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Most of the papers that can be downloaded from the Narrative Therapy Library and Bookshop were originally published in the International Journal of Narrative Therapy and Community Work. We recommend this peer-reviewed journal to practitioners who wish to stay in touch with the latest ideas and developments in narrative therapy. This journal offers hopeful and creative ideas for counsellors, social workers, teachers, nurses, psychologists, and community workers.

In each issue, practitioners from a range of different countries discuss the ideas and practices that are inspiring them in their work, the dilemmas they are grappling with, and the issues most dear to their hearts. Their writings are easy-to-read while remaining rigorous and thoughtful. The first section of each issue revolves around a particular theme, while the second consists of a collection of practice-based papers on various topics. The journal is produced four times a year. If you wish to stay in touch with the latest developments in narrative practice, we hope you will subscribe and become a part of our community of readers!

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Introducing the work of the Hearing Voices Network

by David Denborough 1

I am sitting in the national office of the Hearing Voices Network in Manchester, UK. In the back of the room a self-help group for voice-hearers is being facilitated by Mickey de Valda. Today there are seven people discussing what the voices have been saying in the past week, how they have been dealing with this experience, and sharing both struggles and delights. Bursts of laughter occasionally fill the room. At other moments there is sadness and some aspects of the conversation are poignant. At the moment, one man is speaking about his attempts to meet up with one of his voices who he has come to love and cherish. Despite making arrangements to meet, whenever the moment arises, she does not appear. Mickey is kind, skilled and thoughtful. This is the only space for many of these folks to be able to talk about what their voices are saying and how they respond. At times the sharing of coping strategies is ingenious and participants regularly describe how these groups make a significant difference to their lives. Recently, a women’s group has been initiated (facilitated by Sharon de Valda) as have groups for Cantonese speakers and for gay and lesbian participants. In London, I’m told, the first group for deaf voice-hearers is also up and running. During the group a phone rings at the front of the office and is answered by another volunteer – Jon Williams. While I have been visiting there have been calls from all over the UK and also from different countries in Europe. Calls have come from as far away as Australia and the US. There are not many phone numbers that one can call to talk about the voices you are hearing and know that you will be listened to and responded to by someone who understands the experience. There are not too many places where you will be welcomed rather than ostracised for experiencing life differently than most. I listen as Jon listens carefully and calmly to the person at the other end of the phone. He asks the caller about their usual coping strategies, how they have dealt with similar crises before. He speaks about some of his own experiences, what is most helpful to him and to those he knows. When the caller is feeling more settled, he puts her in touch with a local Hearing Voices support group (there are now well over a hundred throughout the UK) and invites her to call back any time. While other members of the network attend to the group and the phone calls, Julie Downs and Chris Stirk welcome me generously and start to inform me about the work the Hearing Voices Network does in training and supporting mental health professionals. I am here to meet with them because they have agreed to give a keynote address at the 5th International Narrative Therapy and Community Work Conference (which was held in Liverpool in July).

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 3 Not only are voice-hearers supporting one another in creative and moving ways, their work is also transforming understandings within the professional arena (see for instance British Psychological Society Division of Clinical Psychology 2000). Through their work, an alternative view of the experience of voice-hearing is being put forward. This view steps completely outside pathological understandings; does not believe the experience of hearing voices has to be negative; passionately believes that it’s possible to live meaningful and satisfying lives while hearing voices; and shares strategies and processes that assist recovery from significant mental health crises. A gradual transformation is taking place in relation to the experience of hearing voices. What’s more, the members of the Hearing Voices Network are achieving these transformations despite significant obstacles that are routinely placed in their way – whether these be the effects of hostile voices; the effects of medication; or the effects of stigma and pathological interpretations of their lives. One of the themes that the members of the network consistently convey to me is that they understand their work as political in nature. There is an emphasis not only on metaphors of ‘recovery’ but also ‘liberty’ and ‘rights’. There is a clear commitment to explore how relations of class, gender, race and sexual identity influence the experience of hearing voices, and a clear determination that those who hear voices have the opportunity to define their own lives and ways of living. The Hearing Voices Network’s self-help groups are not simply viewed as therapeutic but also as forums for organising changes to the broader culture in which we live. They are interested in radically changing understandings of ‘normality’, ‘mental health’ and ‘psychiatry’ and believe that as voice-hearers they are in the ideal position to do so. As you read the following five papers which offer different perspectives on the work of the Hearing Voices Network, I hope you can imagine sitting in the national office in Manchester, with the sounds of the self-help group and the phone calls in the background. Each of these five papers were crafted from interviews, most of which took place in the national office. Each were given as keynote addresses at the 5th International Narrative Therapy and Community Work Conference.

Acknowledgements I would like to acknowledge the kindness shown to me during my time in the UK by members of the Hearing Voices Network and those with whom they are linked. I’d particularly like to thank Sharon de Valda, Mickey de Valda, Terence McLaughlin, Julie Downs, Peter Bullimore, Warren Lowe, Chris Stirk, Rufus May, and Dr Phil Thomas.

Note 1. David Denborough is the Staff Writer at Dulwich Centre Publications.

Reference British Psychological Society Division of Clinical Psychology, 2000: ‘Recent advances in understanding mental illness and psychotic experiences.’ The British Psychological Society.

The International Journal of Narrative Therapy and Community Work 4 2003 No.3 www.dulwichcentre.com.au

The use of humour and other coping strategies

by

Jon Williams 1

Everyone’s experience of hearing voices is different. In this paper Jon Williams describes the ways in which he has come to live with the voices he hears and how humour plays a vital part. This paper also describes a number of creative coping strategies as well as discussing the influential work of the Hearing Voices Network.

Keywords: humour, coping strategies, schizophrenia, Hearing Voices Network

Initially, I only used to hear derogatory voices. And at times realise this is not going anywhere and you just want to get there were a lot of them. I remember being on a ward one day away, you walk out of the kitchen, out onto the street when the nurse told me it was dinner time. I said hang on a slamming the door. You are trying to escape, but the minute, and when she asked me what I was doing I told her, argument is still going on. You can still hear the other ‘I’m counting my voices’. She asked me where the voices person’s critical voice and you can still hear your own. You were and I told her that they were outside in the garden. She can’t leave the arguing behind. You can’t run from them. asked me how many I could count, and I said somewhere They are there with you – everywhere. Or imagine being in a between 16-20. That was a pretty bad day. really boring conversation that you just want to escape from, There are two ways of hearing voices. One is with but it is in your head. Nowhere that you go is free from those your ears as if they are in the room with you or in the garden voices. outside. And the other is when you hear them in your head. When this first happened, I just couldn’t believe it. It It’s very difficult to convey what this is like. Imagine going was a whole new experience. I couldn’t explain it, I couldn’t into someone’s house. You walk into the kitchen where there understand it, and I didn’t really want to try to convey it to is someone you know and they have a go at you for others because it seemed so alien. I don’t mean that the voices something which you have not done. Imagine standing there were aliens, although some people think this, but that the arguing with this person for half an hour. Finally, when you experience was so obscure. It was as if it wasn’t really

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 5 happening but it bloody well was. Why was this happening to Learning how to cope me? What had I done to deserve it? When were they going to go away? These are the sorts of questions that people ask I first started hearing voices many years ago and to try themselves for days or weeks or months or years. to cope with the experience I went to bed for about 4-5 months. I completely shut out life. I remember the morning Humour after about four months of hearing voices that I woke and thought, ‘Fine, if you are going to keep swearing at me then I learnt early on that what was helpful to me was perhaps I’ll swear back at you’. Shortly afterwards the nurse humour. So what I would do, whenever my concentration was came in and said who are you talking to? When I said the okay, was to read joke books and humourous stories. I’d voices, he said, ‘Well can you please keep it down because listen to comedy on the radio and watch it on television and you’re upsetting the other patients’. I didn’t know I was I started to make up very bad jokes. What I found was that if talking out loud so I kept it down a bit from then on. I could put a smile on somebody’s face, it would make me Some people say that you should ignore or not talk feel better. The negative voices always take advantage of back to your voices, but this didn’t work for me. Over those when I am vulnerable. So the less vulnerable I am the easier four months of maintaining my silence, I had just become my life is. Over years I have learnt how to use humour to more vulnerable, more depressed and helpless. My voices overcome feeling so vulnerable. I’ve researched it almost. were bullies and by not saying anything back to them, they For me, there is nothing much better than being on a began to dominate me. They knew I was vulnerable and natural high laughing with other people. When I am with would keep putting me down. I had to turn and speak up for happy people and the whole place is alive with good spirit, myself and when I did so, this surprised the voices. But it’s I know the voices will not come. To be honest, I know this different for everyone. We all need support in finding our really annoys the critical voices. own ways to respond. Even though there are many hard times in life, there Knowing what it’s like when the voices really get are also funny moments. For instance, I remember when I was going helps me to speak to other people about their just boarding a bus and I sat down and started quietly singing experience. One day I remember taking nine distressed phone to myself a record that was currently in the charts. One of my calls. Sometimes we even get calls from other countries from voices then said, ‘Oh no, not that one again’. And another people who simply want to be able to talk to another voice voice chimed in too, ‘Yeah, I agree, why don’t you sing hearer. The shortest distress phone call I have taken is about something else?’ So I asked them under my breadth, ‘Well, 20 minutes, while the longest was about an hour and 45 what do you want to hear?’ And they said, ‘Something from minutes. When someone rings, first of all I just listen. After Elvis’. In response, I started singing ‘We can’t go on together about two to three minutes I tend to say that I am also a voice with suspicious minds’ and they sang along with me. In hearer, which sometimes shocks people because they have hindsight I think that was pretty funny. That’s the sort of thought that they were the only one. Often then the incident that I talk about with others. It was a true and good conversation changes and the person feels free to talk about experience. the more extreme or difficult aspects of their life. I tend to Now that I am involved in the Hearing Voices find that what the person initially wants is understanding. Network I am on the lookout for times when humour can be Once they know that I am a voice hearer then they will ask helpful. But most people who have heard bad voices feel very questions about how I cope, how I go about things, how I live vulnerable when they first come to the groups so I have to with hearing voices. So then I might share some of my coping take a lot of care. When I’m taking a distressed phone call, or strategies and then I would ask about their own. when I’m first talking to someone about the voices, I tend to be on the serious side. I take time to get to know the person. Everyone’s situation is different After a while they might ask me what coping strategies I use in difficult circumstances and that’s when I might share some No-one hears the same voices. Some say they know of my stories. I don’t introduce them at the beginning though. the person whose voice it is. Some say they are people who At first it is all about listening to what the people have to say. have passed on as it’s quite common that people begin to hear

The International Journal of Narrative Therapy and Community Work 6 2003 No.3 www.dulwichcentre.com.au voices after someone has died. Other people say that they someone wherever they are. Unfortunately at present we can’t don’t know who the voice is. Some people hear male voices, have the helpline available around the clock – otherwise we’d others hear female voices, some hear both, and some voices just be too tired. If I spent a whole week on the helpline I are not of a specific gender. Some of the voices can be might need to spend another four months in bed! hostile, others can be friendly, or there can be a mixture. I find doing voluntary work for the network extremely Good voices can cheer you up, mine even tell me jokes beneficial. I’ve not yet found that I wish to move on. Sure, the sometimes. Some people only hear one voice, some hear work can be intense. Sometimes a phone call makes me feel many. Everyone’s situation is different. like getting on the next train to go to the destination where the This means that we need different groups too. We have person is ringing from to help them. Sometimes after a group recently started a women’s group, and also a group in the or a phone call I need to go home and rest for an hour or two Chinese community. All of the groups are based on trust. on the bed. But when someone rings to say, ‘Thanks for your What is said within those four walls stays within those four help. I am using these coping strategies and I am not suffering walls. The biggest group we’ve ever had is 34 people and we as much as I did’, it means a lot to me. There have only been only had 32 chairs so two people had to sit on the floor, but a very few people who have rung up and said the voices have they didn’t really mind. Sometimes you get no people at all completely gone away, but we often hear from those who are turning up to a group and that’s usually when there’s about living much better lives thanks to conversations they have two feet of snow on the ground, or when the sun is blazing shared. When we get those sorts of phone calls, it is better and they are all out sunbathing – which is okay so long as than being in a paid job, although I would like to be in a paid you’re not on chlopromazine! job one day in my life. Just not now. If I had a chance to talk to someone about the voices on my first visit to the hospital, I don’t think I would have Progress paid so many visits since then. I needed to talk to someone but I didn’t know who. The staff were kind, they would take We have seen the groups make a difference in people’s me away and play cards or scrabble but no-one was willing to lives and that is what is satisfying. Some people have come to talk about the voices. Over time I became very good at cards the group and then gone back to college. Others have even and scrabble. In fact, if you want to get out of hospital gone onto university. Once people discover they are not the quickly, the best way is to start beating the staff at scrabble, only one, and that there are ways of living with voices, then cards, pool and ping pong! If there had been such a thing as they can work to find the ways of living they have longed for. the Hearing Voices Network in those days I would have been We’ve seen progress in other ways too. We’d been up on the phone a lot of the time. and running for about six months before we heard some I enjoy the life that I am now living. Through the people in the group say that their community psychiatric network I have met very good friends, good people, who help nurse, or their approved social worker, had suggested that me along the journey of my life. As voice hearers talk to one they visit us. After about nine months we made a further another it helps us find and develop our own coping strategies. break through when someone said to us, ‘My doctor told me to come and see you’. Six months later we had an even bigger breakthrough when we heard someone say, ‘My psychologist Coping strategies asked me to come’. And after eighteen months one bloke turned up and said, ‘My psychiatrist told me to come and see To deal with paranoia, I use a walkman. If I feel you’. That’s how the group is going. We are gradually people are talking about me, I can get from one place to moving forward. another by listening to my own music. This means I can’t In September 1993 there were eight Hearing Voices hear other people’s voices which otherwise I might interpret Support groups and 350 members. Today, in this country as them talking about me. Another strategy that some people alone, we have more than 130 support groups and well over find helpful is to negotiate with the voices. For some people, 1,300 members. And we’re in the midst of setting up a when the voices come they excuse themselves from present national phone line so that people will be able to talk to company and pay a visit to the toilet. After making sure there

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 7 is no-one around they then say to their voices, ‘Look, I can’t There was a side effect to this approach though. People talk to you now, but if you go away and come back tonight approaching the phone box tended to give it a wide birth, but between nine and ten, I’ll give you an hour. We can talk then I tried to think to myself that I wasn’t likely to ever see them in my bedroom about whatever you want.’ This sort of thing again. More recently, I have worked out an even better works well for a lot of people. But I’m told that it’s very approach … I decided to buy myself a mobile phone. Now I important not to keep the voices waiting at the appointment can talk to the voices whenever I want and people always time, because then they can get really annoyed at you. think that I am talking to someone on the other end of the I have one other coping strategy I would like to share line. If you can’t afford a real mobile phone, you can buy a with you. One morning I woke up and decided to go into cheap replica. If I am talking in the street, I still have to be a town. I had a bit of money so I thought I’d go and buy myself bit careful with what I say, but it has made a real difference some new clothes. Treating yourself can uplift you so I about being out and about. thought I’d head off and buy a new shirt or trousers, or even Each individual is different. What works for me might both. Then I thought I’d come home and have a bath and then not work for someone else. But we have found that what get dressed up in my new clothes and go and see some seems to be good for everyone is to have a chance to be friends. Doing that sort of thing can make you feel better believed, to talk with others about what the voices say to them about yourself. It can keep the voices at bay. At the very least, and to share ways of coping. I never try to say that I have any I thought I’d go and window-shop. But as I began to go out of answers. For instance when a person says to me, ‘I have met a the house, one of the voices from the corner of the room said new partner, we have become lovers, when do I tell them that ‘No’. It was a powerful voice, so I went to get a cup of tea I hear voices?’ I can’t give an answer to that question. It is and another cigarette to re-gather myself. Having done so, I different for everybody. went to try to leave again when a few voices this time said If we were all the same in this world, it would be ‘No’. At this point, I looked at the corner of the room and said really boring and I’d spend a lot of time in bed. But because ‘Bollocks, I’m going’. Please excuse my language but that’s we are all so different I want to get out there and face the what actually happened. world. It is a new day, let’s go for it. Sometimes when you are So I went into town with my voices really pestering hearing voices though, it is raining every day. You don’t wish me. There was no-one I could really talk to and there was to venture out. You don’t wish to do anything and you just no-one I knew in town. When I got off the bus, I knew that I wish to stay under the covers. It’s at those times that people had to try to get my voices back under control so I went to a need to know about the Hearing Voices Network. phone box and pretended to dial. As soon as it looked like I could be on the phone to someone I then gave my voices Note back what they had been giving me, which was a load of 1. Jon Williams works at the national office of the Hearing Voices rubbish, for about half an hour. Eventually they went into a Network (HVN), Manchester, UK. He can be contacted c/o whisper and I felt as though a weight had been lifted off my HVN, 91 Oldham St, Manchester M4 1LW, UK. Tel: 44-(0)161- shoulder. I then left the phone box and got on with the rest 834 5768. Fax: 44-(0)161-834 5768. Email: of my day. [email protected]

For up-to-date information about publications, training courses and our up-coming International Narrative Therapy & Community Work Conference in Oaxaca, Mexico, in July 2004, please consult our webpage:

The International Journal of Narrative Therapy and Community Work 8 2003 No.3 www.dulwichcentre.com.au

Glimpses of peace

by

Sharon de Valda 1

Trauma can be the main trigger or cause of voice-hearing in many people. In this paper, Sharon de Valda evocatively conveys how racism and sexism shape her experience of hearing voices and how she has in turn used her own experiences to assist other voice-hearers.

Keywords: hearing voices, depression, race, gender, recovery, Hearing Voices Network.

