You can be my little bodyguard

a map of you

The familiar smell of hospital envelops us and we're in. The psychiatric ward at Fairfield Hospital in Bury is (depending on your view) a locked door, or a secure haven. We've been brought here by Paul and Sue at Bury's IGNITE adult learning project. They often work with homeless people and some of these folk pass through the psychiatric ward. We sit with a gentle, quietspoken group downstairs in the ward. The conversation is delicate, taking small steps. We talk about comfort and happiness. The man next to me says: 'I will be happy, won't I?' It sounds like a plea. As we talk the sunshine bounces around the yard outside. A woman describes her love for music, 'Rachmaninov, can't understand why he's always second to that Vaughn Williams in the polls.' An older man talks about walking, whilst staring at the shimmering light outdoors.

We work for an hour, then go upstairs to the next floor of the ward. The air is hotter and soporific. People here are more obviously damaged. S speaks in broken English of his home land The Czech Republic with a mixture of affection, anger and fear. There he suffered racial abuse, then in England the break up of his family, the loss of his home and job.  He has the most torn-up and re-stitched neck I've ever seen, scars the size of a starfish clamp onto his throat. P has tattoos instead of scars and talks of her moodswings, selfhate, abuse. But as she works with us, she rallies and challenges her own self-definitions. In her piece she becomes a column of power.

Czech in Manchester

The afternoon session is at Red Door Housing Centre with a group of homeless and vulnerably housed people. They're feeling a little shaky because someone they know has just died, possibly violently. We talk about survival, the things that make you tick. B has spent nearly three decades in prison and is a 'Survivalist. Been on my own since I was 11. I adapt. Life moves fast. Part of being a survivalist is adapting, if you don't adapt you're back in prison.' What's the trick to surviving, I ask. He looks at me from the other shore of a great, sea-deep knowledge. 'Instinct,' he says. It's a word that has come up many times before. Towards the end of the session, K comes into her own, with a string of funny, sharp little stories about her life in hostels and bedsits.

I took an immediate liking to K; before meeting her, one of the volunteers whispers her nickname 'Bubbles' and it fits, she's got the voice of Jane Horrocks, a small stature and eccentrically dressed. She does everything ten to the dozen, and I struggle to keep up with my note taking. My first question, 'What's the happiest part of your day' leads to her postcard piece (above) 'Going home to my Chippendale, he's got muscles in all the right places.' Through the session she gradually reveals truths about the vulnerability she felt living in B&Bs and in hostels, usually half hidden by the humour. I was scared in the B&B, but I couldn't show it. J who sits quietly opposite her, smiles as she explains she used to say to him 'You can be my little bodyguard'.   We end the session with K promising she will see us on our next session and will try to bring others with her.

More Photos at http://www.flickr.com/photos/arthur-and-martha/sets/72157626112536770/

PATIENCE – riding the rollercoaster of illness Press release

“There were times when I was reading this book that the hairs on the back of my neck stood on end and I felt my eyes prick with tears.”

(Fiona Roscoe, Advanced Nurse Practitioner)

 

A new book of experimental art and poetry by older people in hospital will help patients cope with illness. 

PATIENCE is an account of the emotional rollercoaster of illness. The poems and artworks are by patients who are sometimes in the process of recovery, sometimes coming to terms with dying. The book trials experimental ways of working that haven’t been used in hospital arts, in a bid to get closer to the genuine voice of patients. 

Poet Philip Davenport explained: “We hope PATIENCE will help people deal with the journey through illness. The poems and artworks were made using cutup techniques, blending text and art, which allowed people to make delicate, tangential work that reflected their physical state. There’s a lot of humour and acceptance in the pieces. The idea is that PATIENCE will help people realise they’re not alone in illness, others have been there too."

 

“We have put copies of the book on the wards for people to see. But the workshops were a tonic in themselves, the act of making something creative helps patients deal with illness, bringing respite. ”

“The end product is the joy you get from creating it…” (David, patient)

 

“Writing helps – ever since my stroke it helps me to spell – gets my brain working. Sometimes I get a bit down and I say to myself: come on you silly monkey, get writing. Do something.” (Joyce, patient)

 

PATIENCE was compiled from workshops and interviews with people in healthcare in the North West of England by arts organisation arthur+martha, in a Lottery-funded project. Threading between the art and poems are interviews with nurses, doctors and carers. The book becomes a cross-section of hospital life, using artworks, photographs (many are snapshots taken by patients of the view from their bed) poems, discussion. There are forewords by poet Carol Watts and psychiatrist Francis Creed; renowned American poet Robert Grenier wrote the ‘afterwards’. 

