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 gave a couple of talks on the second day, read about that here.
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 HugoI am so glad I came.
I gave a couple of talks on the second day, read about that here.
Hi Sarah,
ReplyDeleteone thought occurs when reading your recount of the talks - an audio recording would be handy.
Hi Stephen,
DeleteI agree! Some conferences are able to record and offer them, this one did not. But, most of the speakers have websites, DVD's of their talks, books they've written etc so you can get hold of material about them. One of the conferences about VH in Perth was able to offer a really inexpensive DVD package of their speakers if you are interested, you can find it here:
http://www.rfwa.org.au/index.php?page=shop.product_details&product_id=1&category_id=2&vmcchk=1&option=com_virtuemart&Itemid=28
There's also more links and info about Hearing Voices on my page with that title:
http://sarahkreece.blogspot.com.au/2011/09/hearing-voices.html
I hope that's useful.
I too was at the conference. I am a nurse studying my masters in mental health nursing. I work in a drug and alcohol recovery therapeutic community and also with the local Aboriginal community. I was blown away by the conference. The generosity of spirit, the courageous speakers and the willingness to share their lived experience in order to help others was amazing. I wished I could have bottled the essence and diffused it through the mental health, drug and alcohol and justice systems. However there is hope, the recovery model is a living breathing entity, made more vibrant by the courage of voice hearers who are showing that it is possible to recover and go on to live amazing lives !!! Much gratitude, courageous ones.
ReplyDeleteHi Cindy! It was an incredible conference wasn't it. :) I'm very excited by the work being done by voice hearers to embrace the diversity of ways people understand and experience their lives. The recovery model has some awesome values that I really believe in. Thanks for your comment! :)
DeleteHey Sarah, I finally caught up with this post and I love your description of Lewis being delightfully eccentric as I got that impression too. It was good reading this now as it was a memory jolt back to almost a year ago. Roll on 3rd week of November, 2013 for the World Congress on Hearing Voices in Melbourne
ReplyDeleteCouldn't agree more Shelley, couldn't agree more :)
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