My name is Sharon de Valda. I am thirty-nine years old and white mother for one reason – simply because I am black, of I live in a small flat in Manchester with my husband Mickey mixed race. My mother may have wanted to keep me, but it and our pet cat. I have been a voice-hearer since I was aged was impossible as I was illegitimate and her husband at the thirteen. time refused to keep me with his other children. My natural I became a volunteer at the National Hearing Voices father (who I cannot trace) was black. So I had to go into Network a good few years ago. I first attended their self-help care, and ended up in the authority of the charity Dr groups along with Mickey. At this point my life was rather Barnados. I endured much racial abuse at school. As I lived in disturbed and my voices made me feel suicidal and hopeless. a white area, people stared and I grew up paranoid and lonely. I later discovered that, thanks to Mickey’s constant support and Other children’s parents told them to keep away from me. I care, I was changing gradually. I was slowly moving towards became withdrawn, confused, sad and suicidal. The first time recovery. Recovery is the big buzzword in mental health at the I can recall hearing voices was when I was thirteen years old. moment, previously we were never expected to get well again. The voices terrified me. They ordered me to kill myself; they I have met many different people at the Network and am now were so persistent. They called me ‘nigger’, ‘coon’ and in the position of being able to give help and guidance to other ‘wog’. Sometimes it was like going to a football match and voice-hearers. In a strange way, helping others has contributed being the only black person. It was like standing in the middle to my own journey of recovery. of the field and everyone in the crowd was white and was Trauma can be the main trigger or cause of voice- shouting racist names at me. That’s what it was like. I moved hearing in many people and I’d like to give you a brief from the children’s home to foster homes, from foster homes introduction to my childhood. I was abandoned at birth by my to prison, from prison to hospital. It was quite a trip.

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 9 I have grown to accept and understand that my own some very strange ideas out there in the world. For instance, it voices are ‘flashbacks’ of memories of horrible racism that seems that some people will be my friend if they can make I experienced as a child that have become imprinted in my racist jokes about me. I’m very interested in how being black memory. Since I now accept this fact I have developed my and being a woman affects the voices I hear. I’d also like to own coping methods. Now I try to handle the racist voices by know what difference it makes if you have a disability, or if rationalising that the shaven headed men in the pub will not you are gay. Do the voices play on that too? beat me up, they might not be racist skinheads, but simply Recently, I have done some work in a woman’s prison. balding men or football supporters. Sometimes it is hard to I didn’t do a lot, but I identified with the women there. I was realise this and at other times it works well and gets me through. locked up myself years ago and actually, because I didn’t have a family or anywhere else to go, I didn’t mind it that Women’s stories much. I accepted it as a place to live. The women I met with recently though, were very young and naïve. Some of the In recent years I have acted as a facilitator for Hearing women had never talked to anyone about hearing voices. Voices groups, especially for other women. I think it’s important I remember one woman was really harming herself and we that as women we have a chance to speak with one another tried to talk about different coping strategies. It must be pretty about our different experiences. It can be helpful to have other hard sitting in a cell hearing voices and not having anyone to women to share stories of abuse for instance, and to help get talk to about this. I think there should be more opportunities rid of the guilt we might feel about it. Women shouldn’t feel for voice-hearers to go into prisons and meet with people this guilt about abuse we have experienced, but it happens. It inside who are hearing voices, to show them some can manifest itself as a voice that calls us demeaning words understanding. It could save heaps of people from going like ‘whore’ or ‘bitch’. It might be the voice of the abuser and through even worse experiences. It’s not right to leave people it comments upon how we are as a person, how we’re dressed just to cope for themselves. or how we’re acting. It might say things like ‘you’re a slag’, if you’ll excuse my language. The voices make these sorts of Depression comments. And if we talk as women about these things it can be really helpful to hear that others go through similar things. In the last few months, I have felt like I’ve been You then feel like you’re not the only one and this can create imprisoned inside my own head. I have been experiencing a sense of kinship. profound depression. People are often more interested in Self-harm is another big topic that we talk about. talking about the voices than depression and I find depression Sometimes the voices tell you to harm yourself, and more difficult to describe. You might find it hard to sometimes self-harm is actually a coping strategy. It is a understand why someone might lie in bed all day. While they taboo topic and it is complex, so it means a lot to be able to may not be hurting on the outside, they’re hurting inside. It is talk with others about it. The voices sometimes order me to like an overpowering sense of hopelessness and despair – a scratch my face, and to harm myself in other ways. But the wishing that you were not alive. This depression has had me physical pain can actually come as a relief. It reminds me that feeling completely trapped. It’s a strange sensation because it I am real. It’s a way to focus the hurt physically. I know that also feels sometimes as if I am looking down at myself, as if sounds a bit mad but it is true for me at times. When my arm I am separate from my own body. is actually bleeding it’s almost peaceful. I think the voices make me more vulnerable to the We talk about all of these things in the groups. One of depression. The voices are so negative that they bring me the issues we also have to address in the groups is when people down. If I wasn’t hearing the voices, I might feel more like make jokes about gay people, or racist jokes, jokes about Irish doing things. But when the depression comes it seeps into my people, or jokes that are negative about women. I have never body. It takes me over and confines me to the bed. It’s as understood why some people find these things funny. It close to hell as I could ever imagine. While it might look as if genuinely confuses me. Sometimes I have been in a group and I am just being lazy, I am actually living a hell. The phone sat there thinking, am I supposed to laugh now? Sometimes you might ring right next to me and I am unable to pick it up. have to laugh ’cause if you don’t you get ostracised. There are I know it sounds strange but it is true. I would like to find

The International Journal of Narrative Therapy and Community Work 10 2003 No.3 www.dulwichcentre.com.au other people who have had experiences of depression, so we can make notes together, find words to describe it. I’d like to Other developments in the hear about other people’s coping strategies. Sometimes ‘survivor’ movement having a bath can be good. Or even just getting up to have a cup of tea. If anyone is interested, I’d like to hear from other people who have experienced depression and perhaps The work of the Hearing Voices Network is linked to a range together we can find out what to do. of other developments in ‘psychiatric survivor movements’ From all the experiences I have had, I have learnt a lot that are occurring in the UK and elsewhere. We have included about trust and making connections. I know that I can make here just a few examples of this work: really good connections with other people who hear voices. I can also connect well with people who have learning Mad Pride disabilities. I know how to reach out to them. When I have Mad Pride (www.madpride.org.uk) organises concerts, something in common with another person, whether it is festivals and campaigns celebrating the resistance, humour experiences of racism, or voices, or being in prison, we can and lives of people with mental illnesses. It is committed to find ways to trust each other differently. When I meet ending discrimination against psychiatric patients, promoting someone who is vulnerable, or who does not find it easy to survivor equality and celebrating ‘Mad culture’: trust, I try to find something we have in common. I am open Mad Pride – the equivalent of Gay Pride for people who with them, and ask about the content of the voices. The voices have suffered mental ill-health – has truly arrived. There they hear might say similar things to what mine do and then have been Mad Pride gigs … Mad Pride marches and we can talk about how we cope with this. Mad Pride demos; there is a Mad Pride website, a One of the ways in which I try to escape is that I have forthcoming Mad Pride anthology and there are even put pictures up all over the walls of our lounge room. They plans for a Mad Pride Week … Mad Pride is different are all pictures that tell a story of a good time, some precious because above all, it wants to change the way in which memory. There are so many photographs, clippings, and society views people with mental health problems … using pictures. The amazing thing is, when I eventually found my a classic civil rights tactic to combat … misleading mum and I went into her house for the first time, I saw that stereotypes, Mad Pride takes the label with a negative she does the same thing. It was quite extraordinary. Her walls value (‘mad’) and reappropriates it. ‘Glad to be Mad’ is are also covered with pictures, almost every square inch of its slogan. (Seaton, M. quoted in British Psychological the house, many of them of old film stars. I felt like I had Society Division of Clinical Society 2000, p.57) gone home, even though I’d never lived there. Not only this, I discovered that our facial expressions are quite similar. Survivor workers Now, when I sit in our lounge room and look at all the Within the UK there is also a growing community of pictures, there is also a picture of my mother. The room and survivor workers who held their first ever national conference the pictures and their stories bring me glimpses of peace. But in 2002 (see Snow 2002). Not only are such forums providing I do so wish someone could find a cure for depression. support for those people who have had experiences of mental health difficulties and are now working in the field1, but they Thank you. are also creating a momentum which is questioning taken-for-

granted notions about the nature of professionalism. Inspired Note by the example of Dr Rufus May, Dr Rachel Perkins and 1. Sharon de Valda facilitates groups for the Hearing Voices other health professionals who have ‘come out’ about their Network in Manchester, UK. In 1994 Sharon and her partner, previous psychotic experiences or mental health difficulties, Mickey de Valda, featured in a ground-breaking video called ‘Mad, Bad or Sad’ shown on BBC 2. Sharon can be contacted different conversations are now becoming possible. Perhaps c/o HVN 91 Oldham St. Manchester M4 1LW. Tel: 44-(0)161- before too long health professionals will be able to openly 834 5768. Fax: 44-(0)161-834-5768 Email: discuss their own experiences of mental health difficulties and [email protected] how these experiences shape their work. [PTO]

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 11 Dr Rachel Perkins’ work with the Pathfinder User Another workshop I attended … looked at how white Employment Program is actively campaigning to remove survivor workers can support black survivor workers. obstacles for employment for people with mental illnesses. Culture and mental health is an area in which it is crucial [The Pathfinder User Employment Programme] … is a to maintain a focus on social and cultural identity. This program designed to increase access to work within seems an important and neglected aspect of the recovery mental health services for people who have themselves process. For example, of the seven people who were experienced mental health problems. It looks at mental treated alongside myself for psychosis, when I was a health services not as providers of service, but as patient, whose outcomes I am aware of, the difference is employers – I believe that … the National Health Service striking in terms of cultural background. is the largest employer in Europe – 1 in 20 of the working Of the two white people, one is a freelance user/mental population is employed by it. It recognizes the employment health consultant, the other is a journalist. Of the five discrimination that people with mental health problems Black people, two are dead, the other three are on experience in getting jobs in mental health services. But neuroleptic depots, one has Tardive Dyskinesia. The this is not altruism – helping the poor unfortunates. conclusion I draw from this experience is that there are Instead it is helping the poor services. The programme significantly greater social obstacles to recovery for Black was founded on the belief that the expertise of experience people. (Rufus May quoted in Snow 2002, p.47) is essential to the provision of mental health services that are actually useful to us … Elsewhere in the world Well, to date we have provided support to almost 50 people with mental health problems to help them to gain We have provided here just a tiny glimpse of the range and sustain ordinary jobs … on the same terms and of work that is happening in the UK in relation to ‘psychiatric conditions as everyone else. This is not about creating survivor movements’. For more information about the work ‘special jobs’ for the ‘loonies’ – it is about jobs in clinical occurring in other countries please see: teams and services that already exist …We have also • European Network of (Ex) Users and Survivors provided work experience for over 80 mental health of Psychiatry ~ www.enusp.org service users … (Perkins quoted in Snow 2002, p.29) Perhaps even more significantly, Pathfinder has • The US based Support Coalition International ~ developed a ‘Charter for the Employment of People who have www.mindfreedom.org Experienced Mental Health Problems’ which is designed to • Psychiatric Survivors of Ottawa ~ decrease employment discrimination. Amongst other things, http://ncf.davintech.ca/freeport/social.services/opsa/menu this Charter requires that employers include ‘personal • In Australia, contact the ACT Mental Health Consumer experience of mental health problems’ as a desirable Network c/o PO Box 469, Civic Sq, ACT 2608, Australia. qualification for employment in all their advertising of positions, and to work towards a goal of at least 25% of recruits having personal experience of mental health problems. Note For more information about the Pathfinder User 1. The report of this conference contains a very helpful section Employment Programme see: titled ‘Good practice guidelines for employers’ (Snow 2002, http://www.schizophrenia.co.uk/policy/policy_articles/policy pp.51-52). _articles_4.html

Matters of race References Survivor movements are also trying to address race British Psychological Society Division of Clinical Psychology, 2000: relations in this work. In the following quote, Dr Rufus May Recent advances in understanding mental illness and psychotic describes one of the workshops he attended at the inaugural experiences. The British Psychological Society. National Survivor Workers’ conference and why it was Snow, R. 2002: Stronger than ever: The report of the 1st National significant to him: Conference of Survivor Workers UK. Cheshire: Asylum.

The International Journal of Narrative Therapy and Community Work 12 2003 No.3 www.dulwichcentre.com.au

From paranoid schizophrenia to hearing voices – and other class distinctions

by

Mickey de Valda 1

While not commonly discussed, class relations have a significant influence in relation to people’s experiences of mental health and hearing voices in particular. In this paper, Mickey de Valda describes how experiences of class shape his experience and how this has influenced his work with the Hearing Voices Network.

Keywords: class, prison, schizophrenia, groupwork, Hearing Voices Network.

Like quite a few working-class young men from inner city uneducated. A qualified professional with letters after his name Manchester, I was locked up at sixteen. For those of you who had told me that I was a schizophrenic. I could find no madness have never been inside them, prisons are horrible places. inside me but he was the expert and he had found it there. Once locked up, fights with other inmates can lead to further I remember the day of that diagnosis. I was fairly trouble and a sense can come over you that you might never shocked, it felt like I’d been hit with a brick. I was scared and get out again. It is a terrifying situation and one that can make shaky, wondering what I might do. I understood to a degree you crazy. They are places that could make anyone mad if what schizophrenia meant; I mean it gets into the papers and you are at all sensitive. onto the news on telly, doesn’t it? The media always links When I was locked up for a second time, years later, schizophrenia with situations of terrible violence. I found it I started having difficulties due to being in prison, due to drug hard to believe that there was a violent mad man within me. abuse and to flashbacks. When I approached the prison I did not feel very different to the way that I had always felt, mental health staff for help, their immediate reaction was to but knowing that it was there, within me, that potential for diagnose me as a paranoid schizophrenic. While I had already great evil, made me scared of myself. Did I really know what been struggling, it was this diagnosis that produced genuine I might do next? distress. As a consequence I went badly off the rails and spent After I got out of hospital I continued to live in a full three years in a psychiatric hospital. Manchester, where at the time there were two footbridges For the next twenty years, until well into the nineties, over the motorway. I found that when I walked over these I believed myself to be a ‘schizophrenic’. I was also a bit of a bridges, I was really frightened. As I got nearer to the centre yobbo; not what one would call learned exactly, in fact quite of the bridge, right over the motorway, I was worried that my

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 13 madness might get out. Could it take me over, could it take powerless people in hospital wards and prisons schizophrenic me darting over to the handrail and launch me over the edge is even more fraught, because the least powerful are the most and down onto the road below? I would walk dead-centre in likely to take on such names, to act them out and become the middle of the bridge, tense and nervous. I never them. Calling people schizophrenics often does irreparable mentioned this to any companion I was with, I just walked on damage to the person on the receiving end, to their families with my heart pounding. When I was alone I avoided the and to all of us. Labelling someone a schizophrenic can also bridges, taking the long way home. inadvertently contribute to violence, especially for young working-class men, as this label is almost an invitation to cease to have any control over your life and actions. Equally, The politics of diagnosis the public at large become likely to discriminate and harass those of us who carry such a diagnosis. When someone like me, uneducated, of the lower And what if we had other ambitions, other dreams, reaches of society, is diagnosed as having a mental illness like other hopes for our lives, other ideas about who we are? What schizophrenia, or some other kind of mania, there is some real places exist for us to talk about ourselves and our lives in psychological magic at work. For many of us, the label that is different ways? At the Hearing Voices Network we hold self- stuck upon us proves to be an offer of a new identity. help groups at which we discuss our experiences of voice- Suddenly, we are not what we were: we are something new, hearing. As voice-hearers, we believe that our experiences different than before. Our own families and friends treat us must give us some validity to speak on this matter. differently and we notice this. We may no longer be trusted to do certain tasks, we may not be left alone in the house of a relative when they go out, and minding the kids becomes Our groups taboo. These changes are gradually soul-destroying. Even more damaging is the fact that one’s own In our groups, we are not concerned with trying to beloved self will take on the new identity offered by establish some so-called ‘real’ reason why people hear voices, psychiatric understandings. We look back at our past and find some chemical imbalance. The policy within the Hearing reasons to believe that our old experiences can be seen in a Voices Network is that members can have any explanation of new light. Obviously, when I lost my temper those times, their voices that suits them. This means that there can be as I was psychotic, not just angry. many explanations as members of a group. We are much Worse still, it is not just yourself that re-defines your more interested in how the voices and other unusual past actions, everyone else is re-figuring your life too. You experiences affect our lives and how we cope with these must be careful what you say lest you be condemned. Your experiences. Sharing coping strategies with one another can actions and motivations suddenly become questionable by all literally be life-saving. those who you love and by everyone who knows you. I am always nervous before I facilitate a group, And if you decide that being a schizophrenic is although it is much better now than it was five years ago intolerable, too traumatic, it is not an easy process to reverse. when I began. These groups mean a lot to me and there are You look around and survey the damage done. Due to all the various highlights that I’d like to mention now. stress and pressure, you are no longer the self that you used to I always appreciate it when somebody speaks for the be. The voices and visions are probably by now having a field first time. Often new members just come and listen for a day, and your relationships are possibly in tatters. Even your number of sessions. They take a low profile for a while. They mum will phone the doctor when you mention anything that might tell me that they have trouble speaking in groups, and she thinks is a little odd. Friends have betrayed you with sly I will simply say something like, ‘Some people just want to grins and half-hidden gestures, and if you are from a listen and that’s fine’. When the time is right, when they have neighbourhood like mine, well, after a while most of the heard enough people speak about things that resonate for people who you know will have labels themselves. them, then they will begin to speak themselves. When they What am I trying to say here? I am trying to convey do, a space must be created for as long as it takes for them to that calling someone a schizophrenic is dangerous. Calling convey their story. This may be the first time in their lives

