The Beautiful Octopus Club (an e-chapbook)

 

THE  BEAUTIFUL  OCTOPUS  CLUB (an e-chapbook) 

 

Triptich…
The Meeting (i)
Walking in Rectangles (ii)
Piggy-back (iii)
Winston
Hester
Bernie
David
Sarah
A Conversation with Kenneth
Downs Syndrome
Park Bench
Christine

My Favourite Holiday
Cliff Richard
John
the blood of my friends
on any other day
Cynthia
a different beauty
Richard
Glen
Kenny
Hugo
Mud on a Sunday Morning
The sky is a great big green balloon
The Beautiful Octopus Club


 

 

 

TRYPTICH

 


The Meeting (i)

The first thing I noticed
was he wouldn’t look at me,
or even near me,
or even through me,

I’d been told what to expect
but this threw me
more than I expected,

“Can be challenging”
didn’t quite cover it,
“He bites and smears himself in shit”
covered it,

He was seven,
I liked his mother right away
coped alone till he was five,
Dad had dived for cover soon after diagnosis,

Autism,

The weekend started badly
and got worse,
You can either wipe up shit or not,
Luckily and muckily I could,
Her first break in years,
My first “caring job”
ended in tears,

mine not his.

 

 

Walking in Rectangles (ii)

The garden was beautiful
full of interesting shrubs
and tubs of bedding plants,

The lawn was neat and mowed
but owed its oddness
to the rectangular path
worn down to earth and dust,

I watched him as he trod it,
thumb and two fingers of each hand
rubbing carefully selected blades of grass
held close to his face
as he paced his rectangle,

“Cannot communicate”
“non-verbal and aggressive”,

I guess because I had nothing else to do
and I like to feel I’m
doing something,
I got up and followed him,

Two hours we trod the dusty rectangle
Two hours,
I even picked some grass and twidled,
two hours

and he turned

and he looked at me.

 

 

Piggy-back (iii)

Fourteen and awkward
and fancying Helen,
and wanting her to just know
I existed,

Sunday afternoon
Talja, (his mum was Norwegian),
spent four happy hours
(my happiness not his)
showing me each piece of lego
each scrap of paper,
each hidden piece of cutlery,
that was his world,

I had to touch each one
hold it close to my eyes,
and to my surprise
a whole new world
unfurled and breathed,

We went to the park
his lonely gait
a stark reminder that he
had not changed,

We took a different way home
came across a cattle grid,
incongruos somehow,
and how to cross,

I knelt and offered up my back
“Piggy back?”
and up he jumped,
and up he jumped
and I existed in his world,
and sometimes
this is
what love is,

Twenty-four and awkward
and trying to make friends
with a boy
from another world

 

 

 

 

 

 

 

 

 

 

Winston

Winston,
Jamaican dad
but he was always a south of the river lad,
Catford, New Cross, Lewisham,

“His grin could win the world cup of grins”
that was his Nan, tall and dark and beautiful,
She spoke at his funeral…
“Beautiful, also, is the sun
Beautiful, also, are the souls of my people”

She spoke not of the colour of his skin,
rich and dark like beauty,
she spoke of his disability,
autism,

His gift was that he learned to speak
our ordinary language,
his life a triumph of rich nights
spent singing with his band,
“Heart and Soul”,

and he was their heart
and he was their soul,

and I know my words are too pale
to capture him,

but he was my friend,

Winston.

 

 

Hester

Hester wore hot-pants
that was her thing
in 1991
in Sydenham,

I was 24
in the middle of a year
of voluntary service
when I moved in,

Three bedroom terrace
but one spare
since Cynthia left,
alzheimers,

“You’ll be ok,
but if she doesn’t like you
your things are out the window
or sold at a boot fair”

I could not have loved her more
had she been my own sister;
hotpants
and downs syndrome,

and an attitude to life
that said
take me as I am
or leave me be.

 

 

 

Bernie

There aren’t really words for Bernie
not really
just myths and stories
and knowing smiles;

Coming back from Alan’s stag night
in the shopping trolley
and puking all over the night-staff
people with Downs Syndrome don’t do that,
Bernie did;

Stealing spoons from wherever he went
hiding them in his underwear
to be revealed with a shout of “poons”
in the middle of some important social worker visit,
and laughing
like it was the best joke in the world,
and it was;

Hiding all the stuff of any new staff
all around the house
and looking so innocent
because he was blind;

Singing “Bend it”
by Dave Dee, Dozey, Beaky, Mick and Tich,
non-stop
till everyone gave up and joined in
and laughing
like it was the best joke in the world
and it was;

And that hoilday at Butlin’s
when I had to share a double bed with him
because they got the booking wrong,
and he told me to behave;

And standing there
as best man at Alan’s wedding
all suited up and booted
and showing all the respect and love
that they needed,
getting it
just right;

that was Bernie.