"The crossover between image and word is what makes this book unique - someone's shaky handwriting, or their face, or an object they've labelled - they are the fingerprints of real life. These little indications of frailty are very moving, " commented Artist Lois Blackburn from arthur+martha. “We encountered amazing determination, humour and kindness in hospital amongst patients and staff. People dealing with dementia, depression, diabetes, strokes... We met the experts in treating these illnesses and the sufferers, who in their own way are also experts. Their insights are important to pass on; they teach us how to live in our bodies gracefully as we age.” 
PATIENCE 129pp hardback, full colour ISBN 978-0-9539367-8-6 retails at £24.99 and is currently available from Amazon at: http://www.amazon.co.uk

As well as being a tool for the wards, the book is being promoted as an adjunct for nurse training, giving student nurses a unique opportunity to understand and empathise with the point-of-view of older patients. The book is also available to the general public as an artful object in itself - a moment of peace in the midst of panic, a meditation on a rollercoaster. 

PATIENCE (press release)

Snapshots from hospital beds

A book of art and poetry by older people in hospital designed to help people cope with the emotional journey through illness has been published by arts organisation arthur+martha.

PATIENCE is a no-blows-barred account of life in hospital. The poems and artworks are by people who are sometimes in the process of recovery, sometimes coming to terms with dying. There’s also a good dose of humour. Threading between are interviews with nurses, doctors and carers from Stockport hospitals in North West England.

Poet Philip Davenport explained: “PATIENCE is an experiment to see how poetry and art can complement the journey through hospital and recovery. We have left copies of the book on the wards for people to read. It is a document of the extraordinary determination, humour and kindness we encountered in hospital amongst patients and staff.”

"It brings a new outlook from my point of view, reading this book. It makes you think of something else in life, apart from yourself. You cheer one another up." (Madeleine, Patient)

"This book, it gives other people something of what you feel like." (Marjorie, Patient)

PATIENCE was compiled from workshops and interviews with people in healthcare in the North West of England by arts organisation arthur+martha in a Lottery-funded project. The book is lavishly colour illustrated throughout with photographs (many are snapshots taken by patients of the view from their hospital bed) visual poems and found objects. There are forewords by poet Carol Watts and psychiatrist Francis Creed; renowned American poet Robert Grenier wrote the ‘afterwards’.

Artist Lois Blackburn from arthur+martha said: “PATIENCE gives both an emotional and a medical picture of the journey through illness - from denial to acceptance. Dementia and Parkinson’s, depression, diabetes... We have met the experts in treating these illnesses and the sufferers, who in their own way are also experts. It has been a privilege to encounter these inspirational people.”

PATIENCE 129pp hardback, full colour ISBN 978-0-9539367-8-6 retails at £24.99 and is currently available from Amazon at:

http://www.amazon.co.uk/Patience-insiders-guide-surviving-ill-health/dp/0953936783/ref=sr_1_4?ie=UTF8&qid=1287569830&sr=8-4

Background

arthur+martha feature in The Guardian:

http://www.guardian.co.uk/society/2009/apr/29/arthur-martha-artists

Holocaust-related project devised by arthur+martha on BBC website:

http://www.bbc.co.uk/manchester/content/articles/2009/01/26/270109_holocaust_poems_feature.shtml

Dementia arts project

I'm working on a proposal for an arts project with people diagnosed with Dementia, Spaghetti Maze. The proposal keeps growing and changing as we talk to more specialists in the field, which is fantastic- however it sometimes feels like the research and development of this project is never ending! I'm finding many wonderful resources along my way, including these:


Dignity in Care Network: which aims to put dignity at the heart of care services..
and The Life Story Network an independent network of people with a passion for life story work, to create further discussion and sharing of positive practice in the use of life stories...

the minds of elderly patients

In response to our new book Patience, Advance Nurse Practitioner, Fiona Roscoe has written:

Who are we to know what is going on in the minds of elderly patients as they sit dutifully in their chairs waiting for the next ward round or cup of tea?

