From smoke filled church halls to the United Nations and back (but without the smoke this time)

Carn (collaborative action research network)

2021: Raised Voices

From smoke filled church halls to the United Nations and back (but without the smoke this time)

(A talk about the development of the voice of people with lived experience of mental illness.)

[Bio; Graham Morgan MBE has a diagnosis of schizophrenia and has been compulsorily treated for the last 11 years. He first worked alongside his peers to give voice to people with a mental illness in the 1980’s in Sheffield and then moved into working with a collective voice in Lothian, followed by Highland and now works at enhancing the voice of people with lived experience in the Mental Welfare Commission for Scotland. He is currently join vice chair of the Scott review into mental health legislation.]

Graham Morgan. 6 October 2021

Hello everyone;

I want to tell a story about finding my voice in the world of mental health and mental illness. Although people like me have been speaking about our lives and trying to create change for centuries the story I tell mirrors some of the development of what once would have been called the user movement over the last few decades.

Nearly forty years ago, in the smoke filled room of the title of this talk I gave my first ever talk about mental illness. I was very frightened and very hesitant. I had been volunteering in a Half Way House set up to provide accommodation for young people with mental health problems recently discharged from hospital. The organisation was keen to see the residents and people like me playing a bigger part in its running.

I talked about my own recent stay in one of the old Asylums which were increasingly being shut down at the time, I mentioned the young man who attacked one of the nurses and had six other nurses jump on him and how he screamed through the night until he was taken away. I talked of the beds crowded next to each other and the noise at night, the holes in the walls, the broken windows and furniture and how we would gather in a large bare room to ask questions of the doctor who sat in front of all the patients flanked by nurses. I talked of my friend who had learning disabilities and addiction issues who was discharged to homeless accommodation which consisted of two rooms, no furniture, bare floorboards and peoples possessions piled in bin bags.

In those days talking about such things was something I found very hard to do. I remember my voice trembled a lot and I had to take breaks and then at the end, my small band of companions were so kind to me and so complimentary. It opened the door for us to tell our different stories.

The organisation we were with was very encouraging and the workers keen to educate us and open our eyes to injustice – we developed a user group of some sort– but much clearer in my memory is how, as residents and also volunteers, most of whom also had mental health problems, we decided to create a resource for young people with mental health problems run by young people.

We had such dreams; we were going to have a building we could gather in and be with each other. We would have crisis rooms with beds for people who needed space and didn’t want hospital, full disabled access, women’s only days; all these things and we would be run democratically and non hierarchically – so, although we created a constitution and I was the director, it was just for show; we kept such things in a drawer and ignored them.

We didn’t get everything we wanted but we did get a beautiful building and it was run by us and we did get to decide if professionals could come in or not. We called it McMurphy’s after One Flew Over the Cuckoo’s Nest.

At the same time I fell in love; ended up wandering around the world and finally found myself in Edinburgh.

However, while we were setting up McMurphy’s, we were approached by Survivors Speak Out to go to their first ever conference. Some people went and were sort of excited but to be honest we were much more interested in just creating our own services rather than speaking out for change. It seemed pretty meaningless to us: why campaign and talk and talk with officials and policy makers when we were already comfortable with what we were doing? We had bypassed all that, done our own thing and had no desire to speak to officials!

Now forty years later, I sometimes wish I had never got involved in the movement for change and we had just carried on doing it ourselves. We had never heard of the words of peer support or recovery all those years ago or of advocacy or anything like that but that is what we were doing. We didn’t need to be taught it or to go to conference after conference; we just sat in our smoke filled rooms and turned our dreams into something approaching reality.

The bonds we made and the camaraderie and the joy of getting to know each other were lovely. We hand designed our proposals; wandered the streets of Sheffield looking for premises; calculated to the nail, the cost of modernising the premises and got one of the first ever comic relief grants and at the same time found a joy in our lives that had been distant from most of us for quite some time.

When I landed in Edinburgh, I was keen to get involved in the world of mental health again . I think a friend of a friend introduced me to a worker and that worker was in contact with other workers and somehow we ended up in yet another smoke filled room talking about how we could change the world. We would hold our meetings and then go to the pub and have other more enthusiastic meetings but this time fuelled with peanuts and pints of beer.

From that came the group we called Awareness. I really cannot remember anything that we did or if we achieved anything, I know senior people in the council and elsewhere were very excited by what we did; keen to support us and hear from us.

