HOW I

How I create creativity (2):

Defining who I am
Lesley Johnsons inspiring tale of a collaborative approach to developing narrative in people with learning disabilities owes much to the enthusiasm, imagination and commitment of the Northern Star Community Arts Project, Bacons End Day Centre, Open Storytellers and the Solihull Care Trust clinical psychology and speech and language therapy departments.
Stories give meaning to our lives we are storytelling creatures who are constantly reviewing and interpreting our experiences and making links with what has happened to others. (Storytracks, 2009) istening to other people telling stories whether they are traditional, scary or romantic - helps us to make links with our own lives. It reminds us where we are in our own story, giving us a starting point for aspirations. Being able to tell others about our experiences helps us to evaluate and learn from them and make choices about the future. Being able to share a little of our lives with other people helps us to forge relationships: If you want to know me, then you must know my story, for my story defines who I am (McAdams, 1993, p.11). Yet people with a learning disability, especially those with problems with communication, may not have the skills or the confidence to tell personal anecdotes successfully. Our storytelling project started in September 2007 with an inspiring visit from the Unlimited Company, now called Open storytellers. Four members of the company came including speech and language therapist Nicola Grove and musician Jane Harwood. Their training explained how to set up a storytelling group, and their wonderful practical ideas for structure of the sessions, opening and closing activities and stories are now available in a BILD resource (Grove, 2009). We were fortunate to receive funding from Northern Star Community Arts for the training, contacts with professional storytellers and involvement in a storytelling project to capture the stories of the local community. This notfor-profit community company (Reg 4403293) is supported by the Big Lottery - Reaching Communities, Fair Share, Solihull Community Foundation and Birmingham Community Foundation, and works in partnership with local organisations. With the majority of its work being made possible only through the grant funding and donations it receives, Northern Star remains totally independent of local authority and other statutory control. Importantly for us, it is a small organisation willing READ THIS IF YOU WANT TO GIVE MEANING TO CLIENTS LIVES MOVE OUTSIDE TRADITIONAL SETTINGS DEVELOP MULTIDISCIPLINARY WORKING to embrace new projects and respond quickly to the needs of the local community. We planned the pilot of our project for January 2008. Our aim was to try to measure the effectiveness of storytelling groups. After a taster session for 15 people, 12 people with learning disabilities volunteered to join the storytelling group. Their communication skills ranged from 3-4 word level comprehension, with a much wider range of expression l-r, Karen, Lesley and Debbie Feeney from short, unclear phrases to full sentences. We were able to complete baseline assessThe group ran for 15 weeks over four months, ment with six members of the group using and was divided into three sets. We spent five The Bus Story (Renfrew, 1997) and structural weeks looking at the structure of stories inanalysis of a personal story (Grove, 2009) (fig- cluding setting, key characters and key events. ure 1). We were unable to complete baseline We spent the next five weeks looking at the assessments on the other six members due to emotions portrayed in the stories and the final availability of rooms, staff and people over the five weeks encouraging the telling of personal Christmas period. stories A session plan is in figure 2. Seven staff participated in this project: DebAfter the first few sessions, when everyone bie Feeney, Northern Star; Karen Moore, day was comfortable with the structure, we tended centre co-ordinator; Elaine Jones and Lesley to use four members of staff taking it in turns to Johnson, speech and language therapists; lead. We used three members of staff to each Stacey Carroll, speech and language therapy lead one of three small groups and an addiassistant; Dr Ruth Williams, clinical psycholo- tional member to be free to support individugist and Sophie, a clinical psychology trainee. als who may have needed any assistance durOur objectives were: ing the session. We had access to a small quiet 1. To evaluate storytelling as a therapeutic room should any member need time out. intervention to improve participants ability to Stories were selected to fit with seasons, tratell their own stories and to apply emotional dition, and the choice of the service users. The evaluation to them. collaborative nature of storytelling is the key to 2. To investigate the delivery of psychology this approach. The story is told by the storyteller and speech and language therapy services once through in its entirety, and the second and outside traditional day centres. sometimes third rendition is told collectively by 3. To promote the community presence of peo- Figure Moiras feelings about hernot new flat the1 group. The storyteller does question the ple with a learning disability in partnership group about what happens next but scaffolds with organisations outside the Care Trust. or facilitates the telling of the story.
Figure 1 Structural Analysis of Personal Stories Participants are asked to tell a story about something that has happened to them. Analysis of these personal stories is as follows: Structural features Abstract or preface Setting information Events Resolution Coda Evaluation Meaning Explains what the story is about References to place, time and key protagonists Two or more events which are coherently related to each other What finally happened A pragmatic signal that the narrative has ended Conveying the emotional significance of the event

