"Our collective voice; It's value: how it can be done; some of the pitfalls."

Aut. Scot 21

ARGH AND AMASE

23 OCTOBER 2021

"Our collective voice; It's value: how it can be done; some of the pitfalls."

Graham Morgan

Hello everyone

When I was asked to give this talk I felt confident I could rattle something off relatively quickly but now I am less certain. I am meant to be talking about collective advocacy, what it is, its value and its pitfalls.

I imagine some of you know all about this particular piece of jargon and some of you have never heard of it before – I worked in the field of collective advocacy for 25 years and so should know something about it but now I am less sure – I can tell you something of what I and my peers have done and maybe it will appeal to some of you or maybe some of you will use it to create something shaped your own way and dedicated to the needs of your own community and maybe it will just not be that interesting.

First of all to introduce myself. My name is Graham Morgan, As far as I know I am not autistic, I do have a diagnosis of Schizophrenia but really struggle to believe I actually do have this diagnosis. I have been treated for it for about 30 years often compulsorily. I used to work for an organisation called CAPS in Lothian, and then for HUG action for mental health in Highland – where I met many of the members of ARGH who have played a large part in setting up this conference.

I now work for the Mental Welfare Commission for Scotland as an engagement and participation officer – if any of you want to speak later to me about that, do email me at the address provided. It would be great to make contact and if you carry on to further develop your networks and voice please do remember me. I am always keen to hear from different people and communities. I am also Joint Vice Chair of the Scott Review which is looking at the legislation that applies to people like me and you.

I am going to talk about collective advocacy and the world of mental illness and about how we found our voice. I am hoping that some of the things we did and found out will be of interest to your own community.

I think I have felt alien and different to other people for all my life, or at least since I was about ten years old, maybe everyone does. For me feeling separate has not really been a good experience. I am used to a relatively lonely existence and sometimes living in my own company and thoughts is a blessing but I have also always craved connection and belonging.

When many, many, years ago I went to university, I didn’t really cope that well. I was lonely, isolated and angst ridden and not entirely sure why I was there. I had very few friends indeed and a great need to read the poetry of people like Sylvia Plath or the novels of Jean Paul Sartre and to listen to the anger of bands like the Damned or the Skids when I could.

Life spiralled out of control over the months I was there, until life began to seem meaningless and very unpleasant. That was the start of the next four decades of mental ill health and mental illness. To cut the story short; after some months of self- harm and a diagnosis of borderline personality disorder I ended up in one of the old mental asylums after attempting to kill myself.

It is strange that such a bad experience should have been the start of something that changed my life; here I made some friends who seemed as odd and lost as me and met a student nurse who became my first girlfriend.

On discharge, I started speaking about my experience, first of all in a student magazine –

that was good – it was lovely to have my voice heard but I really did not fit in with the very arty people there and so, seldom went along to their office and then as a volunteer at a Half Way House for young people with a mental illness. Here I did fit in, here I found something I could believe in; a cause I could get involved in.

To walk into a room where nearly everyone else had been in hospital or had experience of mental ill health was a liberation. First of all I had something to talk about and I had people who understood and who did not judge. I had found people I could laugh with, go to the pub with, sit up all night solving the problems of the world with. I remember those days with such affection; where we were connected and had created our own tiny community in which we could flourish and blossom and where the bits we got wrong were accepted and did not mark us out as different in any unpleasant way.

We ended up creating and running a drop in centre run by young people for young people with a mental illness. A lovely, lovely, interlude in my life.

Now this wasn’t collective advocacy but it had many the ingredients of what came to be known as collective advocacy. The difference is that what we were doing was not about voice and campaigning and seeking change; it was just getting on and doing what we felt we needed for our friends and companions; for our community.

When I think of Collective advocacy I think the best way of describing it is to tell you how I set up HUG action for mental health in the Highlands and that illustration might be better than some off the cuff definition.

I went to work in the Highlands 25 years ago and one of the first things I got involved with was with a group of people who said that they hated phoning up the Community mental health team when in crisis, only to have to leave a message on the answer phone which might or might not be answered.

