1. Lived Experience of Older Women with Learning Disabilities Alison Pointu & Nalinie Ranpurias a.pointu@nhs.net

2. Background 1.5 million people with learning disabilities Largest group are older women Very little knows about their experiences of older age Researchers had talked to professionals and relatives but not listened to their stories

3. Participatory Research Over the past twenty years there has been an increase in inclusive research methods with individuals with a learning disability Life story work - Professor Dorothy Atkinson, Professor Jan Walmsley, Booth & Booth & Dr Sheena Rolph Partnership with people with learning disabilities

4. Key Principles Owned by people with learning disabilities Furthers the interests of people with learning disabilities Involves people with learning disabilities in the research process People with learning disabilities have some control over the process and outcomes The questions, process and reports must be accessible Walmsley & Johnson, 2003 p. 64

5. Sample: Expert Group – The experience of growing older You are being asked if you would like to take part in an expert group. This letter will help you to decide if you want to say yes or no. The group will meet once a week for six weeks. We will then meet every month for a year. The research is about women with learning disabilities growing older. You will be helping me to get the research questions right. We will also take some photographs to help talk about our lives. You do not have to take part you can say yes or no.

6. Expert Reference Group

7. Experts: Photographs

8. Handing over the camera Photo-Elicitation Visual methodology held some answers Photo-elicitation Very little research using this method with people with learning disabilities Picture this: the use of participatory photographic research methods with people with learning disabilities (Aldridge, 2007)

9. The value of photographic methods Richer understanding of their experience Captured BY the women themselves. Facilitated a window into their day to day lives as well as their contacts with people Pride and accomplishment Improved engagement and relationships Helped to bridge the gap

10. Design Taking photographs and listening to stories helped me to understand their experiences This shaped the design of the study that combined verbal and visual accounts

11. Main study Inclusive Approach Ten Women Interviews and Photographs Narrative Analysis Asset Framework

14. Women with learning disabilities should be included in research that is inclusive and brings them in from the shadows of society giving both visibility and voice.

15. Acknowledgement & Thanks Nalinie, Christine and in memory of Pat and Wanda. All of the women who took part in this study and for allowing me to share some of their photographs My doctorate supervisors Professor Fiona Brooks & Dr Roja Sooben Photosymbol picture bank

16. References Aldridge, J. (2007). "Picture this: the use of participatory photographic research methods with people with learning disabilities." Disability and Society 22(1): 1-17 Atkinson, D. & Walmsley, J. (1999) Using Autobiographical Approaches with People with Learning Difficulties. Disability & Society. 14: 2, 203-216. Atkinson, D. (2004) Research and empowerment: involving people with learning difficulties in oral and life history research. Disability and Society 19 (7): 691-702. Booth, T. & Booth, W. (1996) Sounds of Silence. Disability and Society. 11(1): 55 -69. Booth, T. & Booth, W. (2003) In the Frame: photo voice and mothers with learning difficulties. Disability & Society, 18 (4), 431-442 Boxall, K & Ralph, S. (2009) Research ethics and the use of visual images in research with people with learning disabilities. Journal of Intellectual and Development Disabilities. 34(1), 45-54 Pink, S. (2007) Doing Visual Ethnography. 2 nd Ed. London, Sage. Radley, A., Hodgetts, D. & Cullen, A. (2005) ‘Visualizing Homelessness: a study in photography and estrangement’, Journal of Community and Applied Social Psychology. 15, 273-95. Rolph, S. (1999) The History of Community Care for People with Learning Difficulties in Norfolk, 1930- 1980. The role of two hostels. Unpublished PhD thesis, Milton Keynes, Open University Walmsley, J. (2001) Normalisation, Emancipatory Research and Inclusive Research in Learning Disability. Disability and Society. 16, 2, 187-205. Walmsley, J. and K. Johnson (2003). Inclusive Research with People with Learning Disabilities. London, Jessica Kingsley Publisher.