 

 

 

David

The first time I met David, he bit me.

I am standing outside the hospital, the old gates to the hospital, Victorian arches, that are lonely left, un-instituted, and substituted by modern housing, housing us, separately, Barrat-barracked solitude. David is with me, he stands near me, still nervous after twenty years away. Today is supposed to be a celebration. We’ve come to show him that Grove Park, that dark Victorian bedlam has gone. It is not a celebration. It is a dancing on graves, brave laughter of the survivors of the system, cystern pumped and thumped so many times it blunted, became blunt. We are blunt in our un-feeling, our oh so revealing blindness to what is right before our eyes, is wrong before our eyes.

The first time I met David, he bit me.

I am standing outside the hospital and I at least smile, my wry-dry-trying-to-be-empathetic-turning out pathetic smile. This is his pain not mine. I cannot borrow it to look good. I shouldn’t even try, but I do. Twenty five years of ward-ridden bored-written boredom are his to forgive. He does not. He remembers the beatings and the rapes, the hunger and the hurt, the lies to his parents, when they came, if they came. We all hid him, hid from him, like that aunt you never spoke of, choked on the christmas cards your mother sent; poor recompence for the unvisited, the forgotten.

The first time I met David, he bit me and called me “nurse”. He had a fear of tall men with glasses. The care plan said…”Autism is his world, you are the uninvited guest. Learn to speak his language”. I have never read a better “Care Plan”.

I am standing outside the hospital, and David turns and takes my hand. He wants to leave, not touch me. I understand. We go. And that is the end of it. The taking of stock, the paying of debts for a social work system that never even knew. These are his pains, his wounds, and I am grateful they are his, to forgive, let go….or know forever.

The first time I met David, he bit me.

I can see why.

 

 

 

Sarah

“Make it stop, make them beatles go away”
It’s ok Sarah, they are gone now.

Sarah had her own lounge
in a care home for 32 people
all with “challenging behaviour”
she was “too violent” to risk mixing
with others
with us.

Sarah had Aspergers
but not the friendly face of it;
the lost in a nightmare world
of unfolding fears and tears
face of it.

Sarah’s was a world
I could not access,
I could not place myself
in any framework that made any sense
to her,

I could not connect.

When you work in care
no-one tells you
how many funerals there will be
or how sometimes
you really
can’t make it better.

Sarah, just once shook me
took me by surprise
looked into my eyes
and said…..”make it stop”.

I couldn’t.

Autism is lonely, and terrifying,
and we need
to try harder.

“Make it stop, make them beatles go away”
It’s ok Sarah, they are gone now.

 

 

 

A Conversation with Kenneth

You know you’re batting on a losing wicket
when the notes say…
“high functioning Asperger’s with challenging behaviour”
all thoughts of being soft are wavered.

Kenneth rang rings round me
he seemed to understand the rules
but in the end
was too cool to succumb,

It is a hard lesson for staff
but laughingly well learned
“Learning Disability”
does not mean dumb.

Kenneth’s logic was irrefutable
unmutable in its simplicity…

“I want to go to Chessington World of Adventures.
I can’t so I am unhappy.
I am unhappy so I will…
cut all the power leads
turn on all the taps
flood all the rooms
and deflate all the tyres
on the staff’s cars.”

None of this was malice
just the odd logic-magic that can be autism.

He won, of course,
not blackmail, but a “managing of situations”
if the autism had allowed him humour
he would have laughed.

I smiled
for him and for myself
as we took the turning
marked “Chessington”.

If you are going to talk,
walk that dodgy road,
be aware
that you are not
the most intelligent person
in a conversation
with Kenneth.

 

 

 

 

 

 

Downs Syndrome

I met Alan a week before his stag night
he invited me straight away, no questions,
he was like that,
The night itself was glorious, delirious,
we wheeled Bernie home in a shopping trolley,
he sang “Bend it”
all the way back to Forest Hill,
The wedding was thirty years of love
made real, special and ordinary,
everyone cried and smiled,
it was that sort of day,
Two years I was Alan’s keyworker
best-mate-shirker and cup-of-tea-boy!
he called me slobberchops,
he knew,
The important stuff
the stuff about love and friends and all that,
the stuff I try to teach my kids
I learned from him,

His love was no less strong,
His tears were no less real,
His laughter was no less infectious,
because he had a label.

