Merinda Epstein - The Chocolate Cake Factor - 'deep dialogue' in practice

Presented to the National Association
Loss and Grief Conference on
5th October 2001

Deep dialogue is not about bringing consumers in under the existing professional discourse it is rather about finding a place where the different and sometimes oppositional (and angry) voices and understandings can be brought together in the spirit of respect, exploration and improved practice.

I’ve been invited here to talk about a concept that we have developed called ‘deep dialogue’. To understand how we have used the term it might be useful for me to give you a little background information about myself.

Language

However, before doing this I would like to talk briefly about language. There are a variety of ways that people who have experienced emotional distress and sort professional help are described. Most of these ways are the preferred language of the professionals rather than the language chosen by the people themselves. In this paper I will use the word ‘consumer’ to describe myself and others who have been labelled as having a mental illness or who seek services to try and ameliorate our mental health. The use of a term has not gone without challenge. It is criticised by many professionals who are uncomfortable with a new language that appears alienating and reductive. It is also criticised by many consumers particularly as it implies our relationship with service providers is centrally located in the market place. Sometimes the preferred term is ‘client’ or ‘patient’ but I don’t use these words much because the medical profession owns one and the other has been colonised (within health) by allied health practitioners. Overseas consumers have chosen a variety of ways of naming themselves; survivors is used in northern America and in Britain and New Zealand the term ‘user’ is often used. Pinches^¹ argues that the word ‘consumer’ is far from perfect but that it is the best one we have available to us at the present time. Wadsworth adds that we’ll know when it needs to be replaced by new language when professionals start to say “my consumer” in the way they comfortably say, “my client” or “my patient”.

Whilst I am briefly mentioning language I would like to point out something else that is happening within the consumer movement in Australia. Some of us are starting to reclaim old derogatory language in the same way that comedians revamped ‘wogs’ and the gay and lesbian movement started to reclaim ‘poofter’ and ‘dyke’ and play with them. Some of us are now starting to describe ourselves as ‘mad’, ‘loonies’ ‘lemons’, and ‘nutcases’. In such ways we are no different from other social movements. At one end of the political landscape there is a vanguard flaunting our mad pride whilst some people, at the other end, are still trying to get the derogatory slurs off their back. Humour is an important part of recovery. It is also an important aspect of political efficacy. Sometimes, others, remain aghast at our determination to own our own lives (and our own language).

Background

Approximately ten years ago something happened and I found myself in the frontline of the march towards ‘loony pride.” This was unintentional. I think I just happened to be in the right place at the right time.

Over the last ten years I have taken my place as a consumer activist. During this time I was asked to represent consumers on the National Community Advisory Group on mental health – a group of consumers and carers who together formed a think take and advisory body to the Federal Minister of Health on issues to do with mental health. I worked on several projects with the Victorian Mental Illness Awareness Council – the peak body for consumers in Victoria. More recently I have relocated to Canberra where I am presently working for the Mental Health Council of Australia. In this last position I have had the opportunity to combine my interest in and lived experience of mental health issues with my interest in and professional background as an educator. I have a particularly strong interest in the education of mental health professionals and the role that consumers can play in this. It is through my belief in the efficacy of consumer driven education initiatives that I have become interested in ‘deep dialogue’ or consumer driven deep conversations between those who work in mental health institutions and those who receive services from them; those who work as therapists and those who receive therapy; those who are trained to provide services and those whose needs have brought them to seek help.

Deep dialogue is based on an understanding that there are multiple realities and many truths and that some of these realities are privileged within the contemporary power structures of society. As active consumers within the system we were intrigued by the fact that we often seemed to be able to swap stories that were very familiar and that these often shared themes of disempowerment. Sharing stories together was important and it was empowering to realise we shared a wisdom that could be called perspective. In 1997 Julie Shaw and I wrote about this thing called consumer perspective:

“It seems useful to think of consumer perspective as being a multi-layered construction. At one level [we] see it as being something which has developed out of a collective consciousness and political solidarity that grew from the consumer/survivor movement. …At the other level is the consumer perspective that comes from the deeply felt and personalised experiences of the individual consumer that can never encompass the voices of all consumers and that can never be adequately represented by anybody else. Maintaining awareness of consumer perspective is a matter… of juggling these different layers and levels – the political, collective awareness with the deeply personal.^²

Often our stories described various processes by which we had experienced being ‘othered ’ – something which involved constructing the recipient of services as essentially different from (and inferior to) those who were providing them. Within the dominant relationships that presently exist the knowledge that comes from the ‘science’ and professional practice wisdom are often treated as the real understandings (sometimes competing with each other) but the knowledge that comes from the lived experience is often neglected or trivialised. This discrepancy is important.