The International Journal of Narrative Therapy and Community Work 14 2003 No.3 www.dulwichcentre.com.au that they have ever felt able to put into words the story of I sometimes don’t feel that I have skills as such to tackle these their hearing voices experience. We take great care to listen to problems. We in the group have experience of some this, to welcome their stories. They can talk about their conversations or whatever, and we just might know what greatest worries, the things that they are perhaps most those who come to the groups are going through. Also there is ashamed of, the experiences which they never thought that a good chance that we do not know what the person is anyone else would possibly believe. They can try to put into experiencing. That situation is a case of listening carefully words the strange sensations, voices and visions that are not and, importantly, allowing the group to interact in some way safe to talk about anywhere else. When someone talks for the collectively that seems to result in some sort of inclusion of first time in these groups it is always precious to me. the person concerned. This is akin to the way we feel when Another highlight of the groups is when we celebrate we meet a long lost relative we haven’t met before, that there each other’s achievements. These might not be so big to is a sense of acceptance and intimacy; a sense that we are others, but they are very significant to us. It might be that almost within a family. someone has managed to get some sort of job and be able to A group with our network is often the only place that move out of the mental health scene. This might mean we voice-hearers have to talk about their experiences of the won’t see so much of them because they will be at work, but voices. However, we have to take care of minority groups’ it is nonetheless something we all celebrate. It does everybody feelings in the same way that we safeguard all of ourselves. good to know that this might also happen to them one day, To an extent one could say that people who live in glass that we too might move out of the mental health category houses should not throw stones. We try to react to these which is very stigmatising. Alternatively someone may have situations the best that we can, based on the principles of the begun a new relationship, or had an experience that has been group and the network. Ground rules are stated before every healing in some way. I vividly remember one group, when a meeting and a reference to the rules will highlight the fact that man who had experienced severe abuse as a child was able to someone has breached them. Most of the time I feel that we tell us that the person who had done this to him had finally deal with these things quite well. Sometimes we struggle with been convicted. He was triumphant on this day and we shared difficult situations though. in his joy. Redressing injustice is often very healing for people. These sorts of events are celebrations for our group members and we share in them. We all delight in these moments. Class relations Of course, there are challenges too. There are times in the group when someone won’t stop talking and this is hard to I am particularly interested in how issues of class handle without insulting them. It is difficult. Inevitably, they influence mental health. I believe that working-class people are talking about things that are very important and real for are especially at risk in their interactions with mental health them but to others they might be quite surreal and repetitive. professionals. If you approach a psychiatric service without a I haven’t found a set way of responding to this. I try to be given amount of knowledge and education you are incredibly honest and if I cannot understand what someone is saying, vulnerable. In my experience, working-class people, are a I will tell them that and try to find another way for them to little more likely to accept their label and live it, act it out and convey what is important to them. Sometimes I suggest that become the schizophrenic that they are told that they are. they might write some of their story down, to find a different If you consider the plight of the sub-working-class way of sharing it. Sometimes this moves the conversation on. voice-hearers, the risk is more extreme. Those within prisons One of the other areas I find challenging is when for instance, who ask for the help of a psychiatrist, are almost people speak in derogatory ways about someone they’ve just always drug abusers and with histories of trauma. They seem ended a relationship with. We believe it’s really important almost guaranteed to acquire a psychiatric label before too that the groups are not places where sexism or racism or long. Initially I thought this was just true for me. But about a homophobia is spoken and so we try to speak out immediately year ago, I went back into a local prison to facilitate a group when we think something sounds discriminatory. I might just for people who are designated as having psychiatric problems say, ‘That sounds like sexism doesn’t it?’ or, ‘I wonder what and hearing voices. Out of a dozen of these lads, there were a she would say about that?’ But this can be complicated. dozen paranoid schizophrenic labels.

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 15 I tried to convey to these young lads another way of understanding what was happening for them. I tried to let them know that the extraordinary experiences of voices and visions that they have could very well be due to their drug use. They had been discovering that their minds were now habituated to hallucination. They now have vivid dreams and experiences that are akin to drug use but without taking any substances. While they had been told this meant that they are now paranoid schizophrenics, actually this is not the only Another highlight of explanation. These bizarre experiences can be fantasies, they the groups is when do not have to be connected to delusions or to what is known as schizophrenia. Nobody explains to working-class lads in we celebrate each other’s general, even outside of the jails, the different things that can achievements. happen within our minds. These might not be I know the effects of a lack of education. In fact, at so big to others, times I can almost feel incapacitated with ignorance. Recently I bought one of the study guides for high school students on but they are very psychology. It was in an Oxfam shop. When I read through significant to us. this I couldn’t get over the fact that there must be so many It might be young people studying at that level, 17-18 years old with the most extraordinary knowledge. I remember when I used to go that someone has to social security and the eighteen-year-old behind the counter managed to get would tell me what we should have done with our money the some sort of job previous week and how we should have made it last. This and be able to caused resentment at the time. But now, when I think about the eighteen-year-olds who are so well educated, like my move out niece who is studying law, it can take my breath away. I am of the mental health truly glad these young people have these opportunities. It’s scene … just that many working-class people who haven’t had these chances can literally feel overcome by the sensation of Alternatively ignorance. I can almost tremble if I think about it. someone may have Most health professionals live a middle-class life and begun a new this has real effects for those of us using the services. For relationship, or had an instance, it is very common for me to feel confused when professional people tell me positive things about my skills or experience that abilities. While they are trying to be supportive, it is difficult has been healing for me to separate what they are saying from the many in some way. instances of positive reinforcement I was offered when in the psychiatric system. False positive statements from professional middle-class people can really limit the possibility for honest communication. At times it can become difficult for me to discern whether I actually am doing something significant or whether the person is just offering positive reinforcement. Some examples of class differences are more obvious. I remember when I was in hospital and one of the workers

The International Journal of Narrative Therapy and Community Work 16 2003 No.3 www.dulwichcentre.com.au suggested that I go and play tennis because there was a court Looking back, looking forwards adjoining the ward. I said to him, ‘Mate, I can’t play tennis, I never had a chance to play tennis. I don’t even believe in For many years the voice-hearing experience has been tennis’. And he said, ‘Of course you had the chance to play one of hospitals, psychiatric drugs and, for some of us, tennis, you lived near the Manchester Royal, you could just incarceration. We have lingered, lost on the fringes of walk down a mile and a half and there are tennis courts’. religious mania, believing ourselves beset by devils and I tried to convey how I couldn’t do this, that whole demons, not to mention how many of us have had frightening communities couldn’t do this. I tried to convey that there was preoccupations with suicide. We have lived marginalised a far greater distance than a mile-and-a-half separating me lives outcast from mainstream society. And we have lost so from those tennis courts in the 1950s and ’60s. But I couldn’t many people along the way. find a way to explain this to him. Fortunately, though, understandings are changing. More recently, when I have come to study counselling, There is now a movement of people in this country and it seems sometimes as if what is being taught amounts pretty elsewhere that is changing the ways in which people much to what is known as ‘good middle-class manners’: understand voice-hearing, that is changing how we are talked listening to people in particular ways, being positive, polite, about, and that is changing how we understand ourselves. It is not too direct. This was another revelation really. It made me my sincere hope that through creating alternative descriptions realise just how working-class I am. of hearing voices we can assist those truly traumatised voice- These issues of class are with us everywhere. The way hearers, those who are in great distress. in which I facilitate groups is influenced by my working-class Many will now concede that rather than schizophrenia background. I am not exactly sure how, but I know that it is being a permanent state, a life sentence, for some people it true. Within the Hearing Voices Network, we are not trying to may instead only be a stage that can be passed through. become counsellors. We are not seeking to become People are now more likely to describe someone as having professionals. We wish simply to offer each other support and had psychotic experiences rather than as having friendship. We wish to run groups and training so that people schizophrenia. Gradually more support is becoming available who hear voices can talk about them and can share strategies for people to talk about the experience of hearing voices and for dealing with them. That is what we have to offer. to develop strategies to deal with these extreme or unusual These days more professional people are interested in experiences. Perhaps one day, young lower working-class being involved in hearing voices groups. This is a good thing. men in our prisons will not be diagnosed as paranoid It means our work is becoming increasingly respected and schizophrenics. That is the day I am working towards. acknowledged. There is no doubt in my mind that professionals have skills that enable them to work in a Note perceptive and sympathetic fashion. The fact that they do not themselves hear voices must however be noted. Wherever 1. Mickey de Valda facilitates groups for the Hearing Voices Network in Manchester, UK. In 1994, Mickey and his partner, possible, the groups need to be facilitated by voice-hearers. If Sharon de Valda, featured in a ground-breaking video called a professional person starts up a group, to get it going, then it ‘Mad, Bad or Sad’ shown on BBC 2. Mickey can be contacted is often possible to identify a voice-hearer or two who, with c/o HVN, 91 Oldham St, Manchester M4 1LW, UK. Tel: 44- training and support, could take over this facilitation. Once (0)161-834 5768. Fax: 44-(0)161-834-5768. Email: these voice-hearers begin to emerge from the group, the [email protected] professional facilitators can support them, try to find them access to that training, etc. We are just ordinary people and we may never have run groups before, so we need the training just as others do. But if professionals are willing to stand out of the road, to take a back seat, to relinquish their professional position and to support us, then this is a way to give voice- hearers space to create the groups that are most meaningful to us. We often cannot do this alone. It requires partnership.

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 17

Partnership

by

Julie Downs 1

In this paper, Julie Downs (Co-ordinator of the National Office of the Hearing Voices Network) discusses the importance of thoughtful partnerships between those who hear voices and those who do not. Both the hazards and possibilities of these partnerships are considered, particularly in relation to matters of power, politics and control.

Keywords: partnership, Hearing Voices Network.

The work of the Hearing Voices Network is about investing family. It was some time after I started working for the network in people. Whether we’re talking on the phone or they are that a friend, someone quite close to me, began to hear voices. coming into the office, we are determined to see what people And because of the network I was able to support her without are capable of and to support them in achieving this. It has involving any doctor or local health professional. Between us been people like Mickey de Valda, Sharon de Valda and Jon we found ways to cope. She heard voices for four years but she Williams (see papers this issue) who kept the office going in has now been without them for seven years. While they may what we call the wilderness years, before we received funding return sometime in the future, this experience reinforced for me and support. To watch the changes they have made in their the message of the network, that there are alternative ways to lives, the training they do, the knowledge they have generated respond and to live with the experience of voices. about coping strategies and ways of living with voices has Recently, we’ve been increasingly speaking with been exciting and moving for me. parents about children who hear voices. Some parents call us It is especially moving because I hate the waste of life because they have realised that their child is hearing voices that is so common in the mental health system. Many people and they want to find them support, but do not want them who I know as vibrant and wonderful people, who I know as caught up in the mental health system. Others call us when friends, have been written off, locked up and seen as hopeless their children are already in the system and want help as to during some part of their life. Those of us who work with how to get them out. mental health survivors have seen such cruelty and waste of The irony is that the responses that make a difference life. It makes everyone who walks into our office all the more to people who hear voices are often relatively simple. important to us. Respecting people, enabling them to share their experiences Issues of mental health affect us all personally at some and coping strategies with others, and calmly assisting people time in our lives. If not ourselves then through friendships or through crisis times, is not costly or particularly complex.

The International Journal of Narrative Therapy and Community Work 18 2003 No.3 www.dulwichcentre.com.au One of the key aspects to the approach of the Hearing There are a number of reasons why these partnerships Voices Network is an awareness of matters of power and are important to us. The network is determined to train control. Voice-hearers not only struggle to control their professionals and it is therefore very helpful to understand the voices, but often they are very powerless in the mental health constraints within which professionals have to work. What is system. Sometimes they are not respected and nor do they more, if we had not chosen to work in partnership, if the have a say about their treatment. I don’t believe that you can network had stayed exclusively focused on survivors’ give someone their power back, but you can create a context experience, then all the knowledge that the Hearing Voices in which people have access to information. We can also Network has accumulated would not have been shared with ensure an environment free of judgement and condemnation. workers and professional practices would not have changed as And, importantly, we can link them up with others who have much as they have. It is also a question of values. The had similar experiences. Some people can become so isolated network explicitly values people. We value people who hear through their experiences of the mental health system that voices and we value professionals. And we also value people they need to re-learn how to communicate with others. The who are professionals and hear voices. Hearing Voices Network self-help groups enable this; they This works well for us, but there can be hazards in are groups in which people who hear voices support each developing partnerships. There can be a fine line between a other through listening to each other and finding ways to professional being caring and being patronising. And there cope. Within the network, people are doing this for themselves can be a fine line between offering assistance and being and it is all the more precious for this. When people struggle controlling. When professionals are involved in facilitating for and achieve a place that is precious to them, it makes life groups they have to be careful and keep in mind that the more meaningful and they begin to regain their power. group belongs to the members, not the facilitator. It is also very important that confidentiality is fully respected. Partnerships Having said this, professionals can be a real asset to a group, because running groups takes certain skills and Having said this, the Hearing Voices Network is also experience. There are definitely skills involved in helping very much about developing partnerships between voice- others to get groups started and to ensure that they are hearers and professionals. In fact it was through a partnership sustainable. Professionals can help others to develop the between Dutch psychiatrist, Professor Marius Romme, and necessary skills and help with many practical details, finding Patsy Hage (one of his patients who heard voices) that it all a room, funding postage, access to photocopying, etc. began (see box on pp.20-21). One day Patsy said to Marius, ‘Why is it that you believe in God that you cannot see, or Questioning professionalism hear, and yet you will not believe in the voices that I hear everyday?’ In seriously responding to Patsy, Marius Romme Working in this area brings broader questions, a started to question what he thought he knew and began to questioning of some of what is upheld as professionalism, and listen and respect the experiences of voice-hearers. He also especially what are referred to as ‘boundaries’. It is certainly began to bring them together to speak to each other about the important to find ways of functioning that are sustainable as a voices and how to deal with them. worker, but sometimes in this work the key priority is to help Since those initial conversations between Patsy and someone through a crisis. Sometimes people’s lives are on the Marius, the Hearing Voices Network has continued to believe line during a serious mental health crisis and a decent human that partnerships between people who hear voices and those response is to do all you can to help them make it through. If who do not are vital. I work as The Hearing Voices Network a notion of professional boundaries is going to prevent a life- Co-ordinator at our National office in Manchester. As saving action then the boundaries have to be questioned. someone who does not hear voices, there are certain I have learned a lot through my work with the Hearing administrative roles that I can take on that free others up to do Voices Network. I have learned about control and trust. It is training or talk to other voice-hearers on our help-line and run very easy as a professional to feel the need to ensure that self-help groups. Within our office we know that everybody things are done according to your own standards and in your has an equally valid and valuable contribution to make. way – that if things are not done your way it will not be done

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 19 correctly. But there comes a time when you learn to let go, you have to trust the people you work with. Letting go does The influence of the work of not mean that you stop being supportive, but it means you Patsy Hage, Marius Romme and have to let people get on with things in their own way. It means really looking at yourself, being honest with yourself Sandra Escher and truly aware of how you are relating to people. It is the relationships with people that really matter. In my own case, it matters that relationships are strong and The first UK Hearing Voices Group was formed in 1988 in honest, so that for example I can ask Mickey or Sharon or Manchester. It was inspired by the work of Marius Romme and Jon, ‘Am I getting on your nerves?’, and they can tell me if Sandra Escher from Maastricht University in the Netherlands they think I am being paternalistic and if it would be good for and a Dutch self-help group, Foundation Resonance. In some me to back off for a while. ways, the origin of the work of the Hearing Voices Network can be traced back to the partnership between voice-hearer A place for everyone Patsy Hage and Professor Marius Romme. Many consider Patsy Hage to be the ‘founder’ of the The Hearing Voices Network is determined to create a Hearing Voices movement. It was Patsy’s insistence that Marius Romme take her experience of hearing voices space in which everyone can be included, a space from which seriously that was the impetus for ground-breaking research no-one is turned away. It is vital that people have a place to conducted in the Netherlands. go where they can feel that they will not be judged. I indeed met Marius (Romme) many years ago when I was Sometimes in the self-help groups there will be shock and in a difficult situation. I didn’t like my voices then, I was horror about the ways in which people have been treated by very afraid of them and Marius as a social psychiatrist other people or within institutions, but there is never any was willing to talk with me. It was about a year before I shock and horror about anything people may have done as could explain … It took me a year to convince him … [that individuals. Some people who hear voices live with powerful my voices were] … a reality for me, and I must fight them. personal guilt about things that have happened in the past and (Hage 2003, p.3) the network is determined to provide conversations where they can build upon small steps, small things about which Marius Romme was willing to listen. Apparently, this they are proud. In creating an inclusive place we try to think following statement of Patsy’s made a difference: You believe in a God we never see or hear, so why through issues of race, class, sexuality and gender. For shouldn’t you believe in the voices I really do hear? instance, we have recently created a group solely for women (Patsy Hage quoted in James 2001, p.31) voice-hearers. While this is in its early stages, we are hopeful about what these women may achieve. The first hearing At Patsy’s urging, Marius Romme began to listen voices network for people who are deaf has begun in London, differently to the experience of voice-hearers, and as a and in Manchester we have initiated a group in Cantonese and consequence decided to create opportunities for people to also a group for gay people. come together to talk about the voices, their effects and As I said at the beginning of this talk, the Hearing Voices tactics, and the ways in which voice-hearers were trying to Network is an investment in people. It is an antidote to the terrible understand their experiences and cope with them. waste of life that so often accompanies mental health crisis. In conjunction with Sandra Escher, Marius Romme It is a network of people of which I am proud to be a also decided to conduct research into the experience of member. hearing voices and this research turned conventional psychiatric understandings on their head …

[In the course of our research] … we met a considerable Note number of men and women who heard voices but had 1. Julie Downs is the Co-ordinator of the National Office of the never been psychiatric patients nor considered themselves Hearing Voices Network (HVN), Manchester, UK. Julie can be mentally ill. Nor, for that matter, were they seen as contacted c/o HVN, 91 Oldham St, Manchester M4 1LW, UK. Tel: 44-(0)161-834 5768. Fax: 44-(0)161-834-5768. Email: mentally ill by their family and friends. When we first met [email protected] these people … we were quite astounded because, like

