People tell stories; stories are their identities. Families have stories, which illuminate their history, characteristics and beliefs. Peoples’ lives have many stories occurring at the same time, with different stories being told about the same event. No single story can be free of ambiguity or contradiction, nor can it encapsulate or handle all the contingencies of life (Morgan, 2000). I have worked in mental health for nearly 20 years; however, mental health has been a story in my family for much longer. I have written about my uncle Teddy (Smith, 2006) and his 40 years in Winterton Asylum and the impact of ‘pathologising’ stories on my family. This led to a particular dominant story in our family, ‘you must be mad’.

As occupational therapists, our professional story is full of ‘pathologising’ language and beliefs that transcend the relationships we try to create with people who use our services. In Teddy’s example, narrative ideas were used to co-author an alternative story from ‘you must be mad’. Developing alternative stories is a way of responding to these dominant narratives, and this is congruent with the principles of real enablement, valuing people and our interpretations of them. Teddy’s alternative story created far more options for understanding him – linked to the lives and values of other people, for example, how madness allowed him to get to the front of a queue by letting his voices out. His paranoia created a wonderful ability to asses risk and manage his loneliness, once telling me that ‘“they” [pointing to his forehead] are always there and sometimes even they help me’.

Working in the context of service user involvement has led me to challenge the notion of power and to question how this influences practice. Dominant stories or discourses in mental health can be deconstructed through therapeutic inquiry. The practices and processes that support suppressive systems or subjugating discourses can be made more visible and thus challenged. These dominant systems tend to exclude service user involvement and, at best, remain tokenistic in fostering service user involvement (King, 2004).

The central role of people in the design and development of the services they use is now recognised (Department of Health, 2001). This chapter aims to assist organisations that are working to involve service users and carers by providing a framework for involvement (Tait & Lester, 2005). It is this process of visibility, transparency and authenticity that needs to be embedded in any structure. This allows service users to step into their power and co-create real changes so that their alternative stories can be listened to and valued. The challenge for occupational therapists is to co-create inclusive practice that is substantive, transformative and valuable to service users and their families.

In narrative practice, one way of deconstructing dominant and unhelpful stories that people have about their lives is to question the discourses that support these stories. This can assist service users and their families to stop internalising oppressive, marginalising and stigmatising meanings and assumptions, and instead locate these within broader discourses. For example, as a member of a Partnership and Modernisation Board (PAM) multi-agency strategic management group for my organisation, I was asked to develop a service user framework to input into the PAM. A core group, including service users, got together to plan a day to help with this task.

We organised an informal event attended by over 70 service users where we invited stories of disrespectful experiences of involvement. I invited people to imagine disrespect talking, giving us advice about how it thrives, what tricks it gets up to and what would it say. Suddenly the room came alive as individuals gave testimonies about disrespect. I noticed a young man who was wearing a headset. He kept fidgeting and laughing, then he sat silently for about 10 minutes. I returned my attention to the rest of the group and we began discussing what is helpful or unhelpful when he held up his hand and pointed to the headset; I asked if he wanted to speak, and he just pointed again. Then another man said ‘he is telling you that the headset lets him speak and listen to his voices’. I thought what wonderful creativity; the headset helped him contribute to the discussion.

Resulting from this, part of our service user involvement strategy was to provide headsets; this young man is now involved in working with other young men, especially from the early intervention psychosis service. We have also established a ‘great ideas forum’, which pilots such ideas using an evidence-based approach that links into the service user involvement strategy.

A safe therapeutic culture is one where occupational therapists have respect and empathetic recognition for clients’ stories. The occupational therapist is responsible for the creation of a space in which the ‘not-yet-said’ can be said (Goolishan & Anderson, 1987), the creation of a safe therapeutic culture (Rober, 1998) in which subjugated or suppressed knowledge can be accessed (White & Epston, 1990). Thus, occupational therapists have to create spaces where clients’ stories can emerge; therapists must not overly structure these encounters. This may be difficult, because this space can appear empty, chaotic and risky.

