>You Know You’ve Got CP When…

>Someone shows you a new disabled changing room and you get really excited and describe it as amazing.
The start of sailing supper was last night. Sailing itself starts on 10th April. And yesterday was a chance to socialise, catch up and just generally be together after the long winter break. It was a lot of fun and it was nice after a horrible week to be with friends I’ve not seen for months.
I popped to the loo before we left. And when I came out my Dad was talking to one of the volunteers. He called for me to come and see. I wheeled over to a new bit of the building. Part that hadn’t been there before. I hadn’t known they were doing building work over the winter but when I saw it I figured it was teaching rooms or similar.
I imagine part of it probably is. But the bit they wanted me to see was an amazing disabled changing room.
It was probably the best set up I’ve seen in a place that isn’t all crip, all the time. And even better than a lot of those.
It was huge. As big as my lounge if not bigger.
It had a loo with a track hoist over it. An adapted shower. A bed. An area to sit with a hair dryer at the right level and hooks at the right place. Loads of grab rails. An alarm cord (I forget if it’s in the right place or not).
Masses of space in between for turning and people to help if needed. A swing door so you can get in and out easily.
And it has a mirror.
A nice, big, well placed mirror.
So many disabled toilets and changing rooms don’t have mirrors. Or they do but at standing height. And I even know of one that has the mirror much too low!
It’s a small thing. But it’s also a big thing
Because not only was that new changing room designed by someone who has thought things through and done a good job.
It was done by someone who knows that crips like to check their hair when they pop to the loo just like non disabled people do.
Mirror, mirror
On the wall
Whose the fairest
Of them all?
Ok, it’s not me
But I’m happy
I can look and see
Unusual
For this wheelie
With CP
A mirror is small
Most people
Give them no
Thought at all
In a disabled loo
It’s something new
It feels like going the
Extra mile
And it’s made me smile
That they thought
A mirror
(in the right place)
Was worthwhile
That I’d like
To see my face.
♥ Emma

>Missing: One Smile

>I’ve lost
My smile

Last seen
On Tuesday
Sitting in
The sunshine
Eating a picnic
Of sorts.

But then
Without warning
A painful blow
Struck
Trust was
Broken
And
My smile
Went missing

It’s not behind
The sofa
Hiding in
The kitchen
Or lurking under
My bed
I checked.

I was definitely
At home
The last time
I saw it
And my parents
Double checked
My bins.

My smile is
Gone
We just can’t
Find it
Unsurprising
Given the
Mood I’m in

It’s weird without
My smile
Horrid that
I can’t even grin
I wouldn’t
Know
Where to
Begin

And as for a smirk
I imagine that’s
On the face
Of the smile thief
Because it isn’t
On mine
It’s just too much
Work.

There are
Glimmers
Of hope
Snippets
Of good news
Bring a fleeting
Return
But my smile is
Scared
Needs more
Than I’ve got
To return
For good

My smile
Is missing
If found,
Please return
To me

♥ Emma

>How Dare You #100daysofwriting #disability

>You ask me
How I dare
Do what I do?

Be it
Live alone
Go out
Volunteer
Swim
Knit
Survive
Thrive

You tell
Me
You couldn’t
Do it.
You wouldn’t
Dare.

So it seems
I’m brave
For going
To the supermarket
The library
And even
The post office
But especially
For laughing
Living
And loving

The truth is
I
Have
one choice
Do it
Or not
And if
I
Don’t
No one will
Do it for me

But it
Takes
Friendship
Support
Understanding
Help
And trust

For me
To do
What I do
Be independent
Successful
Outgoing
And
All I am
It takes a village

And so I want to know
How YOU dare
Take advantage
Of me
Destroy
My trust
Hurt me
Make me
Feel crap
And
Really
Pissed off

You’ve always
Said I’m brave
Incredibly Strong
Inspirational
And so many
Other things

I dare do things
You wouldn’t
Because I
Have no choice

But I’m not
Brave enough
To say this
To your
Face
How dare you?
How dare you?
How dare you
Do what you did?

I might be
Strong
(although I’m
Not always
Sure that’s so)
But not
Incredibly so
As you make out

The truth is
You’re a
coward
Because only a
Coward
Would do
What you did
I hope it
Haunts you
A secret
Of which
You’ll
Never be
Rid

♥ Emma

>This Character #100daysofwriting

>A character sketch. Shorter than I intended and missing a couple of bits I’d thought of writing. But as often happens my writing took on a life of its own and went where it wanted to. I consider this a very good thing!