The International Journal of Narrative Therapy and Community Work 20 2003 No.3 www.dulwichcentre.com.au most psychiatrists and indeed mostly lay people, we were The primary aim of our approach is to make explicit the used to regarding people who hear voices as mentally relationship between individual history and the voices. In distressed. We were forced to change our ideas when we other words, to take it out of the realm of psychopathology were confronted with well-balanced, healthy people who and put it into the context of people’s life-problems and simply happened to hear voices; voices which were not their personal philosophy. This is quite liberating … Our heard by those around them, and which they experienced secondary aim is to demystify the voices. Hearing voices is as coming from outside.’ (Romme & Escher quoted in an unusual experience, but not one that require an British Psychological Society Division of Clinical extraordinary explanation. People need to build up a Psychology 2000, p.13) relationship with their voices … It has helped us to demystify the voices, but not take them any less seriously. (p.10) The research of Romme & Escher has continued and three years ago they published the highly respected resource Clearly there are a range of ways in which this work of Making Sense of Voices: a guide for mental health Romme and Escher fits well with narrative therapy practices in professionals working with voice-hearers (2000). Their this area (see White 1995; Brigitte, Sue, Mem & Veronika 1995; research work has involved developing a thorough research Sue, Mem & Veronika 1999). Indeed these links are made by questionnaire that many of those within the Hearing Voices Romme & Escher (2000, p.87-89). There are also some ways in Network believe to be a helpful starting point to therapeutic which the work of Romme and Escher is significantly different conversations. This questionnaire elicits a thorough account from re-authoring or narrative practice, however, particularly in of each voice-hearer’s experiences and history including: relation to the process by which the researcher/practitioner • the nature of the experience creates a ‘construct’ that is used to analyse the relationship • the characteristics of the voices between hearing voices and person’s life history. • life history up to the onset of the voices The determination of Patsy Hage and the ground- • the circumstances of the first onset breaking research of Marius Romme and Sandra Escher have • triggers made significant contributions in enabling the work of the • the content of the voices Hearing Voices Network. • personal theory about the voices • the impact of the voices on the hearer References • the influence of the hearer on the voices • coping mechanisms Brigitte, Sue, Mem & Veronika 1995: ‘Power to our journeys.’ In • childhood experiences White, C. & Denborough D. (eds): Introducing Narrative • the social network of the voice-hearer Therapy: A collection of practice-based writings. Adelaide: Dulwich Centre Publications. • treatment history (Romme & Escher 2000, p.20) British Psychological Society Division of Clinical Psychology, 2000: Recent Advances in Understanding Mental Illness and Psychotic Their work has been influential in a number of ways. Experiences. The British Psychological Society. Firstly, it has shown that the experience of hearing voices is Hage, P. 2003: ‘Losing our voices: This week Patsy Hage.’ Voices not necessarily a sign of illness or for that matter distress. Magazine. Secondly, it has created momentum to encourage health professionals to seriously engage with people’s experiences James, A. 2001: Raising Our Voices: An account of the hearing of voices. Where once it was thought that to ask people about voices movement. Gloucester: Handsell Publishing. their voices was to encourage ‘delusions’ this is now Romme, M. & Escher, S. 2000: Making Sense of Voices: A guide for changing. Thirdly, links are being made between experiences mental health professionals working with voice-hearers. of trauma and hearing voices. A 1987 survey showed that London: Mind Publications. about 70% of respondents had had some traumatic experience Sue, Mem & Veronika 1999: ‘Documents and treasures.’ In which they connected with hearing voices (quoted in Romme Narrative Therapy and Community Work: A conference & Escher 2000, p.21). This in turn has significant collection. Adelaide: Dulwich Centre Publications. repercussions for therapeutic practice. White, M. 1995: ‘Psychotic experience and discourse: An interview As Romme & Escher (2000) describe, this work is with Michael White.’ In White, M.: Re-authoring Lives: inviting a different approach to the experience of hearing voices: Interviews & essays. Adelaide: Dulwich Centre Publications.

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 21

Altering the balance of power: working with voices

by

Peter Bullimore 1

Through sharing stories of therapeutic work, this paper describes how issues of abuse and power are vital considerations when working with voice-hearers. Not only is voice-hearing often the result of abuse, but voice-hearing itself can be an experience of abuse. Peter Bullimore describes how he is interested in ensuring that abusive voices are challenged and their influence reduced, and how positive voices can be acknowledged and cherished. The paper also tells stories of a recently established group for people experiencing ‘paranoia’ that is having surprising success, and identifies significant factors that influence the process of recovery. The author also shares some of his own experiences of psychosis and how these influence his work in this area.

Keywords: Hearing voices, psychosis, schizophrenia, therapy, abuse, paranoia, Hearing Voices Network.

Those who are referred to me are often people no-one else people who are not talking themselves, I share stories from will see, who have fallen through cracks and who don’t have my own experience. I speak about how I went through a access to conversations any more. People stopped listening to period of abuse and that I heard voices and that I spent the them long ago or, alternatively, they stopped talking. best part of ten years in the psychiatric system. I try to Sometimes not talking makes sense, especially if everything highlight the theme that the person I am seeing is not the only you’re likely to say is going to be pathologised and taken as one. I think it often makes a real difference that they know I another reason to increase your medication. These are the have stood in the place they are now. people with whom I most wish to work, because I know what In meeting with someone who is hearing voices, I am life is like when hostile voices are raging. really interested in asking the question, ‘What do you want For me, the first step in counselling is to befriend the with your life?’ We explore what the person has done in their person I am talking to. I don’t mean patronising them, I think life, what haven’t they done, and what they want to do. We there is a big difference. Often, especially when meeting with also create a profile of the voices.

The International Journal of Narrative Therapy and Community Work 22 2003 No.3 www.dulwichcentre.com.au I worked with a lad, Alan, in a drugs rehabilitation of course we talk about this together. In this instance, centre who was only twenty-one and affected by drug induced I thought a lot about the voice that Alan was hearing. In psychosis. Alan was into anything and everything that he considering its content, I believed that, with some work, this could get his hands on. When I went to see him I asked him could become a positive voice. I asked Alan about the age of some questions so that he could tell me about his life. I the voice, and he said, ‘I think it’s about sixty, it sounds like wanted to know about him and what he’d been through. Alan an old man’. So I said, ‘Right, who is an old man you trust told me that he had begun to smoke cannabis and drink beer and you like?’. Alan thought about this for a while and said, when he was ten years old. This seemed pretty young to me, ‘Well, perhaps my nextdoor neighbour, my pal’s granddad. so I was keen to hear what was happening for him at that He used to roll us cigarettes and offer us cans of beer. He was time. Alan told me that he’d been significantly bullied at a nice bloke’. So I said, ‘Could the voice be his?’. And Alan school until one day he hit one of these bullies over the head said, ‘No, I couldn’t make the voice his, because he wouldn’t with a bounders ball and put him in intensive care. This had say these things to me. I like him and I trust him.’ And I said, terrified him Alan. He had thought this other young man ‘But the things he is saying, do you think they could be would kill him when he came out of hospital, and this was warnings? Do you think they could be well-intentioned?’. when his smoking and drinking began. When I asked Alan We tried to look analyse the content. ‘Right, stay sat on your what had happened when the other young man had recovered, arse where you are and die’ – what could this mean? ‘What’s he told me that nothing had happened. The other young man the eventuality if you keep doing what you have been doing? had not retaliated. I was at a bit of a loss to see how this then If you stick with the drugs, you’re going to die, you’re going led to heroin and crack use, until Alan said that while this to be a junkie. That’s sounds like a warning to me. He’s other young man didn’t do anything to him, from that moment telling you to get your shit together and get out of here. Finish on it was like he was always around. Initially, I thought that the rehab and get on with your life. What do you think? Could Alan meant that he was stalked and watched him, but then he that be true? Could that be a positive?’ And Alan thought said, ‘No I don’t mean that, he was always in my head. I could about this and agreed. Then we spoke about the second hear him all the time saying what he was going to do to me.’ phrase: ‘Or go out into the world and take a shot and die’. Alan had started hearing this voice at age ten and because of When we talked about this we realised that ‘take a shot’ could it he began to take drugs to cope. Whenever Alan was clean refer to taking a shot of heroin, or getting shot in relation to a the voice came back, and when I first saw him he was hearing drugs deal gone wrong. We agreed that there wasn’t much many different voices. hope in either of these paths and that again the voice could be In my experience, whenever someone is hearing a lot a well-intentioned voice of warning. What then were other of voices, maybe even up to thirty or forty, the best thing to options for action? When I asked Alan what he wanted to do do is to identify the dominant voice and work with this to with his life, he said, ‘I wanted to be a carpenter, I loved it, begin with. Alan’s dominant voice was the voice of an older I’m fantastic at woodwork’. So I went to Sheffield College man who would scream at Alan throughout the night, keeping and explained the situation and they said I could enrol him in him awake. So we began to work with this dominant voice. a carpentry course as long as he was clean of drugs. I actually I asked Alan if he would be interested in looking at the thought to myself that that would be interesting, he’d probably content of what this voice was saying. Apparently, this voice be the only student not smoking dope, and I wondered how was screaming, ‘Stay sat on your arse where you are and die – this might stigmatise him! or go out into the world and take a shot and die’. This voice Alan and I kept working together and writing out our had convinced Alan that he was going to die, that there was discoveries. We established that this voice was a warning: no point in going on. that he needed to get his act together and get out into the There are two ways in which I work with voices. world. When I told him about the carpentry course, Alan Either a voice can become a friend, someone to work with in realised there was another possible meaning to the phrase reclaiming a life; or a voice may be a foe, an opponent, whose ‘take a shot and die’. Perhaps it meant that Alan was going to influence needs to be reduced. Because I have my own go out into the world and give it his best shot even if it kills experiences of voices, I try to work out what may be possible him. He’s now enrolled at Sheffield College. I still have with a particular person’s relationship with their voices. And contact with his mother and she tells me that he’s now in his

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 23 third year. Alan still hears voices but sometimes now he hears her dad every Friday night through loyalty, but he was always a woman’s voice who he can trust. He works hard at figuring drunk on that particular night of the week and he frightened out and changing the meanings of the content of the other her. First of all we looked at the cult. Francine said that she voices. It might take him hours but he says it’s worth it went to their meetings on Sunday nights because she was because he no longer fears them. bored and had nothing else to you. So I asked her if she liked to drink and she said ‘Yes’, so I suggested we went for a drink on Sunday nights instead. We started having a drink Reclaiming control socially on Sunday nights and I’d invite other group members along so if I wasn’t there she was still able to go out. After The experience of hearing voices is all about power, some time, when I had gained her trust, I asked Francine, but I never tell people to try to get rid of the voices. If ‘Why don’t you go visit your dad on another night?’ and she someone is being tyrannised by a particular voice then it is decided to go on a Tuesday when he’d be sober and more the experience of tyranny that needs addressing. Over the last receptive. This took away two major stressors from fifteen years, it has been recognised that sexual abuse and Francine’s life. physical abuse are all about power. If you’re sexually abused, We also needed to look at the issue of self-harm. you’re offered counselling. If you’re physically abused, Francine, like many people who hear negative voices, was you’re offered counselling. But if you’re verbally abused by harming herself when the voices were ordering her to do so. voices you are given medication and there is rarely any Francine is very attractive, and had never cut her face. I was consideration given to relations of power. So often, the voices interested in this, particularly as I have a scar on my face, so that people hear are the voices of those who have physically I asked her about this. I asked if the voices ever told her to cut or sexually abused them. These matters need addressing. her face and she said ‘Yes, quite regularly’. When I asked her Ways must be found for people to reclaim control over their why she never obeyed them, Francine replied, ‘Well, I like own lives. my looks’. We discovered that whenever the voices told her Let me offer another example. Francine is a young to cut her face, she would cut her arms. In talking together we woman who was severely physically abused by her father. He realised that the particular type of cutting that she was doing broke her arm, her leg and her ribs. At fourteen, her father left was actually making a stand against the voices. They were not and her mother would then ring him up and get Francine to being able to dictate her life to the same extent that she had pass messages to him – they insulted each other with Francine thought. These are important distinctions – particularly for in the middle. Francine overdosed at fourteen and stayed in an people who are hearing voices that overwhelm them. If we adolescent unit for two years before being moved into an can find the examples of the ways in which they are able to adult unit. The drugs weren’t working and she wasn’t make their own choices, no matter how small, then these can complying so she was labelled as having a personality be openings for new sorts of lives. disorder. Her mother asked me to go and see her, so I did. It was not simple though, because people whose trust Again, to begin, I simply asked Francine some has been regularly betrayed often need to know that you are questions so that I could get to know about her life, and she going to hang around. Francine rang me at 3 o’clock one told me the history of what had happened to her. At that time, Sunday morning and said she was going to kill herself. I had Francine was hearing two voices. One was what she believed to get to the other side of Sheffield to see her and I’d had to be the voice of God saying ‘Only I am keeping you alive’. quite a lot to drink myself that night. But I made it there and And the other she believed was the voice of the Devil saying, I sat on the settee with her till half-past five. I couldn’t tell ‘God’s only keeping you alive to be tormented’. She was you anything that she said because I’d had too much to drink, hearing these statements over and over again and had got to a but at half-past five she said, ‘You can go now because I feel point where she believed there was no point in living. better’. This was a turning-point between us. She realised As Francine told me about the story of her life, it I wasn’t just a worker who would be there from nine-to-five. seemed to me there were a few key themes. Firstly, she was Up until this time we had not talked in detail about involved in a cult that told her she was possessed and in Francine’s voices, but now we did. At first, I didn’t really which she would talk in tongues. And secondly, she visited know what to do with the God/Devil thing. I started by asking

The International Journal of Narrative Therapy and Community Work 24 2003 No.3 www.dulwichcentre.com.au Francine about her religious beliefs and she said she didn’t answers to David herself without mentioning that they were really know what she believed. So I said, ‘Well, bearing in coming from me. When this had happened a few times, we mind you’ve been involved in a cult, would it be okay if we stopped and I pointed out what had happened. I asked Francine, just took God out of the equation? Or are you a true Christian ‘Just a minute ago, what happened when you give him that who says God rules?’ And Francine said, ‘Well, I’m not other answer?’ She said, ‘Nothing’. So I said, ‘How did you bothered, we can take God out of the equation.’ And so we feel?’ She said, ‘I felt alright’. I said, ‘Do you realise what scribbled God off the sheet of paper we were working with. this means? You’ve now challenged David and nothing terrible Then I said, ‘Well, if you’re happy to take God out of the has happened. We can do more of this.’ This was the beginning picture, the Devil’s supposedly a fallen angel, so how about of Francine developing a different sort of relationship with we remove the Devil too?’ Francine said she was happy to her voices. One in which she could speak back to them, one in look beyond the religious aspects, but the statement itself which the balance of power was changing. really mattered to her – was she only being kept alive to be Once this had occurred, we could then take steps in tormented? life-building. Francine wanted to do a humanities course in In my experience, it’s vitally important for people to English, Law and History. So, I travelled to Sheffield College be able to give their voices an identity. So I asked Francine, again and enrolled her. As she took up this new life, her self- ‘This voice that says these things, it needs a name. Give me a harming became much less frequent. Some time down the man’s name’. And like lightning, before I even stopped track I asked her about this and she told me that the only day saying the sentence, she said ‘David’. When I asked Francine on which she was self-harming now was on Tuesdays. I had who David was, she said ‘I don’t know’. And that’s what never heard of such scheduled self-harming so I asked her everyone says when you first ask them that question. So I asked more about this, and Francine said, ‘Well, every other day of again, ‘Come on, who’s David’. This then went on for quite a my week is now busy. But on Tuesdays I’ve got all day to while because I was determined to find the story that related myself and I just listen to David and do what he says.’ Her to the name David. Who was this David that meant she would cutting was quite serious on her arms and legs, so what I give the voice his name? Eventually, I heard that David was a suggested to Francine was that I could set her homework to lad at school who Francine had known when she was fourteen. do on Tuesdays. I was quite strict about this and I set it up so David had wanted to have sex with Francine, and when she that she would bring me each week the homework she had wouldn’t he would beat her up. I heard that Francine got completed on Tuesday. This hasn’t completely stopped the beaten by her dad and beaten by David. Eventually David self-harming but it’s now only happening about 30% of the tried to rape her, but didn’t succeed. time that it was. Like Alan, Francine hasn’t got rid of the So I said, ‘Okay, what we’re going to do is we’re going voices, but her relationship with them has changed. The to make the voice David’s’. And she says, ‘No, no, I’m too balance of power has been altered and she is living a scared of David’. She’d made peace with her dad over the completely different life. years but she was still frightened of David. So I said, ‘I’ll tell you what we’ll do. We’re going to challenge David. We’re going to challenge the content of everything he says. I’ll tell Positive voices you what to say to David and then we’ll see what he says’. But she wasn’t happy about this either. She said she simply It’s important to remember that some people also couldn’t speak back to him. So we took a different tack. experience benign or even positive voices and they are clear I said, ‘I’ve got another idea. I’ll give you the things to say that their life would be worse without them. A friend of mine to David, but you tell him that I’ve said these things. You tell even has a voice that tells him how to cook! Seriously though, him, “Pete’s told me to say this”.’ I worked with a lad in a forensic unit who had a positive So we started having a conversation in which Francine voice called Caroline. He cared for Caroline and in fact even would tell me the things that David was saying, and I would fell in love with her. While she obviously didn’t exist, she give her responses that she would relay to him. Gradually in was a great support and he was going to marry her when he this conversation I would give the answers a bit quicker until got out of the unit. He had five voices, many of who were eventually she got to the point where she just gave the threatening to kill him. We worked together so that Caroline

