How to communicate the experience of the Voice Hearer (VH) conference? I’m very aware of how privileged I am to have been there – abstracts accepted and fees waived by the conference organisers, transport costs to be refunded and support from my Supervisor at Mifsa, free meals and accommodation offered by a friend in Melbourne… without that wonderful constellation of generosity I could not have attended. I still owe money for the vet and the dentist and will need further services of both over the next month.
I so wish I could have taken with me all the people in our VH hearer group Sound Minds – to say to them, we are not a minority, we are not just a wonderful little group, we are part of a whole movement! All around the world people like us meet up and build groups and write training and talk about the future and how to make it better. One of the speakers said that now we have realised that many people hear voices, who do not have a mental illness and are not distressed by them – we need to try and learn from them to help the people who experience abusive voices and are suffering because of them.
I’ve been through so many emotions in the last few days. It’s been incredible, overwhelming, distressing, exhilarating, peaceful, beautiful, painful, moving.
This was the first conference I have spoken at that was a consumer-run event and the atmosphere was distinctly different to the more corporate forums run by and primarily for mental health professionals. In some ways it was easier to speak and share my own personal story in this context. That sense of being a bug under a microscope with the dissecting tools hovering closer was less pronounced.
Eleanor Longden gave a long, powerful talk about her experiences as trauma developed into psychosis which was stripped of all context, meaning and therefore any hope for recovery by the ‘support’ she was given in the Mental Health services.
People talk in terms of how many years lost, how many years locked away, numbed, medicated, and mindblasted. The sense of grief and fury is palpable.
Eleanor is an incredibly powerful and moving speaker, she has learned the clinical terminology (is in fact completing a Masters degree in Psychology) in order to speak on equal terms in the same language as the clinicians who so disempowered her. She uses their tools of reason and science to debunk their methodologies and cry foul when cruelty and sterility are passed off as evidence based practices. She shows slides of widespread brain changes evident for someone experiencing psychosis, and those experienced by people who have been chronically traumatized. They are the same.
She shows a scale of characteristics at percentages in the general population. The percentage of people who hear voices is higher than those who are dyslexic, vegetarian, left handed, have red hair, heart disease, stammer, have a PhD, or are bisexual. This is a massive percentage of our population who are at risk of receiving a psychiatric diagnosis of psychosis if they let a clinician know of their experience. But only distressed voice hearers come to the attention of the psychiatric services as a general rule, leading to a massive exposure bias for clinicians.
She is hard hitting about her own experiences, I feel like she is trying to move audiences accustomed to disconnecting from pain and distancing from human connection – the experiences of a distressed person with a mental illness whose condition is treated as an entirely inexplicable and biological phenomenon. She speaks quickly and lays emphasis on her words, they strip me of my own defences against pain and I struggle to bear her talk without sobbing. She talks about the anguish and loss for people “who have been made to believe that silence will save them”. At the end she is given tremendous applause and disappears looking pale and shaken. I want to reach out and make contact but in this situation I am only audience, a stranger who wants to tell her that what she has done is worthwhile and what she has given us is generous and superb, but who does not know her and cannot comfort her.
I think of getting a standing ovation and a million hugs following my talk in Melbourne at the Peer Work conference in 2011, how so much enthusiasm and physical contact blew all my fuses and immediately sent me into massive dissociation. How much I appreciated such incredible support but how overwhelming it all was. Hiding in the toilets until the crowd moved on to the next talk. I don’t follow Eleanor.
Dr Lewis Mehl-Madrona talks about Narrative Therapy with voices, shares slides of his people’s, his mothers and father’s Native American peoples, their traditions and healing practices. He is so warm, so mild mannered and delightfully eccentric it is difficult to believe that such a unique and individual personality survived the training to become a psychiatrist. His workshop on the second day is full of powerful psychodrama where strangers act out the voices of a brave voice hearer. The feel in the room is electric. I imagine what this would be like for me, to see my own internal world on a stage, acted by strangers. I feel naked, liberated, terrified, breathless, hopeful. A worker asks a question: how do you keep participants safe? What if they are triggered by the exercise? He seems bemused by the assumption of danger, the concern about risk, about actually doing anything that may have power and impact. (So much better to offer budgeting and simple home cooking skills) He says, we used to be afraid of talking about suicide, we thought it would hurt people. Now we talk about suicide and the suicide rates have gone down. It is the same with voices. I wish I could hear more, could sit for days and soak up this approach. I take down the details of a group in Victoria who offer training in Narrative Therapy.
Ron Coleman talks about the future, about making things better, spending less time blaming and more doing. He gives a stirring speech about citizenship and personal power. He talks about taking power, that power cannot be given, that it is impossible to empower another person. At times I feel like this is a call to war. I’m uncomfortable with this. He talks about his relief to see younger people taking up the challenge of caring for and about the Voice Hearer movement. He says “it makes no sense to talk about evidence based practice in a discipline where we do not have evidence based diseases”. He tells us that 25 years ago having a conference of this size and a movement of this strength was inconceivable. He weeps when he tells us that. I cry too. I think of Voice Hearers like him losing years and decades in psychiatric hospitals and I cry. I think of my own Dissociative Initiative and how we have so little voice, so few rights or recognition and such a fledgling community and I cry. He leaves the stage and goes away to collect himself. I run after him but he’s gone. Later he comes back and we all celebrate what has been done so far, the difference that is being made, voices that are being heard.
On the bags we are given for the conference are the words:
Not being heard is no reason for silence. -Victor Hugo
I am so glad I came.
I gave a couple of talks on the second day, read about those here.