I met with them and talked about how we might act on that, which led to a series of meetings across the Highlands. I went to drop in centres and resource centres and hospitals and told some of my story and some of the things that had happened to me that I thought were wrong and shouldn’t have happened.

From that we always ended up in a conversation where we all shared some of our story and our experience and that inevitably led to the conclusion that in one way or another, most of us had experienced injustice as a result of our experience, diagnosis and/or treatment for mental ill health.

The end point of that discussion was about how we could make a difference to our situation and for other people and, of course we said, that on our own, there was probably little we could do or that it could be an uphill struggle that exhausted us, but if we joined together and spoke out together on the issues that affected us we would have more chance of making change happen.

At this point I gathered people’s contact details to form our organisation.

After about six months people were saying

“This is more than enough – we have been talking about speaking out for ages, what are we

going to do about it and when will we start doing something?”

So:

· We contacted workers and groups who were already speaking out.

· We trawled for constitutions and aims and objectives from similar groups

· We worked out structures for how we would gather people’s views and act on them

· We toyed with possible names

And having done this, we invited everyone down for a meeting in Inverness in a smoke filled church hall. We had lunch together, did lots of talking, heard from other organisations, wandered round the room putting post it notes on the bits we saw from elsewhere that we liked and generally got excited.

By the end of the day – we had decided that our group would be called the Highland Users Group and that it would speak out on the issues its members felt were important. We decided that I, as a worker, would go to where people gathered and lived, to find out their opinions and set up groups in different communities and that every so often those of us who could, would come to meet together again to decide on our agenda, our work, what we were saying and who we would say it to.

And that in a nutshell is what collective advocacy is: a sort of trade union or pressure group or something or other where we use our experience and our voice to make a better world for each other.

But it needs organising in order to develop.

We made lots of mistakes to start with –at first I travelled throughout the Highlands talking about and gaining opinions on key issues and came back to write them up until, all of a sudden, we realised I had no accountability

So we set up the HUG round table – where two representatives from each branch of our group in the Highlands – made the decisions.

These decisions could be on whether the latest report I had written was acceptable and represented the views of our members or they could be on what we would seek people’s opinions on in the future, or they could be more organisational – such as who could be a member of HUG? – we quickly decided that if anyone was prepared to say they had experience of mental ill health they could be a member. There were a multitude of other issues we needed to talk through –such things as; how do we decide what our view on a particular issue is.

We decided that we wanted to express the wide variety of opinion our members had rather than to force consensus, so if we were talking about medication we would include the views of those who said that without it they would be dead and those who said it was like some cosh that flattened their life. This proved to be a good solution – we had a wide variety of views and some of those views were very much minority views but people said that when they saw their opinions expressed in a report, even if they were not what everyone else felt, that they still felt a sense of belonging and inclusion.

There were always things to work out; things like our ground rules for behaviour and ways of making people feel welcome or our work plan for the next few months and so on.

We did well to start with and got it right in many ways or, at least in my opinion we did. We were directed as far as possible by our membership; we tried and encouraged the expression of the very wide range of opinions people had. We never said anyone had to think a certain way or accept a specific way of viewing mental illness or disability. We searched out those voices that were not heard and we tried to make our workers both sources of continuity, organisation and safety but at the same time the servants of our membership. It was not the workers voice we sought but the varied voice of our members.

We constantly sought our members views on what the key priorities were for them and tried to act on them.

So, going back twenty five years our members very clearly, at the time, said that the issues of stigma and awareness were the key issues we should be acting on as well as those of young people. We were fortunate in having some incredible workers who could get things done and raise funds and act creatively, so within a few years, we were taking plays round schools which were seen by thousands of young people and which shifted attitudes dramatically. We were going into schools PSE classes and participating in and ultimately running school wellbeing days and, some time after that, shifted from educating and raising the awareness of young people to working with young people who themselves started to make the changes and do the campaigning themselves. For a time we had branches of SPEAK this is me, our young people’s group, in many schools with the young people incredibly active and energised; making such a difference. That had very little to do with me and was more to do with one of our development workers.

