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Sharing personal experience with people who have severe and profound communication difficulties.

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Narrative recall of personal experience is critical to the formation of personal identity, is fundamental to the process of decision making, and is one of the main ways in which people make and sustain friendships over the lifespan. For people with severe and profound disabilities, this kind of anecdotal storytelling is extraordinarily difficult. Evidence suggests:- • Staff and families tell stories ABOUT people with high support needs, but not WITH them • Lives are dominated by routines, so there are few reportable experiences. This reduces the likelihood of recall, limits the potential for social learning and leads to a lack of motivation to tell • Experiences that could be made into stories pass unnoticed or are told only by staff • Social networks are restricted, so there are few people interested in hearing a story • Additional problems include the difficulties for families in recalling highlights from their children’s lives and the prioritization of choice and control over issues of social inclusion. (Grove, 2007) Storysharing™: is one of the strands of the Mencap Involve Me project 2009-2011. It is an approach developed over 10 years of research and action learning, into the ways in which stories are shared between friends in everyday life. Funded by the Partnership Board in Somerset, nine courses have been run over 3 years with 77 service users, 39 staff, in 8 residential homes and 1 day centre. Qualitative data were collected, including: observations of sessions and interviews with staff before and after the project. Groups are now being run by staff, with people visiting each other to share their stories, and meeting up locally. We are on our way to establishing the main aim of the project: to develop a narrative culture across the service. This presentation will introduce the principles of storysharing, demonstrate the process through role play and video/audiotaped evidence, and discuss the significance of narrative in personal and social development.

Nicola Grove is Director of Openstorytellers Ltd, the first company of storytellers with learning disabilities. She is a retired speech and language therapist, with specialist interests in signing and augmentative and alternative communication, and inclusive approaches to subjects in the National Curriculum, as well as narrative and storytelling. publications include:-

Grove, S., Grove, N., Myerscough, T. (2010) Intellectual disabilities and war: Issues for consideration. Journal on Developmental Disabilities, (16)/1, 82-90. 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, 252-259 Rudd, H., Grove, N & Pring, T. (2007) Teaching productive sign modifications to children with intellectual impairments Augmentative and Alternative Communication, 23, 154-163. Grove, N. & Dockrell, J. (2000) Multi-sign combinations by children with intellectual impairments: an analysis of language skills.Journal of Language, Speech & Hearing Research, 43, 309-323. Grove, N., Porter, J., Bunning, K. & Olsson, C. (1999) Interpreting the meaning of communication by people with severe and profound intellectual disabilities:Theoretical & methodological issues. Journal of Applied Research in Intellectual Disabilities, 23

Grove, N. (2010) The big book of Storysharing:At home, in school. London: SENJIT /Institute of Education. Grove, N. (2009) Learning to tell; a handbook for inclusive storytelling. Kidderminster: BILD publication. Grove, N. (2005) Ways into Literature. London:David Fulton. 2nd Edition of Literature for All: London: David Fulton. Joint winner NASEN book award, 1999. von Tetzchner, S. & Grove, N. (Eds) (2002) New developments in Augmentative and Alternative Communication.. London: Whurr Publishers.

Grove, N. (2001) See what I mean: guidelines for the interpretation of communication by people with severe and profound disabilities. BILD Publications. Grove, N. & Park, K. (1996) Odyssey NOW . Jessica Kingsley Publishers

This talk is part of the Developmental Psychiatry series.

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