>The Meaning of Wheelchair User #wheelchair #language #disability #disability #CP

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I’ve been thinking for a while that there needs to be a different term to wheelchair user.

I spend 99% of my waking hours in my wheelchair. I can stand to transfer but I need to get my chair right by the bed or the loo or whatever. The thing I’m transferring to needs to be the right height and also stable. In the bathroom I have to have grab rails and with them I can take a couple of steps. If I stay in a hotel I have to a room with a wheel in / level access shower.

That’s what I mean when I say “I’m a wheelchair user”

Other people who use wheelchairs have a lot more mobility than me. Need to get up a couple of steps? It’s a struggle but it’s doable. Or they can use a normal toilet if they can get their chair outside the door. Perhaps the offer of a ground floor hotel room is all they’re looking for.

And of course there’s a whole spectrum of wheelchair users beyond and in between my own level and that of my hypothetical wheelie.

The thing is though it feels like lately I keep being told “we have wheelchair access” or “we’re used to dealing with wheelchair users”. And then whether I turn up there, or we’re just chatting and it comes up or I ask pointed questions the truth comes out.

They might have wheelchair access but not for a wheelie who can’t manage in the ladies? A wheelie like me. They don’t have the access I need. But it’s ok. Because they have “wheelchair access.”

This NHS support group thing I might be joining, the staff say they have a lot of wheelchair users. They’re used to dealing with them. It felt to me like they were making a big deal of that. Then when I went to meet one of the staff members. And the majority of their wheelchair users? Struggle with distance but can still stand and walk a bit – we’re talking that level of mobility.

The staff are used to that sort of wheelchair user. I’ve already been told that in what I consider a big part of the programme, they can’t accommodate my level of ability. They’ve made a plan to do something else but I can try the regular thing if I want.

Then there’s the accessible hotel room where I get grab rails – and a bath. Despite having told them I had to have a shower. No good wash for me then. Interestingly that hotel had 13 “accessible” rooms – and only 1 had an adapted shower.

I understand that we’re a huge spectrum of ability and need and we’re all different. I value that and I’m not suggesting that any one type of wheelchair user is better than the other.

But I am getting very frustrated and a little bit sick of hearing hype about wheelchair access and then finding that it’s not suitable for someone as disabled as me.

So I’ve been thinking that there needs to be different terms to wheelchair user. One that a wheelie with some out of chair mobility can use to ask for the facilities/access they need. A slightly different one that I can use that people understand means I’m an “all wheelchair, all the time” sort of wheelie and that’s the level of access I need.

After a couple of weeks of thought however I’ve not come up with any new terms.

>A Few Haiku #poetry #100daysofwriting #haiku #amwriting

>One of the things I’ve been hoping that will come out of this 100 days of writing project is that I’ll be stretched as a writer. And that’s definitely happening, the daily commitment is tough to maintain. But I’m enjoying it and I think the discipline of it is helping me a lot. I want to be stretched as a writer in other ways though.

One of the things I’ve always struggled with is set forms of poetry. And particularly haiku. I get confused by the syllables and knowing how many a word has. I really want to get the hang of it because I think it’s something that could help me with all my writing (in terms of pacing and rhythm) not just poetry.

So for day 12 of 100 I’ve attempted a few haiku.

Haiku rhythm confuses
And syllables elude me
Words meaning three lines

Sunlight on water
Birds flying in bluest sky
Perfect spring picnic

Cold crisp crack and crunch
Bleak midwinter has arrived
Sharp snow surrounds all

Red orange golden
Every leaf on the ground
Autumn’s presence descends

>Decisions #100daysofwriting #amwriting #poetry

>I’ve been doing a lot of thinking about various things over the weekend which has inspired this poem. My thinking hasn’t resulted in any real decisions as yet. It seems I can write about them but not make them today.

