Please say something about how you got involved with The Trebus project and how this work relates to your earlier life as a sculptor.
The Trebus Project grew directly out of the work I was already doing as a sculptor. The Trebus Project is just a name I gave to the work I do as an artist. Sometimes it involves commissioning or collaborating with other artists, musicians and filmmakers, but mostly it’s just me. I never felt that I had changed focus at all. Twenty-five years ago I was making conventional abstract steel and wood sculptures. Five years later, I was more interested in the space around the sculptures and the studio as a social space, by which I mean I spent most of my time talking and drinking. I started to make installations with ready made domestic objects, which led eventually to making a few installations with dust, ash and sound, which in turn led to pure sound installations. I was never a hammer and chisel, stone-carver type sculptor. I was interested in finding out what sculpture could and could not be. I was particularly interested in object making where it pushed against the edges of music, performance, creative writing and film. Looking back, I have now realized that somewhere along the line I became more interested in traces left by objects than the objects themselves. The ash came from a large number of wooden sculptures, which I worked on for a year, and then burnt. I found the ash infinitely more interesting than the original sculptures.
I was (and am) interested in artists such as John Cage, Bruce Nauman, Carl Andre, Le Monte Young, Alvin Lucier, Stan Brakage and Michael Snow, and other artists whose work seemed at times more like scientific research. I was obsessed, with Samuel Beckett and to a lesser extent the structural, cut up experiments of William S. Burroughs, B. S. Johnson and others. I was always very interested in words as objects, whether they were objects because they were recorded or printed or because they were conceptually defined units of information. What linked all these artists was an enquiry into time and their use of repetition.
It was pure chance that led me towards working with people with dementia. I’d become rather bored with the cockiness and transparent marketing of the Brit art scene and I wanted to get as far away from it as possible, so I took a part time job as an activity coordinator in a day centre for older people with dementia. The day centre was round the corner from my house. Five minutes into the first day, I realized that most of the service users had absolutely no interest in the boring timetabled activities. It seemed ridiculous that a guy who had designed part of a Spitfire Engine was being asked to waste his time making pasta collages.
Most of the people who used the day centre came along for a chat or because their families needed a break. I started to write down what they said as a backup for my own memory. I realized that people often recognized their own words when I read them back the following week and that the small scale, unimportant stuff told me far more than the medical notes.
One day one of frailest residents called me over as I was heading off to lunch. Stumbling over her words she told me that she needed to speak to her mother. She told me a few fragments of half remembered, jumbled information and, not having a piece of paper, I wrote her words on my hand and up my arm so I’d remember to come back later. After lunch one of the nurses told me that the woman died in her sleep soon after I left. Ten minutes later I realised that her last words were written on my hand.
Knowing that some of the stories would be lost as soon as they were told made it seem critical to write down absolutely everything. Within two or three weeks I was wring down every comment; important things like family names, friends and jobs, but also small throw away stuff, like the reason behind Molly’s fear of trees (her father told her that the devil lived in the branches in order to stop her climbing for birds eggs when she was five). I also really liked some of the haiku like philosophical questions and half jokes. I remember one chap saying that he’d forgotten exactly when he became old, another said that dementia was like “forever falling down stairs”.
There was no big idea to start transcribing the conversations; it started as a way to produce something without imposing too much of myself. After a year or so, my flat was filled with thousands of scraps of paper, sometimes taped together in long scrolls. I think most of my friends looked on my rubbish gathering with a certain level of pity.
I put the stories together very slowly over months or even years, during which I might visit the person fifty times or more. Once I had a block of stories I began to see patterns. For example, there is a strange tendency for people to create architectural metaphors to explain their memory loss. They might say a thought is under the floor or behind the wall, suggesting that it is physically present but inaccessible. People often describe events that happened years before as recent but removed in terms of distance, “Mum, lives a hundred miles away now”. Many of the stories are peppered with references to moving up or down, usually up, so the past is usually described as “down”. Many of the storytellers have told me that their room is above or even on top of (in the sense of superimposed) on the family home from their childhood. As a sculptor, I find the notion of symbolic space endlessly fascinating.
When I read one of the scrolls to a group of people in a theatre or a gallery I still see the work as sculptural, though I am probably in a minority of one.
–-The transcripts of interviews with Alzheimer’s patients are long, convoluted. What is your process of editing them down into something you can publish, put on the radio? Can you walk us through one of the shorter pieces and tell us what choices you made?
Undoubtedly five years studying sculpture influenced the way I go about editing and thinking about the stories. I move the words around physically, usually printing them out on scrolls so I can see all the words together at once. Even when I am talking with the interviewee I tend to visualize their story like a scroll or a rolodex. I’m constantly thinking about how new content changes the overall shape, where things slot in, and where they distort, or push something else out. I see the stories (and not just the printed words) as physical objects, with a particular form and three-dimensional sculptural shape; a single unit made up of many smaller information units.
I read and reread each of the texts hundreds, perhaps thousands, of times in order to immerse myself in the language, and then I look for echoes and patterns. I’m interested in showing the pattern and shape of the language just as much as I am in showing the narrative content of a story. I was quite chuffed when I found out that Beckett referred to his later plays as objects.
Sometimes something beyond the surface narrative begins to poke through. This might be a sense of loss, a spark of humour, an unmet ambition or an attempt to make sense of their dementia. Then I carefully trim around it, though this always means I’m following one path when several others would be equally viable.