At times this process of giving clients space to tell their story can feel too unsafe and too uncertain, even for the experienced therapist – this is unsafe uncertainty (Rober, 1998). At such times occupational therapists may retreat temporarily to a safer space taking a technical-rational approach or being the expert. When therapists revert to disease pathology to guide their thinking and judgement, this can be considered as an issue of power and they should seek to return to listening to their clients’ stories to create a new position of safe uncertainty (Rober, 1998; Smith, 2006). This way of working may be at variance with the multi-disciplinary team, who feel more comfortable with the traditional roles.

Professional identity consists of a set of values, attitudes, ideas, knowledge and skills. These combine and meaning is added to them through storylines and storytelling, thus making it possible for practitioners to articulate what is occupational therapy. This is when the process of really listening to the story becomes exciting – hearing occupational therapists speak out. From this perspective, the task of the occupational therapist becomes one of co-authoring within the systems, where they co-exist, allowing a story of professional identity to develop.

Mattingly (1999) suggests that, to develop such an identity, certain skills must be learnt; certain thinking must be completed around clinical reasoning. How we tell our story shapes our practice and the wider profession in relation to current thinking and perspectives.

The development of a professional identity involves fostering narratives consistent with the performance of occupational therapists. There is not one constructed self-contained notion of identity because storying identities are constantly formed in relationships. This is more a constructionist understanding of identity (Shotter & Gergen, 1989). However, occupational therapists can struggle to remove the filter of a model of practice when listening and engaging with a client and can favour the technical-rational story as truth. It is important to believe that it is possible to co-create a context that provides opportunities for the storying of professional identity as this keeps practitioners alert to the moments that can arise for story development: the process of the emancipatory narrative emerging (Smith 2006). For example, Elizabeth Yerxa describes the early struggles of occupational therapy: these stories made the profession stronger and more valued.

I want to tell you about Paul, a 54-year-old married man. He worked as a coalminer and a health-and-safety officer in mines in the north of England, attending to fatal accidents. He described himself as the most frightened man ever, suffering panic attacks and deep bouts of depression. I met him over 10 years ago when he attended a weekly a multi-media/arts group that I set up in a psychiatric day unit. Paul suffered badly from the stigma associated with mental illness and was afraid of anyone finding out he was using mental health services.

Paul’s attendance at the weekly group was his only reason for leaving home. He would often just sit and draw a picture or write, saying very little – the stigma had muffled his voice. He would say and do very little in his life; he could not sleep and feared appointments at the out-patient clinic with the consultant psychiatrist. He was afraid of flying and travelling abroad, avoiding any conversation with his family about this.

Although silent in the group, I gradually understood he was really listening, and even with rapid changes in group members, he knew everyone’s name. He reminded me who would not be attending, and why, as they all met for refreshments that he organised before and after the group. He began to arrive early to meet new members because he knew what it was like. He started to make signs and labels that would benefit the group; he developed a user-friendly description of the group with quotes from members and worked on the computer to design an evaluation form. This developed into a reflective storied diary, my first real experience of practice that involved narrative and the client’s story. Prior to this, the reports to the treatment team were about his anxiety and inability to cope with responsibility or to accept his illness. A narrative about Paul’s avoidance behaviour had gained prominence and as result team members talked about referrals to other services.

As he engaged in the group and, in particular, his documentary of himself, some words started to stand out for him, caring, good advice giver, good listener, trier, polite, clever man. We began to see a new story being co-created within the group and how he felt the group had helped him. He started to feel different and talked about stories about anti-stigma, stating

When I come here, it’s like there is something in the room, like a feeling I can do all sorts of stuff and it good stuff, and I am acknowledged…like doing the sheets we all fill in. I was amazed at how everybody said it was useful and we help each other…that’s what I need…there is no stigma when you say I have this or that (depression)… . I am me and that feels good again… it’s like in families like yours Graeme having someone who always pulls you down but then there is your favourite aunt who always reminds you who you are and why she loves you.