Decisions

Definitely

Maybe

Slowly

Quickly

Life flashing by
Information hits me
Coming from all angles
Blink and you’ll miss it

Up

Down

In

Out

Don’t know what to do
Information overload
There’s a need to filter
But scared to miss out

Today

Tomorrow

Me

You

Decisions decisions
Choices abound
Reasons for this
Reasons for that

Yes

No

Left

Right

Is it a good idea?
Or is it a bad?
Too many choices
Drives me mad

Forward

Back

Inside

Out

Life and death
Worries made worse
Easier ones
Are still a curse

Jeans

Skirt

Meat

Vegetarian

Responsibility runs through almost all
A heavy weight to bear
At the same time
I can’t always care

Black

White

Or those that come in shades of gray

More

Less

They won’t ever go away

>Things What I Have Been Reading – January 2012 #fridayreads, #readingchallenge

>I know! A blog entry that isn’t writing related! Nobody faint now…

I thought it would be interesting to blog about the books I’ve been reading (other than books in given to review I mean) this year. So here goes

The Particular Sadness of Lemon Cake by Aimee Bender

I loved this book but having tried and failed twice to explain it to friends I fear I won’t be able to do it justice. This was a little bit slower to get started than I’d expected but it certainly packed a punch. It really reminded me of The Time Travellers Wife but more in the feel of the book than the plot. Even when I was sure I knew what was happening it still surprised me. Absolutely brilliant.

Norwegian Wood by Haruki Murakami

I listened to the audiobook of this. I could probably have read the book quicker but I do like an audiobook now and then. It’s good for background listening as I knit or have a sort out. And it’s very relaxing so good when I want to rest but not sleep.

I chose this because it is one of the 1001 books to read before you die and I’ve been using that list for inspiration over the past few years. Its not something that would have been on my radar if not for that. Pretty much as soon as I started listening I was hooked. As I was getting towards the end I was really hoping there was a sequel but I didn’t want to look it up because I’d be really disappointed if there wasn’t. I did guess one of the big twists but it didn’t ruin the book for me as I didn’t guess the when or how. The characters were very, very real in a way that surprised me especially as mental health issues are involved.

Casino Royale by Ian Fleming

This is another of the 1001 books. It’s also my first ever Bond (nor have I seen any of the films). I spotted it when I was killing time in the library. It took me a few weeks to read it as I kept putting it down and reading other stuff, it just didn’t hold my attention well. I did like how gritty it was but was very surprised by the characterisation of Bond. Totally different to what I expected based on what I know of the films. Not sure I’ll be reading more!

Star Trek: DTI – Watching The Clock by Christopher L Bennett

A birthday present from my sister. This is Star Trek. Really, really good Star Trek. I loved it. Enough said.

The Trick is to Keep Breathing by Janice Galloway

Another 1001 book. I read this on my Kindle in less than 24 hours, absolutely blew through it. It’s a very different style of book but the style really helps to draw you in and portray the mental health problems the main character, Joy, has and which are the central part of the plot. It was very intriguing and I liked the way that even when the book ended it still had you guessing.

>Appearances Can Be Deceiving #100daysofwriting #amwriting #sailing

>Day 10 of my 100 days of writing. This is my attempt at a piece with more description of the setting. It’s an amalgamation of a couple of the places I’ve sailed and a bit of artistic license.

Appearances Can Be Deceiving

With its bare trees and complete lack of flowers at first the reservoir seems like a completely desolate place. The high winds whipping through your hair on this cold winters day add to that as you develop a feeling of being chilled to the bone. A sewage works looms in one corner of the grounds. Ugly, noisy and occasionally wafting an unidentifiable yet disgusting smell your way.

Everyone said it was a lovely place. The people are friendly you were told and the food is good. Plus you were promised that it had some brilliant views. But as you walk round it you can’t see it. So you tell your family that and they dismiss your complaints without even appearing to listen. On and on you walk. Who knew the nature reserve and reservoir was so big. You get colder and colder but bite back the complaints that are desperate to burst out. No one would listen after all. Instead you grudgingly keep going. Hands in pockets and a scowl on your face the words “you can’t choose your family” running round and round in your head. No words are spoken but you make the suffer along with you.

And then

At the top of a steep hill.

You finally lay eyes on it.

The reservoir itself.

Your first thought is that it’s huge. You can hardly see the opposite shore and just hope you aren’t expected to walk all the way round it.

Stopping then you gulp water thirstily, not having realised what a workout you’d got. And as you catch your breath you notice things which make your breath catch in a completely different way.

The first few buds of snow drops poking through the grass. White, dainty and oh so pretty you almost have to squint to spot them. Birds – hundreds of them – everywhere you look. Ducks and people on boats and boards sharing the water with no fuss. The quacking of the ducks and the laughter of the humans mingles with the birdsong creating a melody of happiness, life and joy.

