IASSID EUROPE, INAUGURAL CONFERENCE

by Eilín de Paor, Senior Occupational Therapist, Cheeverstown House,

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Dublin, 12–15 June 2002
The IASSID conference at UCD was wonderfully well organised and well attended. In the region of 300 presentations were given by speakers from Ireland, Europe and beyond. As a therapist who is relatively new to the field of learning disabilities, I found it incredibly difficult to choose from a programme of so many interesting presentations. A large number of the clients I work with have either profound and multiple disabilities or exhibit behaviours that can be challenging or self-injurious. I came to the conference hoping to get ideas that would inform and enhance my practice. I was not disappointed. The following three presentations demonstrated practical, innovative interventions that have been found to be useful with clients with complex needs.

Real lives, real stories: The use of multisensory story-telling with people with profound and multiple intellectual disabilities – context and analysis (Loretto Lambe and Morag Watson, PAMIS, University of Dundee, Scotland). This presentation described a project carried out with 50 children with profound and multiple learning disabilities. The idea for the project came from Chris Fuller’s range of ‘bag books’ (bagbooks@appleonline.net) and involved the development of a multi-sensory story for each of the children As each line of a story is read, the reader presents the listener with a card with a toy or sensory item attached to it and encourages him/her to explore the object by touching, smelling, looking at or listening to it. In this way, the story becomes a rich sensory experience for the listener. The stories were developed to use sensory materials and story lines specific to each child’s particular interests and experiences. They were also designed to provide opportunities to work towards individual educational goals—reaching, grasping and releasing, turn-taking, verbal expression, etc. The researchers suggested that such custom-made, multisensory stories can give pleasure and real benefits for children with significant disabilities.

Identities in transition: Life story books for people with profound learning disabilities (Helen Hewitt, University of Nottingham, England). Stories of a different kind were the topic of Helen Hewitt. Her experience as a nurse with people with learning disabilities who could not speak led her to study practical ways of enhancing the quality of the service provided to them. She developed the practice of ‘life-story books’—books or scrapbooks compiled by staff for non-verbal people with learning disabilities, as a record of his/her life story to date and, as such, of his/her identity. It may include childhood photographs, scraps of material, certificates awarded, travel tickets from journeys undertaken, recollections of family members and friends etc. Kept up-to-date, referred to frequently and treated with respect, life story books can be valuable tools for ensuring that, particularly during transition times in his/her life, an individual’s important personal information is not lost. By compiling and reading life-story books, staff can learn to know the people they work with as ‘people’ with unique experiences and identities, rather than as ‘clients’ or ‘patients’ defined by their needs and difficulties.

Creative ways of communicating about cancer with people with intellectual disabilities: The use of picture books and theatre (Irene Tuffrey-Wine, Dept. of Psychiatry of Disability, St George’s Hospital Medical School, London) The presenter described how she, her colleague Jane Bernal and a woman with learning disabilities who had personal experience of cancer, wrote a book called Getting on with cancer, which is soon to be published in the ‘Books Beyond Words’ series. The book has been written as a resource for people with learning disabilities who are diagnosed with cancer. Through a story, it explains what cancer is, the physical and psychological feelings that someone diagnosed with cancer might experience and the treatments they may need to undergo. The story has been shown to several groups of people with learning disabilities and their feedback has been used to make sure that the language and the illustrations in the book are as clear and understandable as possible. The presenter also outlined her involvement with the Strathcona Theatre Company, a travelling company of actors who have learning disabilities. The company showed a play, A billion seconds, and gave an educational theatre workshop to audiences of people with learning disabilities, again addressing the theme of cancer, with an emphasis on how to recognise if you are not well, and when and how to look for help. The innovative interventions described in this presentation show how important/sensitive information can be made more accessible and relevant to people with learning disabilities.