 

 

 

 

Park Bench

The old couple sit, park-benching,
he is tired,
she lets him rest
and they laugh at the ducks.

The holding of hands
is so gently done,
a putting on of gloves,
natural,
as only thirty years of love
can be.

I imagine them at parties;
her all flirty with wine
him, her rock, her safe place.
There is gentleness
in love.

I imagine them at home
arguing over Eastenders
or the football,
he gives in
and she cuddles up
on the sofa.

Passers-by stop and smile;
two people with Downs
giggling love
on a park bench.

I just see Chris and Alan,
an old married couple,
and I
smile too.

There is gentleness
in love.

 

 

 

 

Christine

Twenty years in Grove Park Hospital
walled in for the sin of having Down’s…
Christine,

She married Alan, three years after
leaving that place,
a disgrace to our safe notions,
surely a scar on our emotions;
do we
really
represent
humanity?

She married Alan
and that should have said enough
gruff and grumpy voices
silenced by love.

She married Alan
having been his
partner-lover for twenty years or more;
(how we love that longevity today)

She married Alan
and two years later
was caring for…
a man robbed from her by alzheimers
a man robbed from her by hospitals
a man loved by her and given
a dignity in death,

by her.

 

 

 

My Favourite Holiday

Butlins at Bognor Regis
1992 and David.

This is David who hates change?
yes
This is David who bit you the first day you met?
yes
This is David with epilepsy
yes,
but not as bad as Jo’s

And who else is going
Jo
You’re fucking nuts,

Having cleared it with the mrs we set off for Butlins
four clients (David, Jo, Bernie and Dorothy)
two staff (me and Bridget)
for a week of tears and laughter
but mostly laughter,

David, autistic, never been away,
never had a holiday,
you don’t get holidays from autism,

Jo, his girlfriend
in the sense that she clung to him
hung on him for comfort, loved him,

Dorothy,
if downs syndrome had a political wing she led it,
My friends call me Dolly, you can call me Dorothy,

Bernie, this is not his story but he was there,
enough to say he could always make me laugh
just by saying “spoons”,

First night was frightful, Jo had a major seizure in the dining hall
and all the guests just stared,
David got upset, very fretful
so I took him to the lauderette and we watched the washing cycles
it comforted me as well.

The rest was just the best
the best of times,
David’s smile at the fan dancers (not naked but he thought so)
Bernie watching the go-carts (he was blind but swore he saw them)
Jo just happy, no muttered words or scared looks,
Dorothy, my Dolly, relenting and giving me a cuddle
only to pour a puddle of coke down my back
how they all laughed at that,

But most of all David
he hadn’t changed,
just been allowed to be in a different place
and watching his face I learned what that can mean.

Butlins at Bognor Regis
1992 and David,
my favourite holiday.

 

 

 

John

something dirty
something crushed
swept away
forgotten dust

I knew John for six years
and I don’t remember him smiling.

I knew him first as “undiagnosed
with a non-specific learning disability”.

I knew him as the one who lived alone
in a flat in Lee, “copes but needs help”.

I knew him as the one with the porn collection
“no female staff will work with him”.

I knew him as the one who listened to Dolly Parton
“because she has big tits and I think my mum liked her”.

I knew him as a peddlar of petty drugs
and getting the charges dropped because of “his condition”.

I knew him as the one who beat his mate up
‘cos his mate’s girlfriend said she’d been hit.

I knew him as the man who always wore a suit and tie,
but rarely shaved and never washed, just sprayed de-oderant.

I knew him as the friend who turned up drunk on tennants special brew,
at my flat, Christmas morning, puked in the sink
and made sure I was not alone that Christmas
because he knew Anita was away at home.

I knew him as the man, who only once
spoke about his family, that put him in care,
aged five, to be beaten and abused
till he could get out of “that fucking hole”.

I knew John for six years
and I don’t remember him smiling.

something dirty
something crushed
swept away
forgotten dust

 

 

 

 

 

the blood of my friends (sonnet iii from “decade”)

i am pissing their blood and it is no
less red. their love is just as sharply felt,
their hate as fierce, their touch as soft, as though
it matters what imperfect hand is dealt

to them, to any, we are not perfect
but we are beautiful in all our tears,
in all our imperfections. our defects
are our beauty. humanity is near

to being bankrupt if it cannot love
the weak, the poor, the ugly “less”, who are
the whole of us, and is it not enough
that they must learn to love these hard-won scars

without us picking at them till they pus.
our schadenfreude. grateful it’s not us.