A smile splits your face.

The first genuine one your family have seen for days.

And then later

as you watch the sunset over the water.

Blown away by colours so vivid you’d have sworn it was a photoshop job if it wasn’t right in front of you.

You realise – loathe as you are to admit it – this place isn’t so bad.

And they were definitely right about the views.

>The Story of a Writer #100daysofwriting, #amwriting, #writetip, #writersblock

>100 days of writing day 9.

I started writing about writing and finding it hard tonight – something that was recommended in the creative writing class I took if you ever got stuck. It’s not a technique I’ve tried before but it definitely worked.

I’d be very keen to hear feedback on this or any of my other pieces.

The Story of a Writer

Sitting there. Writing. Knowing that the words would flow easily once they started. But getting started feels almost impossible. So that should probably be sitting there, not writing. Got to be honest after all.

Wanting to write, needing to write. Longing to write, having to write. That seemed like all life was at the moment. Overwhelming at times but oh so worth it when it clicked into place. Feeling bad, feeling better. Getting it all out on paper or on screen. With smudged ink covered hands and splatters up the arms. Or with the fast rattle of words being pounded out on a keyboard and the sore wrists that can result. Printers that jam on the very last piece of paper in the house. Spilling a drink on the only handwritten copy of what you think is quite possibly the best poem you’ve ever written. Utter despair when you realise the file is corrupted and great joy when the email comes with that four word response every writer longs to hear: “we’d like to publish.”

All of those things were oh so great. Some of the best things of being a writer. Along with a few of the not so great things of being a writer. Those are the things every writer dreams of, the measures of success they aim for. But at the same time these are some of the biggest obstacles any writer prospective or otherwise.

Our writer was sitting there dreaming of all these things. Dreaming and wishing and hoping. But not writing. Oh no, actually writing something that was impossible. The ideas and the words were in his head. But even when give a choice of paper or screen getting them to flow down to his fingers and out for all to see wasn’t happening. That was probably a good thing although he’d never admit it to anyone. If he did write something you see then he’d have to do something with it. Put himself out there – and maybe fail. The idea of failure scared him, he’d never properly failed before.

So he sat there, pretending to write but doing nothing at all. Getting annoyed with his writers block and feeling his dream of publication and walking into Waterstones and seeing his book slipping further away. At the same time deluding himself that there was nothing he could do. He considered giving up several times. Because what good is a writer who doesn’t write?

Until one day, something changed. And instead of lying in bed plotting the next chapter of the novel he carried round in his head he wrote it down. It wasn’t the perfect story he’d invisioned for his first novel. It was gritty, rough and with characters he thought totally unrealistic. Hell he even got 45 pages in before a single word of dialogue was spoken (and it was just a single word – yes – too), something that would never be acceptable in a published novel) But the gap between the words he wanted to write and the blank word document on the screen was being bridged. His fingers were typing now, flying over the keyboard faster than he thought possible (and in case you were wondering his wrists did hurt and there were a lot of typos).

It might not be the best thing ever. His story may never be published and he doubted the Waterstones dream that had haunted him before. But for some inexplicable reason he no longer cared. He was writing. Actually writing with words to show for it and all. He wasn’t following a prescribed routine like he had before. He was simply doing and being what he loved – a writer. And nothing else mattered.

>Service #100daysofwriting #customerservice #poetry #amwriting

>Day 8 of my 100 days of writing. 1 week down, 13 and a bit to go (having just worked that out I’m glad I didn’t do so earlier). Today I have experienced good service. And also some bad service this evening where promises weren’t lived up to. It was very much a no harm, no foul situation but it left me frustrated.

This was what I came up with for my writing. I guess you might call it a poem of sorts.

Service

Smart sensible strong supportive service
Easy economical eager established everywhere
Ready raring responsive revitalising recommended
Viable varied valuable vital village-like
Isolated instrumental inestimable intense invaluable
Caring complex complete clear cornerstone
Everyday everywhere everything service matters

>The Lion’s Den

>I was thinking about my favourite quote earlier because it’s part of my focus for the year (something I need to blog more about). This is inspired by that quote and I hope it works. The quote is right at the end of the piece. I think it’s a great one for disabled people like me.