Our awareness and anti-stigma work was varied – we did a lot of work with professionals of one sort or another. One moment we could be training welfare rights workers, the next student nurses or doctors or housing staff and with that came a whole raft of learning. We chose to raise awareness by narrative and testimony and deliberately chose to give varied perspectives. We did not preach or instruct instead we hoped that through dialogue, people could reach their own conclusions and it seemed to work; the evaluations were certainly very good. However, as many of you will know, there are risks that can come with speaking publicly; the cost to us personally, the effect it might have on those we speak with, the way a program is facilitated and organised, finding out how our message went down, making sure that a briefing and debriefing occurs and that there are sources of support if late at night we are thinking to ourselves; ‘Why on earth did I say that?’

The same goes even more for our media work where sometimes hundreds of thousands of people heard about us and sometimes heard about us in great detail which, at the time, is sometimes wonderful but a few years later, when we thought we had put a part of our life behind us and a documentary is repeated or we come across a newspaper clipping it can be difficult and almost impossible to back track from. Realising these risks was important while, at the same time, knowing this was a hugely powerful way or raising issues and the profile of people like us.

Easier but sometimes harder to craft and do, have been our arts activities which have ranged from art exhibitions to spoken word performances and much in between.

Needing a great deal of skill which I never ever got near to understanding was the production and filming of videos and animations on a wide range of issues.

I am busy on the nitty gritty of speaking out and changing the world and have left one of the key areas out and that is speaking out to change services and policy. It is hard enough to speak as an individual but even harder to speak on behalf of a community which is full of varied and sometimes conflicting opinions but it can feel wonderful when we do so.

It is sometimes easy to find out what our members think is important and yet bewildering when we reach rarified policy meetings, where our everyday experience seems to get buried in an ambush of acronyms, agenda items and articles of business we have never even heard of, let alone had a chance to form an opinion of with our peers.

In HUG we participated in policy and service operations at a local, regional and national level but many of our members had zero desire to do this. They wanted to express their opinions about what was needed but had no desire to participate in the meetings that might act on these views and even less desire to participate in meetings where many of the agenda items, which could be on anything from risk assessment, to data protection to staff recruitment issues. Such things did not seem relevant or interesting – however we did have some members who were happy to get used to the atmosphere and culture of such meetings and organisations and this made a difference. We mainly concentrated on Highland but also spoke with Ministers for Health, and parliamentary committees and in other forums and where our members did not want to be involved in reams of papers or policies, we passed on their views as workers.

Both workers and members spoke at Regional, National and International conferences and this is where some other considerations come into play.

In the early days of our work, there were few organisations with as high a profile as us and hardly any developed National voice for us, so we were often used for National and International things, despite only having a regional presence. We were one of the five partner organisations of the first incarnation of the See Me anti stigma Campaign; we had members who travelled to Canada or Finland sharing ideas and looking at good practice. We got involved in the European Grundvig program and did a lot of work in Catalunya, Portugal, Czech Republic, Poland and Romania on active citizenship and on having a Voice; with a video being made about us as an example European communities might want to use to set up their own organisations.

We played a part in the development of a lived experience voice in Nepal, Egypt and Ghana. We were represented on both the Millan Committees and the McManus Review which were very influential in the development of the current legislation that applies to us.

From what I can understand there are not many advocacy groups run by and for autistic people across Scotland but you come at a different time to when we first set ourselves up.

The United Nations Convention on the Rights of Disabled Persons was created after we were set up, as many of you know. It says a huge amount about our rights and one of these, is that disabled people and disabled peoples organisations should be at the centre of the decisions being made about their lives.

In the Scott review, which I mentioned earlier, we are busy looking at Collective advocacy and its place in Scotland and as we are in the middle of a consultation and our review has not reported yet, I cannot say what we will say yet but I am pretty sure that we will be calling for a strengthening in law for our right to have a collective voice run by people with a mental illness, or learning disabilities or autistic people.

