sit in this chair

sit in this chair, from the collection 'Our needs are very small' a series of Ltd edition postcard size photo/poems from our archive. They show the view from older people’s hospital beds, wheelchairs, or their accommodation in residential housing. These photos were taken by the participants themselves, or else directed by them. Their words were selected from conversations with each participant – offering sidelong, poetic views on how it feels to be in a care environment.

Had a fall last night

Had a fall last night, from the collection 'Our needs are very small' a series of Ltd edition postcard size photo/poems from our archive. They show the view from older people’s hospital beds, or their accommodation in residential housing. These photos were taken by the participants themselves, or else directed by them. Their words were selected from conversations with each participant – offering sidelong, poetic views on how it feels to be in a care environment.


Slips, trips and falls are a very common cause of accidents with hundreds of thousands of incidents reported each year. Falls often result in serious injury, often to bones and joints, and there are many fatalities, particularly among older people and people at work.
Accidental falls are by far the biggest killer in the home. An estimated 1,000 older people die each year from a fall on stairs. Falls cause the most deaths and long-term health problems among older people. NHS website http://www.nhs.uk

the jargon

Below is the poem we made with the group 'talking heads' at Walthew House. Walthew House http://www.walthewhouse.org.uk is an independent local charity supporting people in Stockport who are blind, visually impaired, Deaf or hard of hearing or who have dual sensory loss. We were made very welcome by the group, I learnt lots and look forward to hearing about the next session with the group (I'll be of on my maternity leave by then!)


the jargon

terminology:
I’m registered blind

the word blind is very final
people
get embarrassed by words
but I’ve always faced the world
blind
eyes of bone

some boys kicked
the stick out of my hand, said
“Now go look for it,” said
unacceptable words, not-PC
always interested me, the words
I am totally blind
a spade’s a spade
an indicator cane
a symbol
a guide cane to
measure from your foot to your breastbone

go through a grieving
lost vision
lost independence
grieving
lightsudden flewbird
go through a long time
the bitter twist fills a void
Blind Beggarman Pew always
bringing the black spot

language, jargon:
visually impaired

how small my disability
from the foot
to the top of the heart-bone
born blind:
went to schools for the blind
the sunshine homes
colours mix with words for me
anger with red traffic lights
what you can see and what I can’t is

I don’t get any older
in the shaving mirror.

to try

In the UK, breast cancer is the most common type of cancer among women. Approximately 45,000 cases of breast cancer are diagnosed every year, usually in women who are over 50 years of age and who have reached menopause. However, it is possible for women of any age to be affected by breast cancer and, in rare cases, the condition can also affect men. NHS Choices http://www.nhs.uk/


to try


if you can get home I’ll be ok
can’t do it yet
takes time
hard
it’s hard
connection to outside
(I’m on my own back home)
to
try and take it easy
to try and do it yourself
my daughter she’s hurting
crying
got to do it in your own time
do it
she’s trying but hurting; at times
it hurts but you have to do it yourself
got to try
don’t cry
cancer 17 years ago
(consultant)
keeps saying there’s something there
try to tell him - there’s nothing
she was crying
don’t cry
don’t cry
doesn’t hurt
there’s something there
but it doesn’t hurt
its there, it won’t go
but I’m better
breast cancer
they’re hurting
they’re all hurting
the mastectomy
I don’t let it hurt me
I’m not going to die
not yet
not yet
I’ll just fuzzle it up
It’s there even at night
don’t let it
hurt you
let it go
let it go
something there, but let it go
nothing
this breast fine
it’s only that one
don’t get upset
don’t get upset
it doesn’t help
doesn’t help
takes time but you get better
eventually
cry at night
but I don’t show it
don’t let them see it
don’t show it
keep it to me
I know it’s there

Mary Mitchell
June 2009

Dante

I’m a patient in hospital
Where doctors are supposed to make you well
Unfortunately I have foundThat it has been a source of hell.

Ray West
11 June 2009

importance

Hallucinations, mainly of a visual nature, are considered to affect about one-quarter of patients with Parkinson's disease. They are commonly viewed as a side-effect of antiparkinsonian treatment, but other factors may be involved.' 'BRAIN a Journal of Neurology' http://brain.oxfordjournals.org/

importance

a box of chocolates
a little boy running back
down the ward
to say goodbye to grandfather
remembrance

(in here it’s)

waiting, all this waiting
captured, a refugee, loss of furniture, loss of house
you can’t make a bed a home
I don’t want to be unconscious
in their presence

(in here it’s nice)

hallucinations come with the pills
enjoy them, visitors are medicine
taking the mind to some other place
if you don’t have a dream
you’ll never have a dream come true

(in here, it’s nice a little)

uncertainty is my home
a lost person, a dispossessed person
you don’t feel the bed is yours
I’m interested in life
I’m having to change my life

(in here it’s nice, a little bit, but)

waiting to die it seems
spend the day getting the button right
getting the zip right
learning to
walk


Raymond West and Mary Mitchell
11 June 2009

overcome

Parkinson's disease is a chronic (persistent) neurological condition that affects around 120,000 people in the UK. The condition is named after Dr James Parkinson, who first identified the it in 1817.

