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August 25, 2019 by Andrea Zwicknagl

Open Dialogue and Research from the point of view of someone with lived experience

Talk by Andrea Zwicknagl for the HOPEnDialogue Kickoff Workshop 2nd July 2019, Rome

I am standing here today because – like perhaps many of you – there is a question about Open Dialogue that has been with me for a long time:

WHAT IF?  – What if we had had Open Dialogue?

I would like to share a little of my WHAT IF with you.

 

If we had had Open Dialogue, maybe I would live in a beautiful old castle with a moat around it.

And you wouldn’t see me as I look now, you would see me in the black and white robe of the benedictine nuns!

 

I had my first experience, which qualified for the label “psychotic episode”, at a castle in Northern Germany. After regular visits to the monastery, it was time for a trial period. This meant six weeks of sharing the nitty gritty of everyday life together, in order to examine the decision to enter this monastic community for a lifetime.

 

The Catholic religious world calls it VOCATION.

It didn’t need the critical mind of the PR consultant from the big city of Hamburg – which had been my professional self up to that point – it needed a listening heart. Being called – and listening!

 

I got into a deep inner process: My whole life so far was being refocused  towards this place. My experience was fully integrated into the stories and narratives of Christian spirituality and mysticism. It was in this context that I finally found reconciliation for an old family trauma. The voice of the mother general resounded in my heart and said she had been waiting for me for a long time…! And Holy Mary, whom I had rejected since childhood, was sitting on the edge of my bed in a sisterly way, in order to support me.

 

Looking on from the outside: I didn’t sleep any more, I couldn’t quite keep to the daily routine, I must have expressed myself strangely in some places – people were worried. A visit to the GP followed and the next day I was admitted to the psychiatric clinic in the neighboring city.

 

This is when it happened: Overnight, this promising aspirant had turned into a POTENTIALLY MENTALLY ILL PERSON who was only seeking refuge in the monastery from the evil world outside and thus clearly could not have a true vocation. My whole experience was reinterpreted, classified and seen within new terms of the diagnostic system. The sisters were left alone with this experience in their convent and I was alone with it staying in a strange place.

WHAT IF?

 

WHAT IF we – the nuns and I – had received support on our own ground – literally: within our own four walls of the castle? And contextually, within our respective spiritual framework of interpretation?

WHAT IF together we had understood what I had experienced, what the mystical tradition has to say about it, what other sisters had experienced when they had arrived at this holy place?

WHAT IF I had been able to tell them about the struggles in my family?

 

WHAT IF the psychiatric explanation had only been one among other points of view – in that way a good explanation if it was of benefit but possible to lay aside if not helpful?

 

What would have emerged – from an Open Dialogue?

 

But we are not here to talk about the WHAT IF. – We are here to talk about the WHAT WHEN? – What happens when people get Open Dialogue!

 

Many years have passed and OD has moved out of the Nordic countries and Western Lapland into the world. People in America, Australia, Italy, Poland, Switzerland, Germany, England, even Japan, are trained to offer Open Dialogue. Funding bodies and health ministers will have to be convinced. In order to convince them, there is a need for more research!

 

For little people like us, watching Daniel Mackler’s film and reading Robert Whitaker’s books, hearing people talk about their experience with Open Dialogue was enough. – It was enough to implant the deep WHAT IF question into us. However – funders want “facts” of effectiveness and cost efficiency. That is why we are doing our best to deliver these facts to them.

That is why we started HOPEnDialogue!

 

But what is it that we should investigate?

The Swiss psychologist, psychoanalyst and author Arno Gruen writes in his book THE MADNESS OF NORMALITY, “Schizophrenia is a struggle for integration – which fails because it lacks the strength to live its own truth in a hostile environment.”

 

To be honest – I admire this so-called “schizophrenic”! He lives his truth – no matter what! So far that he would rather break with the shared reality than denying this truth!

 

So what is it that we measure when we measure relapse rates, ability to work, social integration – as is usual and asked for? Do we really grasp the cause of the dilemma and whether the process of integration is possible? Or do we even end up measuring the imposed adaptation to a society which remains in itself addicted to its own madness? Does the truth of the “schizophrenic” become liveable or must it become silent and subordinate – no matter at which price?

 

Which questionnaire will record this? Whom will I really tell what? Does the researcher have the right kind of language and the right kind of ear? Is he able to connect, understand, even provide language, where I have none – without imposing something on me?

 

For the sake of science in general, we know what to do! Randomised, double-blind, placebo controlled studies with an active placebo! Yeah! Let’s do that!

Excuse me?! – This may work if we start from a natural science view of things, which speaks of brain metabolism and its disorders, of unambigious diagnoses and diseases. This may work when drugs are tested for their efficacy.

 

But this is about people – their experience, their stories: It’s about recovery!

But what are the basics of recovery AND of Open Dialogue?

Informed consent! Shared decision making! Freedom of choice!

Does that work at random?! Without providing any reason?!

Ah wait, stop! RANDOMNESS IS THE REASON!

 

Only in this way can we know independently and objectively what works better or worse.

By summarising people and their stories in large clusters, not giving them a choice, treating everyone the same with one method or the other and assigning them based on the principle of randomness – without anyone knowing what he or she is getting. An independent researcher draws lots and thus serves the great scientific community in the best possible way

With randomness!

Randomness is our best friend!

 

I have understood that randomization is the gold standard of today’s psychiatric research.