Also: day 7 of my 100 days of writing! Given the level my depression was at the fact I’ve made it this far is huge. I really wanted to do this but equally I wasn’t sure I could. It has been tough to find the motivation on several of he days but once I get writing I’m really enjoying it.

The Lion’s Den

Listening to the roar of the lions – terrifyingly loud from the safe distance of 25 metres where the audience waited and watched – you’d be forgiven for thinking that there were just two people working the Lion Life show who displayed true courage. The Lion Tamers. But you’d be wrong.

They had nerve, of course they did. And confidence. Those were the two most important personality attributes of a lion tamer. That and a hell of a lot of knowledge and skill, a dash of calmness and a burst of speed at just the right time and place were all you needed to be a lion tamer. Courage wasn’t required. Courage when mixed with adrenaline and adoration (both a staple part of any zookeeper’s daily routine) could sometimes lead to brashness and overconfidence. Accidents and tragedies were the all to frequent outcome when that happened.

When you arrived at the Lion Life show, that was when you met the most courageous staff member. Quiet and shy with a tendency to let her hair fall in front of her face so she could hide behind it. Most people speak to her but few notice her. And fewer still remember her. She was the ticket seller.

Years of ridicule, teasing and even physical attacks had left her depressed and suffering panic attacks. Leaving the house had been impossible for sometime. And then eventually with a lot of patience, love and support she had been able to start going out again. Then a few years after that the idea of a very part time job hadn’t been as scary as when it was first suggested.

She loved her job. She really did. Or at least most of the time. On the face of it, it was an easy job. Getting there, dealing with the public, staying out all day. She found that a struggle. At times it felt insurmountable and she’d go home in tears convinced she couldn’t do it. The next day, somehow, she would be back in her little ticket booth near the lions trying again

Everyday her family told her they were proud of her. Every time it got tough she’d try to remember that. And to remember that courage doesn’t always roar. Sometimes courage is the little voice at the end of the day saying ‘I’ll try again tomorrow’ (Mary Anne Radmacher)

>Knowledge Is Power #fiction #100daysofwriting #amwriting, #character

>Day six of my 100 days of writing and a piece partially written earlier this evening whilst I was setting a new goal in my standing frame (37 mins). I’m back to fiction today. This is very rough and I think it’s much more of a character sketch than anything else.

I’ve called it knowledge is power for no reason other than its better than leaving it untitled. I think I might return to this/these characters in future. I’ve no idea where they came from but they intrigue me.

Knowledge is Power

“You can’t give up hope just because it’s hopeless.”

“what the hell does that mean” Jan asked Abby as they walked past the poster containing that piece of ridiculous wisdom.

They were on the way to the pub quiz which was always an interesting experience. Both the girls really loved going to pub quizzes and tried to go to at least one each week. They’d first met at one in fact. A friendly disagreement with the quiz master over the answer to a particularly ambiguous question had led to them laughing together over a drink. And a friendship which could have been beautiful (but hadn’t turned out to be) had been born.

Posters with similar things on had been appearing all over town for the past month or so. She didn’t know what they meant, why they were appearing or who was putting them up. It was a mystery wrapped in an enigma.

Jan hated mysteries. She really didn’t like not knowing all the details of a thing. If she knew of its existence she wanted to know all about it. That’s not to say Jan was one of those really annoying people who thought they knew everything. She’d readily admit that she didn’t. Because after all there were things in the world that she didn’t know about. Jan couldn’t tell you what they were because she didn’t know they existed. It goes back to her need to know everything about the things she knows, obviously.

Abby, Jan’s friend had to fight the urge to roll her eyes at that comment. She loved her friend, she really did. But she could just see where this was going to end up. And to be honest, it got a little annoying at times. She fully agreed with Jan that you should never stop learning and especially that knowledge is power. However at the same time she also couldn’t see the point in beating yourself up because you didn’t know everything about any given subject. If you need to know something you can learn it at that time. The world isn’t going to end just because you had to hold your hands up and admit to not knowing something. After all, Abby was only human.

Jan’s thirst for knowledge was why she went to the pub quiz. She thought she’d go to one every night if she could. But sadly life got in the way of that little desire. Still, there should be plenty of opportunity for her to do that when she retired.

For Abby going to the pub quiz was fun, plain and simple. A large glass of red, a few crisps to nibble, good friends and a friendly competition. The perfect way to unwind after a very long and stressful day at work. Or at least it used to be like that.