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HOW I

The use of collaborative storytelling enabled the group members to practise storytelling techniques. We initially chose familiar traditional tales such as The Gingerbread Man and Rapunzel as these were more easily remembered and therefore retold more accurately. We also chose stories that had key repetitive phrases: for our scary story about a giant, Hairy toe! Hairy toe! I want my hairy toe! occurred throughout the story, enabling immediate and successful participation. Recording these key phrases onto Big Mac communication aids also helped participation and created anticipation. We wanted to teach service users to tell their own stories confidently and with increased coherence. The group work focused on teaching story structure, for example how to set the story geographically and in time, looking at key protagonists and the sequence of events. We placed heavy emphasis on emotional evaluations in stories, helping people to develop some anticipation of emotional reaction. In the final few weeks of the project we encouraged telling of personal stories based on the theme of the main story. For example, when looking at the story of George and the Dragon, we asked, When have you had to be brave? This interestingly brought a host of stories from the group about surviving dental and medical treatment and bullying in the past. The stories we chose towards the end of the project were designed to encourage the telling of personal stories around the themes of choice making, change, and experiences of fear, sadness and happiness. A story from one lady about the happiness of her nieces wedding and the wistfulness of I wished it was me proved quite poignant. Helping people develop the ability to apply emotional evaluation to their own stories supports choice and decision making, person centred planning and increasingly - capacity assessments. Weighing up which personal experiences - or aspects of them - are positive or negative, remembering how you felt and being able to communicate this is an important functional skill. So, how successful were we in meeting our objectives? 1. To evaluate storytelling as a therapeutic intervention to improve participants ability to tell their own stories and to apply emotional evaluation to them. Before and after project results of structural analysis of personal stories are in figure 3. For all but one of the four participating members, the number of events included in personal stories increased and for all of them the number of emotional evaluations increased. The Bus Story (Renfrew, 1997) measures the ability to retell a story by counting key pieces of information. There were clear increases in the Bus Story scores of all six participating members, in half the cases more than doubling (figure 4). The story of one client, DC, is in figure 5 (p.28). Although we had no control group, the measures suggest that this model for thera-

Enabling participation

Figure 2 Session plan

Figure 4 Bus Story scores Participant Scores Jan 08 JO AB DC TP T N 10 13 8 8 7 21 Scores June 09 29 37 16 11 19 34

Figure 3 Structural Analysis of personal stories - scores Participant JO AB DC TP T N Scores Jan 08 Events Evaluations Scores June 08 Events Evaluations

5 3 10 8 3 2 8 7 4 1 9 2 Did not wish to do personal story ( probably due to difficulties with expression) 20 0 17 3

peutic intervention was successful. We did not apply any language analysis to participants stories, as we felt the content or amount of information was most relevant. However, the detail of the transcripts shows more logical sequencing of events in stories and an increase in descriptive language. It is worth noting that, while we can develop and improve the narrative ability in people with a learning disability, they need to have had experiences which they can talk about. Stories are usually events that happen that are out of the ordinary. This group work highlighted that some people either have lives of monotony or need more imaginative ways of recording their experiences to help them retell them. We tried to encourage people to bring in objects, leaflets and photographs of their news, but this relies heavily on the support of staff. We have used communication scrap books in other parts of the service to record special events such as visiting the theatre. We were pleased to notice that, in addition to improvements in narrative ability, participants made progress in listening and responding to stories, which in turn promoted their ability to make and keep relationships within the group. One member of staff com-

mented that, to see someone move from using one word phrases to asking questions and interacting with his group is brilliant. 2. To investigate the delivery of psychology and speech and language therapy services outside traditional day centres Solihulls Adult Learning Disability speech and language therapy service has always provided a service for local day centres, as this is a practical model to gain access in one location to large numbers of service users. As Solihull is currently in consultation with parents, carers and service users about the modernisation of day services, looking to provide more person centred provision, we needed to see how delivering therapy outside the usual model would work practically. Several key points emerged. Firstly the room required for this size of group and type of activity is quite large, and funds are required to rent appropriate rooms and resources, such as chairs, flipchart and refreshments. We are indebted to Northern Star for providing the funds and facility for this project. Secondly, transport to the venue was provided from the local day centre by the centre management. We were very reliant on the efficiency

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HOW I
of staff and drivers to get the participants to the venue on time. This worked well, although attendance was restricted by the number of places on the bus. Finally, the project could not have happened without the member of staff released from the day centre. Karen Moore accompanied participants, organised packed lunches and medication and supported psychology and speech and language therapy staff who did not know all the participants well - with guidelines and risk management. Although Karen was generally there, the management at the day centre also made a commitment to provide cover when she was not available. Karen developed significant storytelling and group management skills during the project and reports, Storytelling has changed my practice as it shows how empowerment of a hero or heroine can change someones life path. It gives the service user the tools to evaluate past, present and future experiences. Clearly a number of organisational factors need to be in place before a project of this nature can be successful. In our case, the contributions of Northern Star and management and staff at Bacons End were critical. 3. To promote the community presence of people with a learning disability in partnership with organisations outside the care trust The storytelling group was held in a room rented for us by Northern Star in a local church. The group was held on the same day as the church provided a luncheon club for the local community. As the weeks progressed, we observed an increase in conversations between group members and other people attending the church. Northern Star also facilitated professional storytellers to come to the church, sometimes just to tell stories to our group but sometimes for the local community. Our group was therefore able to join in storytelling events within the community setting with other people who lived in the vicinity. Northern Star had also commissioned a professional storyteller to collect and tell stories from different groups of people within the local area, ranging from reminiscences of older people to current tales from the young. Northern Star facilitated the involvement of our group, helping them create their own story to be included in the published collection and to be part of the celebration with the rest of the community. All 12 participants, when asked, stated they particularly enjoyed being able to access this group in a venue outside the day centre. Although Debbie Feeney had worked with professional storytellers providing the local community with access to storytelling events, this was her first experience of working with people with a learning disability. Her view is that, it moves storytelling beyond entertainment its doing something worthwhile with storytelling. Since this project Northern Star has provided several new projects for peo-