I have understood that for the critics this is a sticking point in the research on Open Dialogue in Tornio.

I understand that this is what it takes to convince funding bodies and health directors.

That’s what ODDESSI is all about. And that’s good.

In the short run, at least, it is good. So that we get to the WHAT WHEN as quickly as possible.

 

But we know in the depths of our hearts that we are dealing with people and stories and we know about the limits of this way of research. So let us do what is necessary in the short run, but never lose sight of the fact that in the long run we cannot let randomness rule us. We do need other ways!

We must CHANGE THE PARADIGM instead of submitting to it!

 

When I told my boss in Interlaken that I had been asked to join the advisory board for HOPEnDialogue and that perhaps we could be one of the research sites, he said without a second of consideration: “NO! – Research does not serve the people we want to support.”

 

That made me think: WHAT HAD SUPPORTED ME?

 

All I learned from traditional quantitative research results was that one third only experienced one psychotic episode, one third recurring and one third would not recover at all – this was my hope after my first breakdown and my increasing despair after the second, third, fourth, fifth…

 

I don’t know about you, but on my way I’ve learned most from stories and people – more than from numbers.

 

Maybe a rose is a rose, is a rose, is a rose.

But a schizophrenic is not a schizophrenic is not a schizophrenic.

Peter’s great inner connection with the Hells Angels while at home in other worlds, is different from Susan’s alien, which she knows within herself, is different from St. Mary on the edge of my bed.

 

One family member is not like another and one professional does not resemble another.

We are different. And even if traditional quantitative data helps to be able to speak with one united stronger voice, we need qualitative data, too.

I believe that research on Open Dialogue must be the way Open Dialogue is: open and dialogical. POLYPHONE! Embracing the plurality and diversity of voices, ensuring that EVERY voice can be heard!

When we engage in dialogue, we live on stories – not on their translations into a number on a scale!

 

It is good to know that 75% of the Open Dialogue clients have returned to work in Tornio. But for me, as I am personally involved in this subject, there are a thousand questions behind it: What work? Fulfilling work? Were people able to contribute their stories with crisis experiences? Were they supported?

 

We all have and continue to extend our lived experience through Open Dialogue: people at the center of concern, family members, practitioners!

THERE ARE SO MANY THINGS I WOULD LIKE TO KNOW ABOUT THEM!

 

The GP who is sitting in a network meeting for the first time – How does he manage to endure uncertainty? And the family members and friends – What happens when their voices are really heard? What impact does it have – on a the specific situation, but also on their commitment and their desire to tell others about it? What does their empowerment through OD look like?

 

I want SOMEONE to ask these questions. But I would also want to ask questions MYSELF, hear the answers, be allowed to draw conclusions from them. Exploring dialogue in a dialogical way means involving everyone in the process of gaining, analysing and interpreting knowledge .

 

The stories from which I have learned were found on the internet, in books, on the radio or in individual encounters. I still don’t know enough about what is meant by QUALITATIVE, PARTICIPATIVE, USER-LED RESEARCH OR MAD STUDIES to really be able to judge how it is possible to save stories in a scientific way. But I am convinced it is possible!

 

It has taken me over ten years of shame and hiding until I reached these healing and identity-forming encounters. I mean, I wanted to become a nun. I wanted nothing to do with mentally ill people. Because if I was mentally ill, I couldn’t become a nun.

 

In the end, however, this label – no matter what your position is on it – opened up a whole new world for me. A type of work that fulfills me. Friendships around the globe. Meaning and purpose.

Finally a process of integration that became livable – encouraging for me and others!

 

So to end here I would like to share a song with you that has become something of a peer work anthem for me – maybe it could become your Open Dialogue anthem, too?!

 

It speaks of the vocation of the prophet Isaiah. The song begins like this:

 

I, the Lord of sea and sky

I have heard my people cry

All who dwell in dark and sin

My hand will save:

I who made the stars and night

I will make the darkness bright –

Who will bear my light to them?

Whom shall I send?

 

And you can then hear Isaiah’s answer in the chorus:

 

Here I am Lord

Is it I Lord?

I have heard you calling in the night

I will go Lord

If you lead me

I will hold your people in my heart

 

Yes, it’s a scream from the dark. And, yes, I have found my people among those who were hit hard – the comrades and companions on the way of navigating crisis and finding meaning within it. And really, I believe, not only Israel, also they are God’s chosen people.

And – I WILL HOLD THEM IN MY HEART!

 


Andrea Zwicknagl is a peer support worker in Switzerland. She finished the one and half year peer support training “Experienced Involvement“ in Bern 2015 and then started working at the psychiatric services in Interlaken. She was interested in Open Dialogue since seeing Daniel Mackler’s film in 2014, was part of the first one-year training in Switzerland by Volkmar Aderhold and collegues 2015/16 and since then is a regular participant in the international meetings for the treatment of psychosis. She helped spreading the word in the German-speaking area through talks and in-person contacts.

She is part of the Swiss Hearing Voices Network.

Evolving from regular contact with the International Institute for Psychiatric Drug withdrawal and work within the expert committee for Psychiatric Drugs of the German Society for Social Psychiatry, she founded the first trialog specific to the topic of reducing and stopping neuroleptics together with a friend, Christian Burr, in Bern in January 2017.

Starting with the Kickoff meeting in Rome in July 2019, Andrea is a member of the advisory board of the HOPEnDialogue project.

 

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