This character is a strong one. They’ve got a lot to say and usually they aren’t afraid to say so. At the same time there’s a lot of things they’d like to say but keep quiet. Hiding those thoughts and feelings deep inside for fear of people not understanding what they mean, of potential ridicule and worst of all of pity.

Not many people know this character very well. In part that’s because life’s been tough on them and left them different. Differences that people can see and that mean assumptions are made about who the character is by people who then write them off without a first thought, let alone a second.

They’ve been left with more differences than the visible. Those hidden differences are the worst. They mean that this character doesn’t trust easily, never really believes people want to be their friend. That they get scared and push people away much too often. They know how their real friends are though. Real friends are the ones who push back. Who end up wrestling on the floor with the character in a long, sweaty match which ends with both exhausted but clear on who the winner is. Or rather what the winner is. Because in those wrestling matches? Friendship comes out the winner. Always. Exactly as it should

♥ Emma

>Kick in the teeth

>Not my usual positive self today. Lots going on, plenty of positive and fun things but also several kicks in the teeth lately.

A very bad fall at the weekend (literally the second worst I’ve ever had) means I have a really badly bruised and sore arm, knees and other bits. I’ve no idea how I didn’t break something. Access issues that were totally unexpected but could have been avoided with thought on others part forced cancelled plans. And a few small niggles.

Apparently
There’s a sign
On my back
That says
Come to me
Kick me
I’m the target
For all
Disability related
Crap

Or so it seems
I’d be on my knees
But I can’t do that
Physically
I am in my dreams
But that’s not
What everyone
Sees

I’ve often
Talked about the good
And sometimes the bad
Maybe not as often as I should
I’ve tried
To see the best
Whenever I could
Look inside
Look beyond
Try to see
If this is one
Of the times I’ve lied
And to see that which
I sometimes hide.

♥ Emma

>An unusual sight #dohmonday #withtheband #100daysofwriting

>
Today was better than I expected and I had the opportunity to take time out in the middle of my busy day. I read in the sunshine for just under an hour and finished reading my book then took a shower before continuing my day.

Time to just be, it was perfect. That’s what I wanted from my disconnected day at the weekend but it didn’t happen. Disconnecting did but life kicked me in the teeth so there was angst and little chilling

Plus, I had my last counselling session.

They were both doses of happy for me today.

And now, a poem

Dark sky
Bright lights
Cars stream past
Keep going fast
Life never stops
Even when the sun drops

The pull of life
Can cause strife
Always needed to be there
No time for self care
Until one night
There came an unusual sight

People were few
As though they knew
It would be best
To rest
And lay their sleepy heads
On their beds

♥ Emma

>Over It

>I’ve had shed loads of crap happen this weekend. Pretty much all disability related too. And although I have managed to resurrect some of the weekend my plans for Friday night and yesterday were completely derailed in separate incidents. Add in a major case of can’t be arsed about something I have to do tomorrow and it’s fair to say my mood isn’t great.

Over It

Over it.
I’m over it
Definitely
I’m not
beside it
Behind it
Underneath it
On top of it
In front of it
On its left
Or on its right.
I’m just
Over it.
Had enough
Done with it
Can’t be bothered
Tomorrow isn’t
Even here yet
But it can
Happen
without me
I’m over
Everything that’s planned
If you’re supposed
To see me
Tomorrow
You’ll have to
Pretend
Because I’m
Over it
And as such
I think
I’ll sleep
Until Tuesday
Or perhaps
Longer.
I might be
Over Tuesday
Too
Who knows?

♥ Emma

>Things That I’ve Been Reading #fridayreads #amreading

>I hardly read anything in February so didn’t write one of these. Here’s what I’ve been reading (other than book review books) since January.

The Pearl by John Steinbeck

This is a very quick book I picked up in the Library. Beautifully written as all Steinbeck’s books are it really makes you think about greed, about life in earlier times and what matters. I read it in one sitting ( it’s about 90 pages) and really enjoyed it. One from the 1001 books list.

Other than the one book I reviewed, a few pages of The Swimming Pool Library (couldn’t get into it) and a bunch of short stories that’s all I read in February. I did start listening to the audiobook of The Graduate but kept falling asleep during it so gave up.

Beloved by Toni Morrison

This is another library book and one of the 1001 books. The first I’ve read by Toni Morrison. I absolutely loved it. It really reminded me of The Colour Purple both in plot and in style / feel. I’ve since picked up another of hers from the library and think she’ll be a new favourite. One bit part character is referred to as Hi Man. Which I kept reading as He Man, child of the eighties that I am.

Confessions of a Karaoke Queen by Ella Kingsley

I won this in a competition. Silly, fluffy, a little unrealistic but very fun chick lit. