How Access to Work has helped me

Note: another post that’s not been properly proof read.  sorry, exhaustion and pain levels mean if I did have to carefully edit, the post would never see the light of the internet.

At the point of writing I have had three access to work assessments. All of which have resulted in me being able to stay in work.  There is talk about reducing the support available through Access to Work, which seems ridiculous alongside the focus that the government is placing on making everyone work.

I’ve written this post for two reasons really.  Firstly, if you have a disability and haven’t contacted Access to Work, I hope it encourages you to.  The amount that your employer pays towards equipment etc is dependent on the size of the business and it’s all things they would need to put in place under the Equality Act 2010.  Secondly, it’s to illustrate just how important Access to Work has been in my life.  I am not exaggerating when I say I’d have had to retire on ill health two or three years ago if it wasn’t for Access to Work.

In the UK, an Access to Work grant can pay for practical support if you have a disability, health or mental health condition to help you:

  • start working

  • stay in work

  • move into self-employment or start a business

Note, there is a different system in Northern Ireland.

At the point of assessment one, I was struggling with the basics of my job – writing, typing, holding the phone and I needed a more supportive chair. Without this, my condition would have got worse more quickly and I would have had to leave my job within a year. Possibly sooner.

Assessment one (2012ish) provided me with:

  • Ergonomic keyboard
  • Ergonomic mouse
  • Footrest
  • Ergonomic chair tailor built for me
  • Headset
  • Headset splitter
  • Dragon software
  • Pen again pens and refills
  • Dictaphone

At the time of assessment two, my condition had worsened significantly and my legs were much more affected by pain whereas previously my hands, wrists and shoulders were the focus. Without taxis to and from work, I couldn’t get there – getting public transport involves more walking than if I just walked to work, which is not an option. If it wasn’t for access to work, I would have to pay £10 a day on travel. And putting that in the context of a part time local authority job, it’s quite a significant amount. So again, if it wasn’t for access to work, I’d probably have had to leave my role in December 2014.

Assessment two:

  • Taxis to and from work
  • Taxis to meetings in work
  • Advised about free software
  • New headset (as my condition has worked)
  • New footrest (as we’ve moved office and the desk is higher)
  • New ergonomic keyboard
  • New ergonomic mouse

Assessment three is less dramatic in terms of keeping me in work. My new chair helps reduce pain in my entire body but as my pain has increased considerably at the same time it’s had less of an impact. But if I was still in my old chair, the pain I’m in when I’m at work would have been far too high for me to work.

Assessment three

  • A new chair (as a result of anorexia my chair from a the first assessment a few years ago was no longer appropriate)

And yes, despite all the access to work support i am still having to reduce my hours but without it, I would have lost my job years ago.

So I hope I’ve illustrated just how much of a difference access to work can have. But we do need to keep in mind that there won’t always be a suitable aid or adaption to help someone find or stay in a job. There are just some disabilities which are not compatible with employment. And in my experience, these are people, like myself, who would love to work or keep working but just can’t.

Advertisements

World Enough and Time Part 1

I’ve just come back from an amazing adventure to a tiny island off the North West of Scotland.  My purpose in this rather long journey on our public transport system was to attend ‘A week of art-making, writing, poetry and reflection on Tanera Mor‘.

It was a really enjoyable week, I cobbled together some words, made some books (this is currently my favourite thing ever – it’s a lot of fun) and got myself covered in paint.

In case you’ve never thought about it, it’s a long way from York to Ullapool (where I was staying before I got my lift to the pier).  The first train was York to Edinburgh then a train to Perth followed by a train through the Cairngorms to Inverness.  Here I stopped to visit Leakey’s (a great treasure trove of second hand books) before getting a bus to Strathpeffer and then finally getting a bus to Ullapool.

York to Edinburgh

Nostalgic autumn haze

Hangs over golden fields

 

The sun punctuates

Revealing dusty purple heather

 

The vast tall sky

Is squashed by heavy grey clouds

 

Edinburgh to Perth

A flask full of coffee – still warm

And a list of train stations

To wrap your tongue around;

Haymarket

Inverkeithing

Kirkcaldy

Markinch

And

Ladybank

 

Perth to Inverness

Suspended raindrops

Blur land and sky. Wispy clouds

Cling to highland rocks

 

Scottish Highlands

Purple and gold hills

White houses, green forest

Grey rivers cut through

A texture infused landscape;

Soft ferns, prickling pines

Hills dipping, overlapping

Rocks protrude and ruins

Pull you into memories

Soon to be published!