I deliberately leave dead ends and a certain level of circumlocution. I think it’s important to see that these are people trying, sometimes working very hard, and sometime failing, to make sense of their memories and experiences. It’s right that it can be difficult for the reader though I try to ensure that they are readable. I often produce five or six versions of a text in order to highlight different ideas. I don’t think there is a right answer or a correct finished version. Each text is more or less a moment where it feels right. I should say that I work and rework texts for months or even years.
I’m not keen on endings and punch lines or clipping the words to fit a familiar story form. It’s important that they are left as they are, complicated, uncertain, despairing, comic. Many of the stories subvert the idea of time (and history) as linear, unidirectional progress so endings don’t make any sense. Recently I experimented with running some of the stories backwards so they start with the final paragraph. Over several years of interviews those paragraphs are usually the ones that are more disjointed or contain the most repetition. It’s interesting for a reader to start with the last words (sometimes literally the last words of the person) and work their way through the story, backwards in time, to see gradually where those final repeated words came from.
The radio series was both liberating and a huge challenge for me personally. Having known the interviewees for years it was very difficult to give creative control to someone else. The producers themselves (who both have relatives with dementia) made the final choice of stories from my shortlist. They then re-edited the material from my texts to fit the very limited time available. The time constraints meant some very important themes were omitted from in individual stories and, to make them easier on the listener, some of the dramatic awkwardness was smoothed off. The press seemed somewhat obsessed with whether the stories were historically ‘true’; in fact some reviewers seemed to think that this is what the series was about.
Some of the texts are typeset to convey the long, testing silences between thoughts. I had to learn to leave up to a minute or two between my questions and the person with dementia’s answers. I think this was a key piece of learning for me, and it also has a huge dramatic potential, but with each monologue having to come in at six or seven minutes leaving a 20 second silence between some lines just wasn’t possible.
Homogenising the stories of people with dementia is a big issue for me. Some care homes use very narrow life story templates and lists of set questions, which funnel each person’s uniqueness into the same easy to manage shape, a general PWD.
I had an interesting and surprising experience a few years ago when a group of carers and a care home manager sat in on a session with a small group of people with dementia. The manager and staff had cared for the group of residents for several years. After the session the manager said how interesting it was and how impressed she’d been at the simplicity of the interviews and their informality and I was invited back. The next week I came back and read the edited interviews with the same group. The residents could all identify their words and added more information. Afterwards the manager asked me where I’d found out so much about the residents, she was clearly quite suspicious. None of the staff had a clue yet they’d all listened to the residents say the exact same words only the week before. Not one member of staff could identify the person from their words despite the fact that they’d known most of them for several years.
Not only are we censoring with templates and set questions but I think the care institutions often create a culture of psychological censorship where staff, possibly as a way of safeguarding themselves from difficult material and emotional connectedness, create barriers to listening. A couple of weeks later the manager called in her regional director and I was asked to leave the home. The regional director of the company managing the home said the stories had “no useful content” and were about “gathering gossip”. The home manager was sacked from her position for letting me in, two minimum wage activity staff were sacked, and as a punishment the homes activity budget was cut to 3p per person per day! The director asked why I hadn’t chosen to work in one of their newer homes where the residents paid for their own care privately rather than working with a economically poorer group who were funded by the local council. She described the council funded less affluent group as “Not very nice people”. This is the kind of comment that keeps me going; I don’t see myself as an activist, but I guess simply by listening without judgment I facilitate the activism of the person with dementia themselves.
Why we did the radio series and other stage readings is very simple. I began to use the stories as source material in staff training, where I’d get new care staff to interpret the texts. This proved very successful. Although the books were being used academically, it took 3 years to sell 250 copies and I get very little funding other than training staff and book sales. There was no chance at all of bringing any of the issues in the books to a wider public. In the media in the UK dementia narratives have become commonplace however they all tend to lack a genuine subjective voice. We see scare stories about a global epidemic and tragedies of disappearing people but that’s not what I see at all in the care homes. I wanted to put the reality out there, even though I knew some of the material would be compromised. On balance it seemed worth doing.
I’m currently working on a third and forth book. The third will be a straightforward ‘best of’ with some unpublished material. The fourth book focuses on four people who lived in the same room in a care home one after the other without meeting. Although they never met, their stories developed strange parallels and even some similar lines of content. For example, each person felt that their mothers had recently abandoned them. I’m also working on a series of short film adaptations of the stories and I’m still visiting people and recording new stories. It’s going to be a busy year.
You can find out more about David Tregg and the Trebus project at their website:
Or by reading this blog post:
David Clegg received his M.A. in sculpture from Chelsea School of Art in the UK. He maintains parallel careers in the arts and dementia care. He is the founder and director of The Trebus Project and the author of Ancient Mysteries and Tell Mrs Mill her husband is still dead.
Susan M. Schultz has lived in Hawai`i since 1990. Her book, Dementia Blog (Singing Horse, 2008), chronicles her mother’s decline into Alzheimer’s over a six month period in 2006-2007. She completed the dementia project on Tinfish Editor’s Blog, ending it with her mother’s death in June, 2011. Her other books include the recent Memory Cards: 2010-2011 Series, also from Singing Horse, and A Poetics of Impasse in Modern and Contemporary American Poetry (University of Alabama Press, 2005). She has edited Tinfish Press since 1995.