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I have been putting together poems by people with dementia since 1993.
Two books of these have been published. They are You are Words (1997) and, in collaboration with photographer Carl Cordonnier, Openings (2000), both from Hawker. You can find further details of these books under Our publications.
I now have enough for a third volume and am currently looking into publishing options for this.
When I offered some of these poems to a mainstream publisher some years ago I was told that they were "not mad enough". This was, in fact, a tribute to their truth-telling qualities. My purpose in publishing them was the same as that of one of their authors: “Anything you can tell people about how things are for me is important” is what she said.
The poems are fashioned out of the speech of individuals with the condition. I write down or tape-record, and then transcribe, the words of a person. The resulting poem involves selection, but I never add a word. I share the poem back with the person and seek their permission to show to others, and in some cases to publish.
Here is a recent example from Ian McQueen, a younger man with dementia from the west of Scotland:
DEFENCE
Bobby was bigger than me.
And when I got it, I got
a right good thwack from this bloke.
He just ladled into me,
and I couldn’t stotter, I was
lying in the playground. Biff. Out.
Bobby was going to get a doing.
And I administered it.
If you steam into me: Stars.
I cloaked myself in my self
and that was good for me.
I got that from him too.
I had my dose
and Bobby had his dose.
Big Al’s bigger than me too,
but I’m not going
to lie down under his blows.
He’s in there. I can still
cloak myself in my self.
You can listen to an interview with me about my poetry work with people with dementia, which was broadcast recently on BBC Radio 4's Saturday Live programme here.
If you want to know more about my non-dementia-related writing work, you can access my other website here.
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