurses read and read while on watch, I hate that wherever I walked on the ward I had a shadow following me, that if I went near the door to the ward I was summoned away, that I couldn’t go for a walk in the fresh air or feel grass under my feet and at these times I am truly vulnerable because although I hate it all, I do not listen to or exercise my rights, I do not ask for advocates or seek out solicitors and the piles and piles of information my mental health officer gives me about my section and my right to appeal seem meaningless and irrelevant. That is why the safeguards of the mental health act are so desperately important, despite what I may seem to say, freedom is incredibly important and treatment against your will a huge and traumatic step to take.
When people like me, who as you can see, are normally articulate and vibrant lose that articulacy and that sense of right and entitlement and when things are being done to us that we hate more than anything we need to be sure that you do not cloud your minds with assumptions about people such as me.
It is easy to look at us when we are lost and making little sense and assume that we are other and that that otherness merits the sorts of intervention we would never let happen to ourselves or our friends .
It is possible to forget, because we need things like boundaries and professionalism, that people like me are also the people you will walk along a beach with or share a meal with , that to carry on the cliché, we are your husbands and wives, we are your children and your friends, we are your work colleagues and your employees and your bosses. We are in fact you.
When you know that you are taking away freedom from the person you love more than anything and putting us in a system where our individuality is sapped and that you are deciding on courses of action we profoundly disagree with even though you are in awe of our intellect and literacy then we have the chance to get away from my theme of otherness and onto my theme of shared humanity.
I am not your client I am your brother, I am not a drug addict I am your mother, I am not incapacitated I am your boss, I am not mentally ill I am your best friend. You need to remember that each time you take away my freedom, each time you say it is wrong to hug me, each time you decide how much coffee I can drink in the day and at what time I should eat my tea (and sometimes you will need to take such decisions and I will hate them and they in some way will maybe save my life) that I will still be your brother and I will still be angry and hoping that someone somewhere will listen to me and hold me because I am lost and lonely and needing love and humanity when that seems to be remote indeed.
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