"I want my story told warts and all," said Nelson, "or not at all."
Since 2001 artist David Clegg has been capturing the life stories – warts and all – of people living with dementia; stories ‘from the edge’ that would otherwise have been lost.
Clegg’s groundbreaking work began when, through work in the care sector, he met Sheila Hugo, an 87-year-old woman with dementia. At Sheila’s suggestion David began to piece together her life story – a story she admitted she could only remember ‘in bits’. Sheila’s life had somehow gone missing: her care notes said she was depressed, demented and alcoholic – and not much else. David set up his tape recorder and, after a little encouragement, Sheila began; "I was born Sheila Val Jean Hugo, a descendant of Victor Hugo, writer of The Hunchback of Notre Dame." Over the course of two years, David helped Sheila put together, from fragments and flashes of memory, the story of her extraordinary life, a life that featured lion tamers, famous actors and musicians and dates with the Acid Bath Murderer.
David started to visit care homes and hospitals in 2002 to meet more people with dementia and collect their stories. Such characters as a member of the Hitler Youth, a cowboy, a professional boxer, a Bletchley park code-breaker and two self-proclaimed spies told stories for the archive, as did others from the vast cast of ordinary people, housewives and odd-job men, ‘the disappeared’ who fill every care home.
The words of the storytellers have been maintained throughout. Some stories place a high demand on the reader’s creative imagination and willingness to take an active interpretative stance to fill in the gaps and disentangle the real from the symbolic. ‘Ancient Mysteries’ – a title chosen for her own story by one of the participants – describes the feel of the project perfectly.
“We should remember that these are living stories rather than fossilised sequences of facts. It would have been easy to rearrange the pieces, select only the most compelling, the fullest or most coherent version of each repeated incident, and fashion easy-to-read narratives, or poems, or pieces of ‘creative biography’,” says Clegg, “but to do so would limit the richness of the stories, dismiss as unimportant the rhythms and repetitions, conceal the struggles the storytellers endured, and rob the reader of the deeper layers of meaning. The ‘grit’ within the stories – the way they juddered, backtracked, came to dead ends or created worm-holes between times and places – was always an important part of the work.”
A series on Radio 4 and a recent hour-long special on Resonance FM have taken the Trebus Project to a wider audience.
Clegg named this work the Trebus Projects in honour of Edmund Trebus, a Polish war veteran, who filled his house with things the rest of the world had decided were rubbish, convinced that in time a use would be found for them. In his own way, David became a hoarder of the fragments and remains of the memories of people who have dementia. Working intensively and over long periods of time with the same people he built up a fascinating record of lives that would otherwise have been lost to history. What began as an art experiment has grown to become the largest archive of first person dementia narratives in the world.
David’s latest work is on ‘An Occasional Cobra / ROOM 21’: an interdisciplinary exploration of the narratives of a war correspondent, a diplomat who spent his childhood hiding from the Nazis, and a secretary at the Nuremberg trials, who, by coincidence, occupied, one after the other, the same room in a care home.
‘The Trebus Project throws down a gauntlet to the world of contemporary art, so often obsessed with youth, sensationalism and celebrity.’
Harry Eyres - Financial Times.