It is a time when many are at their most vulnerable and reflective but sometimes due to disability and ill health are unable to express themselves. The artists of arthur+martha have patiently sat with these souls and helped them to unlock their thoughts. In doing so, not only do we have examples of unique creative art but also a new dimension in our appreciation of our most senior citizens. (referring to Stages of grief 1950 and Parachute Landing by Albert Burrows)

Fiona Roscoe RN DN MSc BSc(Hons) is an Advanced Nurse Practitioner (Primary and Urgent Care)

Patience launch at Stepping Hill Hospital

We are pleased to announce that we will be launching our book PATIENCE, at Stepping Hill Hospital during their Open Day, Saturday 25th September,  between 12 pm. and 4.00 pm. During the afternoon, we will be based at E1, the Stroke Unit. You can find out more about the open day by visiting http://www.stockporthealth.nwest.nhs.uk/

schools of nursing

In response to our new book Patience, Advance Nurse Practitioner, Fiona Roscoe has written:

The stark honesty and desperation expressed by a stroke patient in 'Ever' provides a frightening insight into her world. I would advocate that schools of nursing examine their curriculums and ensure that students are given an opportunity to experience the art produced from this project as stopping to listen to what patients are telling us is key to knowing what needs to be done to help them.

 

Fiona Roscoe RN DN MSc BSc(Hons) is an Advanced Nurse Practitioner (Primary and Urgent Care)

ever

a stroke: it’s like freezing a piece of meat

waiting and waiting and waiting and waiting
a cancellation
put me back again
a slight stroke
couldn’t move my arm
so I lift it with the other one
don’t let it lie dead
rub the back of your hand
keep it going

and then it’s un-frozen

waiting and
try to keep moving
haul yourself
with a walking stick
to your exercises
tried, tired and knackered
they train you, so
if you fall in the house by yourself
trapped

but only in part and some remains

waiting and
trying to open the door
try to get to the phone
try to climb a step, up four inches
(one bad leg, two arms, nothing 100%)
terrifying thinking about it
don’t think, try to
get on, to stand

on ice.

Anonymous
24-31 July 2009

Patients reading PATIENCE

Today was our first day on the wards with the new book PATIENCE, a deep baptism. Reading these poems in the place where they first came into being, often in circumstances of great suffering, was very moving - the response from patients was powerful and generally positive, though sometimes they too were a little overwhelmed. It was as if we were finally talking about the 'elephant in the room' - everyone's relieved, but it's an awkward moment.

"It brings a new outlook from my point of view, reading this book. It makes you think of something else in life, apart from yourself. You cheer one another up." (Madeleine)

"It's terrible in here, impossible to describe. You have to live it to understand. It can help a little to hear other's experiences. A little. Please come back again and read more poems." (Douglas)

"Very good that, very true. Pass it on... It's openness. You bring things out in people, so people don't close to you... a book like this is useful to read, helps with the patience, you need a lot of patience in here." Jean

We also shared the book with staff, many of whom remembered particular people featured in the collection. As so often happens, they said that they wished they still had time to talk to the patients as we are able to do.

"The emotional side gets overlooked. Without that, you are not treating people in depth. If a patient is in the process of getting better and they have psychological or emotional problems, they won't get better as easily. To verbalise and express their problems, they feel lighter, better... If it's repressed it affects them.


Conversing with them helps. They are away from their environment, in fear. Time is a factor. Take a minute or two, take time to listen and reassure them. Reading them this book will give them an idea of what a patient can expect to go through."

(Staff Nurse Mioji Baloguh)

On E1 the Stroke ward, we read poems to patients Madge and Marjorie, who commented:

"You feel very shaky and that, not kind of with it, you can't vision yourself. This book, it gives other people something of what you feel like."


A daughter, visiting her mother who'd had a stroke two weeks ago, said:

"The book would be nice for when they start recovering and can start reading - if they can't put their feelings into their own words, they could use the book to help." (Amanda)

We hope that PATIENCE will be helpful on the wards, a conversation opener, a comforter and perhaps a communication aid as Amanda describes. There's a point when a book, having been published, makes its own way, separate from the the makers. As we put PATIENCE out into the world, it is now starting to do just that, to have its identity inscribed by its readers.

