I wrote the following review of Trisha Kotai-Ewers' book Listen to the Talk of Us: People with Dementia Speak Out in 2009 for the FAWWA Newsletter. As I mentioned this beautiful book in an earlier blog, I have included a copy of the review here for those who might be interested in purchasing the book.
Published by Alzheimer’s Australia WA Ltd
$19.95 plus $5.00 postage.
Available Alzheimer’s Assn (+61 8 9388 2800);
or FAWWA.
For anyone the gradual decline of a loved-one’s capacity to
communicate is confronting, to say the least. But for a writer and self-confessed
wordsmith, witnessing such changes in the vibrant persona of a much-loved
mother, must be doubly charged.
Writer and Acting President of the Fellowship of Australian
Writers (W.A.), Trisha Kotai-Ewers saw her own mother gradually lose expressive
language along with other changes that occur with dementia. In such
circumstances a person might be forgiven for minimising contact with the places
and situations likely to remind her of her mother’s illness. But Ms Kotai-Ewers
takes another path, embracing the insights that the experience has given her as
she works as Writer in Residence with people who have dementia, talking with
them and recording their words.
She does this, not over the period of six months or a year as
might be expected, but over many years. And she undertakes the work in such a
respectful and ethical manner that the process of forming often profound
relationships with the people who tell their stories, figures as a compelling
underlying theme in itself. The author has been very careful to gain permission
to record the words, from the people with dementia as well as their families,
has done the recording in an overt manner, and has checked back with them once
the words have been written down.
As might be expected from a person who has spent her life writing,
the book is beautifully expressed, something that is not always evident in the
non-fiction genre. This makes it ‘a good read’ even for those for whom the
subject matter might not initially hold interest. But beyond this, it
raises some of the big questions that concern us all – what it is to be a
person, what is left when our words and understanding of conventional reality
desert us and the place that meaning holds in our life.
The text does not pretend to provide definitive answers, but
invites engagement in the questions themselves through reading and re-reading
the words of those who are confronting them on a daily basis. The words are
accurately recorded and set out in poetic form to encourage the reader to
interpret them as one might do with poetry, understanding that much of the
meaning lies beneath the surface of the words, in the subtext, and through
metaphor.
Beyond the words themselves, Ms Kotai-Ewers contextualizes what
has been spoken with her subjective impressions of the emotional intention of
the speaker, shown to her through those critical non-verbal aspects of
communication that cannot be conveyed through words alone. This depth of
communication is made possible because of the close connections that the author
has formed with the speakers. Underlying these close connections is time,
mutual love and respect between the author and storyteller, and above all a
willingness to listen.
This book is a must-read for anyone working with people affected
by dementia, or for those directly impacted. It is accessible, carefully
written and well-researched. But above all, it is written with genuine empathy
in the deepest sense of that word, for its subjects.
Reviewed by Iris Lavell
First published Fellowship News Feb 2009List
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