He had created this aunt-like narrative because, in his family, like my own, women were strong and fearless. His mother had stopped speaking to him because he had married a woman from a different religion. Using a clever word play, he had started to imagine the story of an aunt, ‘anti stigma’. This allowed him and others to see a narrative other than anxiety, and enriching this narrative at home in the family; he imagined ‘anti stigma’ helping him so that his family saw him as caring and responsible maintaining close relationships with his two married sons. This led him to supporting new group members. He remembered his story of his need to be a strong father and of family life before stigma and anxiety moved in, and I helped him to recruit his occupational activities into his new story to ensure that he could face stigma and anxiety if they returned.

As Paul told his story he noted that his ex-mining-colleagues, who had always valued his opinion and still kept in contact with him, had now revealed that they too were suffering. He described that anxiety and stigma had tricked him into believing he was the only one, and now a new story was emerging that he and others suffering together could also recover together.

He also recalled the strength in his relationship with his wife and that, despite the attempt of anxiety to destroy this, they thrived. As he told the stories of their love, I saw a new strength emerge. I was looking at a different person; it was the way in which he told his story that made him grow stronger and the way that I shared his stories with my colleagues made my practice grow stronger.

The documentation that we developed formed the bulk of the monthly review and ensured that the narrative of occupational therapy became the new resistance against ideas of disease pathology and biomedicine.

Several years later, Paul arrived at my door. ‘Now then’, he said, ‘I managed to move out stigma and anxiety and thanks to you; I now want to be a counsellor’. Paul is now a member of the group of service users who monitor the services I manage. He is now in his final year of a 3-year counselling course, a very proud good father and grandfather, and one who has at least two holidays abroad each year.

When we reclaim the stories we want to tell about our lives and when we reconnect with what we have lost or forgotten, then we become stronger. It is important that others bear witness to this process, as it is knowledge in the making. Not only are we telling our stories differently, but we are also listening differently. We are listening for people’s abilities, knowledge and skills. Narrative is defined as an account of occurrences Kirkpatrick (1983). Throughout history, stories have passed from generation to generation; they have mystified and healed. Whatever the message for the storyteller and for the listener, the experience of the story connects them to their culture, to their past, to their present and their possible future. During occupational therapy the client and the therapist experience the same story. Sharing the story enables people to understand themselves and the meaning of themselves better (McKay & Ryan, 1995).

We are now finding ways to acknowledge each others’ survival stories and to see the abilities that people have by combining the process of the emancipatory narrative and knowledge in the making: this is a powerful formula for co-creating real change in our clients’ lives and challenging our practice.

‘Stories are not material to be analysed; they are relationships to be entered’ Frank (1995, p. 200). Frank’s understanding of illness narratives consists of three types: restitution, chaos and quest narratives. The purpose of this classification is not to pre-know or pre-judge (Wungard & Lester, 2001) but to help create knowing by doing and being, by entering into mutual storytelling as a relationship, thus enabling the not knowing position to emerge (Hoffman, 1990). The illness narrative that Frank (1995) calls ‘Chaos’ brings forth uncertainty as the main plot, where individuals struggle to make sense of their world as the illness narrative takes hold. A Weingarten interpretive ‘quest’ is to see if something can be learned which is of value to others; leads to new insights; and for the self (Weingarten, 1997, 1999b).

Illness narratives are easily understood, and one of the biggest challenges for occupational therapists is to see their client beyond their illness. The restitution narrative is perhaps the most recognised illness form and the one often encountered by occupational therapists. Here the story focuses on the illness, assessment, treatment and prognosis, but there is little else. It concentrates on ideas relating to the grand narrative of disease pathology of modern medicine, and this is often the only perspective granted any credence. Some people, whose illnesses do not connect with the restitution narrative or who tell their stories in a different way that allows the emancipatory narrative to emerge, may feel disengaged and marginalised by the attention to their illness.