Figure 5 Debbie C. Debbie is a 41 year old lady, who lives at home with her parents. She has 3 word level comprehension. She is highly motivated to initiate conversation but finds keeping to topic, identifying and naming of facial expressions and maintaining attention difficult. Severe anxiety can lead to some negative behaviour. To enable Debbie to get the most out of the group we needed staff from Bacons End to be very vigilant in providing reassurance as needed while she was on the bus journey. Debbie initially found it very difficult to hear stories that involved weather, especially storms and loud noises. At first she was not able to explain why she disliked this so much but, as time went on, she was able to explain her fear of being struck by lightning. This was so pronounced that we needed extra lighting on particularly dull days in order to keep her attention on the activities and not the weather outside. Over the time of the group, Debbies tolerance of weather stories increased, as did her attention and listening skills measured using EKOS (Johnson & Elias, 2002). Her Bus Story score also doubled.

Debbie enjoys a story

A professional storyteller

ple with learning disabilities, all based in the churchs community rooms. Service users particularly enjoy the luncheon club and craft workshops.

Resources Open storytellers - www.openstorytellers.org.uk Storytracks www.storytracks.co.uk References Grove, N. (2007) Exploring the absence of high points in story reminiscence with carers of people with profound disabilities, Journal of Policy and Practice in Intellectual Disabilities 4(4), pp.252-260 Grove, N. (2009) Learning to tell a handbook for inclusive storytelling. Glasgow: BILD Publications. Grove, N. & Harwood, J. (2007) How storytelling contributes to quality of life for people with learning disabilities. SLD Experience 48, pp.27-30. Johnson, M. & Elias, A. (2002) East Kent Outcome System for speech and language therapy. Ashford: Eastern and Coastal Kent Community Services. Contact Annie.Elias@ eastcoastkent.nhs.uk. McAdams, D.P. (1993) The Stories We Live By: Personal Myths and the Making of the Self. New York: Guilford Press. Renfrew, C. (1997) The Bus Story Test. Milton Keynes: Speechmark Publishing.

Positive experience

Delivering this type of intervention outside the traditional day centre proved to be a positive experience for both service users and the community in which we worked. I had not conducted a group over such a long period as five months before. Whilst it demanded rigorous planning, I felt it led to greater knowledge of the group members and greater insight into their communicative difficulties. Developing this approach with colleagues in clinical psychology gave us a better understanding of each others roles. Although the number of completed data sets was small, we felt that overall we made a positive improvement in the development of peoples narrative ability thereby improving self-esteem and the ability to reflect on experiences. Interactive storytelling can only serve to assist people in planning their services and enable more effective choice making: The personal story needing to understand who I am where I live work and play comes before understanding the abstract concept of where I want to be in the future (Grove & Harwood, 2007). SLTP Lesley Johnson is a speech and language therapist with Solihull Care Trust, e-mail Lesley. Johnson@solihull-ct.nhs.uk. The letter she used to seek consent from service users for inclusion of their scores and photos is at www.speechmag. com/Members/Extras.

REFLECTIONS DO I VALUE STORYTELLING AS A LIFE-AFFIRMING THERAPY TOOL? DO I FACILITATE RECORDING OF CLIENTS OUT-OF-THE-ORDINARY EXPERIENCES? DO I LOOK FOR OPPORTUNITIES TO INCREASE MY CLIENTS COMMUNITY PRESENCE?
Do you wish to comment on the impact this article has had on you? Please see guidance for Speech & Language Therapy in Practices Critical Friends at www. speechmag.com/About/Friends.

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Speech and Language Therapy

6 Downing Close Knowle Solihull B93 OQA

Dear

You attended a story telling group in 2007

A magazine called Speech and Language Therapy in Practice

Would like to write about our group

They may want to print your photo

They will not print your name

They may want to print some of the scores we used

We need to know that you are happy with this

Please fill in the form and send it back in the envelope

You can telephone me on 01564 732894 if you want to talk about this.

Thank you

Lesley Johnson Speech Therapist

I am happy for you to use my picture

I am happy for you to use my scores

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or

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