Parkinson's disease affects the way the brain coordinates body movements, including walking, talking, and writing. NHS choices website
overcome

Parkinson’s (face it)
face it, get involved, take part
in sports: the adrenalin temporarily
overcomes the Parkinson’s
(face it)
don’t take the pills as gospel
at 1am in the morning
you can be flexible
get a consultant who knows
about Parkinson’s (the bad doctors
do damage)
when I got diagnosed
I dropped out into sulks
refused meals
then decided
this was a waste (face it)
have a bout with life
live to the full
with
an incurable disease.

Ray West
11 June 2009

a no hassle medicine

two tranquilisers
that’s what they say they are
a no hassle medicine

put them in my mouth and swallow
swallow them and hope for the best

Gladys Hall
2008

questions

We usually plan a art/poetry session with a series of questions as a starting point for conversation- like any conversation this is a fluid process and is adapted as we go along. The following are examples of questions from a session with a group of people with visual impairments. The order they are written does not always reflect the order in which they are asked...

how would you like to describe yourselves (and their disability)?
is there anything you dont like being called- find offensive?
how long have you had the visual impairment?
how are you treated by people with full sight?
can you give examples of sensitive and insensitive behavior towards you?
does sharing your experiences (and hearing the experiences of others) help? and how?
what tips can you share on adjusting to live with a visual impairment (to those with failing eyesight)
are there any advantages to having a visual impairment?
what are the problems associated with it- physical, social, emotional?
would you change the condition of your eyesight?
with regard to visual impairment- what things do you miss the most?
what things make it easier to cope? what things make it harder?
what would make life easier/more satisfying for you- as wild ideas as you like!
what would you have liked to have known prior to the loss of your sight- about the condition?
what do they see? eg colours, shapes- can they describe them and the experience of seeing them- eg does it feel like sight or is it more etherial, more dream like?
how does having a visual impairment feel?

curtailed

spring starts its inspiration
we are locked up in hospital
we are cooped up canaries in submarines
people go potty in submarineslack of green

we are Birdman of Alcatraz
we are four square walls
looking out over the bay
watching others’ enjoyment
(me, I’m keen on the birds)
trees ring a hospital, an industrial estate
we are dead loss
green is the motivator to go
stifled in a wheelchair
raise your sight, your expectation

hides
behind
wraps us all in cotton wool
like the brontes we must
break out of the parsonage
we are pyjamas all day
we are institutional
lack of freedom to choose, lack of freedomto choose - when you’ve lost choice
you’ve lost.

Raymond West
11 June 2009


Photos copyright Lois Blackburn. for more photos please visit http://www.flickr.com/photos/arthur-and-martha/

Senseless

Another support group we plan to work with who meet at Walthew House, http://www.walthewhouse.org.uk/ are a group of people who are deaf or hard of hearing. Thinking of artists who have also been inspired by the topic, I immediately came up with my good friend the very talented Jeweller Colette Hazelwood:

Senseless 2004
Colette collaborated with internationally acclaimed fashion photographer James Lightbown on his Senseless project. Her now infamous Hearing Aid Jewellery was used for the shoot. The Brief, was to explore the concept of sense deprivation and the visual metaphors that illustrate the loss of something we take so much for granted. (Model: Alexia Rochford Boss)

This collaboration followed a commission by Leicester City Gallery Hearing Aid Jewellery 2002. Colette was commissioned to make a piece of contemporary jewellery for a person with a disablity for the Adorn Equip exhibition. Her client, Ali Briggs was the inspiration for this provocative piece that clips comfortably onto her own hearing aid. Ali is an renowned actress and her most recent role was in Britain's Coronation St.

Let's celebrate the hearing aid instead of disguising it.

This piece has since been purchased as part of the MIMA (Middlesbrough Institute of Modern Art) permanent collection.

