It has been a delight to take up opportunities to gather in person at various events this year, particularly after the restrictions imposed by the pandemic. There are various networks of like-minded individuals which have grown up around the country, and around the world, who are determined to improve the care of people who have all too frequently been given the familiar labels of psychiatric diagnoses. Sometimes the focus of these groups is to take an ‘activist’ stance, or it may be a particular way of helping people but the unifying factor is that we all know that the traditional bio-medical model of psychiatry is not fit for purpose.
In September, I had a wonderful day at the AD4E live gathering in Pershore, and met allies who I had seen write or maybe I had heard speak on the many virtual meetings. It has also wetted my appetite for the upcoming AD4E festival on November 8th. There are so many sources of inspiration.
Then in early October, I went to ‘Making New Maps’, my second retreat with Compassionate Mental Health. I hadn’t been to Coed Hills Rural Art space before and it was truly beautiful. The centre is run by a community of individuals who live on-site, in a low impact way, grow food and explore creative expression through the arts and a relationship with the environment; it was just the right sort of venue for this gathering.
‘Compassionate Mental Health’ work with a network of people across the UK and internationally to transform mental health services, and radically change the way we talk about and treat ‘mental illness’. Once again, I found myself meeting people who are part of a growing worldwide movement calling for a more holistic approach.
The power of community is so well demonstrated in groups like these, where any status conferred by a job or position in society is left behind and together we can just be ourselves for who we are and not what we do. While there may be a variety of speakers and facilitators, all prepared to share their wisdom at these events, nonetheless, it remains important that there is no ‘them and us’. I was not disappointed that this retreat was no exception, and we were encouraged to eat together and sit together in the common areas.
It was fascinating to find out about the formal research which is looking at the principles of ‘Soteria’ houses and the funding that has made this possible here in the UK. It was also very interesting to meet representatives from PsyCare UK, and to discover that they have over 1000 volunteers all over the country who provide a safe and supportive environment mainly at festivals, so that individuals can navigate through difficult experiences. How inspiring it was to hear some of their stories.
Whenever I attend these sorts of gatherings, I am always impressed when I meet people and/or the families of those who have experienced what is commonly referred to as ‘treatment’ given by the current mental health services. For many former or current patients, it’s not necessary to give all the detail of exactly what has happened, when there is a common agreement that our experiences could have been better.
For many of us, this has led to our desire to withdraw from traditional psychiatric services, and some of us can give testimony to the recovery that followed. But we are mindful that this is not always the case and it is important for everyone at every stage of their lives, to be accepted and cared for, in whatever situation and circumstances they are in right now, in the present moment.
Yet, the purpose of meeting was not to denigrate those working in health services – not at all. As it happens, there were some very dedicated NHS staff at the Coed Hills retreat, who were also passionate to improve services for those who seek their help. Instead, there was universal agreement that there are alternative ways to approach our diversity of need.
Hearing stories from other participants always brings gatherings like this alive. So many had been through agonising times either themselves or with their loved ones. The compassion, love and empathy were tangible when people so courageously shared heart-wrenching accounts of their lives and experiences. We were aware too of the tragedies, the bereavements of people who have died too soon because their pain had been unbearable. Our hearts were touched, and we grieved for the loss of close family members to suicide, many of whom were far too young to go. Yet it was so apparent how the families had turned the bitterness of their loss into impassioned desire to help others and to prevent such tragedies from happening to other people, without in any way diminishing the grief that would be with them for as long as they lived.
People were truly inspiring. Courageous in sharing the depths of their despair, not afraid of their vulnerabilities. The collective talent was awesome, many poets, musicians, artists and creatives, all who in their own way were using these gifts to express or enhance the value of their lived experiences.
Someone said they didn’t like the term ‘survivor’ because it conferred another label on us. Perhaps they’re right in that it gives us another reason to be ‘othered’. But such disagreements on the use of language must never divide our united intention, to make life better for those who suffer the unseen pain of deep emotional or mental distress.
Serious violence and violations had been acted out on many of us as children, while others were ignored, bullied and emotionally neglected. our basic needs going unmet. We recognise our own traumas whether society chooses to recognise abuse, neglect or not -and all too often what happened in early life led to the difficulties which plagued us later life. Whichever way those harms chose to manifest hardly mattered. Whether our mood was high or low, or fluctuating in between, whether we were excessively anxious or hallucinating – hearing voices or seeing things which others cannot see – whether we acted out against ourselves or others in our despair. We discover that we are not in fact uniquely flawed, and in some cultures, our experiences may be revered, and we might be sought after as shamans and mystics.
As we sat together, united with our desire to do good as we would have done to ourselves, we also learnt to empower one another and enable the choices so many of us desire in this important realm of caring for our emotional, mental or spiritual needs. I left with renewed ability to respect the sanctity of our spiritual or religious beliefs. knowing that there is no certainty about such things.
This was indeed a gathering of like-minded people who are passionate to improve the care of those who are emotionally or mentally distressed or disturbed, whether they have been given a formal ‘psychiatric diagnosis’ by healthcare professionals or not. There will never be a ‘one size fits all’ approach, just as there never will be a pill that can fix life’s problems. But here we came together to learn and explore different ways in which we can all be empowered to live our best lives with whatever assets and constraints we are carrying at the current time.
Whenever I leave a gathering like this having dipped once more into life’s richness, I reflect on how little I can do as just one person. It is true none of us can do this alone, but together with our new connections, perhaps the dream can move further down the road as we follow new maps to the provision of good, holistic, compassionate care for all who need it.
Mad in the UK hosts blogs by a diverse group of writers. The opinions expressed are the writers’ own.
You are such a talented writer that it is always a pleasure to read your muses.
I will be in Inverness next May. Please let me know of any events that are planned.
Thanks
Eric Setz