Pink Mugs

It was in the first few months of a new project and I had started conducting interviews with a variety of people. Here I was sitting on the grass with a woman in her twenties. We were both on the grounds of an acute facility. I had purposely not brought over my little tape recorder because I knew just too well that acute hospital settings are places of mistrust and I did not want to add to that. I tried not to take too many notes and the notes I took were always (absolutely always) open to scrutiny by the person I was talking with. With that in mind I never wrote commentary. Everything I wrote down was the closest I could get to the person’s real words.

But this was to be an important interview and one, which was to genuinely influence my future work and attitudes towards research and evaluation.

I was sitting beside this woman on a small hill. It was a nice day. I felt a bit uncomfortable – was I intruding? You know the sort of thing. It felt better when I got out my list of questions. This gave me structure and a role to hide behind. The researcher. Later I was to question my own motives in seeking such reassurance. I asked a few general questions about how she had experienced admission and how she was experiencing her stay. The next question was about the food. It seemed straightforward enough so I asked, “How have you found the food?” – implication – do we need to complain about the food ?

The woman’s reply will remain with me. She was sitting on the grass and I did not notice the mug she was holding in her right hand, which was on the other side of her body from where I was sitting. She pulled the mug up and showed it to me. It was pink and it was plastic. Immediately I could imagine it with a stencil of a teddy glued on the front. She turned it upside down emptying the remaining coffee on to the grass and showed me her name hurriedly scribbled on a piece of tape and taped to the bottom of it.

“Just look at this mug. It makes me feel sick. I am angry-sick. I feel powerless to assert my right to be treated like a grown-up. Outside of this place I am held up as someone with an important and respected … and now? I have been reduced to a b------plastic cup. How am I ever going to get over it …ever recover? If I object, someone will find that this is me ‘acting out’ or ‘attention seeking’ or any number of negative things. It doesn’t matter about the food. I guess I could eat anything if it came to it but how am I going to get over this.

The arguments that were given in favour of the pink mugs have their own validity from a service provider point of view:

But, from a consumer perspective it is much more complex than this. It was the symbolism associated with the pink plastic mugs, which was making this woman sick. It was this sickness that frightened her. It was from this sickness that she was afraid she might never recover.

Because, you see, from a consumer point of view the mugs had other important messages:

There are fundamental and important differences in the understandings of consumers and providers and yet, in most settings, there is very little opportunity for the two groups to exchange these understandings and to learn from each other. It is around these sorts of fundamentals that we have promoted the concept of ‘deep dialogue’. Without this, we believe, apparently harmless acts and artefacts of service will continue to cause deep pain and endanger recovery.

Playing Pretend – another story

Places where you meet ‘your’ therapist are often powerful and the power gets sucked into the bricks and mortar. You have to learn many rules and you try to do this thing called therapy right. Sometimes even the waiting room feels like a test but mostly you don’t tell anybody that. I usually sit in the same chair if I can. If you have class power it is a bit easier. If you’ve experienced the system as a health professional as well as a ‘client’ or ‘patient’ perhaps it is a bit easier again. But, for most of us it is hard.

Two years ago I did some work for the Bouverie Centre in Flemington in Melbourne. I was genuinely surprised how, on my first visit, I was projected straight back into the awful feelings of powerlessness that the physical environment itself dragged up for me. I became nervous and embarrassed and unsure what to do. This was part of an old role as ‘client’ and inconsistent with my new role as ‘consumer activist’. Nonetheless I experienced it for a short time especially on my first few visits.