Patience: coming into

In response to our new book Patience, Advance Nurse Practitioner, Fiona Roscoe has written:

Patience' defined as 'the ability to wait or endure without complaint'. The term suggests dignity and stoicism. Qualities that emerge from the participants in this book when their thoughts are expressed. For eg/ 'Coming into hospital for the fifth time.... (Mary Anandale)

 

Fiona Roscoe RN DN MSc BSc(Hons) is an Advanced Nurse Practitioner (Primary and Urgent Care)

Coming into hospital for the fifth time

coming into hospital for the fifth

hate to think of so many times

it’s a desperate thought

I don’t want to think it

get on and forget sadness

get on with it and remember only the

forget

who you’ve been with

where you’ve been you’re not yourself

I’m so glad that they come

I’m so glad that they come

I can’t say how often but they do

it’s action for yourself

to see someone

to see some with the same

perhaps the same difficulties

you are not alone

there are many people like you for better or worse

there are many people who like you

good people there are many

friends of myself friends of I

saw

my place

sat in my chair

saw my place sat in my chair

I can see so much from here

I wish

good

I can see I can hear.

Mary Arrandale

Anona Entwhistle

the art of nursing

In response to our new book Patience, Advance Nurse Practitioner, Fiona Roscoe has written:

There were times when I was reading this book that the hairs on the back of my neck stood on end and I felt my eyes prick with tears. With over 20 years clinical experience I value and embrace those qualities which we consider as a profession to be 'the Art of Nursing'. What this book does however, is give you 'the Art of patients'. Connecting with the meanings of the pictures and words has been profoundly humbling.

Fiona Roscoe RN DN MSc BSc(Hons) is an Advanced Nurse Practitioner (Primary and Urgent Care)

William Blake and the Naked Teaparty RSVP

I've been thinking about handwriting and the importance of touch in what we do at arthur+martha. I guess Lois takes this for granted, because she has a textiles background. But as a writer, I rarely notice the quality of the writing itself, the mark. The shaky inked lines, written by older people in hospital beds, often speak as volubly as the poems themselves.

I'm kitterpawed, as they say in Ireland. I grew up in Northern Ireland around great religious anxiety that wormed thru all. For a short period when I was a child, I tried writing with my right hand because I thought it'd please God. No one told me to do it, but I picked up the idea half-intuitively. My older brother had been a lefthander taught to use his right.

Those childish words on a schoolbook page were important enough to be contested. A fingerprint, a cross to vote, a signature, your mark, an autograph. The witnessing signatures to a peace treaty, or an arrest warrant, these marks have import too. The human trace is the basic stuff of liberty and expression.

What happens when they are removed? We write now without handwriting: Microsoft or Apple our imprinteur.

Early this year, I edited an edition of the online magazine Ekleksographia. The work in it emphasises the handmade, the haptic. The makers of the work included are poets and artists who trace a lineage of lines thru to William Blake, the great handmaker in English lit. Bob Cobbing is of this family too, and the Outsider artists. And so too are the makers in PATIENCE, who fought bravely with pain and distress to leave their marks on a page for us.

denial, anger, bargaining, depression and acceptance

Our co-worker, the poet Rebecca Guest, writes about the shared experience of making PATIENCE.

These lines occur because of company they are nothing without company.  These lines occur because as the tongue rolls a pen captures; conversations that are captured upon the page express the core of what is latent, meant.  The work is cut to bring the intensity of emotion to the forefront with the maximum expression.  These exchanges of experience are a point of contact which moves beyond people as statistics and beds - to value what it means to be human.

PATIENCE searches our existential struggle with those who are currently amid emotions of denial, anger, bargaining, depression and acceptance.

One difference to other poetic explorations of grief is that these people are not alone, the contributors have a scribe, to express their thoughts to.  The second difference is that participants of this project are speaking whilst in the midst of physical and mental life challenges.

The book's rawness and rich content through words, imagery, subtext and understanding is because of the unique relationship and setting these exchanges of experience take place to create PATIENCE.

Rebecca Guest

Rebecca Guest has been a long-standing collaborator with arthur+martha. She helped to set up Kindness our holocaust survivor project and has supported us during many hundreds of hours in hospital workshops. Rebecca led several sessions for PATIENCE, gathering poems and insights for the book. Her editing work on the poems helped to push their aesthetic, to let them stretch out.

Close-reading PATIENCE

Matt Dalby is one of several contemporary poets we asked to repsond to PATIENCE. Here, Matt traces a path between two pieces: Be Patient by Margaret Hargreaves, the poem that states the theme of the collection, and a self-exploration of Parkinson's Disease by Doreen Jones, Thee Thy Summer.