Here, occupational therapy can be at its most powerful. Clients become engaged in occupational therapy when the meanings that they have evolved no longer work for them, for example, at times of stress and crisis. The occupational therapist helps to co-create new meanings that are congruent with the client’s context developing knowledge by doing and engaging the client in, and through, meaningful activity. In this manner the client’s story is privileged, allowing the client to be heard and their story to unfold.

Peter was 48 years old and had been diagnosed with alcohol problems and depression in 1997. Then 2 years later announced ‘I have just got obsessive compulsive disorder’. He attended the community addiction team (CAT) in the north of England. In the team review meeting I listened to the illness narrative emerge triumphantly, condemning Peter as someone who was manipulative, secretive, incapable of making decisions, difficult to engage, certainly not to be trusted and always late. The restitution illness narrative followed the same story, each time reaching the same conclusions. After a few months he was referred for occupational therapy; I was told not to expect too much but I was a young enthusiastic therapist who believed in hope, and I still do.

After several meetings with Peter, for which he was late but always apologised, he expressed an interest in coming to the twice-weekly men’s meal-planning group. He commented ‘I make really good Yorkshire puddings; my mother showed us when we were children, and it is all about getting the air in when mixing.’ The group met on Tuesdays, when members would plan the meal and allocate tasks, agree on the time that the meal would be cooked and served on Thursday. The group had operated for several weeks but had not yet had a meal cooked and served on time.

During Peter’s first group, the eight men agreed that the only way to complete their task was to heat frozen pies and frozen chips. Peter sat and listened to the men deciding where to shop, who would go and how to deal with problems. He interrupted the conversation, ‘I can show you all how to make anything you want’. We all looked astonished. ‘You see every thing has an essential ingredient especially with cooking, if you remember that ingredient then you are half way there’. He showed the others how to make lists to help remember things, he emphasised the importance of practising and he recalled the way his mother cooked. We began to reminisce about mothers and sons. Suddenly multi-contextual stories emerged. Nine weeks later we sat down together and had served on time a wonderfully cooked Christmas dinner, roast duck with fennel, served with honey roast vegetables and the biggest Yorkshire puddings I had ever seen. The group’s favourite saying became – what is the essential ingredient?

An alternative type of expertise had started to emerge. Peter’s ability to plan was brilliant, as was the group’s capacity to believe in itself when other treatment team members doubted and questioned the group. Over time, Peter’s story unfolded and he became the expert because the group created a space for his expertise to come alive. Peter recognised that he had memory problems and asked for tests that later established that he had early-onset dementia. Previously, the narrative of depression and alcohol problems had prevailed. Through the restitution narrative, Peter emerged as a loving father, a humorous, supportive and resourceful friend; his creativity shone through occupational therapy. These stories challenged the dominant narrative and were reported back to the treatment team. Peter later insisted that his key worker put the following on his case notes, ‘always wait for Peter because he would always wait for you, and he is the best at being late, something he is very proud of’.

I reflected with a senior colleague, could occupational therapists today create social inclusion and again become social reformers? The challenge for the profession is to make this happen. We have a responsibility to lead on social reform, as many of our service users experience occupation deprivation. Everyone has a right to participate in occupation and the right to choose not to. My colleague described a wonderful example how to face this challenge.

At lunchtime, Georgina had returned to the ward from attending a creative group in the occupational therapy department where she had been working on one of her paintings of cats. When asked if she would like her lunch she replied, ‘I couldn’t possibly eat anything; I’m so full of art’. The words ‘full of art’ are so meaningful, communicating the significance of the activity to her. Her artwork and the group have become part of her identity; her belief is that she is attending art lessons where she excels at painting. This sense of her achievement lasts beyond the sessions and the ward nurses see her work as something to talk about and celebrate. In the ward, she does not respond with much interest to painting and she is unable to concentrate on activities. However, during occupational therapy, she works with precision and her attention can be focused for over half an hour.