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 25 became the dominant voice. Over time, her status and her turned out to be a completely different clientele, including a power increased to such an extent that she could challenge the policewoman who’s never been within the psychiatric system, other voices. Caroline would say to him, ‘Don’t worry, I’ll and a guy who hadn’t previously been out of his house for sort them out’. three years. The diversity in the group is fantastic. It makes a This had been going very well until it was explained to real difference that some members of the group are used to his psychiatrist. When the psychiatrist was told that the other being a part of the mainstream community as they are able to voices didn’t bother him any more but that he wanted to keep offer significant support to some of the other members for Caroline because he was going to marry her in the future, his whom paranoia can be totally debilitating. In the group medication was dramatically increased. When I next went to meetings we are looking at problem-solving and coping see him he was just laying on his bed drooling. This undid all strategies. We’re talking about warning signs and triggers and the work we had done together and I had to stop going to see the knowledges and skills that people have developed to him. He had no power of speech under the new drug regime. respond to these. This was the reaction to a benign voice, a friendly voice, and There is one woman in the group, Julia, who talks I found this very sad. about how she always thinks her neighbours are talking about her. In one of the meetings Julia mentioned that she had done a lot of gardening on the previous weekend. I said to her, The Paranoia Group ‘Well, it was a lovely day wasn’t it – I bet there were a lot of people around’. And she replied, ‘Oh yes, all the neighbours On a more positive note, we recently decided to run a were out, some were having a barbeque’. When I asked Julia group for people who experience paranoia. Now, of course, how long she was gardening for, she said about three hours, this was always going to be a bit complex and many people and so I asked her, ‘In those three hours, did you think other said to us that it wouldn’t work because of the nature of the people were talking about you?’ And she said, ‘Well, come to experience. We decided we would run the group in an old think of it now, I didn’t’. We went on to explore why this school building that is used for training sessions related to was, and we heard Julia describe how doing the gardening, learning disability. It was significant to hold the meeting in a focusing on the plants and on the small details, meant that she place not associated with mental health issues, a place where was free from paranoia during that time. This is one of the people entering the building could just as easily have been things we do within the meetings, try to explore the times workers as people attending a group. We booked a room and when the group members are free from the effects of sent out a flyer advertising a paranoia group for support and paranoia, and what it is that enables this. education. A colleague said to me that they thought calling it In the group we also try to assist people to discern a paranoia group was too direct, but I couldn’t imagine what are the effects of paranoia and what might be quite calling it anything else. realistic concerns. Emily is a young lady with learning Going into a group for the first time can be pretty disabilities who lives in her own flat. She has lived a very nerve-wracking for anyone, so we tried to make this as easy isolated life and, when she complained that the neighbours as possible. On the flyer we included a contact number. When were talking about her, she was diagnosed as paranoid people would ring up I’d give them details of the venue and schizophrenic and given medication. When she came to the was very clear about what was going to happen in the first groups we asked whether she had checked out whether the meeting. I’d explain that it was going to consist of an neighbours actually were talking about her. The world can be introductory workshop on ‘what paranoia means to you’. cruel sometimes, particularly to people with learning I also gave people the option of meeting me or Chris, the disabilities. People often do talk negatively and critically other facilitator, on a day before the group so that they could about other people. We suggested that Emily could ask her get a feel for how things would be. worker to come around and listen, to check it out. We put together a ten-week program and at the first One of the key difficulties for people with paranoia is meeting eleven people turned up. There are now thirteen travelling on buses, because they believe everyone on the bus people regularly attending. I had thought we might see the will talk about them. If bus travel is not possible, then it is same people who attend our Hearing Voices Group, but it has highly likely that they will become increasingly isolated. We

The International Journal of Narrative Therapy and Community Work 26 2003 No.3 www.dulwichcentre.com.au spend quite a bit of time developing strategies for bus travel. If your housing is in an area where all the people are negative; Some people find it helpful to go on a bus with another if you’ve got kids banging on the window because you appear person to check things out. When they then ask, ‘Is everybody a bit different; if people are slamming your letterbox; if talking about me?’, the other person can listen and either you’re sleeping on the floor with a jumper as a pillow; or if confirm that everyone is indeed looking at them and talking your home is a place of harassment and abuse, then it will be about them, or they can clarify that this is not happening. virtually impossible to get well. Safe housing is something Some people have developed other strategies, perhaps they I pay a lot of attention to. A second fundamental requirement won’t get on a bus if it is full, but they will if it is only half for recovery is to be believed and still accepted. If you are full. We have tried to assist people in their travels. We ask having very unusual experiences it is vital that someone what might make it possible for them to ride on a bus, believes your experiences and builds friendship with you. perhaps it’s taking it one day at a time and only getting on for And the third fundamental requirement for recovery is a job. very short distances. Perhaps it is travelling with three It doesn’t necessarily have to be paid employment but you friends. have to be doing something, achieving something, if you are The one thing that we are consistently hearing is what going to be able to recover. a difference it makes to have other people to talk to about these experiences. One man turned up to the group and it was the first time he had been out of his house in three years! My own experience What’s more, he caught the bus to get there. This was highly significant to me – that simply knowing there was a place he As I do this work, I continue to explore ways of could go to talk about paranoia, where I guess he thought dealing with the voices that I still hear at times. While I don’t there was a chance he would be believed, made such a like the word, I do know that I’ve had my periods of difference. This man needs the most support in the group. At ‘madness’. Looking back on this can sometimes be humorous. times he gets really stressed. When he is speaking he might I remember when I was in a psychiatric ward deciding to suddenly say, ‘Why is everybody staring at me?’ and we need evaluate my own life. I got up one morning and thought to to explain that that is what happens when you’re talking in a myself that I used to employ nine people and not one of them group. People will turn to look at you. had been to see me, so perhaps, I reasoned, they were my Recently, we held a social evening for everyone in the disciples and they’d all betrayed me! Leading up to my initial paranoia group and everybody enjoyed meeting up. The breakdown I’d had an out-of-body experience and thought isolation that is so often a consequence of paranoia is I was dead. So suddenly, I came to the conclusion that I’d gradually diminishing. died at the time and had been resurrected. Obviously, I was Jesus Christ! We all say that you’re not a fully paid-up member of the psychosis club until you’ve been Jesus. Recovery Anyway, when I thought about what I should do with this information, I decided to go to Sheffield Cathedral because The Hearing Voices Network is trying to redefine you can’t get any higher than that – at least in Sheffield. As recovery. For years psychiatry has encouraged the treatment I approached the Cathedral I thought, ‘If they realise I’m of voices with drugs. Take these drugs and they’ll get rid of Jesus they’ll crucify me, so I must have a last supper’. So I the voices. Now it’s true, if you’re sleeping twenty-three headed to MacDonalds and had a sausage and egg MacMuffin hours a day due to medication you won’t hear voices. But if for my last supper. you stop the drugs the voices will come back. We believe that Finally, I walked into the Cathedral. I’ve not been recovery can be defined not by the absence of voices but by there since, but at the time there was a pulpit facing the front whether someone has found ways to live with the voices with and a pulpit facing the right, which was where the priest was a quality of life that’s acceptable to them. performing a service to some pensioners. I was watching this While dealing with the voices themselves is a when a guy stopped me and asked me what I wanted. I said to significant aspect of recovery, there are other key issues. The him, ‘I’ve come to show myself to the Bishop’. This man told most fundamental single requirement for recovery is housing. me that the Bishop wouldn’t be able to see me at the moment

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 27 because he was busy doing the service. But then this foolish man just left me to my own devices. So I ran and jumped up Further reading on coping beside the Bishop. He never saw me coming, got a terrible shock, and actually shouted out ‘Christ Almighty’, which was with voices and visions fantastic. ‘He recognises me’, I thought. He had to stop the service and the guy who had spoken There are now available a range of helpful publications in to me earlier came running down to me as well. We had a relation to the experience of voices and visions and ways conversation within which one of them said, ‘Have you ever of dealing with these. We’ve listed some of these here: been in a mental health institution?’ So I said, ‘Well yes, but what’s that got to do with anything?’ He said to me, ‘Well, Publications from the Hearing Voices Network I’ve started a group for people with mental health problems. - ‘Basic information about Hearing Voices.’ Compiled and It will get going in November – would you like to come?’ So edited by Julie Downs and Chris Stirk. Hearing Voices I said, ‘Yeah, okay’. The thing is, perhaps he meant Network Publication, 2003. November 2005 because I’ve never heard from him since. - ‘Coping with voices and visions.’ Edited by Julie Downs. This was quite some time ago, and I now look at my Hearing Voices Network Publication, 2001. voices as warning signs. I understand that they are telling me - ‘Starting and Supporting Hearing Voices Groups.’ Edited by to slow down – not directly mind you, they are not as polite as Julie Downs. Hearing Voices Network Publication, 2001. that. They will say negative and perhaps cruel things, but now - Voices Magazine. Produced regularly by the Hearing when they start up I know that it means I need to take things Voices Network, UK. Email: [email protected] easy for a while. www.hearing-voices.org.uk

I always have a bit of a setback around the time of year Other relevant publications that my mother died, which is also close to mother’s day. - Asylum Magazine: the magazine for democratic Usually I’m a bit off the rails at that time of year. But this psychiatry. See: www.asylumonline.net year, I predicted it. I said to the voices, ‘I know you’ll be - The Reality of Voices: ‘Auditory Hallucinations’ by Sue coming around soon to give me a hard time, and that’s going Gagg Australian and New Zealand Journal of Family to remind me to put some flowers on my mother’s grave. Therapy, Vol. 23 # 3 September 2003 You’re going to help me remember.’ - Materials from the first ever Hearing Voices Network There are all sorts of ways to live with voices. Today Conference held in London on 10th April 2003: I have shared stories of Alan, Henry and Francine, as well as http://www.virtuall.org/programmes.asp# my own. I hope I’ve managed to convey that of vital - Making Sense of Voices: A guide for mental health consideration in this area of work are issues of abuse and professionals working with voice-hearers, by Romme, M. power. Not only is voice-hearing often the result of abuse, but & Escher, S. 2000. London: Mind Publications. voice-hearing itself can be an experience of abuse. I’m interested in ensuring that abusive voices are challenged and Narrative therapy and hearing voices their influence reduced, and how positive voices can be - ‘Psychotic Experience and Discourse: An interview with acknowledged and cherished. Michael White.’ In White, M. 1995 Re-authoring Lives: Interviews & Essays. Adelaide: Dulwich Centre Publications.

- ‘Power to our Journeys’ by Brigitte, Sue, Mem and Note Veronika, in White, C. & Denborough D. (eds) 1995 1. Peter Bullimore facilitates groups and conducts therapy for the Introducing Narrative Therapy: A collection of practice- Hearing Voices Network, Sheffield, UK. Peter can be contacted based writings. Adelaide: Dulwich Centre Publications. c/o Sheffield Hearing Voices Network, Limbrick Day Service, - ‘Documents and Treasures’ by Sue, Mem and Veronika, in Limbrick Road, Sheffield S6 2PE, UK. Tel: 44-(0)114 - 271 8210. Narrative Therapy and Community Work: A conference Email: [email protected] collection. 1999. Adelaide: Dulwich Centre Publications.

The International Journal of Narrative Therapy and Community Work 28 2003 No.3 www.dulwichcentre.com.au

These are not ordinary lives

The report of a mental health community gathering co-ordinated by the

ACT Mental Health Consumers Network 1 & Dulwich Centre, Adelaide 2

This paper contains the stories, skills and knowledges that were described during a two-day gathering for ‘consumers’ of mental health services in Canberra, Australia. This gathering was preceded by detailed consultations that were shaped by narrative therapy ideas and the gathering itself was organised and structured around a series of definitional ceremonies. This led to the rich description of participants’ unique knowledges of illness and healing; their appreciation of healing contexts; their connections with each other; their connections with families, friends and pets, and their connections with service providers. Space was also created for the articulation of the skills and knowledges associated with embracing different hopes, values and ways of living. This paper records the stories that were told on the gathering in the hope that these will be of assistance to others.

Keywords: mental health, narrative therapy, community gathering.

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 29 In response to an initiative by the ACT Mental Health came from the consultations that had been held over the Consumer Network, over the early months of 2003 a number previous six months. of consultations took place with consumers of psychiatric A listening team was present at the gathering.4 It was services in Canberra.5 the job of this listening team to carefully note the important These were consultations about: knowledges and skills spoken about by the people at the • some of the problems and worries facing consumers, gathering. • the strengths and resources in the community, • the problem-solving skills of people in the community, and Stages of the gathering • the special knowledges about life that people in the community have. The gathering was shaped by a four stage ‘definitional ceremony’ (White 1995, 1999) process that occurred each From these consultations it became clear that those morning and afternoon: consulted already knew a lot more than they sometimes 1. The people of the community met in a large group. realise. There are strengths, resources, problem-solving skills, Representatives of the group introduced the theme for the and special knowledges about life that exist within this morning or afternoon, and shared some stories that fitted community. From these consultations, and again at the with the theme that had been chosen. request of the ACT Mental Health Consumer Network, a two-day gathering was designed (for further information 2. People then went into smaller groups and talked about some about the ideas that influenced the consultations and the of their own stories that fitted with the theme. A person from shape of the gathering see White 2003). the listening team was at each of these smaller meetings. The following themes were drawn out of the 3. People then met again in the large group, and the listening consultations and then shaped the discussions that took place team retold some of the stories that they had heard in the at the gathering: smaller groups. The listening team focused on the special 1. Our unique knowledges of illness and healing. knowledges and problem-solving skills that were heard in 2. Our appreciation of healing contexts. these stories. 3. Our connections with each other. 4. Our connections with families, friends and pets. 4. In the large group, people then talked about what they had 5. Our connections with service providers. heard from the listening team that got their attention. 6. Embracing different hopes, values and ways of living. While it sounds simple, this telling and retelling of Each of these themes described an area of the stories is a very powerful thing to do (see further writings on community members’ knowledges that had been articulated definitional ceremonies: White 1995, 1999; Russell & Carey during the consultation process. At the end of each theme a 2003). Through this process, those at the gathering began to series of questions was listed with the aim of sparking further develop a much stronger and much richer understanding of conversations that would lead to even richer descriptions of what they already knew. As well as this, people also began to the community members’ knowledges and skills. have lots of ideas about how this knowledge could be put to work on the problems and worries of the community. About the gathering Documenting the gathering The gathering was an opportunity for people to tell stories and to talk about some of their important knowledges With the permission of the community, many of the and skills. This was an opportunity that was warmly embraced stories and knowledges described during the gathering have as approximately 50 community members took up the invitation been collected and written up in this paper. This report and attended the gathering over the weekend of 17-18th May 2003. belongs to the community, and has been made available as a Each morning and each afternoon a thorough permanent record of the gathering and of the knowledges and discussion was held about a particular theme. These themes skills of the community.3

The International Journal of Narrative Therapy and Community Work 30 2003 No.3 www.dulwichcentre.com.au As well, again with the permission of the community, misunderstood and is seen in a negative light by others who during the gathering some of the words and stories were do not realise that this has to do with our determination to written into songs that were sung and recorded at the find a way forward despite how bad we are feeling, with our gathering. These recorded songs will also act as a permanent outrage over experiences of injustice, and with our frustration memory of the event and of the spirit of the gathering. over not being heard. When this bloody-mindedness is understood, and honoured for what it means, this contributes About this paper very significantly to our healing.

The following pages describe each theme of the • Do these descriptions of special knowledges (reading the gathering, the community members’ responses to these signs, knowledge about medication, knowing when to themes, and the listening team’s retellings. The paper walk away, how to make connections, bloody- concludes with the lyrics of the songs that were written, mindedness) ring true to you? rehearsed and recorded during the gathering. We hope that this paper conveys the rich knowledges • Are there other special knowledges of illness or of and skills that those facing mental health difficulties regularly healing that are significant to you? and routinely display in their everyday lives. It has been our • What difference would it make if people honoured these experience at the ACT Mental Health Consumer Network, skills and knowledges that you have gained through your that having opportunities to talk about and acknowledge these experience? skills is significantly helpful in addressing the ongoing challenges we face.

Responses to this theme

Theme # 1: Our unique knowledges Early on in the day, some people spoke about how of illness and healing simply being at the gathering was an achievement. Some of us had to stand up to fear in order to attend. We had to refuse to We have become quite good at reading the signs of illness, allow fear to block our participation. In the small groups some and often know when we are about to lose it. We have also of us told stories of what helped in our efforts to resist fear, to become quite good at knowing what circumstances are not let fear take us over. We also shared a range of other stories favourable to illness, like stress and pressure. And we don’t about things we have learnt about illness and about healing: just sit there and let illness take its course. Although it doesn’t always work, we take action like withdrawing from stress and Bloodymindedness. I’d like to speak about bloody-mindedness a pressurised life, or like talking with others about what we as I think that’s one of my key characteristics! When I was are going through in order to get out of danger. eighteen I decided that I wanted to become a doctor. I had As time goes by in our connection with psychiatric started studying music, and switched to psychology as a step on services, we develop a lot of knowledge about what medications the journey. Once I began medicine, what should have taken are likely to be helpful to us. Over time we also develop the six years took ten. Every time I started practising I got sick. ability to see things that are about to happen that might There were so many opportunities and a huge pressure to give compromise our mental health, and we build up skills to deal up and do something else, to live on the dole. But I just with these things. Although these skills are not always visible to wouldn’t do this. I wanted to be a doctor. I knew that having others, we count on them to keep us alive. For example, these had experiences of mental illness would make me a better skills can be seen in our knowing how to walk away from things doctor, would be helpful to others. I finally graduated and I that are going to upset the apple cart, in our knowing how to think the university probably gave a sigh of relief! Basically, I make new connections with others who share our hopes, and in was so pigheaded that I wasn’t going to let the psychiatric our knowing how to find places where we will feel secure. services put me out of the business of being a doctor. Yeah, I At times it is our sheer bloody-mindedness that gets us think bloodymindedness is one of my key characteristics. It has through hard times. Often this bloody-mindedness is had to be.

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 31 Learning the warning signs. Earlier in my life I would push Voice. I used to teach singing and how people could breathe myself until I fell in a heap. But over the years, I have come differently and use their voices. These skills have come in to know more about how to recognise when I am going handy for me now in dealing with difficulties in my life. I can downhill. I take time off before I get too stressed. Warning let the air move in and out of my body in certain ways. I can signs are clearer to me now. What’s also been significant is let the vibrations shimmer and the sound that moves through meeting other people through the network who I can relate to, me can bring me calm. I think we have a lot to learn about the and who can reflect back to me when I am feeling ragged. voice, about sound and the ways it can be used to soothe and Sometimes they notice before I do. They ask me if I am carry our moods. feeling okay and upon reflection I can say, ‘Actually, no’, and then I can take actions of self-care. A network of support. When I am well, I always try to establish a network of support that I hope will see me through We are so much more than a diagnosis. I remember when future crises. This is a network that I can turn to for help one of our friends died not too long ago. I went to his funeral when I lose contact with my own knowledge. and there were many people there. The speeches described him as a musician, a journalist, an environmentalist. People Solitude and tears. There is a specialness in being alone told remarkable story after story about this man’s life and his sometimes. Solitude can make it possible to express tears and achievements. The mental health system, however, only saw to be moved by them to somewhere safer, more soothing and his pathology. It was such a startling illustration of the calming. different ways in which we can look at a person’s life. I get so enraged when only people’s pathologies are acknowledged. To be linked to the lives of others. It’s important to me to be Remembering that we are so much more than a diagnosis is linked to others so that I can step outside of myself. I need to important to me. get out of my own little box and step into the lives of others. This helps me to navigate the day-to-day struggles of having a Addressing injustice. When I was hospitalised the staff only mental illness. saw me as a pathological entity. There was no recognition of the other half of my life, the dedication I had to try and get Faith. When I was in the midst of depression, it was as if I better; the strong and loving relationships I had with others. was at the very bottom of life. There simply had to be a light Not surprisingly, this experience brought with it a sense of I could focus my attention on. It was a process of clambering impotent rage. To move forward with this, it meant back up through the gloom and it took a determination I had everything to find others who shared this sense of outrage. To never before known. ‘This too will pass’, I used to say to be able to share this and then together to seek to do something myself time and again. ‘This too will pass. There has to be a about it, to make changes to the ways the broader system better way than this’. These were statements of faith in life. understands mental health, means a lot to me. This faith and these statements kept me company.