I found membership of such groups did wonders for my health and wellbeing. I am naturally very shy and despite being able to speak at events such as this, struggle hugely with everyday conversation and with socialising. Groups like this where we were all different in some way were a blessing to people like me; quite apart from having the sense that we were making a difference which gave us a sense of value and purpose which so many of us had not had for so long; they were also places of belonging and connection. We made friends there; we had people who encouraged us and wanted to speak with us and were impressed by what we were all getting up to. For people like me, who had failed at university and spent most of the years since, on the dole struggling to find meaning or purpose to what we did, having this was a great boon.

At this point in my life I got my first proper paid job as a yacht skipper in Hong Kong and went away for a couple of years with the person who I ended up married to.

On returning I got involved in Awareness again and was asked to join a group of people who acted as a mental health forum to speak out about key issues in mental health. I went willingly and yet nervously. I remember I understood almost nothing of what they were saying; there were so many acronyms and documents and concepts that I had never heard of but I did understand enough to find out that they hoped to set up an organisation that would create advocacy projects and organisations for people with a mental illness to have a voice.

In a fit of confidence or arrogance, when they asked me to join the group deciding on job descriptions and so on, I decided to resign and to apply for the job myself when it was advertised.

This was a new stage in my life: a real live job, paying taxes, getting wage slips, contributing to a pension! I got married, we moved into our first house of our own and very shortly after that we had a baby.

It was a huge shock, exceptionally exciting but bewildering. I was a community development worker who had never heard of community development. I was a worker who did not understand supervision or keeping to work hours or budgets or anything really. I was also rapidly finding out about relationships, babies and the lack of sleep that comes with babies.

In Scotland, at this time there were only four advocacy workers in the country. There was me rushing around Lothian trying to set up groups and projects and I particularly remember Margaret trying to set up the Royal Edinburgh Patients councilBetween me and our members and new workers we set up the Lothian Users Forum which became the Edinburgh users forum, East Lothian Users group and Midlothian users forum. We worked with Beyond Diagnosis magazine and the Patients Council; helped create a series of user conferences and got involved in the development of a National User voice called the Scottish Users Network and in the development of an organisation that became known as Advocard that exists to this day.

In these days we really were about smoked filled rooms. We rented a tiny room in another organisation’s building which somehow we argued should be exempted from the smoke ban.

The groups and our activism was very different to nowadays; there was a considerable amount of talking and discussion, a great deal of work to make a difference. I don’t know what we did actually achieve. I know there were a huge number of meetings; that we spoke at conferences and people attended committee meetings and we expressed our views on all sorts of things. I remember we made connections with other groups that were finding a voice in other parts of the country.

I even remember marches to somewhere or other to raise issues. I also remember all the work that started to get done to make sure that we had governance structures and constitutions; to make sure that, despite the chaos of our collective attempts to speak out with the huge variety of different people from different backgrounds we had some bedrock to keep us on track.

Those days were full of emotion and full of passion and such a desire to make a difference but in groups of people where power is an issue and status; where the need to have your voice heard can outweigh the need to listen to other people’s voices then the politics that can sour any movement for social justice crept into our work. And also the exhaustion that accompanies the need to prove ourselves as workers or people or activists or fathers, this crept in too, along with the everyday likes and dislikes people develop for each other.

I think I did a good job in Edinburgh but it was also here, when my son was only five months old, that I had the first of what I was later told was a psychotic breakdown and which after two years dipping in and out of reality was turned into a diagnosis of schizophrenia.

Those years had a huge effect on me, I find it hard to look back on them dispassionately. I spent so much time so very tired and so much time so very worried about my family and about my work but I also learnt a massive amount and met some of the most wonderful people.

I finally left for the Highlands, in the romantic way some of us city dwellers do; hoping for something kinder and softer, hoping to find some solace in the lack of pollution and the lack of noise, in the mountains and lochs and streams.

CAPS carried on happily without me and is now a pretty large organisation for an advocacy one, I like seeing what it does and I like encountering its workers and members now that I live close to the central belt of Scotland again. It has individual advocacy workers but it also has that wonderful collective voice. There is the Bame collective, the lgbtq one, the psychosis one and the eating disorder one, there have been films made about all sorts of things; joint work on mad studies with the local university as well as the ‘Oor mad history’ project, regular gathering events and a whole host of arts activities based around mental health and so much more.

It is lovely to see what had become a slightly vulnerable organisation 25 years ago flourishing, organised, efficient, joyous sometimes, vibrant and making such a difference.