Georgina is 82 years old, has led a full and interesting life, but now has Alzheimer’s disease. She retains a strong personality but frequently becomes confused and disoriented, paranoid and aggressive towards others. Before she joined the art lessons, staff reported that her mood was low, she isolated herself and would not involve herself in activities. The task for the occupational therapist was to create an environment where Georgina could thrive and where her needs for success, inclusion and identity could be nurtured. Entering into her reality, listening to her thoughts and responding to her humour are more important than the symptoms of her illness.

To make sense of her expression that she could not possibly eat as she was full of art, for me, was the emancipatory narrative, the moment for difference to occur. Bateson (1972) calls this difference that creates a difference. It is the responsibility of the occupational therapist to create enough difference in the story that can allow somebody to be included within their own life to co-create the context where the story can be enriched and others bear witness to this process. Social inclusion becomes part of that process and there is nothing more powerful for individuals, families and communities to feel this. This is where the power is given to the people who need it, when occupational therapy is at it most transformative and occupational therapists become social reformers.

I cannot resist the urge to tell you about people who I work with who inspire me and have helped create knowledge in the making. I am a practitioner who works with clients of all ages in a range of different contexts. I want to finish by coming full circle. I am writing this chapter 12 days before my dreaded birthday. I work in a school in the north with a group of 12–13 year olds children.

I teach part of their personal health social and citizenship education course. In a recent lesson, I was joined by Jean, who told the children a story about her life 3 years ago. She introduced her family through photographs: David, her husband, Mark, her teenage son, Thomas (9) and Jack (6) and their two dogs. They were a family who loved football and having fun.

Jean gave wonderful accounts of intimacy, love and warmth within the family. The children listened carefully – she had their full attention. After 20 minutes she stopped and I asked the children to imagine something that might happen to this family. What would it be? How would life be different? I asked what message would you send that would be helpful to the family. As they discussed in small groups a range of possible stories unfolded:

• David lost his job because he had depression.
  
• Thomas was bullied at school.
  
• Mark left home with his girlfriend because she was pregnant.
  
• David drank too much and Jean kicked him out.
  
• They divorced.

I asked Jean to continue, she slowly rose from her chair, stood silently for a few minutes and then said:

Mark took his own life about 14 months ago, he hanged himself in our house, in our en suite bedroom…I don’t know why, sometimes I think I do but… and I blame myself for not seeing it, you see he seemed happy he was just a normal young lad just like you, he loved his brothers. That day our lives changed forever…I never thought that suicide would be knocking on my door but Graeme has asked me to come today and think that if suicide was to speak what would it say? It would tell you to be quiet, blame yourself, don’t tell anyone what is on your mind, everyone is against you, whatever is on your mind or what happens, you are better off not being here…well I think if you feel like Mark might have felt, please talk to someone. It is good to see that these lessons are happening, Mark was your age once and he would have really liked being in a lesson like this.

The children sat spellbound, listening to Jean’s every word. I noticed one of the girls scribbling on a piece of paper, and at the end of the lesson the children burst into spontaneous applause for Jean and each in turn thanked her for telling her story. On the way out, the girl handed the paper to me; she had written

I think Jean is really brave and a lovely mother and she has been through a lot, I think she needs a big hug that is what I would do. The whole family needs a proper massive cuddle. I think that I understand more and that any family like Jean’s and mine have to watch out because it can happen to anyone. I loved the lesson, Sir.

Occupational therapy is a complex intervention (Creek, 2003) and can convey a message of hope, courage and resilience and can co-create a new story connecting the past, present and future. But this can only happen if occupational therapists work across boundaries, believe in themselves, the narrative and the story in the making. We can lead, inspire and find that we have what Peter would call that essential ingredient.