A while ago I took part in a poetry writing workshops as part of the project “Order, Chaos and Chronic Illness”.  They are putting together an anothology of some of the pieces written in the workshops and have approached me to ask if they can include two of my poems:

Perspective

I have not climbed Mount Everest
But I have reached the peak of Pen-y-Ghent
My own, overwhelming challenge
The same aches in my painful joints
The same sense of achievement
And once in a lifetime-ness

Accident and emergency at York Hospital

Eyes searching
No one helping
Heart racing
Hospital induced panic

From a seat, next to her bed
We pass an iPad between us
Her morphine mind grappling
With scrabble words, scrambled words

One room, four patients
Me, the only visitor
Loneliness cast over the elderly woman
The nurses say they were unable to reach her children

Clatter of life outside rattles into the ward
Her phone alerts her to a friend’s concern
Ours are the only voices
Disrupting the cacophony of A&E

Later, I hear how the laughter has brightened
Her roommates’ day and how lovely my sister is
She’s always been a charmer
Even from her hospital bed

Writing Recklessly

“The way to find your true self is by recklessness and freedom”

Brenda Ueland

I’ve attended a few of the York Festival of Idea events and will be trying to get together some poetry from each of them. The first, and easiest to post about, was Writing Recklessly:

The very idea of ‘craft’ seems to assume that all writing should be working towards order, or some form of writerly control over the creative forces within and around us. This big, messy workshop with lecturers in Creative Writing from York St John University will question that assumption, and flip the idea of bringing order to chaos on its head.

We’ll celebrate the disorder underlying even the best laid plans, using exercises and alternative practices to help bring the energy of an unpredictable world into your work.

Recklessness isn’t something that really comes naturally to me so this was always going to be a challenge.

The workshop was a nice mix of poems being read, ideas being talked about and writing exercises.  The first exercise was to write about an experience without imposing order or claiming to have come to understand something or learnt something through it.  I’ve left these pretty much as they came in an attempt not to impose any more order on them:

Caught up in a nebulous

Boundaryless, messy, big bang

Cloud of gas.

Chaotic flashes of rainbow

And star birth engulf.