What amazed me was that this anxiety persisted despite the warm and collegiate welcome I received from staff at Bouverie with whom I was working at the time.

A few years before that I was referred to a psychologist who worked in a big public community practice in Melbourne. I felt intuitively uncomfortable with her theoretical position and her lack of a political analysis. Nonetheless I tried to please her as I had learnt that that was part of my role. Over a period of time I started to feel emotionally unsafe within the relationship and unable to fully articulate why to myself let alone talk about it. The uneven power relationship and the implied insistence that I alone owned all the pathology within the relationship made it very difficult for me to be assertive. So I got angry at my wimpyness and this just escalated things. Dramas happened. I tried to let this person know how bad it was getting for me. I couldn’t make myself heard in her language. She was not there to protect me. I ended up in hospital and I didn’t want anyone to tell her I was there because I was angry and hurt. Of course, they did tell her which further exacerbated my feelings of powerlessness and my belief I was being treated with contempt.

My friends came in around me though. The women in my life created a human shield to protect me. They came to see me in the hospital and then they found various beds in their homes for me to stay so I could be looked after ‘in the community’. They listened to my story. And through them I found the woman whose therapeutic practice I needed. One day she and I will write a joint paper describing what we did and how we explored my distress and grief but for now it is sufficient to say that I found respect, respite from what was happening in my head (and life), a sophisticate political analysis and deep caring.

The point of this story is not to compare two different practitioners and their style but rather to describe what I did next. Because my feelings of selfhood had been misunderstood, deconstructed poorly and because the relationship with my ‘official therapist’ was so disempowering I wanted to end it on my terms not hers. This felt to me like it was crucial for my self esteem. I made a decision that I would not tell her anything about the new therapeutic relationship I was forging in another place. Instead, to her, I made a miraculous recovery. It was pretend. I was really still struggling. But with a lot of help from the new therapist and my support network I was hanging in there. I no longer felt embarrassed or ashamed of my own despair. I did things to build the appearance of resilience. The sessions with her held no meaning for me any more and so I was able to perform wellness very adequately.

Six months later we were renegotiating our contract. “What a long way she has come in the last six months” was what I hoped she was thinking about me. I was absolutely determined that I would not allow myself the indignity of need with this person again. I did my ‘homework’ – easy now because it didn’t matter any more. I reinforced her beliefs for her and agreed a lot. I watched my body language (and the clock!). And I was a good ‘client’. I was in control. Shortly after, we did the closing down relationship stuff. I was a winner at that. It was easy and I felt empowered by the fact that, this time, I did not need her any more. I could be honest about the nonchalance with which I was treating the end of the relationship.

My reason for telling this story is to illustrate that a consumer has (and needs to have) agency in the relationships they construct with professionals. I created what I needed. What I wasn’t able to do and what I really regret is that I wasn’t able to give constructive feedback to the first therapist, but even more importantly, to her profession. Without this input she would, presumably, have gone on thinking that her practice had been at least harmless and possibly useful.

There is also a need to understand the differences in perception between the consumer body of knowledge and the professional body of knowledge. I am well aware that my behaviour within this vignette has a different meaning for me and my consumer cousins than it would have if the professionals involved had known the truth. It is quite likely that I did things that would have fitted neatly into the class of manipulative and duplicitous.

Deep dialogue is about value adding to the reflective processes of professional practitioners. It is, we argue, misguided to believe that true reflection can be attained without input from a consumer perspective. Yet, most commonly, consumers have not been invited into professional development encounters. Deep dialogue is about all of us challenging the taken for granted power relationships and then sitting down at the table together with the unambiguous task of improving professional practices.

Deep Dialogue in Practice

We first started to develop concepts of deep dialogue within an important project funded by the Victorian Health Promotion Foundation during 1993 – 96. This was a three-year consumer evaluation of acute psychiatric hospital practice. It was called the Understanding & Involvement (U&I) Project. Any one who is interested in this project can find it written up in three volumes available from the Mental Illness Awareness Council. A new condensed one-volume monograph written by Dr Yoland Wadsworth, the research consultant for the project, will be published later this year by the Victorian Health Promotion Foundation.