In Highland I had the good fortune to be given time to wander the different towns and villages to set up what became HUG action for mental health. I will be honest here and say that these were the best and yet the most exhausting time of my working life and that the degree of commitment I gave to the work and to the people I worked with probably had a very bad effect on my family which ended up with divorce and me alienated from my son who I have now not seen for many, many, years.

I do not know the cause of my repeated admissions to hospital over the years, maybe the pressure of harsh relationships, overwork, too much alcohol, maybe just schizophrenia. I was with HUG for twenty years and in those days we repeated the learning that any movement needs to go through, even though past workers from similar types of cause could probably have sat down with us and told us at the very beginning what we needed to do and learn from and avoid but as long winded as it made it all, I think we needed to find out for ourselves and learn for ourselves. A lot was the practical bedrock stuff, of constitutions, charitable status, budgets, business plans, funding applications, evaluation; the stuff many of our members had no interest in but luckily some did!

However some of it was very simple – it is not much point holding conversations on topics of mutual interest with a wish to create change unless you record them and gather the voices of your group into reports and documents that reflect people’s views and wishes.

We learnt to take notes, to write reports, to get those reports ratified by our members, to distribute them and discuss them with people who could make a difference. There is so much in that; learning facilitation skills; seeking out different communities, learning to write and to speak in public, to negotiate and include our members in the negotiation.

We must have written maybe forty or fifty reports over the years; each one of them made some sort of difference, whether that be by its impact on local or national mental health policy or by its direct effect on services.

We learnt that the power of our voice was often much more important and effective when we were not trying to influence policy makers about services with our reports but when we were speaking to the public and others. We had members speaking on telly, on the radio and in the papers. We held art exhibitions and spoken word performances. We carried out awareness training with so many hundreds of professionals. We prioritised young people and took plays into the Highland schools, reaching thousands of children over the years. We went into childrens classes and held school wellbeing days.

As time went by we tried to reach wider than our traditional membership so we went into the prison, we worked with the LGBTQ community and the Polish Community, we worked with Women whose children had been taken into care, we set up the young people’s campaigning group; SPEAK this is me.

Along the way I became a member of the Millan committee which was reviewing our mental heath legislation and later the Mcmanus review which did more work on it. We became one of the five partner organisations in the original See Me campaign which was our original National anti stigma campaign. We helped with VOX our national voice and were visited by so many groups to make links and partnerships.

We spoke to parliamentary committees and ministers. We worked with the police and faith communities. We created a series of films, one of which became the training material for Scotland’s mental health first aid program. We also met people from abroad and found ourselves working with people in Romania, Catalunya, Poland, the Czech republic, Portugal, Ghana and Nepal. Our members spoke in Finland and Spain and in Australia, Canada and New Zealand.

It was wonderful; writing it down just now makes me remember just how much we did and what an impact we had regionally nationally and internationally but more and more nowadays I remember the good bits in a different way which were about a different sort of impact.

Chris getting the courage to open his front door to us on the west coast after we learnt a special knock he could recognise; that growth of trust and his pleasure in showing us his wonderful artwork.

Maureen finding the courage to eat in company for the first time in ages or Margaret feeling safe sleeping in a room despite knowing there were men also sleeping down the corridor.

The people doing the washing up, the serving of food. The companionable times in the office garden we had built in Inverness. The conversations on our nature walks and the flap jacks and cups of tea. The sharing of our dreams and wishes and the sharing of things we had avoided sharing for many years. That sense of belonging, of connection and mutual support, the cooperation and hope and enthusiasm; the finding of purpose and a new, almost family, to live amongst.

To me that now seems like more of a legacy. More and more often I hear people question what we have achieved over the years – yes our voice is heard in almost every sphere nowadays– but life is still pretty bad for most of us; that dream of forty years ago remains largely unfulfilled despite the increasing power and credibility of our voice and the increasing understanding and acceptance of people like us by the public and others. We still face a host of inequalities, can still feel shame and fear, most of us are still living close to poverty, many of us are so isolated that we forget the last time we saw someone who was not paid to see us.

Despite this some of us, because we found a shared vision and voice managed to flourish in our personal life, we made more friends, got ill less, found life more and more attractive and that sometimes seems more important than anything else.

I am no longer really part of the user movement or whatever we call it. I am a director of SPIRIT Advocacy which hosts HUG, the group I mentioned earlier, and now work with the Mental Welfare Commission for Scotland. I have moved beyond the collective into a life where when I am working I involve people and gather their opinions to influence the Commission, an organisation that thirty years ago I looked on with fear and which is now growing and changing to reflect our experiences and views.