Margaret Hargreaves’ Be Patient includes the line ‘was a dressmaker’. There is a sense here that Margaret may no longer be who she was, or at least may feel she is no longer who she was. But it is not a sentimental, nostalgic, ‘when I was younger’ reverie. It is a lot more interesting than that. Here are skills and experience, here is something that makes the loss or impairment of capabilities with illness become more real. Here is something that is often hidden.

Anecdote. An elderly Muslim man in Trafford walking slowly around two parks supported on either side by two young women who appear to be his daughters. The sight is only striking because it is so unusual.

But this is to make assumptions. The assumption that ‘was a dressmaker’ refers to Margaret Hargreaves herself. The assumption of impairment through illness. The assumption that the women supporting the elderly man are his daughters. The only assumption for which there is any evidence is the first of these:

‘I call myself
a quiet person

was a dressmaker
if a stitch went wrong
I set it right
in two words, two small words’

But without knowing the author, and without knowing how the poem was put together it is a dangerous assumption to make. And even if it were a simple statement of fact about the author it only provides limited information. Many people could say ‘was a shop assistant’ and it would tell you precisely nothing about them.

Even so, this is a relatively straightforward poem in comparison to a poem like Doreen Jones’ Thee Thy Summer, which is much more fragmented. Thoughts are abandoned partway through, broken into fragments, and revisited later. The kind of fractures recur throughout the collection. Numbers play a large role in the text, as if they are fixed points within a generalized confusion:

’21 x pills a day’

‘fell 4 x times’

‘7 in morning’

Some numbers, especially 21, recur in the poem. So too does 7. The poem itself is arranged in six stanzas of seven lines in pairs across three columns, which might be read as three sonnets. But there is an ambiguity introduced by fragmenting the poem that means the poem need not be read down each column in turn running left to right. It is also possible to read each line across the columns, or the first stanza of each column in turn. Both of these reading give a poem in two halves of 21 lines each.

The first stanza gives a good sense of how the poem is constructed, and contains words and phrases that recur in the rest of the poem:

’21 x pills a day
make sweet thy beauty
parkinson’s you see
started vertigo
dizzy all the while
fell 4 x times = smashed face
started parkinson’s’

’21’, ‘make sweet’, ‘thy beauty’, ‘parkinson’s you see’, ‘started’, ‘vertigo’, and ‘parkinson’s’ all appear again. Even while broken into pieces the poem circles itself, its own areas of concern, giving it a unity and coherence it might initially seem to lack.

This does not seem designed to imitate any particular mental confusion so much as it feels like an act of resistance. Illness is defined more by medication than by symptoms, and both are an inconvenience. And here and there some aspect of a person (the subject of the poem? the author?) keeps slipping out. This is not loss but an ongoing negotiation with life and illness.

From the four sections I have read this idea of an ongoing negotiation with life and illness is a consistent theme throughout the book. For me this allows for a far greater human interaction and identification with the experiences of the authors than some sentimental veneration of their wisdom and remembrance of things past. To acknowledge the frustrations, pain, anger and limitations of age-related illness is surely more healthy than a vague sympathy. It does not make for a comfortable read, and the poetry is not instantly recognizable as the personal reminiscence and anecdote in conventional forms you might expect from a project of this nature. To my mind this is a good thing. It is more interesting and compelling for the reader.

It would be interesting to know whether the experience of creating the book was more satisfying for the participants than just writing a set of conventional personal reminiscences. Certainly one of my initial thoughts in response to being approached to comment on the book was that experimental approaches, being less codified, less familiar, might be more accessible than more conventional poetry. We all have an idea of what conventional poetry should look like, and that it has a number of rules that we do not understand. These preexisting ideas can limit what we feel is possible, and therefore what we ultimately produce. Whatever the truth, the more experimental approach has led to a book you are actually likely to read and return to, rather than pick up out of sympathy and never open again.


Matt Dalby is an experimental poet whose works take shape within multiple approaches and mediums, including sound and visual making. His blog Santiago's Dead Wasp is a key journal of experimental writing and related events in the North West of England, as well as a document of Matt's ongoing project. His extraordinary communal Mutapoem is world-embracing.

Reading PATIENCE - by Scott Thurston

The first copies of PATIENCE, our collection of art and poetry by older people in hospital, are about to be delivered to us. It's a book that's taken much labour and considerable love, so we are in a state of anticipation. Various poets, artists, medical practitioners and (most importantly) patients have very kindly made responses to the book and we will post these on the blog over the next weeks. Scott Thurston at Salford University wrote an overview piece, taking up themes and questions raised in PATIENCE. We felt that Scott's sensitive and insightful essay would be a good way into the debate...

