Simone Flavelle visited the Centre for Medical Humanities in March as our first international visitor on an ‘artist intensive’. She discussed her Lost Generation Project with members of the Centre and also gave a number of public talks.  What follows is an abridged transcript of one of her talks.

Simone Flavelle, Executive Producer of The Lost Generation Project, writes: I have worked in the Arts and Health area since 1990 and have been a passionate advocate for the development of Western Australian arts and disability practice since 1993. My work for DADAA began in 1994 and has included: board member; facilitator, writer, director and executive producer of performance projects and films; and management and coordination of arts projects including the development and maintenance of partnerships to support project participants. DADAA is the only truly state-wide Arts and Disability service in Australia and it also develops projects nationally and in targeted international sites.

The Lost Generation Project is about finding the stories of people with intellectual disabilities, many who have been institutionalised for most of their lives. It is about listening to, recognising and celebrating people who carry significant history of social isolation. The project is a partnership with DADAA Inc., the Western Australian Disability Services Commission’s Accommodation Services Directorate and the Western Australian community with the aim to facilitate social inclusion through arts and cultural activities. Since 2006, the project has worked with 275 participants, who are termed ‘storytellers, across 10 local government areas with 186 electing to make a short film as one of the project strategies. [Click here to see an ABC Stateline report on ‘The Lost Generation Project’]

In the context of the Lost Generation Project, to be ‘lost’ means to be forgotten, neglected, unnoticed, excluded.  To be found then, requires that the ‘lost’ be remembered, accounted for and included.  Set against the history of people with an intellectual disability in Western Australia, The Lost Generation Project recognises and celebrates the person or storyteller and their rights to have a voice, have that voice heard and be valued as part of their community.

This was the first time DADAA had worked in and with the Disability Services Commission Accommodation Services with its complex history of government driven policies that had segregated people with intellectual disability. It was a steep learning curve in how to navigate the variety of staff approaches towards the people they were working with, so the partners designed a hybrid model to fit participants, their circumstances and their communities.

The Lost Generation Project plan was to work with 550 adults living across 20 local government areas over a 5-6 year period and commenced in 2007 following three trial projects. In the project’s first year, nine storytellers created their films through a digital storytelling process. Each storyteller was given 48 hours with a film crew to create their story. They worked with the team to create a storyboard, learnt how to use still and film cameras and experimented with a range of storytelling techniques.  Quite often, the researcher/writer would also be Director but not always the case. Sometimes storytellers worked with one researcher, writer, director and editor the whole way through. The rough and fine cuts were done with the storyteller or their DSC representative/s.

The film process focused on each storyteller owning copyright to their film and numerous legal documents were created with an arts lawyer to ensure that the chain of title for each storyteller was in place. The storyteller has then assigned DADAA some rights. DADAA keeps an assets log and all screenings are recorded in that document.  Storytellers watched their films at their local cinema with family, friends, support staff and community members. Seeing themselves on a cinema screen had an enormous impact. Feedback from families has been that the experience has been wonderful as they see their person as being valued through the process of making the film and screening.

In 2008 and 2009 we began to work on different ways to screen storytellers’ films. An exhibition in 2009 at a former asylum, Heathcote Museum and Gallery, included ‘Pillow Stories’ in which three storytellers had their films installed in a pillow on a hospital bed which was one of their old beds. Another storyteller, Shirley, wanted to be able to move around with her film so we worked with her to install it in a handbag. Towel Towers was a projection of a film of clips from the 35 storytellers’ films onto an installation of 550 folded white towels representing the collective of people or residents accommodated by DSC in the area. The 35 projected faces were now recognizable as citizens of the City of Melville, standing out from the crowd

Having been under surveillance all their lives, with notes on this behaviour and that medication, storytellers’ screening of their films serves to shift the gaze on them from a deficit-based to an asset-based appreciation. It is a facilitated gaze but they are now in charge.  Storytellers are now paid to screen their films at Local Government Authority staff training. The essence of the Lost Generation project is to promote ACTIVE CITIZENSHIP for a collective of people who have been excluded as citizens. HAVING A VOICE is a dominant outcome in terms of the numbers of participants who elected to make a film.

For the next phase, we are retaining the branding of the project whilst exploring how storytellers can interact with digital technology and not be excluded from another community. The success of this will lie in the balance between digital/online viewing and interactivity with real life experiences with the aim being to keep the storyteller connected and building their narrative.

Another current project is the piecing together of the project’s narrative into a half hour documentary planned for launch in November this year. This will be a Disseminate Arts and Health publication of the project and you may visit The Lost Generation Project pages of that site here.

After a lifetime of being ignored and invisible, receiving ‘special’ services designed for people who were not the same as the rest of us, The Lost Generation Project participants have begun to be appreciated for who they are, not pitied for what they’re not.


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