I love working with the Commission but it was not a planned for move, more simply I fell in love with Wendy, my partner, and moved down to Argyll to live with her and her children and I needed a job and jobs for people with a diagnosis of paranoid schizophrenia and who are treated compulsorily are hard to find.

In my personal life I rarely speak as part of a collective, instead I now have the freedom to write my blogs, my books, my articles, to do my tweeting and my instagramming. I do not know what I think about this. I am so glad that I am in a position that I can speak from the heart about the things I believe in and have experienced. But I am not really part of a democratic grass roots voice, I regret that and hanker for the groups I used to work with, those times we had that huge sense of togetherness.

In the title of my talk I mentioned the United Nations. The Commission has given me the opportunity to pass on my experiences and to gather the experiences of people and their opinions from across Scotland. We are a non-departmental public body – funded by Scottish Government but operating independently. . We have a great deal of influence, especially over the legislation that applies to people like me.

I have done loads in the Commission with activities ranging from visiting patients in secure hospitals to giving talks and consulting people on key issues they think we should be looking at. It has been a lovely six years here. Before covid I could be in any part of Scotland for my work; I might be on the ferry to Mull to find out people’s views on care plans or in Arbroath talking about observation levels. I could be in inverness finding out our views on hospital or in Dumfries trying to learn more about seclusion but, as a back drop to it all, I was often finding out from people their opinions on those terrible times when we are detained and life loses its direction and much of its sense.

It has been wonderful gathering people’s views and experiences and compiling them into reports. That activity, as well as my own ongoing personal experience of detention, is one of the reasons I have spoken at the United Nations Committee against Torture in Geneva, and at the Kings College Transnational summit on human rights and the law or at the World Social Work Congress in Dublin and has led to my complete astonishment as being cited as a co-author in some academic journals on mental health law, which I find perplexing as I am not academic at all.

It has also led to the current position I also have as joint vice chair of the Scott Review into all of our mental health legislation which is also looking at the Social Cultural and Economic rights that we so often don’t have.

I am privileged to have had huge opportunities to pass on the experiences of my peers and their views and ideas and even more to have been able to give my own opinions.

In the late eighties of the last century we wanted to change the world and naively and innocently got together to speak out in a world where the voice of people like us was rarely listened to and rarely heard. What we did was new and exciting but it really did mainly exist in the smoke filled rooms where we were comfortable. For me the culmination of that journey if there is any end to it must have been in a long sunlit room in Geneva where banks of simultaneous translators turned my English into languages the other participants could understand and where everything was recorded and noted down.

Now my world is mainly my eerie at the top of the house where I have a desk in the dormer window type thing and look down at our untidy garden while hoping that if I open the window the wasps won’t get in. I make my zoom calls, write my talks and reports and slowly am starting to meet people face to face.

We are not back to smoke filled rooms at all despite the title of the talk and to be honest I gave up smoking nearly twenty years ago but I am back to the need and desire to sit in café’s and go for walks with my peers, to wander the country again finding out what is really important to people.

I had an article published in a magazine very recently entitled Reflections of a disillusioned mental health activist. I am not so much disillusioned as keen to make sure that the debates we have are really based in people’s everyday reality.

Although a huge amount of national and international work is about the views we and others have on compulsory treatment I tend to find that people talk more, when I am invited to their groups about loneliness, about welfare benefits and attitudes towards us, about employment and the situation young people are in, about not being discharged because we are too messed up to keep to appointment times, those sorts of things, the daily aspects of life that happen all the time.

And that is why I say and back to the smoke filled rooms again! What I mean is when we do have people, and I have played a part in it, speaking at a National or International level we need to keep grounded in the everyday reality of our peers; the people we see walking the street that people avoid, the people who stick to their rooms because they have lost their energy or have nowhere to go and no one to see, a mum wondering how she can carry on working and looking after the children when life is just grey, a youngster wishing they had a future to look forward to and wishing they had not had to spend so much time off of school with their mental illness; those sort of people.

A few months ago I went back to a story telling event at CAPS, the organisation I talked about at the beginning of this talk. It was wonderful; the stories could just as easily have been said when I first started speaking out, most of the people speaking had not been born when I started working as an activist, but that sense of camaraderie, joint purpose, the joy of testimony and the power of our story…

– we say it is new but telling our story and seeking a better world – that has been part of humanity for longer than I can possibly imagine – it’s just that those who would have been on the edge of the camp fire or living in hovels at the edge of the village are now hoping and expecting to be included and heard too and actually find they are more and more and that is really pretty wonderful.

(Photo: Bowling Basin - sorry - not a village hall! Oct 2021)