PATIENCE

‘take pills like new ideas’
(acceptance, chpt 5)

This latest offering from arthur + martha is a collection of poetry, text and artworks based on older people’s experiences of ill-health and hospitalisation. Divided into five parts, its structure is based on the five stages of the ‘cycle of grief’: denial, anger, bargaining, depression and acceptance. What is remarkable about a+m’s approach is that they use a whole host of techniques associated with innovative and experimental writing in order to frame people’s experiences. The results are simply extraordinary. In these works, the notion of writing and creativity as ‘therapeutic’ does not do justice to the seriousness and the ambition of the project, which is experimental in the truest sense. The diversity of the approach is key. In one strand of the project, creative work emerges from the charged objects of the everyday: medicine boxes getting a makeover by acquiring new labels like ‘take one glass of sunshine a day with water’ or ‘all’s well that ends well’ – the latter on medication for trapped wind relief! In another strand, it is postcards – pictures of famous buildings cut out and stuck on the reverse, creating a new space for words – in another (‘Lost and Found’), text is appended to actual objects – poignantly the label ‘Lost – your husband or your wife’ is attached to a tiny, empty chair.

Aside from these text-objects, there are many poems in the book – some co-authored and often produced using collage and/or cut-up techniques. Ron Miles’ ‘The Old Grenadiers’ is a particularly effective poem which opens:
'you’re 96 years
thy image
an old Grenadier'
(anger, chpt 2)

A stoic meditation on ageing, Miles’ narrator has ‘pain’s / red medal round my neck’ but is still able to conclude: ‘though new-fangled ill / this old dog’s prouder still.’ Elsewhere, Allan Whittaker and Frank Wigley offer a collaborative work, juxtaposing accounts of football history with a patient’s current predicament in a poem called ‘Football’ which is shaped like one on the page. Thus the story of the Busby Babes and their fate in the 1958 Munich air crash leads to some striking reflections:
'you’ve got to be determined to stay alive otherwise this world will see you off falling
into chaos somebody needs to mop the world nurse sort the ends out I’m sat in a
chair thinking literature I cant express god’s fire in the head'
(bargaining, chpt 3)

What is most impressive here is how the innovative techniques employed lead to a genuine creative opportunity. These poems show that an approach to creativity that recognises and utilises language’s physicality and malleability, immediately makes a connection between body and art object. By bringing creative practice closer to embodied experience, and breaking habits – of thought, of feeling, of experiencing – along the way, it is clear that these authors find new ways to express complex physical states that might be hard, or impossible, to achieve by other means. Illustrative of this, a group poem entitled ‘Now My Genius is Gone’ mourns the loss of creative autonomy but simultaneously finds the means for its recovery:
now my genius is some worthless song
I use a lever a little
and it comes back.'
(bargaining, chpt 4)

The personal empowerment resulting from this approach is testified to over and over again in these pages. Another group poem, entitled ‘A Kingdom’ argues ‘a body case / can’t case your mind’ and identifies the meaning behind the central pun of the title:
'when you’re in pain
teaches you something
teaches patience'
(acceptance, chpt 5)

Raymond West, the author of two excellent poems in the book, also comes out fighting in ‘Overcome’:

'have a bout with life
live to the full
with
an incurable disease'
(acceptance, chpt 5)

There is much more to admire in this beautifully-produced book: terrific photographs of the authors – including an impressive double portrait of Violet Gamble – and a series of text-images entitled ‘our needs are very small’ which link writing with images of wards. There are also several highly informative interview-articles from the perspective of various practitioners – care assistants, nursing sisters, a diabetic nurse, medical directors – offering insightful reflections on their experiences alongside more detailed accounts of working with dementia, Alzheimer’s and Parkinson’s.

A key message emerges in this book about trust – not only the trust to be won by care practitioners and creative workers such as arthur + martha, and to which end their creative strategies are invaluable – but also the trust to be granted to those older people in care contexts. As Stephen Watkins argues, the expectation of dependency that many of us have is one to be resisted, otherwise care can too often slide into control. As Watkins puts it:
'You mustn’t become dependent before you really need to – and also when you are dependent, you still should be allowed to make choices, be trusted to take risks.'
(bargaining, chpt 3)

It is clear from the breadth and verve of the work of this book, that a trust in risk-taking has been fully embraced by everyone involved – in this way fulfilling the experimental essence of creativity.