Photo by Fliss Shillingford.

http://www.colettehazelwoodjewellery.co.uk/gallery.html

Walthew House

Last Friday we had the wonderful opportunity to work with the group 'talking heads' at Walthew House. Walthew House http://www.walthewhouse.org.uk is an independent local charity supporting people in Stockport who are blind, visually impaired, Deaf or hard of hearing or who have dual sensory loss. 'Talking Heads' is a really welcoming group of people, of all ages and from all backgrounds, linked by their visual impairments. We where a group of 14, all of whom had fascinating insights into the discussion. I had prepared 2 pages of questions, but only managed to ask 4 of them! Phil wrote up notes from the conversation in a poetic form, which with the groups permission will be published on the internet, on paper and as spoken book, at a later date. Thanks again to all the members of 'Talking Heads' making us feels so welcome, we look forward to meeting with you again.

many thing

many thing

I know full well we’ll never leave this place
there’s a law in chemistry that says
you can never create or destroy matter, no matter
if they cremate or bury – your remains
will become part of the strata of the rains
and winds will blow you across
the face of the agnostic earth
you the atoms cannot be destroyed
will be here doubting Thomas for millions of years

perhaps we are all the figment of someone

don’t need to dig down if you
drop by a graveyard
the bacteria come up to become
more stars in the sky than there are
grains of sand in the
oceans are not burning
me it’s an overcoat for your spirit:
do I believe in anything, do
I believe in many things?

(I never go to bed ‘til I’ve said me prayers at night:
whisper that)

David Smith, Harry Wantling, Phyllis Hollinshead, Hilda Hewitt
2007


Living with death and dying

An enormous diversity exists in the way people view and approach death and dying. This diversity continues to be evident when people are faced with the knowledge that their own death is approaching. There is no standard, correct or even best way of dying. Yet there is a concept of a ‘good death’ … Consider the following statements about what might constitute a good death. What would you most like for yourself?

• I want to die in my own home
• I want to die in a hospice cared for by people who understand how to make me comfortable
• I want to have someone religious with me at the moment of death, praying for me
• I would hate to be on public view and want to have privacy
• I want to die quickly
• I want the opportunity to say good-bye to my family
• I would hate to live to be very old
• I want to live to a good age, as long as I have my faculties
• I want to die in my sleep and know nothing about it
• I don't want to die in pain
• I want to die in solitude
• I want to be ready when the time comes
• I want to be with other people on an open ward, and not hidden away
• I want to be very alert, even if this means being in some pain
• I want to be ready and accept death when it comes
• I want to be able to die as the person I am and be accepted for that, even if I’m angry, or in denial
• I don’t want anyone religious around, nor do I want any religious ideas expressed
• I want to be able to plan my own funeral.

See also The Good Death, an essay by Mary Bradbury at

http://openlearn.open.ac.uk/file.php/1621/The%20Good%20Death.pdf

Sources: Learning Space, the Open University website

image 'couldn't see the sun for a week' anon 2007

want my bed

want my bed

in cagelike beds, in my white cage

smoky as if it isn’t there
blood rushes from head roses
a heavy smell, heavy breathing
a smell you’d want again
would’ve thought roses

figures floating friendly trying
don’t want them, not highly

in my cage, in cagelike beds

high pale blue walls
some glass affair
inspired torture racks
see it different ways but
the same figures going round
waiting for it to crash.


Maude Counter and Muriel Hardman
2007

‘Pressure ulcers are also known as pressure sores, or bed sores. They occur when the skin and underlying tissue becomes damaged. In very serious cases, the underlying muscle and bone can also be damaged.
People who are unable to move some or all of their body due to illness, paralysis or advanced age often develop pressure ulcers.’
(NHS Choices website)
A blog and forum for bedbound people can be found at
http://bedbound.org/


photo poem, 'Half Asleep' Allen Whittaker 2007 for more photo poems, please visit our portfolio site: http://www.flickr.com/photos/arthur-and-martha/

Hospital Food

intake

1947: nothing more unusual than
coming home
fitted with civvy suit, shoes, raincoat and shirt
searching for something
I’d left
people were the same
culture was different
sit down for a meal at 6 or 7
still there at 10 or 11

so different
so varied
life was easy
work finished for the day and well
tomorrow, tomorrow, tomorrow
too, a life of its own
couldn’t be organized by the army

everyone having such a good time
a war that not many people saw
I SAW THE JAWS OF HELL
never so much noise, explosions

then it cleared and
the birds came
and
sang


Patrick Lannon
25th May 2007


HOSPITAL FOOD

‘A major challenge facing caterers and nutritionists is the number of patients entering healthcare facilities in a malnourished state. Studies show that up to 40 per cent of hospital patients are malnourished on admission. This means they have not been eating well enough to keep themselves healthy.’

From Better Hospital Food, NHS website
http://195.92.246.148/nhsestates/better_hospital_food/bhf_content/nutrition/overview.asp



Pencil Illustration by Raymond Weaver 2007

Arthritis

"Arthritis is a term used to describe a number of painful conditions of the joints and bones. Two of the main types of arthritis are osteoarthritis and rheumatoid arthritis." NHS Choices website

‘arthritis:
keep it going, the only thing I
use a lot of oil, rub oil on
walk on it if it hurts
if it hurts keep it going
keep it warm
I believe in keeping the hips warm
that’s the way I’ve done
and I’ve shovelled snow…’

anon 2009