Trebus project, named after 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. Clegg is gathering stories from dementia sufferers in a similar spirit.
He described his early career as a painter turned sculptor who ran a gallery called ‘Work for the eye to do’ described, after its close, as a “boot camp for the visually illiterate” by someone at the Tate. He closed it at the end of the 1990s because of disillusion with the London with art scene and impulsively applied for a job using art therapy with those suffering dementia. But he ended up in charge of project when his manager left. Initially given two days of training he learnt more, he said, from his first dramatic encounter: the door opened by a naked woman clad only in an oven glove.
He said that, from the beginning, he listened carefully to what his subjects told him, writing it down ‘without editing’ (though see below). He discovered, by chance, that when he read their own accounts back to them, they recognised their stories (despite their apparent memory impairments). They would then add to their accounts: sometimes strictly consistently, sometimes changing some details but leaving the essence the same.
In fact Clegg does not think that dementia patients are ‘unreliable narrators’ in Tom Kitwood’s phrase. They often have very clear, especially physical, memories. It is rather that events remain, especially those of the ‘reminiscence bump’ of between age 14-28, coinciding with the 1930s and 40s but fragmented. The past can be so strong that they talk of it being physically present in the building. One subject, Sid, described an event as down the corridor or under the floor. The fireplace from his childhood was somehow plastered into the wall. Clegg said that placing memory into the architecture is common often with the past physically underneath them. Perhaps making sense of the distance spatially given temporal disruption. (Subjects sometimes place Clegg into the past, as part of their history, to make sense of the fact that he knows about it, having forgotten telling him.)
My colleague, Bernie Carter, expressed a worry she has in making sense of children’s utterances. She described herself as 'working with fragments' and then putting them into some sort of order. But perhaps this imposes a merely adult structure. It seems to me that there might be two worries here. It might be that the process of retelling or re-presenting them imposes more of a structure than there really was, thus distorting a significant absence. But I think Bernie’s worry was also that there might be a child’s structure that became buried in her own restructuring of their apparently fragmented utterances. (I’m not sure that I share the latter worry.)
Clegg’s response was that his subjects reconnected with their own words when read back to them. So, I guess, that was one test that the structure was still in some sense theirs. But, he suggested, had he not assembled the words in some sort of order, they would not have got much from that. So it was not that he did no editing but that he did merely minimal structuring.
He finished by talking about people who had moved beyond the ability to express themselves linguistically and one woman in particular, Winnie, who presented practical problems for caring having a very short attention to any activities and being aggressive with other patients and staff. His approach was to follow what it was they could still do (which I took to be a case of seeing the sense in what they do, not simply tagging on behind). In Winnie’s case, he discovered that she reacted by pointing to a video of herself (possibly a trace of a memory technique taught to early stage dementia sufferers), would point to pictures in books and would play sounds from an electric guitar by striking the frets with a drum stick. In each of these cases there was an order in the short repetitive actions she carried out. Clegg slowly built up these repeated actions in which she seemed contentedly absorbed. In the film he made of her she looked, according to her daughter, no longer like a dementia sufferer but her mother of old, albeit ‘slightly stoned’.
I was left with three thoughts.
1: In the case of Winnie, we watched a film put together using a screen divided into nine segments and with different activities taking place in most of them. Clegg, originally an artist after all, pointed out the finished result (originally intended for a number of different screens) made for an attractive art installation. The thought was left hanging that this, too, had something to do with its therapeutic effects but that seemed to me to be changing the subject. It is one thing for dementia sufferers to engage with art, it is another to make art (respectfully, non-exploitatively) out of them. Of course, the world will be better if both are possible.
2: I wondered, but only as I left for the station, whether what was going on both in the assembling of narratives and in the musical work was a form of understanding. It seems so in the former case but less so much in the latter. To what extent do we understand Winnie by seeing her take pleasure in the guitar for example or pointing to spots drawn on a table? (The sense of ‘understand’ I have in mind is more than simply predicting that she will continue to do that.) Perhaps, in so far as the gestures are shared even if in her case they have become more like fragmented words than coherent patterns of activity.
3: There is a genre of presentation which people who have done good things, have changed the world rather than described it, seem forced to adopt in giving presentations in universities. I was more impressed by David Clegg the person – who, for a year, lived one week in four in a care home, for example – than this summary suggests. But at the same time, I never really know what to do with presentations of, in effect, heroic endeavour. (His conclusion, for example, was biographical rather than dialectical: ‘Well this is what I’ve been doing for the last few years.’ I think responding to the same gentle disorientation, a colleague pressed the question ‘why?’ at one point – ‘why did you look for that sort of thing?’ – but without quickly hitting shared narrative form.) And thus I’m forced by habit to reorder his story as making some central claims about the nature of dementia, narrative and sense rather than saying: this is the history of what I did. But there’s an irony in my retelling the story in my own way in this case.