To be productive. To become productive again is a theme An active process. When we receive a diagnosis, we turn to that meant a lot to me. I had always worked before my illness our own knowledges – start peeling away labels and chewing and it was vital for me to work out how I could continue to on diagnoses. We have to try to make our own sense of what make contributions to the world, otherwise I was going to feel people are saying about our lives. It’s not a passive process. as if I was on the scrap heap. It was a process of re- We try to work out how we are going to get well and it takes establishing, re-honing my skills. It started with artwork, a quiet and long-term determination. sewing and writing and it moved into other areas.

The International Journal of Narrative Therapy and Community Work 32 2003 No.3 www.dulwichcentre.com.au Theme # 2: Our appreciation Connections with others. Connections with others can be of healing contexts healing contexts too, groups which are kind and supportive. After I left hospital I went straight into a group at a women’s Over time, we have developed a special appreciation about refuge where I was accepted, even though I was in pretty what contexts are healing for us. We have learned what rough shape. To feel safe and secure in the company of others makes a place feel safe or unsafe. Some of us have learnt this is a special thing, especially after you have felt marginalised the hard way when people have disregarded our opinions and and vulnerable. To be with people who you don’t have to we have been placed into unsafe contexts with little choice explain a whole lot to brings a sense of comfort. and in isolation. Others of us have learned about healing places from the times we have spent in calm and beautiful Places of creativity. It was important to me when I realised surroundings. that I was drawn to certain places – like markets, folk We know when somewhere is a safe and friendly festivals. Initially when I got out of hospital these were really place. We know when a place feels like it protects us from the the only places where I felt comfortable in public. Galleries negativity of the outside world. Places like this can help us to were similar, where there were people dressed in their own get acquainted with our own feelings in a good way. These styles and where there was a respect for creativity and healing places can be especially important as places of difference. transition. To get through a time of crisis, sometimes a healing place can make all the difference. We have ideas and Unpeopled spaces. Healing contexts for me can be knowledge about what these places could look like – with unpeopled spaces where I can get out there and scream my pleasing courtyards, relaxing music and massage. They could lungs out when I need to. I look for opportunities to safely be places of peace. They could offer a seclusion of a different express rage or frustration without the police or the sort, a supportive seclusion rather than an isolated one. community mental health team coming to get me!

• If someone was planning to create a transition space for Love. When love is spoken of between family members, people, where people could choose to go at a time of between friends, this can be a healing context too. It’s an crisis, what would it look like, what would it offer? antidote to much of what is spoken in the world. • How have you learned about healing places? Have there been particular places in your life that you have found to Sport. Sport is a safe place for me. I have to concentrate be healing? when I play and there is a constant action upon which to focus. Badminton is the game for me. It’s not about winning. • How do you try to create safe healing places in your own life? I do it for myself.

Responses to this theme included: Doing nothing. Sometimes I just need a bit of space. Space to do nothing, just to see where my mind goes. Just to take a The natural world deep breath. • It makes a difference to my night and the following day if I can be at a special place at sunset, somehow connected Tone. So much can be conveyed by the tone of someone’s to the natural world. If I can’t be outside, I can create a voice. I have realised how rarely I heard a gentle tone when I beautiful place in my bedroom, with a nature tape. was in the psych ward, and yet I know that I can find safety in • It is nature that sustains me. I meditate and through this someone’s gentle voice. seek a connection with nature and its beauty. • There’s an energy that I sense from an old pine tree. In my car. In my car, after an episode, I drive for 2-3 hours at Touching it, having contact, brings a sense of a time. No-one can see me cry and it gives me space to think peacefulness to me. and time by myself. It’s like the tears wash over me and let • At times, when my head is spinning, I will take off my the episode come to an end. It feels like the driving and the shoes and socks, feel the energy from the earth. tears are moving me on.

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 33 Safe people. It makes a real difference if people listen to my In our connections with each other we are seen as understandings about healing. If they don’t invade my people who have our own lives and who deserve to have a say personal boundaries, push my buttons, or make personal about all of the things that impact on our lives. In these comments that are uninvited. If someone listens to what I connections we are seen as people who can think for think, then they are respecting me and I feel more valued. For ourselves, and also as people who appreciate the importance me, if people are safe, then the place is safe. of working together with a sense of solidarity. • Do you have stories about times when another person A special book. Once on a car trip from Canberra to Adelaide who has shared similar experiences to you has been able the sunset was so beautiful we stopped and took a picture of to offer companionship and solidarity? it. It was soothing. That picture is in a book of a range of • What has been significant about these times? images of special things and special times. If it feels like nobody cares, I get out this book and spend some time • Have there been times when you have been able to offer connecting with all those nice things within it. this to others? • How do you try to do this? A letter of care. I carry around with me a letter from my • What does it mean to you when you are able to do this? friends. It’s a letter that reminds me that they love me whether I am down or up. They love the person who is me who stuffs Responses to this theme up sometimes. When I withdraw, they understand that it’s because I need to, that I’m not rejecting them. Their letter is a Other people’s stories. Over time I have realised how safe place for me. listening to other people’s stories helps to comfort my fears. Hearing what other people are going through and seeing the And more… There are other things too: links and similarities to my own life, is calming, grounding in • music, some way. It helps me rally against the fears. Hearing others’ • returning to work, stories lifts me off an island that I have felt marooned on. It’s • self-help groups, like a medicine. It helps me understand myself. • making a nice meal and setting the table with candles, • creating a sense of beauty and care in daily life. Offering safety to others. I sat with a girl for three days once. We just sat there and listened to music until she said, ‘I’m safe, We have worked hard to figure out what are healing contexts you can go now’. It exhausted me but I knew how she felt. I in our lives and we structure our lives around them. could recognise where she was at. We know what it’s like to need that kind of assistance so, if we can, we offer it to others.

Theme # 3: Our connection Inclusion. There is nothing more healing for me than when with each other someone goes out of their way to include me, to make me feel at home, as if I am a significant part of their life. In our connections with each other we find places of safety. These are places in which we are free of pressures to perform Solidarity. As people who have shared similar experiences, and to get it right. It is in these connections that we find places we are very deliberate about building a sense of solidarity that are free of judgement. The charm of these places is that in amongst us. This solidarity is for support, but it is also them we don’t have to try to pass. Instead we make allowances political and this is significant to us. We are committed to for each other, which is such an amazing relief. In these coming together not only for ourselves but on behalf of all connections we meet others who have had similar experiences. those with mental health difficulties, all those who come in Because of this, these connections are places in which we can contact with psychiatric services. We join our lives around a reach out to each other in special ways, even through our pain. commitment to bring changes to the extent of stigma and to There is a beauty to this reaching out that is characterised by the ways in which people with mental health difficulties are compassion, kindness, love, laughter, and shared hope. treated. This is political work.

The International Journal of Narrative Therapy and Community Work 34 2003 No.3 www.dulwichcentre.com.au Theme # 4: Our connection with But there are also skills in moving away from people, even of families, friends and pets breaking connections when the relationships are not good, when they are not helping us stay on an even keel. At times, When our families can appreciate what we are going through, to withdraw from situations that aren’t helpful, even to isolate and how we are handling this, they can be an important ourselves, can be a healing move. So there is a lot to figure source of sustenance. When this is the case, our special out about connections. We’re doing this every day. We have understandings of life can be respected by our families, just as shared here some of the stories that we believe are important other members of our families have special understandings of in relation to our connections with others. life that we can draw upon. For example, we might have special understandings about how to deal with rejection that Reciprocal care. Connection with others is the key reason are helpful to another family member, and we might have a why wellness can be maintained in my life. I struggle with sister who has special understandings about how to deal with depression and there have been times when I haven’t wanted grief that are helpful to us. to be here, when I no longer wanted to live. I have spent a lot For many of us our connections with our pets are very of years being a carer and when someone stood up and said precious. Pets often have a good sense of what we are going that they wanted to be a carer for me it carried me through the through, and they are usually very accepting of us when we most crucial 48-72 hours of my life. Since that moment I have are having a hard time. They can be an important source of tried to create a crisis team for preventing crises. Together we support, and can bring joy and laughter to our lives. And have established what I need from friends when I am unwell, when things are getting on top of us, pets often encourage us when I feel like falling down. And I’ve also played that role to keep going – for example, at these times they can be our for other people. The most important thing about my team is reason for getting out of bed in the mornings. that it has removed the shame that I previously felt. When I Our connection with friends plays a big part in making used to get low, when I lost my confidence and boldness, I it possible for us to get through bad episodes. Friends are not used to feel so ashamed. But with my friends, I don’t have put off by us when we are at our worst, but keep their cool any of that. I can be who I am at the time. They might come and make themselves available to talk things through and to to visit for a cup of coffee and if I can only give one word help with plans to get our lives back on track. Friends can answers, or even less, then they are still happy with that. also play a big part in keeping isolation at bay by making sure That’s a real blessing for me. I realise that this is a lot to ask that they contact us at regular intervals just to see how we are someone. I acknowledge that. But it’s reciprocal. I might do going. something physical for them, help them move house, or • Do you have stories of difficult times when connections recently I even gave a speech at my friend’s wedding. When I with family, friends and/or pets have been significant to am well we talk about all of this, we take care that our you? friendships are in good shape – that there is no sense of burden. That’s important to me because it’s these connections • Do you have stories of difficult times when connections that make it possible for me to stay well. with you have been significant to family, friends and/or

pets? A meeting. When I first experienced depression I had a • What do these connections mean to you? fantastic therapist and doctor. My therapist would ask me, • If they are significant to you, why is this? what do we need to do to support you? And she helped me to identify all those who were likely to be able to offer me support. Then she called them together for a meeting. She Responses to this theme described what was happening for me and worked out a support plan for when I was most suicidal. Someone was with There are many different skills associated with me everyday. I knew who this was to be and I knew that it connections. There are skills about how to make connections, was not too much of a burden because it was shared around. how to reach out to people. Then there are skills of how to My sister was one of these support people. And she helped maintain these relationships, especially through hard times. me to tell my children in a helpful way. Because this was

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 35 managed so well, because it became a collective, careful big difference. Even if you don’t believe in yourself, someone process, I was even able to see that in some ways it was else’s belief can give you a feeling of respect and value. mutually beneficial for all of us. While they were clearly supporting me, I came to realise that this was really Support. I remember supporting a friend whose husband had meaningful to my friends too. It was significant to them. They committed suicide. It was by long distance phone and I felt at weren’t shut out of my life or death as otherwise they may the time that it was probably pretty pointless, that it was a have been. This was a two-way process in some ways. waste of time. But I found out later that it had made a huge difference because it had been driven by love. I knew we Taking care with trust. Not all my experiences of reaching shared despair so I just kept going, even though I thought it out to people have been supportive. So I have become very wasn’t working. Now I am so glad that I did. selective in who I trust. I check things out first. I might talk about mental health issues in general terms first and look for No pretence. When you have made a significant connection, their reaction and responses. I am careful to see if they are and you realise it is safe to tell another person about your judgemental or whether they are kind. Then again, there is experience, it is a time of letting go of pretence and replacing always an element of risk. Recently, I took a huge risk to this with the gift of vulnerability. That’s what friendship makes speak with a friend who is not someone who can talk about possible. When I offer the truth of my experiences to someone herself and who is not comfortable at all with conversations else, someone who cares about me, who wants to know me, I about feelings. I guess I must have had a good sense of her as think my vulnerability is a gift in a way. And when it is a person though, because she has ended up being just terrific received with respect then it is a beautiful mutual thing. to me. And if I hadn’t taken the risk this would not have happened. So it is not simple, but I know that I have learned to take care in building relationships of trust. Special knowledges about parents and children

To be there for others. A number of us spoke about how we During the gathering, some very significant can be very distressed ourselves, but if a close friend or conversations were shared about relationships between partner is struggling worse than we are, we can pull ourselves parents and children. We have included here some of the together in order to care for our loved one at the time. This different perspectives shared: might even mean to go out in the dead of night looking for someone. There are times when our love for others is the most It’s made us better friends. All parents make mistakes, but it important thing. seems to me that parents with a mental health issue always see things as their fault. They are always worried that Brothers and sisters. My two siblings and I all have struggles something due to their illness will adversely affect their child. with mental illness and I could always tell when they were The thing is, what I’ve observed in my relationship with my feeling really down. I particularly remember when one brother mum is that because she is so concerned about the effects of was at home and dangerously depressed. At this time I was her illness on me, she has tried so hard to always minimise studying and I would bring home stories from the outside any harm of any action. While every parent makes mistakes, world. I remember one day when I’d been involved in a bread very few parents take as much care as this. Very few parents fight and I came home to tell my brother all about it. As I think so carefully about the effects of their life upon their relayed what had happened, there was lots of laughter. I can children. Even though someone has a mental illness, I believe remember how he was looking at me and drinking up the they can be a wonderful parent. In fact, with my mum it has sunshine. Bringing these stories into the home was like made other things possible. For some families, normality can bringing light into the house. And it helped me to keep in touch be limiting. Being the ‘proper parent’ can be a restraint, it can with other aspects of life. I guess it brought light to us both. get in the way of developing mutual relationships. Seeing my parent’s humanity, her frailties as well as her strengths, Someone who believes in you. Knowing someone who means, I think, that I find it easier to turn to others for help. believes in you, and who is able to say this to you, can make a What’s more, I think it has enabled us to build a mutual

The International Journal of Narrative Therapy and Community Work 36 2003 No.3 www.dulwichcentre.com.au caring relationship that otherwise would not have been to their parents, or their parenting, or simply due to living possible. I know my mum will not always be composed, she with a mother or a father who had struggles. But this is not won’t always have it all together. But in some ways that’s fair. There are so many things in young people’s lives that can made us better friends. lead to a crisis. We are determined to question this automatic assumption, because it doesn’t make sense and it can have A response from mum. I had always wondered whether I did terrible effects on relationships between parents and children. the right thing in telling my children what was happening for We are interested in focusing on all the skills of life that me. I have worried about it a lot. I had no guidance in what parents and children offer one another, and finding wider was right or wrong in such a situation. I thought it was better supports that take the pressure off individuals. to tell them that there might come a time when I needed to go somewhere by myself to sort things out. I thought it was better to tell them rather than them see me acting in strange Special knowledges about connections with pets ways without an explanation. I thought that this would be more frightening. Anyway, I never knew if I’d done the right During the gathering many people spoke of the thing (speaking through tears). But in hearing my daughter significance of their relationships with pets. We have say those words today, I feel now that maybe I did. included some of these stories here:

Importance of wider supports. As the daughter of a mother Bluey. When I was a teenager, there were things that I didn’t who has a mental illness, I believe that children can be just as feel comfortable to tell my parents, but I had a cat called significant a support to someone as an adult can be. We look Bluey I could talk to. Bluey was older than me at the time, in out for our parents, care for them in many ways. And yet this that she had been in the family for longer than me. I talked to is not often recognised. A broader definition of parenting her, stroked her and she was a considerable comfort. I would really help. Parenting can work both ways sometimes, remember coming home once from school and I was from children to parents as well as the other way around. But distraught due to events that had occurred there. I ran through no single child should be solely responsible for someone’s the house and into the back garden. I did not want to talk to welfare, someone’s life, just as no single adult should be. my parents and I sat down and began to cry. Bluey noticed Broader supports are required. this and began to walk towards me. She curled up in my lap and started butting my chin with her head. She let me stroke Broader supports. Whenever I have been hospitalised, I have her as my tears fell onto her fur. I cried and stroked until I felt very rarely seen a response which assists parents in relating to I could face the world again. Bluey taught me that I could their children, or alternatively assists someone with their find support in the most unexpected places. She taught me relationships with their parents. In entering a psychiatric that even when I felt alone I really wasn’t. Long after she died ward, it is as if none of your significant relationships exist. I felt her still sleeping at my feet at the end of the bed. She You are related to only as an individual – there’s no consideration was very special to me, and I believe I was special to her too. of parents, children or partners. This would be easy to change and it would make a powerful difference. People have a real No nonsense. Pets are friends to me too. I remember when diversity of experiences in relation to parenting, and in my parents split up that my dog put his head under my arm. relation to how their children respond to their mental illness. It’s so lovely how they do that. Taking my dog for a walk Some people’s children can be incredibly supportive, others around the lake is so beautiful, so peaceful. It is a ritual that I can be angry and even cruel. There are lots of things to sort really enjoy – especially as I know how much it means to through and it could make a difference if these experiences him! When I started getting depressed it was very clear to me were acknowledged and could be spoken about. that my dog started getting physical symptoms too. He started scratching his back. I am sure that some pets can feel what I Challenging ideas. When a child of someone with a mental feel. And with a pet there’s no nonsense to mush things up. health difficulty goes on to experience a mental health No words to be shared. They just sit there with me, and that problem themselves, it is so often assumed that this was due means a lot.

