The 1000 Voices disability life stories project Pilot lessons and where to from here Dr Naomi Sunderland, Prof. Lesley Chenoweth, Dr Sally Robinson, Dr Nicole Matthews, Anne-Marie Tripp United Nations ESCAP Expert Group Meeting October, 2011

“I am now in a new Season of Life.” Overview 1.What is 1000 voices? What? 3.Pilot learnings 4.Where to from here?

Our goal… Over 20% of people live with a disability in most countries around the world. Yet we still do not hear, see, or understand enough about these people’s lives. Our goal with this project is to gather and share life stories from people with disabilities from around the world. We will use these stories collectively to raise awareness and shape research, policy, and service outcomes internationally. ‘If life is a race… I am a tortoise’

Objectives 1.Online community; 2.Diverse stories, diverse delivery; 3.Large scale qualitative and mixed methods research; 4.International partnerships and research network; 5.Research translation and community participation; 6.Evidence based policy and practice.

The Global Human Network Australia* New Zealand United Kingdom* Ireland* South Korea* * agreed USA Canada* Sweden Botswana * Japan Others?

The approach Office for Research Creative narrative research and analysis Facilitated creative narrative photovoice and participatory video Multimodal research and analysis Film studies and analysis [critical] discourse analysis

The data  Participant directed rich accounts of lived experience  Multimedia: Single mode (text, photos) ‘Multimodal’ (see Lemke, 1998)

Disability “life stories” Disability – self defined Stories of lived experience – self defined Doesn’t need to be from A-Z (chronological) – but it can be Doesn’t need to be prepared all at once – but it can be Traditional narrative research not enough. We need: Office for Research

The first 100  117 men, women, young old, wide range of impairments and conditions;  Story choices mostly text and photos and hyperlinks to stories.

“I've actually have a lot of stories to tell that will make this web page too long.” Learnings # 1  Not just multimodal… ‘Hypermodal’ (see Lemke, 2002)  ‘Reflective multimodal narrative’ (forthcoming)  Narrative ‘chains’ (Iedema, 1998);  Community of ‘members’  Dynamic.

Learnings # 2  Sampling »Large range of people self selecting to participate (viz keywords) »Self selecting participants ≠ people with intellectual impairments or people in institutions > missing voices; »Need for facilitated participation and selective sampling.  Other: »Not a “quick grab” data collection method; »Relational at multiple levels; »Cross media marketing and networking; »Comprehensive funding options and partnerships required. “Little did I no that life is not always that simple.”

In conclusion: Some words [and non words] from our members… (and pictures of our team…) Dr Nicole Matthews Senior Lecturer Macquarie University Dr Sally Robinson Research Fellow Griffith University Prof. Lesley Chenoweth Research Director Griffith University Anne-Marie Tripp Research Assistant Griffith University

Some links 1.Self initiated representations e.g. ‘In my language’ by Silent Miaow (2007) Part I & II;Part I 2.Exploding Art: DIScoveringABILITIES Project (music therapy)DIScoveringABILITIES Project 3.Photovoice projects;projects 4.Participatory video projects;projects 5.Digital storytelling e.g. Centre for Digital Storytelling Berkely CA;Centre for Digital Storytelling 6.Sensory ethnography - Harvard University Sensory Ethnography Lab.Sensory Ethnography Lab

Further reading Booth, T., & Booth, W. (1996). Sounds of Silence: Narrative Research with Inarticulate Subjects. Disability & Society, 11(1), Brown, J., Dodd, K., & Vetere, A. (2010). 'I am a normal man': a narrative analysis of the accounts of older people with Down's syndrome who lived in institutionalised settings. British Journal of Learning Disabilities, 38(3), Castleden, H., Garvin, T., & First Nation, H.-a.-a. (2008). Modifying Photovoice for Community-Based Participatory Indigenous Research. Social Science and Medicine, 66, Chapman, M., & Docherty, D. (2011). How to collaborate on producing a life story. Learning Disability Practice, 14(5), Ellem, K., Wilson, J., Chui, W. H., & Knox, M. (2008). Ethical challenges of life story research with ex-prisoners with intellectual disability. Disability and society, 23(5), Ewick, P., & Silbey, S. S. (1995). Subversive Stories and Hegemonic Talkes: Toward a Sociology of Narrative. Law & Society Review, 29(2), Few, A. L., Stephens, D. P., & Rouse-Arnett, M. (2003). Sister-to-Sister Talk: Transcending Boundaries and Challenges in Qualitative Research With Black Women. Family Relations, 52(3), Gilson, S. F., Bricout, J. C., & Baskind, F. R. (1998). Listening to the voices of individuals with disabilities. Families in Society, 79(2), Goodley, D. (1996). Tales of hidden lives: a critical examination of life history research with people who have learning difficulties. Disability and society, 11(3), Hamilton, C., & Atkinson, D. (2009). ‘A Story to Tell’: learning from the life-stories of older people with intellectual disabilities in Ireland. British Journal of Learning Disabilities, 37(4), Kielhofner, G., & Mallinson, T. (1995). Gathering Narrative Data Through Interviews: Empirical Observations and Suggested Guidelines. Scandinavian Journal of Occupational Therapy, 2(2), Lindemann Nelson, H. (2001). Damaged Identities, Narrative Repair. New York: Cornell University Press. Mintz, S. B. (2008). Unfitting Stories: Narrative Approaches to Disease, Disability, and Trauma. Biography, 31(4), Rose, I. (2008). Autistic autobiography or autistic life narrative? Journal of Literary & Cultural Disability Studies, 2(1), Sample, P. L. (1996). Beginnings: participatory action research and adults with developmental disabilities. Disability and society, 11(3), Wang, C. C. (1999). Photovoice: A Participatory Action Research Strategy Applied to Women's Health. Journal of Women's Health, 8(2), Winston, C. E., Philip, C. L., & Lloyd, D. L. (2007). The Identity and Success Life Story Method: A New Paradigm for Digital Inclusion. The Journal of Negro Education, 76(1),