Dr Scott Thurston

Scott Thurston lectures at the University of Salford where he runs a Masters in Innovative and Experimental Creative Writing. He co-runs The Other Room reading series in Manchester, edits The Radiator, a little magazine of poetics, and co-edits The Journal of British and Irish Innovative Poetry with Robert Sheppard. He has published three collections with Shearsman.

Dementia and the arts

Here at arthur+martha we are always looking to the next project- as the book Patience is about to be launched we want to develop and expand on one of the themes- dementia.

As part of any project development we need to do the research- I thought if maybe useful to share some of the fascinating material I have found on good practice with arts and dementia… here’s a few links:

News Report about Arts led interventions, with the example project Ladder to the moon, an interactive drama in a care home, and some of work in the USA investigating alternatives to medication. March 2009 http://www.channel4.com

 An article about art appreciation http://alzheimers.org.uk   …“Of particular importance in the case of people with dementia is the need for activities to be meaningful and relevant to their personalities and life experiences.”

Dementia Positive, http://www.dementiapositive.co.uk  the work of John Killick and Kate Allan

Keeping active and occupied Dimentia Gateway http://www.scie.org.uk

I’d like to find out more about using a video camera as part of the tools of art therapy with younger onset dementia… http://dementia.stir.ac.uk

Challenges facing dementia sufferers and their carers http://www.dott07.com

green is the motivator

In the sun, outside Stepping Hill Hospital café, it’s my luxury to write with a cup of coffee beside me and to breathe fresh air after the wards.

As I look around it occurs to me that I don’t actually know where I am spatially – on all sides are extensions of the old hospital and extensions of those extensions. It’s an eyeline maze of brick blocks with plastic windows (contemporary) then 1960s/70s retooling of the ‘modern’, and then much older pre-war structures. Aircon systems make a huge insect drone left and right of me. Hospitals feel like industrial buildings, as participant/patient Raymond West pointed out a few weeks ago in his poem curtailed :

a hospital, an industrial estate

we are dead loss

green is the motivator to go

stifled in a wheelchair

raise your sight, your expectation

St Thomas, where I first worked with Lois in 2000, was much-feared by some of our oldest participants because it was the building that had been the Poor House. For some people who had confusion about their location in time/place it was terrifying to imagine that they were in that hated institution, though it had long since been converted to a hospital. Now that incarnation has gone too and the old nightingale wards have been wished away.

But what have we replaced them with? To ask Raymond’s question, why do modern hospitals look like industrial plant? Where are the real plants, coloured green, with flowers attached? What do these buildings tell us about our own attitude towards humanity, are we all simply bodies, like car bodies, products? Why do we mend ourselves in places reminiscent of industrial complexes, with little bits of art and a smatter of trees patched on as an alibi? Is it because we’re terrified of the places that we create hospitals in the form of a collective nightmare?

I’ve just come from interviewing ward sister Charlotte Moran who is responsible for E1, a stroke ward. The care and consideration that her team provides in those rooms is a testament to kindness. It seems to me, sitting in this brick vortex, that it is not the people who made the shell, but the people within who are the truly inspired architects.

PA-TIEN - ENCE!

Being back in the hospital environment forcefully reminded me of how these places can be simultaneously strange, estranged and uplifting.

The morning was spent in Ward 5 at Cherry Tree, where a group of patients made me welcome and we sat together around a dining table that also serves as elbow rest, pillow, reading stand, desk for nurses, sounding board for angry fists and, mostly, a meeting place. Ill health is of course one of the great levellers; with this comes a great mixing of strangers and neighbours. They come quietly, privately together into understandings that are among the most profound that humans share. They also annoy, scare, amuse, alienate each other.

”PA-TIEN – ENCE!”

On this day we talked about patience and how you get it. ("Patience, you learn under sufferance.")

Symbolically, the two people at the head of the table were at the poles of patience and impatience. Richard was bristling with energy and annoyance that he couldn't expel because his 83 year old post-stroke body was beginning to seriously slow with wear and tear. Angela had recently suffered a stroke and was still in the first stages of recovery, but she emanated calm. We chatted around and about the experience of being in hospital and what gets you through. How to observe the collapse of your own body and still not succumb to inner collapse. How to cope with "Waiting, waiting, waiting."