 

 

 

on any other day

on any other day
i’d have gone to hospital
had the bites cleaned out
shouted at some nurse
whose fault it wasn’t,
taken something
to numb the bruises.

on any other day
there would have been
no need to “get in the way”
but jamie had lost it
and there were family visiting.

on any other day
a soft word,
a kick-about in the garden,
nutella on toast,
would have calmed him,

but he was un-visited
ignored by a family
who’d rather pretend
he never existed,
at christmas.

on any other day
he might not have given
such a howl-driven picture
of his pain.
misunderstood.

anyone who thinks…
that being autistic means you have no emotions
that being autistic means you cannot connect
that being autistic means people don’t matter to you
…please see with different eyes.

on any other day
i might have been angry
but i went home to my family
and shared christmas.

jamie.

 

 

 

Cynthia

I never knew Cynthia,
just the shell of her
moments of her that reminded others
who she was
with laughter
or tears,

She’d lived independently
with Hester,
for as long as anyone could remember
and then
she couldn’t,

A Doctor once told me
that anyone with Downs
who lives past 50
has a 50/50 chance of getting alzheimers,

That Cynthia lived for five more years
when Alan died in five months
says what a stubborn, brave and
belligerant old thing she was
and must have been in her prime.

I never knew Cynthia
just the shell of her,
but she was beautiful
in her loss
and there were many times
as I fed her with a sippy cup
that she’d take a swing at me
and tell me she could
do it her bloody self.

Beautiful.

 

 

a different beauty

i’ve seen naked.

cynthia
fifty-two with a catheta fitted,
three years of alzheimers
stole the sparkle
that comes with “downs”,

cynthia –
i changed her pad
wiped away the shit
others chose not to smell
near the end of their shift,
cynthia
bed baths and hoists,
dignity
isn’t measured on a tick list of pad changes,
but in the eyes
and in the days
when
naked moments
passed between us –
giving her a drink
in a sippy cup,
her lips, old and cracked,
life is brittle
and hurts,
she just left me
no words
no fuss,
she wasn’t family
but important;
fragile.

cynthia.

 

 

 

 

Richard

Richard is not a poem.
He is an ugly abuse,
used and discarded
hard to like,
and harder to work with,
ugly as life can be.

Richard is not a poem.
He is an abuser,
taught from an early age
but still…
unforgiven.
difficult to cope with.

Richard is not a poem.
He is the man
who threatened staff with a knife
who threatened staff with a smile,
who talked about arson;
because he knew that burns the system.

Richard is not a poem,
he was abused in care
and dare we say that how he
responded
is wrong
is anything other than normal,

Richard is not a poem
and I do not like him
and I never did,
and is that
how we
treat the weak?

 

 

 

Glen

It was a dirty night
Railway Tavern, Sydenham,
1991.

It was a dirty pool-playing
lock-in of a night.

Me and Glen played doubles
took on allcomers
anyone and everyone
any shape or size
we didn’t care.

Glen always asked for two shots to one
on account of his Downs,
on account of his big soft eyes
and winning smile,
people learned fast
he’d only sneak that one past newcomers.

If I’d been with anyone else…
as Glen fleeced the punters with side bets,
If I’d been with anyone else…
as Glen took the piss with trick shots,
If I’d been with anyone else
I’d have been lucky to escape a beating,
but I honestly think they saw it
as giving to charity,
and I was with Glen;
Glen who anyway
would probably
have thrown the first punch.

It was a dirty night in Sydenham
in a  fag-end dog-rough pub
and it was magic.

 

 

 

Kenny

Kenny was a mate of mine,

we used to go and watch Millwall together

managed to blag a couple of season tickets

on account of his disability

I went along as his carer;

too bloody funny.

Kenny had Down’s Syndrome.

He didn’t worry about it;

he had some trouble speaking

and the most evil sense of humour I ever knew

I can still hear his laugh

worse than Mutley.

Kenny swore a lot

but

“Fuck off” came out “Fug all”.

He was proud that he could say his own name,

properly,

H

he’d tap his chest and say

“Kenny Evans” when introduced.

I didn’t know better when I first met him

so I tapped my chest and said…”Philbrook, Simon Philbrook…”

He roared with laughter

and ever after when I arrived he’d tap me on the chest saying..

“Fug-all, Fug-all, Smime”

then fall about laughing.

I miss that.

Kenny loved football,

he loved the cheering and the chants,

and anyone who scored…..them or us!

Upper tier behind the goal

whenever “the referee’s a wanker” could be heard

you knew that Kenny would be standing up conducting

like it was last night of the proms.