I stand at the centre

With ruler and notebook

Calculating rapidly

Clutching at changes

Desperate to control

And order that which

Surrounds me.

 ~~~

She has sentenced me to time

In a bleak, black cell

Period unknown.

She oversees every move

Controls every thought

Restricts my life

Holds me in my prison.

In the dark, dank jail,

I see no light.

 The second part of the workshop was looking at describing a reckless action in a reckless way.  As I said above, I’m not an especially reckless person so have very few experiences of my own to draw on.  Perhaps you could share yours in the comments?

Part of writing recklessly is about not following the rules.  One of these rules being write what you know.  To help us with this, we read a few pieces written from the perspectives of animals before writing our own piece.  The examples we looked at were an extract from The Bees by Laline Paull, Honey Cycle by Les Murray and Hive by Carol Ann Duffy.  The animal I chose for my own writing was a dinosaur!  I’ve since fine tuned this to a diplodocus and am still working on it.  I have ideas but I’m struggling to turn them into words.  This seems to be a bit of a general theme for me at the moment.  I’m hoping as my health improves that my brain will return and I will be able to think intelligently and creatively again.

Finally  we looked at ectoplasm.  After a brief discussion we were shown a few photos of ectoplasm and asked to write our response.  I have never really considered ectoplasm and will possibly never do so again:

The figure is headless

Or the photograph is.

Who am I to presume

The body has a head?

Normal circumstances would

Let me take this liberty.

But rules of certainty

Have been broken.

The image displays

The impossible –

Evidencing ectoplasm.

My eyes see clearly

This falsehood.

To engage with one deception

Requires the possibility

That all other truths

Are lies.

The figure is headless.

I really like the idea of writing responses to photographs and art and it’s one I’d like to do again, although probably with less ectoplasm!

Poetry and illness

The Centre for Chronic Diseases and Disorders is exploring poetry and illness.  As part of this, they have been running a series of workshops aimed at health care professionals, and people affected by chronic illness.  In addition to the workshops there are a couple of events coming up in York in June and an anthology of poems is going to be put together.

I went along to one of the workshops this week, not entirely sure what I was walking into.  I really enjoyed the two and a half hour session led by Peter Sansom who has contagious enthusiasm.

The afternoon was generally took the form of a poem being read aloud and then a few minutes for us to write, generally based on a similar structure or prompt from the poem.

The following are some of my unedited scribblings from the afternoon.  I do plan on revisiting and revising them.

Prompt: Where am I?

I’m under the duvet hiding from my life
I’m twisted, contorted around a waiting room chair
I’m in every joint of my being, feeling the blurry edges of pain
I’m stuck in my mind, trapped by mental illness, freed by imagination
I’m sunsoaked, by the sea
I’m where I want to be

Prompt: Julia Darling’s Chemotherapy, “I did not imagine…”

She did not imagine that at twenty seven she would have shrunk
Smaller than her eighteen year old self
She thought there was a world, awaiting her
Free from the black that clung to her

She had moved one hundred miles
One hundred miles, nine years
More scars, new pains
She hadn’t had a plan but she did not imagine this.

Prompt: I’ve not done… but I have… (I think this was based on a poem by Simon Armitage)

I have not climbed Mount Everest
But I have reached the peak of Pen-y-Ghent
My own, overwhelming challenge
The same aches in my painful joints
The same sense of achievement
And once in a lifetime-ness

Prompt: Imagine a time you were in a hospital

Hurry though automatic doors
Trying to find her
Eyes searching
No one helping
Heart racing
Hospital induced panic

From a seat, next to her bed
We pass an iPad between us
Her morphine mind grappling
With scrabble words, scrambled words

One room, four patients, one visitor
Loneliness cast over the elderly woman
The nurses say they were unable to reach her children

Clatter of life outside rattles into the ward
Her phone alerts her to a friend’s concern
Ours are the only voices
Disrupting the symphony of A&E.

Later, I hear how the laughter has brightened
Her roommates’ day and how lovely my sister is
She’s always been a charmer
Even from her hospital bed

Prompt: Write to something eg jogging, stammering, piano lessons

A letter to my chronic illness:

Why did you come into
My life and start stealing from
Me? What had I done to
Provoke you? You are
Stripping back my independence.
I’m clinging tightly but it’s
Exhausting when you throw toddler tantrums
How can I hold my
Grip on myself when you scream
At my ankles, at my legs, at my body?
You’ve taken so much and
Given so little.  If you were a
Friend, I’d have crossed you
Out of my address book years ago.
You’ve ripped my dreams to pieces
Whilst laughing in my face.
You’re always and forever there.
Please tell me
How can I get a divorce?

Yours, in shackles and chains.

I am the sea

This may be the last of my creative writing retreat posts.  We were asked to think of ourselves as a place.  We then split into small groups and had to answer questions about our place eg what’s the weather like, what colours are there etc.  My first poem is my response to this.  My immediate thought was the sea, upon exploration with my group it turned out I was the middle of the sea.

The second poem was cobbled together on the train home from Horton in a post writing retreat euphoria.

I am the sea

Ocean bleeds into sky

Grey waves crash

Into clouds

 

Stranded

In a boundary-less

Expanse

 

I am unreachable

Indistinguishable

From the bleak desert

 

My waves crash down

Shatter upon contact

I am breaking myself

 

Somewhere between murky

Waters and misty skies

I sink heavy and numb

 

The mystical power of salty air

Was my saviour

But now I’m too far from shore.

 

Returning

 

A patchwork of beech, ash, elm

Each a unique shade of autumn

Boney fingers curl into tired mist

As two parallel lines gently rock me back to York

 

A slow transition into the rest of the world

Taking with me a small part of Horton

Crumbing stone buildings become housing estates

Purple grey darkness closes in

 

The man and woman next to me

Break off a piece of chocolate each.

Are they leaving somewhere too?

Or is their journey just beginning?

 

Eyes close in denial

As the supermarket approaches

A beacon that home is close

Passengers gather belongings

 

Step down onto solid York

I am home

With Horton magic

Still visible on my skin

Creative Writing Retreat Part 3

In case you missed them:

We looked at a poem by Lao-Tzu (translated by Timothy Leary) called All Things Pass.  Once we’d read it, we wrote a list of things that pass and then used that to write a poem.  It was a really interesting exercise and it was great how varied everyone’s work was.

All things pass

All things pass

Stars, even

Constellations now ghosts of myths

Rock solid North Star

Guiding sailors for lifetimes

No longer hangs

In the tapestry

Of the sky

All things pass

 

All things pass

 

Autumn steals the summer’s warmth

Hibernation tugs at souls

Slowing into desolate months

 

All things pass

 

Skelton trees, bleak shadows of former selves

Finally, Orion, Greek hunter, pierces the dark

Pinprick beacons of hope

 

All things pass

 

Sunlight revives winter weary bones

Fresh, vibrant shoots burst through soil

A patchwork quilt of colour surrounds

 

All things pass

 

At last, sunrise to sunset stretches

Ahead with possibility and energy

Perseid meteors scatter short-lived nights

 

All things pass