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 37 Two-way caring. After I had been through a hard time, I We want someone to chat with, who will listen to what is found a cat. It was a bit feral and I looked after it for six happening for us, and who will provide reassurance. The months. I fed it, got it wormed, vaccinated. It made me feel development of this relationship is much more important than like I was doing something useful. She gave me cuddles too, a twelve-point plan to get through the next door. would sit with me and meow – talking to me. It was a two- When we are given a diagnosis, it makes a real way caring. That’s what was significant to me. At times I different to us if service providers explain what this means, think my cat has kept me alive. When I am low, one of the and do so in a way that is empathic and gives hope for our reasons I would not commit suicide is because I would worry lives. It is also very important that we are given immediate who would look after her? They are extraordinary creatures. feedback about any mental examinations or psychological tests that we undergo. And, for some of us it’s not just pets … Choice is always most important to us. It means a lot to us when we are offered choices about different alternative My teddies. My bears have been an important connection for treatments, with the understanding that we can be responsible me. They are non-judgemental and they stick around. Because for aspects of our own care. To have this sort of respect they are around, I am not lonely. They are good to talk to and offered at times of crisis is always a relief, and it encourages they don’t make me frightened. I’ve written a tribute to them: the development of our self-respect. Sometimes it is important for us to have the opportunity Teddies (by CK & Co) to express powerful feelings, including anger and profound hurt, without service providers being too vulnerable to being Teddies are our friends. We can tell them anything. affected by these emotions. It means a lot to us when service They know how to keep a secret providers don’t too easily get scared and panic at these times, They will never tell. and make decisions about treatment without consulting us. Most mental health crises do not come out of the blue. Teddy will always be there. When no-one else will be. They usually have to do with things that we have been They listen to us and yes, they hear us. struggling with for a long time, and that have tired us out. When service providers can see this, and understand that we Hug one today. Go on and you will see. deserve some time-out from our efforts, this makes a big How safe a teddy can really be. difference to how we feel about hospitalisation. It also helps to undermine our feelings of failure at these times. These are just some of the things we have learned Theme # 5: Our connection with about connections with service providers. service providers • Do you have ideas about what makes good connections with service providers possible? (These may have come Over time we have learned a lot about connections with from good or bad experiences.) service providers. When mental health crises bring us into • Do you have stories about connections with service contact with service providers we are in a very vulnerable providers that have been significant to you? position. At these times it is very easy for us to feel diminished, and to be shamed and stigmatised. How service • What has been significant about these connections? Why? providers see us at these times has a big effect on how we see ourselves. We know how hurtful and damaging it can be if we are not respected at these times. On the other hand, if Responses to this theme service providers respond to us with respect, care and compassion for our situation, it makes it possible for us to In the small groups, people told a wide range of hold onto some dignity and gives us a sense that we matter. stories. Some of these were about difficult experiences, times In our connection with service providers, we have when we were at our most vulnerable and were treated with learnt that it is the relationship that should always come first. disrespect and how this made things worse. Some of these

The International Journal of Narrative Therapy and Community Work 38 2003 No.3 www.dulwichcentre.com.au were stories of abuses of power. Other stories were about them. In traditional hierarchical social situations, it needs to precious connections with service providers that have seen us be a wise compassion. through hard times. We have included here a range of different reflections about relationships with workers. Sharing. When workers tell me something about themselves it lets us connect on the same level. Because of my previous Care. When I think about good connections with service experiences I am pretty quick to fight the system, to rebel. If providers, a particular story comes to mind. It was at a time workers share a bit about their own lives this changes and it’s when I was overburdened and a whole lot things had much more possible to work in partnership. compressed together. I was a sole parent, I was studying at university and I had a bad back and various health problems. Trust. Trust is important – I had a nurse once who we called I was heading to the university doctor for an acupuncture the ‘la la nurse’. She would joke with us. She’d acknowledge treatment when I got pulled over by the police for speeding. where I had come from and what I had been through. She was Standing there by the side of the road, I felt really desperate a great encourager and she stood up for me. She even told a and kept imagining what a relief it would be to walk out in more senior worker to be quiet once when they were saying front of the traffic. When I finally got to the doctor’s office, negative things about me. This was important to me. She I sat down, burst into tears and just couldn’t stop crying. The helped me learn that it was okay to be me, that I didn’t need doctor was incredibly gentle with me. She managed to get to pretend. Trust can really assist with that. some words out of me and then said, ‘It sounds like you could be depressed’. It was the first time this word had been spoken Taking time. I have come to see that simply taking time with to me and it was a real relief. She said to me, ‘You’ve got people is important. To offer your time is a precious gift and one some choices here’ and that phrase was really important to that doesn’t seem to be given so often these days. Often there is me. She said that one choice might be to take some time off. no quick fix to some of the things we are facing and so to know When I started to run off the list of reasons why this wasn’t that others will spend time, will take time with us, is significant. possible she was really quiet and gentle and said that she would support me, she would write letters explaining things Bringing out the best. Sometimes it takes some skills to to my lecturers. It was a relief to be given permission to admit bring the best out of those who work with us. We need to that I really wasn’t coping. She also offered me some anti- stand our ground and ask questions: ‘Can you please not write depressants and said that I might be interested in taking these. notes?’, or ‘Can you tell me what you’re writing in the notes, I am a rebellious person and it was really significant that she can you give me letters?’, or ‘Can you not write on the acknowledged my choices. She treated me with respect. She computer while I’m talking to you?’ But there are risks cared for me. I felt as if I was held by her. And for the first involved with this too. When we ask questions and assert time, this was something I didn’t need to carry on my own. ourselves we get to hear things that we might not want to I can’t really convey how important this was in my life. hear, like ‘You’re a borderline personality disorder’. But at least then we can do our own research and come back and ask A wise compassion. I believe that compassion is a further questions: ‘What’s the list of indicators for borderline particularly important healing knowledge. Compassion for personality disorder?’, ‘Do you really think I’m demonstrating ourselves and especially for others, including workers. We all of them?’ And in asking these questions sometimes space regularly meet with workers who may be frightened to listen is created for a better discussion. We have to ask people to to our stories, scared of what they might hear. In these keep us informed. This can require patience but it can make a circumstances it’s not bloodymindedness that works, but difference to relationships over the long run. kindness that needs to be offered to workers to help them go beyond being scared. It can be complex though and it seems Types of listening. Some forms of listening are better than important to clarify what it is that constitutes compassion. others. Sometimes it’s obvious that people are only listening in Sometimes we need to be assertive with workers and services. order to be able to bring things back to their agenda. That’s not We need to assert our own validity, impart our own as helpful as when workers genuinely want to hear about my knowledges, and at the same time be compassionate towards experiences, when they want to know what life is like for me.

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 39 Not only when I’m in crisis. It makes a difference to me if Vocation. Every now and then you meet people for whom someone is interested in seeing me when I am well, not only this work means more to them than nine-to-five. It is a when I am in a crisis or when I am sick. That means we can vocation to them. It means something significant to them and have a much more equal relationship. their lives to be doing this work. When I recognise this it offers me hope and dignity. Building relationships. When we first meet workers it is often when we are at our most vulnerable, when life is at its most Opportunities to share other parts of my life. If workers difficult and we are full of fear. It is virtually impossible to be seek to know other things about me, things not associated assertive or inquisitive at this time, but gradually we can build with my illness, then we can talk together differently. If they different relationships with those who work with us. This want to know about my relationships, my interests, then our assists everyone. Surely it is better to be working with someone conversations will be altered in a good way. who has opinions, stories and whole lives, rather than a passive thing with no views, no understandings of life to respect. Experience. I try to articulate that I am having a certain experience rather than an illness. If it’s understood that this is Abuses of power. We have had to develop a lot of ideas an experience, then people are more likely to ask me what this about how to navigate a system in which abuses of power are is like, rather than feel they know already the symptoms and still commonplace. Whenever we are pushed down or treatment plan for a generic illness. disregarded, we always respond. Even when we are up against very strong forces, we always respond in ways that fit Calm responses. We know that things will work out well with particular things that are important for us. Some of us when we are with service providers who don’t get scared have developed very strong values around power and who can respond calmly, gently and gracefully in the relationships. We have developed strong ideas about human face of our mental health crises. When we experience kindness and compassion and how important that is, and we compassion and understanding from workers at these times, also have a lot of ideas about how to make the system work and when they convey the attitude that we can get better, it better for people. takes away the hopelessness and the sense of being alone and frightened. Talking. I remember one time when a doctor said to me, ‘If you take these pills it will make everything better’. I thought that this was probably a false promise and I said to him, Theme #6: Embracing different hopes, ‘Please, can we take it a little bit more slowly? I’ve been values, and ways of living through a rough patch, and I’ve been watching myself and I’ve got a lot of ideas about what’s going on for me’. I was so Many of us have lived lives outside the ordinary. While some pleased when the doctor then backtracked and started to of our different experiences have been very difficult, we have listen. When I am able to do this first step of clarifying that also come to embrace some aspects of this difference. We I want to talk, rather than be talked at, then this can make a have questioned a lot about life and have come to some difference. But other times, this is almost impossible, interesting conclusions. We have come to value certain things especially when I am vulnerable. that once we may not have valued. We have different aspirations these days, different ideas about what is a successful life. Medication. Medication has a role in my life now. I’ve We have developed different visions about what we learned that it needs to be at just the right amount so that it want out of life and what we believe is important. Some of us enables me to be able to think and talk about my lifestyle and have become good listeners, we support each other and have what is important. What works for me is when others support developed a good understanding of mental health issues. me to live the lifestyle that I know is sustainable to me. It is a Some of us have learned how to be very flexible and make support that doesn’t put pressure on me to get my life allowances for others. Some of us now cherish living a non- together. They say things like ‘don’t be too hard on yourself’. judgemental life. Others of us have become advocates for Support of this kind is medicine too. people with mental health issues. Some of us have a

The International Journal of Narrative Therapy and Community Work 40 2003 No.3 www.dulwichcentre.com.au commitment to human rights and political activism and have When I was young I was concerned with notions of success in been involved in anti-racism campaigns over the years. conventional terms: study, university, getting a successful job. These are all things in which we take a certain pride. While all of this can be important in context, there’s no point We have also come to realise that over years we have in pursuing these goals if the pursuit leaves you isolated from developed certain skills: skills in how to get through a day; others and not being true to our own values. Now there is skills in how to cope with stigma; skills in how not to go nothing more important to me than relationships with friends along with the system; skills in knowing what we can and who I love and who love me. They sustain me. Once I thought cannot manage; skills at maintaining independence even that being an adult was about being a lone wolf, battling when we need assistance from others. We take a certain pride through, trying to prove that I could do it on my own. Now in these skills of difference. though, I am much happier being a part of a community of What’s more, where once we may have been misfits, mutual support. We acknowledge that we couldn’t do it we have found company in being in a group of misfits. We without each other. celebrate each other’s achievements. We love seeing others take small steps. Seeing someone doing their own washing Tolerance. I hope that I have become more tolerant, but I still up, doing it for herself, rather than having it done for her. have a long way to go with that. We all have prejudices and blind These moments can be a cause for celebration. We are more spots and I am still trying to work on these. But I certainly now conscious now of honouring the little, but important, see value in people who I once would not have valued. There moments of life. are very few people who I can’t learn something from. • Are there certain things that you value now, that you think are precious, which are due to your experiences of To make a contribution. I’m here for a reason. I’m here on living a different sort of life? this planet to help people get through what they need to get through. I can’t be a counsellor because I cannot cope with • When you think about the sort of life you are aspiring to hearing negative stories, but there are other ways that I these days, what would you call it? How have you learnt contribute. I don’t want to leave the universe the same as I that this is the sort of life you are seeking? found it. I can’t change the broader world but I can try to help • Are there certain skills you have developed in living a those around me. That’s what my life is about. different sort of life that you take a degree of pride in? What are they? How did you develop these skills? How Honesty. My illness has actually resulted in me living a more do you put them to use in your daily life? honest life. I am more deliberate in who I choose to open up to. The people I connect with are those with whom I have Responses to this theme positive interactions. And I am now only interested in genuine friendships. I used to put up with friendships that were We have come to know about suffering and through superficial but I do not have the energy or the interest for this this we have learnt some things about healing. We’ve had any more. I am more selective and I live a more honest life. I experiences of betrayal and so we have learnt about trust. treasure this and respect it. Difficult times have helped us learn about what is important to us, what we want to value and do differently in our lives. Talking to people. I have learned the importance of talking For many of us, these experiences have led us to want to to people, not about them. It sounds like a small distinction make a difference in other people’s lives, to looking for those but it makes all the difference in the world. things that restore connection, to build on healing knowledges. Many of us seek to make a difference in the Seeking. There are times when things are just so anguishing world, no matter how small. Many of us now value that I have had to scream. It just seems there is too much to relationships in new ways. endure, to push through. But when you have experiences of life like us, you just keep seeking. There are so many Relationships. My values have certainly changed. I have challenges to constantly respond to, sometimes it’s like trying learned to place a much greater importance on relationships. to get something done, like in a dream where it seems

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 41 impossible to find a way forward. But we keep seeking little Pursuing certain paths in life. Through these experiences I wisdoms and commonsense from people who have been have gained more clarity about certain paths that I want to be there, and from people who care about us. on in life. These are not paths that I always manage to stay on, but they are paths I want to keep returning to. The path Moving forwards. For many of us, there is a silent that is most significant to me these days is one of ‘principled determination not to let the lack of understanding of others love’. I want to live my life according to this ethic. stop us from proceeding with our lives. We must either find the people who will join with us, or simply keep working The balance between independence and reaching out. away to create a system that works better than this one. I value the balance between independence and reaching out. My friends and I help each other, we are self-reliant together Spreading hope. Somehow, through the most difficult times, and this makes all the difference to me. we hang onto hope. Sometimes this is false hope, it is against all reason, and perhaps that’s the most important type of all – Letting go. I have let go of chasing careers and success. What because it’s when you need it most. It’s when you are living is important to me now are friends, cooking a meal, washing, minute by minute. I am interested in how we keep hope alive and coffee with friends. I have set myself free from the amongst us. I’m interested in spreading the story that hope treadmill. I am now much more interested in spending time in exists. It seems like a good investment to me. peaceful, quiet places.

Connection. As I have gotten older, I have learned that it is Living in the present moment. Some of us have learnt to how you connect with people that is important. Loving live one day at a time, to stop looking towards the future. We connections are now my highest priority. place a new value on what we have and what happens each day. Having a coffee with a friend, taking a shower, become Small things. I notice the colours of the sky, of the leaves, experiences to value and appreciate rather than a blur in a and of artwork. I rely on little things to sustain me now and rush towards tomorrow. I’m studying at university right now have stopped waiting for big things to change my life. My and when people ask me when I will be finished I simply say kids asked me once why I was happy despite all of the terrible ‘I don’t know’. This is just what I am doing now. things that were going on in my life, and I said that there are still so many precious things available to me. I love the smell Working. I go to work these days in the health field and it of tomato seeds between my fingers. I love my four-year-old gives me joy and a reason to live. I was amazed the other day grandson who said I was lovely and soft and squishy. I love when I worked out that all of my income, and more, goes into the hairs on the nape of his neck. These small things are what providing me with health services to enable me to go to work! have become important to me. So, the work that I do is actually in a way costing me money rather than making it. But it is more than worth it. I get such To make links / take broader action. I am now determined contentment from what I do. It is what enables me to define to be an activist. I refuse to see things as individual issues any myself rather than be defined by others. more and instead always look at the broader context. I want to make links between our lives and to find ways in which we Special knowledges about spirituality and healing can take action together. I am a good listener and advocate. I am proud of being involved in mental health work. It is hard For some of us, spirituality is a key part of our lives and work and I have done it. an important part of keeping well and getting through difficult

times. We have listed here some reflections about this: Independence. I value my independence. I was kicked out of home some time ago, so I moved around and eventually got • There are various forms of communion which are a part things together. Six months ago I got a new place to live. of my spiritual life. There are also various meditations on Now I wash my own clothes, make my own meals. I treasure air, earth, sun and joy (in the day) and on wisdom, love, this and value sanity more than ever. power, peace, creative work and eternal life (in the night)

The International Journal of Narrative Therapy and Community Work 42 2003 No.3 www.dulwichcentre.com.au that shape and give meaning to my life and help it to go Subtle listening skills. We are here as a listening team, but along smoothly. today I think I learnt a lot about listening! It seems to me that • At times when I have heard voices I have been able to these folks here are experts in what sort of listening is helpful discern what I believe to be a voice of conscience. It is a and in how to find good listeners. This interests me. It positive, gentle suggestive voice that offers me good reminds me of the times in my life when I have trusted advice. I understand this voice as spiritual. It is very wrongly and learned from this. And it reminds me of the joy significant to me. that comes from good listening, the feeling of being with a kindred spirit when someone is listening in ways that are • While I certainly cannot identify any of my voices as significant to you. I’m going to think more about this, and being a ‘voice of God’, I do have a belief in God that I hope that I will become a better listener for all that I have sustains me. heard today and that this will make a difference to my work. • It is vitally important for me to have a broader purpose for my life, to have something to believe in. For me, this Gentle determination. Why did people’s expressions of broader purpose is a determination to make a difference, determination stand out for me? When I think about it, it has and this is a spiritual matter to me. to do with spending twenty-seven years as a single parent, • There is a sense of unconditional love that I try to bringing up three kids. My kids were pretty ratty at school. connect with at times. When I am connected to it, I The school’s image was that these kids were trouble and that I understand it as a connection to God, others might call it was a failed single parent. This was a powerful image for me something different. But it is meaningful to me. to resist. I felt like I had to work really hard to retain a • I am interested in different types of spirituality and their different image of myself. Today, people spoke about the links to healing. I am particularly drawn to Zen Buddhist gentle determination they require to continue to claim a ideas. different identity than that which is offered within psychiatric services. Hearing this really touched me. It will make me • My relationship to spirituality and to the church is think about my own life and my children’s lives differently. complex. When I first became ill this experience was

completely enmeshed with church experiences. A Two-way understanding. I’ve worked in this field for a very particular church had tried to convince me that the voices long time and I was powerfully touched this morning by the were a sign that I was possessed by evil and they had ways in which people spoke about the two-way nature of their attempted to exorcise this evil. When I extricated myself conversations with service providers, and the care shown by from the church my mental health improved. Even the people in this room for workers in the field. It brought though I have my own sense of connection with God, I back images to me of times when I’ve felt very cared for by cannot be associated with any church. Still now, when I the people who were actually seeking therapy from me. I can am manic, the mania can take a religious form. I can get think of a number of times when I’ve been off the track and in touch with the avenging wrath of God, and believe that the people who have been seeking counselling from me have I need to in some way try to enforce this. When I am been benevolent. They’ve been patient with me, helped me to well, though, God and I have an understanding. I am get my feet back on the ground, so that we can return to interested in how notions of spirituality can relate to talking about what’s important to them. In such caring and healing. I am also aware that these are complex matters loving ways, they’ve helped me understand what would be and it requires care when they are talked about. more important for them to be talking about. The

conversations today put me back in touch with a lot of those Listening team responses experiences and I think from now on I will be even more aware of this. When I go back home, I will be pretty busy Throughout the gathering, listening team members spoke with counselling interviews, and on account of what I heard about what the conversations they’d heard had meant to them this morning I will be much more aware of the compassion and how their lives and work will be different as a consequence. that those who come for counselling are expressing towards Some of these responses have been included here: me. I think I will be able to name this a bit more with the

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 43 people who are seeking my help and that whole idea warms very little space to talk about their ideas. Throughout my life I me. We can sometimes feel alone in our work and I have a have come across times when systems and institutions haven’t sense that I will feel a bit less alone in the coming week. given space to people’s own knowledge and thoughts. I realise that at times in my work I can still feel like I have to To consult. In listening to people here, I think when I go back have all the answers, even though I know that this is to my work I will be more open to consulting those who come presumptuous and disempowering. After this weekend, I will to see me. I can get a bit seduced by the system about how I’m be more conscious of how I can stay on track to listen better, supposed to know all this stuff and I think I will feel more and to provide space for people to explore their own committed to consulting those who are seeking counselling. knowledges. That’s something I will take back with me.