At home to some crap nobody’s in the cup

Thatcher steps up to head away a corner

perfect own goal

silence,

visitors end was always empty then,

Kenny stands up

shouts “GOAL” in perfect diction,

I couldn’t look.

then from a couple of rows behind the chant began

“Stand up if you love Kenny…..Stand up if you love Kenny”.

He conducted’

I cried.

This is why I bloody love football.

 

 

 

Hugo

I woke at just gone 2am
the on-call phone
nagging me towards
a bleary hello,

“There’s been a break-in
someone’s stolen the Christmas Tree”

I gathered my thoughts
and considered how
two waking night staff
could not see a thief break in
and steal an eight foot Christmas tree
from the main lounge
of a care home with 32 people in it.

Hugo.

I threw on some clothes
and drove the five miles in,
begining to rehearse
the words to use,
some sharp abuse
for losing Christmas.

Hugo.

Have you called the police,
rhetorical of course,
of course they hadn’t,
a procedures file is often considered
as irrelevant when it comes down to it.

Hugo.

I brushed past the staff and went straight up
to Hugo’s room
and there
squashed in the corner
was an eight foot Christmas Tree,
I smiled.

Hugo was a short, fierce, Down’s man
with a beautiful ponytail
and a sense of the absurd.

He stole anything he could
and destroyed anything he couldn’t steal.

This was his masterpiece,
an eight foot tree past two staff
up three floors along a corridor
and put back up
squashed, but decorated.

The man was obviously
a genius
and I could only smile.

The staff at least had the decency
to muster sheepish looks.

Hugo
that night
and forever
my hero.

 

 

 

 

 

 

Mud on a Sunday Morning

You don’t know how good mud feels
till you are sat in it
exhausted from laughter
on Boxing Day morning
in Crystal Palace Park,

Jumpers as goalposts
Bernie in goal at one end
Hester at the other
Only two rules…
staff are not allowed to score
and anyone showing too much skill
has a penalty against them,

No-one could stay on their feet
and no-one could remember the score
in the pub by mid afternoon.

Ten years later
I am sat in a meeting
with social workers who have never even met
the service user they are reviewing,
I am speaking fluently
in the language of a Registered Care Home Manager,
and I wonder
where all the mud went.

 

 

 

The sky is a great big green balloon

Me and Johnathan
sat quietly
looking at the sky
top of Primrose Hill,
London, all still and whispered
before us,
just as I imagined it
from the movies.

Visited his mum
now eighty
the weight of years
paint-peeled and dusty
across her face,
but traces of laughter
still lingered.

The journey up,
from south of the river
had been a nightmare,
the tube tugged hard
at his ticks and tricks
touching any cornered edge
to feel safe.

“They never called it autism
when he was a kid”
his mum had said,
“Just beat him and told me
he was simple“.

“He never really talked,
that’s how I knew,
at first I thought he caught it
from no knowing his Dad,
died at Tabruk you know,
I have a medal”

“Later I saw that he was lost
somewhere in there.
There have been moments…
he’ll catch your eye
and say something, and smile.
I know he loves me”.

I lie back in the grass
passing time to let the rush hour go
before we show our faces to the journey.
Johnathan looks up,
then half across at me and says
“The sky is a great big green balloon”,
I look up
and see it just the same,
“Yes it is” I say.

Yes it is.

 

 

The Beautiful Octopus Club

who are my people?
where do i belong?

I’m going down to Deptford
the Albany
first wednesday of the month
“The Beautiful Octopus Club”,

I’m going to be there
with my friends
back to my roots
hoots of laughter,
and Winston’s grin,

draped from the ceiling,
each tentacle
a miracle of colour,
this is the place
I smile most,

dodgy disco
decks the evening out
with awful dancing
and laughter,

Pauline sidles idly up to the d.j.
says she loves him
and requests Cliff Richard
we all groan,

Cynthia is here
in her wheelchair
eyes light up
as “The Young Ones” blares out,
“Shout” follows quickly
and we’re all dancing,

Winston takes the mike
mighty lungs ready
heart and soul,
he sings,
“Heart and Soul” the best band
in the world,

Kenny starts to pogo,
I still don’t know
where he learnt that,
batters into
a couple of the “care workers”,
evil grin
and he begins again,
like it’s 1977,

Hester’s wearing hotpants
of course,
“The Beautiful Octopus Club”
tub-thumping happiness,

I’m going down to Deptford
the Albany
first wednesday of the month,
to be with my friends,

these are my people
this is where i belong.

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