This could be an ideal moment for you; if the idea of speaking out collectively as a community appeals to you.

In the world of mental illness we have developed piecemeal and now have a National Collective Organisation called VOX, as well as a variety of other independent regional and other groups. In the world of Learning Disability; People First Scotland acts as a voice of people with a learning disability and has its own regional groups spread across the Country. It also has connections to the International organisations of People First. It operates in a different way to the world of mental illness, with a bedrock of supporters and advisors to help members have their voice.

For you; what way you go I have no idea: would you want a national voice to speak on national issues, and how would that be created? From people across Scotland? From members of regional and local groups? Would you like to see a voice for your community grow as and when people wish to create it, coming directly from the grass roots? Would you like to pressure health boards and government to fund a voice for your community or would you worry that would compromise your independence? Would you want ring -fenced independent funding for your community that you choose how it is used in terms of voice? What would you do if you had an advocacy group that got fed up with just speaking out and decided to create its own services alongside that voice and therefore stopped being an independent voice; would that be acceptable?

I have no idea; you may not even want a national or regional voice! You might not want a voice at all; you might go down the route I went when I was young and instead of trying to change the system, do it for yourself; set up your own services and community supports and connections.

I am now winding up my talk and the finale of my talk is a note of caution which I hope is also bound up with enthusiasm.

Collective advocacy, as I have experienced it, is all about identity, expression, belonging, equality, justice. It is a rich and vibrant place to find yourself in but that very web of emotive words can lead to problems.

When you are bitter about the past, or determined to make a difference in the future, or just plain angry about how people view you, then emotion and commitment can run very, very, high. That can be wonderful and lead to lasting change.

But it can also be very dangerous, not in a small sense but in a real dangerous sense; strong opinions and a passion for justice can also lead to the belief that you have the answer, and that others have no rights compared to your views. That in order for you to reach your yearned for goals you do not care what happens to those around you, who disagree with you.

It can lead to small cliques where people are not interested in respect, or inclusion, have no interest in dialogue. It can lead to polarisation where if people are not on side then they are the enemy and a justified target for abuse.

This is something I have witnessed personally in the world of mental health. The harassment of people who did not agree with me partly led to a situation where I became suicidal and had to stop work for a number of months. It led to close friends vowing never to speak out publicly again and descend back into an illness that has now lasted for years.

That is what I mean by the dangers of this sort of thing: the vibrancy and joy of speaking as part of a community where, between us, we seek change and know that that change is part of what we all want can be distorted and destroyed when people are not interested in the views of people who disagree with them and have no respect for the idea that we all have a right to speak. In fact, such people, in their desire to be heard, can take away the rights of countless others to have a voice because they become frightened to contradict or speak up or even attend the meetings where the more outspoken dominate all discussion.

If you do set off in the direction of having a collective voice, do remember the value of partnership and cooperation and discussion. Do remember the need to respect different views and different experiences and remember that being Autistic does not mean you will agree on everything. I am sure many of you will disagree on things as fundamental as how you identify yourself; it is maybe patronising but your comrades voice is just as valid as yours is, even if you disagree.

This is something for a community, not for people who feel they are the only rightful voice of that community. It is also something where we need to recognise that the majority of us probably do not want to speak out and change the world and are maybe sometimes not capable of it; we just want to get on with life but our opinions and experiences and voice however halting or silent they can be are as important as the most inspiring and articulate people who have devoted their lives to creating change.

I wish you luck with what you do. I hate preaching but know I have done. This is my perception of my journey with my peers in my community; a community many people don’t even know they are a part of and who don’t know that I try sometimes to speak on their behalf.

I am not an expert. I do not have the answers. I certainly can’t tell you what to do or recommend what you might do. You are the experts. Many of you already know far more about activism and voice than I ever will do. I hope whatever happens in the future feels worthwhile and joyful and fulfilling for you and your companions.

(Photo Chestnut leaf -Ardmore Oct 2021)