The Collaborative Committee

In the U&I Project we first became interested in deep dialogue through what came to be known at the Collaborative Committee. Our committee was different. In putting together the committee we wanted and needed around us and around the project we deliberately invited people who were vitally interested in consumer participation in service delivery. We did not select people because of their authority or position within the organisation and we did not select consumers who were necessarily representative of a constituency. We said, “we are doing this project, who would like to join us.” Invariably what ended up happening was that we attracted both consumers and staff who had witnessed or experienced things within the culture of acute psychiatric hospital practice that needed to be changed. We described this method of attracting people as ‘organic’. It grew out of the soil of the project.

Secondly, we knew that there would have to be equal numbers of consumers as there were professionals at each meeting. The consumer voice would, we knew, be reduced to tokenism if this was not prioritised.

Instead of taking minutes we taped and transcribed each meeting because we accepted that the meeting itself was a microcosm of what happened in the real life relationships that play themselves out in a psychiatric unit. The taping of the meetings slowed down the thinking and forced all members of the collaborative committee to think about their language, to talk about their relationships with one another and to reflect collaboratively on their practice.

So rather than a Steering Committee or a traditional research committee which would take on a management role for the project we developed as safe a place as possible that would also be a crucible for the fundamental issues that determine acute psychiatric hospital life.

“…discuss the kinds of topics which at present rarely happen. You know when a committee gets into a very rare discussion about fundamental values, philosophy, purpose, and ‘what we’re all here for’… and everyone says, “Gee we never have this kind of discussion, this is really good, why don’t we do this more often?” And then the chairperson calls the meeting back by saying, “ Well I’m afraid we have to get back to the real business of the meeting – the staff’s leave provisions, the auditor’s report, the productivity savings the funder wants, and the quarterly statistics.” ^³

Our meetings operated more as ‘think tank’ -type sessions about deep issues like:

This collaborative committee was a precursor to the more formal deep dialogue we were to develop over the following six years.

Deep Dialogue Forums

Towards the end of the Understanding and Involvement Project (U&I) we opened up the Collaborative Committee to become a collaborative forum. We wanted to test the idea that we could develop a structure that would allow for the deep conversations to continue to take place between consumers and service providers.

We worked hard to maintain the momentum of the deep dialogue initiatives but this was difficult for a number of reasons:

Consumers, myself included, needed to tell and sometimes retell stories of bad practice. For consumers storytelling is a fundamental communication tool. Practitioners on the hand sometimes felt less comfortable with their own stories as they struggled with definitions of professionalism and feelings. It seemed to us that the more consumers needed to tell stories of bad practice the more professionals needed to hear stories of good practice. We were mindful of the fact that these self-chosen practitioners found themselves in the position of hearing and re-hearing stories of bad practice by their colleagues. There were times during the deep dialogue where practitioners felt a need to defend their professional group or where they felt unfairly treated because it was not ‘their’ practice that had caused the offence.

The good news was that the seminars survived for over a year after the end of the U & I project.

“The provision of a ‘space’ and the sustenance of a culture of non-judgemental, non-decision making dialogue – where the spirit of deeper collaboration and respect is maintained whilst traversing the revelation of pain – remains fragile, tentative but continuing.” ^⁵

The Lemon Tree Learning Project

Following on from the Understanding & Involvement (U&I) Project the Lemon Tree Learning Project was funded under the First National Mental Health Strategy. This was an 18-month project funded in 1996 and 1997. This project also significantly developed the concept of deep dialogue. Towards the end of this project a psychologist working in a rehabilitation unit in a large metropolitan psychiatric hospital approached the project team. Together with the psychologist the consumers employed in the Lemon Tree Project developed a more structured version of ‘deep dialogue’. Two facilitators (one male, one female) were employed to help with each of the ten sessions, which would form part of the ongoing dialogue. Four consumers were employed. As part of their understanding of their role they saw themselves as staff educators and the Lemon Tree Project provided the resources to pay them as such. This indeed was to prove to be one of the interesting and challenging aspects of this whole new project. For the four staff from the rehabilitation unit the exercise was seen as a reciprocal sharing of experiences. BUT, there was no way that these politically astute consumers were going to accept this. Because, for them, reciprocity would imply an unsophisticated acceptance of the taken-for-granted power differential between staff and consumers. They were prepared to see themselves as professional educators.