Partway through we were joined by staff member the ever-supportive Susan Hughes. She listened awhile, then told us about Want It Now, or WIN, an acronym used by early teens to describe the process of heavy-pressuring their parents into buying the latest clothing/computer game/hairstyle/generic product for them. The conversation turned to the childhoods of the patients - "We were never prepared for pleasure, we were prepared for work."

Several of the women described in detail cleaning the steps of their houses with the 'donkey stone' when they were very young. The grind of working lives, that began not with work but early childhood. And yet the happiness was there too, they insisted. So how do you make sense of that, I asked.

And in the midst of the replies, Angela raised one finger in the air, and pronounced very slowly but clearly: "PA-TIEN - ENCE!"

gummy legs and strokes

As part of the Patience project on Wednesday I worked at Cherry Tree Ward 5 (Rehabilitation ward) in the morning and E1 Stroke Ward at Stepping Hill in the afternoon. Another fantastic day, made the more poignant by the fact that it was my last day running art workshops (at least for a while) due to imminent maternity leave. In the morning, I spoke to the usual wide range of people- suffering from bowel trouble, an amputated leg, back problems, cancer...

We spoke about their condition, their response to being in hospital, their ways of coping. Again this week, I was amazed at how matter-of-factly people could speak of such sadness. For instance, the woman who had had her leg amputated: "Coping. You have to, no choice in the matter. You're here until fit enough to get home, so if you want to go home, put your mind to getting fit quick."
And.
"So had to have the leg off (she smiles) I could sit here and cry for eternity, but it wouldn’t put my leg back. Was a bit fed up at the beginning."

For the first time in ages, we did some drawing. Mary found it hard to tackle problems due to her low confidence - referring right back to childhood, not being able to draw - however she produced a really delightful drawing, which I feel she was quite proud of.


In the afternoon I worked with Stroke patients. I was able to give back typed versions of the pieces they wrote last week (this always seems to please people, to see their work looking formal, 'professionally' presented).

I was able to continue to develop conversations and building relationships with participants and to speak to new people. One gentleman was full of frustration and anger, he seemed so relieved to have someone to talk to: "Been sat on these statements for weeks to try and find the right minded person to speak to. 56 and I was a young 56, but its draining away from me... For the lonely it can be a nightmare in hospital, us and them. Worst thing is not knowing where the nightmare is... my nightmare - the staff changes - the shift changes, not everyone so understanding."

Artwork was in the form of plasters, stuck onto a part of the body that was participants wanted to fix, with letraset writing about their condition.



I'm going to really miss doing the workshops- its really humbling, exhilarating, tiring, inspiring and most of all an honor to share time with people and find out a little of their stories...

Lead soldiers & Stroke

As part of our new project Patience, on Wednesday morning I worked with older people at the Rehabilitation ward, Cherry Tree Hospital Stockport. Seven participants gave varying responses to a collection of toy lead soldiers I brought along to the session. My idea was to develop the theme of the 'brave soldier'.. and 'soldiering on'. Could these ideas relate to how we view our health? Participants chose an photographic image of toy soldiers, we selected a line from their text, which they in turn wrote on the photo, from which I made a badge for them. To my delight everyone seemed proud of their creations, and after photos I left them wearing their text/art.

In the afternoon, I met up with Jean Lally who was kindly offering her services as a volunteer. We had our first session at the Stroke Ward at Stepping Hill Hospital, Stockport. Its always going into the unknown when you start at a new venue: the participants, the staff, the environment all are to be discovered.

We worked with three women, each one shared with amazing candor their experiences - one had been in hospital for 28 weeks and was fighting depression, God and her disability. She was full of anger: 'If I don’t hurry up I’ll be dead.'

Another women was the main carer for her Aunt, the determination to get home - so that she could resume her caring responsibility - was humbling: "To get well as soon as possible and get back to my Aunt that I care for and love - there's only the two of us- just want a normal quiet life, anything would do."

And then there was the woman who spoke in such a matter of fact way about her devastating conditions: "I have not only one problem, not only a stroke but Inclusion Bodies Myisitis- a form of MS or motor neuron a muscle wasting disease. There's no way to stop it, no way to help it, not for me anyway."

All three women shared such strength and determination it was inspiring, an honor and a privilege to talk with them.