Last week I listened to a group from CAPS Independent Advocacy, who I used to work for in Edinburgh more than a quarter of a century ago, telling their stories on Zoom to create change, increase understanding, and develop some form of connection. It was wonderful, but very alarming, to realise that some of the people who had found the courage to speak out weren’t even born when I first started working there.
I loved their articulacy – the enthusiasm and the beauty of stories imbued with sadness. I heard about lives that had grown into the most touching and moving stories that could educate, explain, and cross bridges.
I always learn something new when I hear someone’s story but this time, far from understanding more about life with a mental illness, I was reminded of the bond of speaking out together – that liberation of knowing you are making a difference and standing alongside your peers. That was wonderful – to find a memory of connection and shared purpose and, of course, that dream of a hope that the future may one day be different.
Storytelling and narrative are often talked about nowadays as a catalyst for change and recovery. Kate Nurser and others highlighted this in their paper: Personal Storytelling in Mental Health Recovery.
I first told my story publicly, 37 years ago in a smoke-filled room in Sheffield, with a group of volunteers and residents of a halfway house for young people. I talked about my stay in one of the old asylums and my subsequent life. Out of the tears and hugs and new stories that accompanied it, came renewed enthusiasm for creating what eventually became McMurphy’s; a drop-in centre for young people run by young people.
It was eight years later when I first started speaking very publicly. It was terrifying! A packed conference in a posh hotel in Edinburgh; me knocking my chair off the back of the stage when I stood up to speak; rushing off when the applause came; to smoke cigarette after cigarette in the hallway before I calmed down and smiled again.
Over the years of telling stories, I saw changes occurring. When I was touring Scotland with the understanding psychosis roadshow I would get to a certain bit, when I talked about my son, and find my eyes would film over and my voice tremble for a few moments until I was able to carry on speaking in a clearer more confident manner. People would come up afterwards and congratulate me. Often they were family members who, with tearful voices, told me that I had given them some hope that their child might also have a good life despite having a diagnosis like mine – of schizophrenia.
Slowly the emotion went and, although I was always keyed up and nervous, I became used to the conference halls – my fear and emotion reduced. I was still always shaky at the end, but I began to wonder what to say to people who came up to me. Sometimes I wanted to just say that I was just lucky; that there was no reason to believe their son would find the motivation to wander the country or have a family or work just because I had had that good fortune.
By the time I was working in the Highlands with an advocacy group called HUG (action for mental health) storytelling and using our lives was integral to nearly all of what we did.
We used our experiences and our stories to work out collectively, how change should occur in everything from detention to employment to the environment. The reports we wrote were illustrated with our experiences and, in many cases, services changed and policy changed, reflecting the voice of our members.
We used our stories to educate the actors and playwrights taking plays around Highland schools. They acted as the bedrock for films and animations that aimed to raise awareness.
Like a minister in a sermon, we would take scraps of our lives and use them to give integrity to our views when in committee meetings, at workshops, and when speaking at conferences or art events.
Finally and most importantly, we used our stories when trying to educate and increase the awareness of health and social care professionals and the public.
We worked together and over many years learnt how to craft our stories and give a breadth and depth to them in the training we provided. We would support each other before and afterwards – we trained together, we debriefed together, and eagerly looked at the evaluation forms after each event which showed that testimony, as we called it, was crucial to what we did.
An evaluation of two years of awareness sessions gave scores of 94% excellent and 6% very good for our testimony, carried out with everyone from prison officers to councillors; student nurses to mental health officers.
It was a wonderful and truly exciting way of creating change and, with support and organisation, was usually an enriching experience for our members.
I would like to stop there. To say: ‘Use our stories. Get us into the open as happens more and more in so many mediums. Let our stories guide your services.’ But when I reflect on my own experience, I have some qualms that might do well to be aired.
My story is crafted. I use different elements to make different points and get across certain messages. I make it interesting, I make it moving but not too moving. I make it graphic but not too graphic. I do not tell people what to think, instead, I tend to give a narrative that will let people reach their own conclusions. I have spoken to support workers in Portree in Skye, welfare rights workers in Dingwall. I have spoken at local, regional, national, and international events, I have even spoken at the United Nations. I have spoken on film, on television, on the radio, and in the papers and always I use my story and the stories of others who are happy for me to use their story. I have written a memoir about my life and received wonderful reviews. I continue to use my story now that I work with the Mental Welfare Commission for Scotland.
I am no longer worried about resurrecting past trauma I might have experienced. I tend to know how to keep my audience safe. I am pretty certain that people won’t be bored and fairly sure we will have a good discussion. I know most people will go away with things to think about and reflect on.
What I am worried about is the process of storytelling and of narrative. In the early years, I think telling my story was in some way, part of the journey of recovery in that it made sense of my life and took away much of the shame and secrecy that used to surround mental illness.
However, I am hugely grateful that when I was in the Highlands we never dreamed of making our stories the classical recovery story, as in we got to a better place in our lives sort of thing. The dangers of such things should be self-evident as, of course, our lives are very rarely rosy and very rarely have wonderful outcomes. What I sometimes worry about for those of us for whom this is almost a career, is the impact of turning our life over and over again into that beautiful creation – a story.
But a story is just that – a story! It has beginnings and endings and usually points and meanings and dramas. Our lives are much more important and vibrant than mere stories. They are not meant to have a plot or a learning point or even a self-imposed direction. I should not start speaking and realise, although I am genuinely talking about my life, I am still only telling a story with a slight scrap of me as a central character who I find distorts my vision of who I really am.
I have created a character that I don’t always feel is actually me, with experiences I have but not all the time and an identity that does not always feel like my identity. An identity I would sometimes like to leave behind – especially on social media.
There is so much more to me than the story of detention and schizophrenia and isolation and discrimination, or even the story of activism or of recovery or turmoil, oppression or, for that matter, liberation.
If I gave an honest and more accurate story, I would spend most of my time talking about today’s walk in the snow with my partner and our daft dog, the minestrone soup we had for lunch, the emails I answered, and the slow breakfast that lazy days off without the children are sometimes composed of. I would not tell a tale that has drama in it and high emotion, that reveals the wonders of the help I get and the pits of when it harms me, in order to make a point and help people learn.
I would not find myself beginning to inhabit that inner thread of illness, casting aside as irrelevant the sound of oystercatchers on the shore, the slow swell of the frozen sea yesterday and the children’s red cheeks, in favour of the last time my CPN could not get the injection right and had to go for help to work out what to do, while my shirt spotted with blood as I waited.
I worry that when we immerse ourselves in a life-long campaign of activism and speaking out, where our illness and treatment story is central to our identity, it seeps into our everyday life and we find ourselves lost in a story we have constructed, which we do not always fit into and from which we sometimes can’t escape.
And yet these stories, these glimpses into real life, are, after all, a sure-fire way of making a difference to the thoughts and attitudes of so many people. I much prefer to learn from real people than PowerPoint slides, but I wonder what we do to those like me, who choose to be the story instead of writing the slide.
Graham Morgan MBE is Joint Vice Chair into the Scott review of the Scottish Mental Health Legislation.