The two psychotherapists who were brought in as facilitators were also in for a shock. These saw themselves as somehow neutral – neither staff nor consumer. Once again, the consumers were unprepared to accept this suggesting that they held power as professionals and therefore they were ‘staff’.

The ten weeks of the project were lively and both staff and consumers reported it was a very useful learning experience. The facilitators also reflected back that they learnt a lot from the exercise which was, at times, quite difficult and confronting. Neither group (staff nor consumer) could remain happily and non-problematically within their own discourse. One of the fcacilitators was moved sufficiently to write a paper describing their learning from the deep dialogue experience. I saw a draft of this, which was very powerful and a fascinating insight but, unfortunately, this paper has never been published.

One of the things that fascinated me was that the two of us (professional and consumer) who were the organisers and who were therefor ‘outside’ the dialogue loop (not privy to the actual conversations) worked our way through our own set of communication barriers. In the beginning I deferred to the professional expertise of my co-organiser and we both made fundamental mistakes in understanding what was necessary to develop and maintain a deep dialogue process. For example, I allowed him to do all the preliminary briefing with the facilitators. After all, they were all psychologists. I did not even meet them. As a consequence of this the dialogue started with the facilitators having no idea of the political framework in which consumers conceived the dialogue. This was a fundamental error of judgement on my part as well as Tim’s.

The North-Western Healthcare Network^⁶ funded a four-month evaluation of the Deep Dialogue trial and this took place early in 1997. Although it was apparent that there were several important issues that the project had not adequately addressed in its short life most of the people interviewed^⁷ strongly endorsed the experience. The project went on to win the Consumer/Staff Partnership Gold award at the 1998 Australian and New Zealand Mental Health Services Conference.

Conclusion

There are many professionals who are also consumers. Indeed, one of the common things that happens in various deep dialogue forums is that the distancing between professional identity and a more personal identity is challenged and people have to negotiate different ways of relating to each other. Sometimes, too, professionals ‘come out’ as consumers. These forums can be very powerful and consumers entrusted with their guardianship have to be very sensitive to the responsibility this may entail. However, it is not OK for a person who is defining themselves in relation to their professional position and status to say, “ well, we’re all consumers after all.” This is a cop out. On one level there is a truth about it but it is not a political truth. It takes an enormous amount of courage to speak from the position of one’s least empowered self. When someone who is also a professional genuinely throws off the protection that professional status acquires consumers know. In the same way when consumers who also happen to be professionals slip into their professional status to protect themselves other consumers know about that as well.

The consumer discourse is substantially different from a professional discourse. Sometimes, it is oppositional. Governments over the past decade have tried to develop policies around the concept of partnership with the Second National Mental Health Strategy being a particularly obvious example. However, sometimes this is conceived very naively and some consumers have reacted to the rhetoric by rejecting the language of partnership and preferring the more realistic language of collaboration.

I would like to conclude with a cartoon from Judy Horacek. It comes from her collection “Woman with Altitude.”

References

Overhead

Footnotes

2 Epstein M and Shaw J Developing Effective Consumer Participation in Mental Health Services – The Report of the Lemon Tree Learning Project, Victorian Mental Illness Awareness Council, Melbourne 1997 pp13 -15

3 Wadsworth Y and Epstein M. - Understanding and Involvement (U&I) Consumer Evaluation of Acute Psychiatric Hospital Practice “A Project Concludes…”, Victorian Mental Illness Awareness Council, Melbourne 1996 p 15

4 Wadsworth Y and Epstein M. op cit p 24

6 The hospital which housed the rehabilitation units from which the four staff who took part had been recruited.

7 Two consumers were funded to tape and transcribe interviews with all four consumers, all four service providers and both the facilitators.

	Merinda Epstein - A Consumer Activist's Guide To Mental Health In Australia

Home \| Articles and Conference Papers \|

The Chocolate Cake Factor – ‘deep dialogue’ in practice