Putting together puzzles. Hearing how important it is for Hope. In listening to people speak, I began to ask myself people to be able to play a part in ‘putting their own puzzle questions about hope. What is that I hope for? What is that I back together’ is something that will stay with me. I have believe in? How do I sustain my hope? These will be been thinking about how I can ensure that I enable this in my important questions for me that I will take back to my work. work. There is always a sense of pressure at work and I am It’s not that I am taking away answers, but I will take away going to be a bit more determined to resist some of the note- new questions and I really appreciate this. I’d take a good taking practices and practices of disrespect that sometimes I question over an answer any day! am a part of. I have realised that I’ve got to put my own puzzle together too. Children. We heard today about how often it can be quite traumatic for children when their parents are struggling with Sustenance. While I am on the other side, if you like, as a mental health issues. But on the other side of the coin we also worker, there is much about the mental health field that I find heard stories about children rallying to the occasion and distressing. I feel sorrow when I see some of the things that expressing powerful nurturing skills. We heard how children happen to people when they are disrespected at precisely the watch out and be protective and caring of their parents. We time they most need respect. So in being here today, I then talked about what this might mean for these children’s experience a sense of solidarity in a way that I believe will be futures. What will it mean that they have these extraordinary very sustaining. skills in nurturing, in protecting and in watching over? What difference would it make to the world if more children had Continuing to learn. One of the things that is significant to such sophisticated skills in nurturing and protecting? During me about the job of counsellor is the opportunity to keep these discussions, I had a powerful image of these children, as learning. This weekend has put me in touch with this again. if they were almost with us in the small group. I wished that they could have been here so we could just hug them all! I As a carer. As a carer in relation to my son, I was struck as I found this very touching. It made me think about children I listened to people describe the depths of knowledge they have sometimes see who are referred to me in circumstances that about their lives, about illness and about healing. It has made are quite difficult and how important it is not to overlook that me realise that my son probably has a lot more knowledge they are not just passive recipients, but they are also than I know. I think I am a good carer, that I am sensitive and responding. It made me think more about how we can go open, and yet I have realised that there is a whole realm of about acknowledging their skills and contributions. conversation that I don’t have with him. I could create much more of an opportunity to hear and learn about his A response from another team member. When you talk experiences and ideas. This has opened up possibilities for about the children in this way, I realise I am one of those new conversations with my son. children who had parents struggling with mental illness issues. That’s why I am here this weekend. It’s why I’m a To work together. These conversations took me back to member of this team. It’s been a life journey for me. I was when I was a kid. My eldest sister had anorexia and she and busy nurturing and caring as a young child and there are my parents were exposed to a system that really gave them many links between those stories and why I am here today.

The International Journal of Narrative Therapy and Community Work 44 2003 No.3 www.dulwichcentre.com.au These links are about caring intensely about mental health Reflections from the group on what the issues and stigma. Since I was about six or seven, I have listening team said wanted things to be different. When you live through these sorts of experiences, as people said in the groups today, you The following reflections were offered by members of the learn to handle a wide emotional range. You learn so much large group after the listening team had spoken. about what is helpful and about what is not helpful. In a sense, we have to lead the community in dealing with these • When we came back from the small groups, and the team issues because we understand them better than anyone else. described what they had heard, it was like many different At different times in my life I have wanted to find ways to use pieces coming together. If I had spoken individually for a that knowledge, and I have never heard the children spoken of couple of hours I might have covered all the things that were in the ways they have been today. So thank you everyone. discussed in the different small groups, but it was kind of beautiful how what all the other groups said also related so Always responding. Through the discussion, we heard about closely to me. It showed how we share so many experiences. some of the really difficult experiences people have had within the mental health system, and we also heard about the • To hear the listening team speak honestly about how what ways in which they responded to these difficulties. I realised they had heard will change them, how it will alter how over the weekend that people are always responding in ways they listen to those they work with, seemed humble, that reflect certain values that are important to them. This is a generous, but honest too. These are the sorts of themes realisation that I will take with me and that I really need to that are in our hearts as consumers. When one of the team remember. I often have people coming to speak with me and I members spoke about how it had been difficult for her to feel very powerless when they tell me about their experiences hold onto a positive view of herself as a single mother, it in the system. I wonder how can I make a difference or what shed a different light on our experiences. It’s not only us can I do in the face of all of this? To be honest, I can feel who have these struggles. frightened when I hear about the abuses of power that sometimes occur, or when I see how distressed or pained • This is just a starting point. We are seeking a bill of rights people are about the lack of respect they have received. for the mentally ill. Some legal recognition that assists us Because of this gathering, I will remember that during these to have some sort of control and influence over our lives, difficulties people have been responding. I will ask them even when going through difficulties. This bill might about, and persist in finding out about those times when they include the right to involve family members, or trusted have been able to respond in ways that fit with what is friends in certain decisions. There are different options, important to them and that have allowed them, even in small but these are matters of human rights and dignity. ways, to hang onto their dignity. • It was significant to hear the recognition of our knowledge and expertise. I have had a difficult time recently, and I Thankyou realised that I had to come to this weekend to replenish myself. It makes me think about what it would be like if On behalf of the listening team I would just like to say this was a more common experience. thankyou to everyone here for inviting us to be with you over this weekend. It has been a significant experience for all of • I hope that in the future there may be opportunities for us. You have shared stories that are important to you and in workers on psychiatric wards to meet us when we are the process they have become important to us too. well, so that they can hear more about our lives and the sorts of stories we have told today. Those who work in acute mental health services only ever see people in crisis. They see us when we are at our worst, when we are most ill. I would love the opportunity to invite these workers to a meeting like this one, to invite them into our world. I

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 45 know that some of these workers would really appreciate be the case that we need to put a little more life into the this as they have told me this themselves. book! Maybe this is a start to that process.

• What if workers could spend a day in the sick role? It could • So often the difference between someone with a diagnosis be seen as work experience! They could experience what life and someone without one is a wooden desk between two is like from the sick role. They’d have a chance to experience people. If you are sitting in front of the desk you risk conversations about their lives and the usefulness of becoming infantilised, you may acquire learned medications. I reckon it could be transformative. helplessness and get lost in the system as a potential zombie. What’s more, your efforts to get out are often • It was significant to me to hear the team say that one thing quashed. There was a soft-heartedness this afternoon that I they will take away is that they will focus more on the simple wish others could witness. There was a strength too, and a things. When I need to see a doctor, often my mind is like a texture and richness of stories. To witness this is powerful washing machine. It is really hard to think straight and when as it breaks down the binary of us/them. We all (service I go into the doctor’s office I just see all their qualifications providers and consumers alike) receive an invitation to and how clever they must be. If they speak in diagnostic become simply ‘us’, and that in itself is healing. language, if they speak in complex ways, it can be further confusing for me. But if they do the simple things, the small • While I appreciate the acknowledgement of our skills and things, it can be different. If they greet me kindly and ideas, and this is a relief, it is not always possible for me sincerely and genuinely ask me how things are going, it to know what is right for me. There are times when I lose makes such a difference for the entire conversation. touch with my own knowledges. And at those times, I need some guidance. I need someone I can trust to tell me • It was moving to me to hear what it had meant to the team what to do. It’s good for me when I am well to work out that we do consider carefully the experiences of workers. with someone I trust what I will need them to do when I They spoke of our generosity. We do extend a kindness am not well. This is still an acknowledgement of what we and gentleness to those who treat us and we seek kindness know, but I think it is important to realise that there are in return. To hear what this meant for workers was times when it will be very difficult to talk to me, and at interesting to me. It is a two-way process and I was those moments I can really do with guidance and care to pleased this was acknowledged. get me back on track.

• To acknowledge that we as consumers have expertise in • I’ve had a real sense of being in solidarity with others over relation to our lives makes a difference. As a consumer these two days. It’s like a coming together with a broader and a clinician, when people validate my own personal purpose. It brings me hope that we can get it together. I stories, it offers me a sense of company. This will assist think this sense of being together will carry over to when me in challenging people’s views when I need to. It will someone speaks to me in a way that I don’t deserve. I assist me in listening to other people too. think I’ll be able to speak up for myself in a new way. At the very least I think I’m going to feel differently about • We’ve all got our strengths and weaknesses. Workers myself and all of us. have their strengths and things that they can offer us. But we also have things to offer workers, things that they • How do you grade someone as being qualified to assist cannot know, cannot do, without our skills and ideas. others in times of crisis? What are the skills required? I Through our strengths we can offer a lot to services. I see think you need to be able to really listen, to relate to how this reciprocity as almost spiritual. To view these interactions someone feels, to step into their shoes. I think you need to in this way makes a powerful difference to the dignity of be able to do the simple things like share a cup of tea. And both workers and those of us who seek support from who can give another person these qualifications to be a services. For too long it seems as if we have been told that caregiver? I don’t think it’s universities. I reckon it’s only we need to live our lives by the book. But actually, it may someone who has been there.

The International Journal of Narrative Therapy and Community Work 46 2003 No.3 www.dulwichcentre.com.au • Valuing the knowledge that we have is significant but I Where to from here? believe there would be a danger if we started to acquire the arrogance of expertise. I don’t want to see us Before the gathering ended we also spoke about where replicating this in our relationships with service we plan to go from here. There were many different ideas. providers. It’s not a matter of hitting service providers • The gathering produced a CD, a video and this document with a stick. It’s not about replicating the idea that we containing the stories, songs and knowledges of those have all the knowledge and they don’t have any. That’s present at the gathering. These are now significant sources not true. It’s about creating different ways of working of information. together. • Everyone present at the gathering has received a CD and • In talking about our relationships with service providers, this document and a copy of the video has been sent to the I have come to realise that these are much more complex ACT Mental Health Consumers Network. than I first thought. To hear workers talk about how they • After everyone had a chance to read the document and to learn from their interactions with us means a lot. It make any changes, we then decided to publish this paper means that I do not have to think that the questions and here in the International Journal of Narrative Therapy and challenges that I make to service providers are always Community Work so it can be read widely by people in motivated by my illness. Instead, they might be different places. We hope our stories will be of benefit to motivated by a whole range of other things – my beliefs, others. my values, my hopes for what the relationship might Extracts of this paper may also be used by group members to look like. And this means I don’t have to be so hard on • myself. raise community awareness of the issues that were discussed. • The video will be shown to others too – to other peer • These conversations have offered me a different groups and to workers in different places. People who perspective. I have been through some terrible experiences view it will be asked to write down (or video) their in my life, that I would never want to repeat, that I would responses and these will be brought back to Canberra at a never wish for anyone else to have to go through. I have follow-up meeting. got through these experiences and when I look back upon • It was also decided to investigate the possibility of a follow- them, I can see that there have been lessons learnt from up gathering that would involve not only consumers but these times. There are things I see differently now. Things also local carers and service providers. At this gathering, I value that once I did not. Things that I no longer value the service providers and carers would be invited to listen to that I once did. In talking about these things, I hope it some of the stories of consumers (these would be carefully helps to build bridges between people. chosen). The listening team would then work with the service providers and carers to develop responses which • In these few days, we have heard stories from people would then be offered back to consumers. These responses about the lowest times of their lives, and what has enabled would convey what hearing the consumer stories had meant them to make it through these. As I’ve heard these stories, to the service providers and carers, how this will influence I just had a powerful realisation that we’re all still here. them in the future, and how it will change the practices of All of us in this room have survived. It takes a tremendous the institutions in which they work. A gathering like this strength to exist sometimes. To exist minute by minute would need a lot of thought and careful planning. It was can take more strength than I ever knew I had. These few decided that the possibility would be further investigated. days have made me think about my own life, to step back and have a look at it. How come I am still here? I have • Thought will also be given to holding further consumer appreciated being able to draw on the strength of knowing meetings using the same gathering structures as were used that we’ve all got through to this point. on this weekend.

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 47 Songs from the gathering

The following songs were written, rehearsed and recorded during the gathering. For more information about this process and the use of songs as documentation see the paper ‘Community song-writing and narrative practice’ (Denborough 2002).

These are not ordinary lives A place to be Through the ashes Lyrics by CK & Co With each other we find safety There are those who do not Places free of pressure understand No need to perform Here we all are As we move through different lands Reaching out, even through our pain In one big group Of fear and sorrow It’s connection that brings beauty to the day Sharing personal things When down so low With total strangers And when we’re at our lowest Feels good When chewing away at diagnosis Might be a pet who sees us through Most unusual Peeling away the labels Might be a sister or a friend Quiet determination is at play Who offers company through the blues No judgements No false looks We’re thinking through connections We’re learnt what works, what heals As we sit down to dinner Building on them and moving away What makes a soothing place With people we’ve just met There’s much to discern We’ve learnt when to walk away Day to day And if that doesn’t work Sharing and caring again Well bloodymindedness might just be the way No matter who you are It’s through betrayal Or where you come from That we’ve learnt about trust These are not ordinary lives Through loneliness That we’re living Finally – a place to be That we value connection These are sparkling moments in which we take pride Finally – a place to be Hard won skills we’ve developed And understanding goes two ways And we know what it means to be kind Yes understanding goes two ways

We hold onto hope To make a difference You can be A difference day to day lyrics by David Grills A difference in our own way

It takes stumbling around in the dark, to really appreciate the light Like a phoenix rising through the ashes It takes being threatened, to really want to fight Bringing with us wise compassion You have to endure the rain, to get to the rainbow You have to have a seed, to get anything to grow

You can be what you want to be, The following poem was written after the You can be free, you can be you, and that’s okay with me gathering, reflecting upon it:

There are mountains that you can climb, if that’s what you want to do Trust You can do it on your own, but other people may be able to help you by Alison Grills (1 June 2003)

Reaching out to the world, can lead you to want to retreat Treating each other with respect But one successful contact, will be a fantastic feat Real friendships, no pretence Understanding & empathy You can be what you want to be, you can be free haring each others ups & downs You can be you, and that’s okay with me S That’s okay with me Truth & tact of equal importance

The International Journal of Narrative Therapy and Community Work 48 2003 No.3 www.dulwichcentre.com.au Notes References

1. The ACT Mental Health Consumers Network can be contacted Denborough, D. 2002: ‘Community song-writing and narrative c/o PO Box 469, Civic Square ACT 2608, Australia, phone practice.’ Clinical Psychology, 17. (61-2) 6230 5796. Russell, S. & Carey, M. 2003: ‘Outsider-witness practices: Some 2. Dulwich Centre’s contact details are: 345 Carrington Street, answers to commonly asked questions.’ International Journal of Adelaide SA 5000, Australia, phone (61-8) 8223 3966, fax Narrative Therapy and Community Work, No.1. (61-8) 8232 4441, email: [email protected] White, M. 1995: ‘Reflecting teamwork as definitional ceremony.’ 3. These consultations were conducted by Mary Pekin, Robyn Sirr, In Re-Authoring Lives: Interviews and Essays, pp.172-198. Jo Taylor, Robyn Thomas, Sue Todd, Elizabeth Ward, Genna Adelaide: Dulwich Centre Publications. Ward, Jo Courtney, Chris Higgisson & Michael White. Michael White and David Denborough drew together the consultations White, M. 1999: ‘Reflecting-team work as definitional ceremony into a draft gathering program. revisited.’ Gecko, 2:55-82. Re-published in White, M. 2000: Reflections on Narrative Practice: Essays and interviews. 4. This listening team consisted of Mary Pekin, Robyn Sirr, Jo Adelaide: Dulwich Centre Publications. Taylor, Robyn Thomas, Sue Todd, Elizabeth Ward, Peter Hollams & Michael White. White, M. 2003: ‘Narrative practice and community assignments.’ International Journal of Narrative Therapy and Community 5. This paper was created from the words spoken at the gathering. Work, No.1. It was brought to its current form by David Denborough, staff

writer at Dulwich Centre Publications.

NEW BOOK! NEW BOOK! NEW BOOK! NEW BOOK! NEW BOOK!

Dulwich Centre Publications announces a new book …

Towards a Just Therapy

A collection of papers from the Just Therapy Team, New Zealand Warihi Campbell, Kiwi Tamasese, Flora Tuhaka, Charles Waldegrave

This book brings together in one volume the work of the Just Therapy Team of New Zealand which has, over the last fifteen years, inspired and challenged therapists and community workers in many different countries and contexts. The Just Therapy Team’s committed, dignified and caring cross-cultural partnerships have signalled alternative ways of conceptualising working relationships. Their descriptions of therapy as a sacred encounter – honouring Indigenous traditions of spirituality and always seeking culturally appropriate healing ways have changed forever our understandings of the responsibilities of therapists and healers.

For more information please contact you local distributor or see:

The International Journal of Narrative Therapy and Community Work 2003 No.3 www.dulwichcentre.com.au 49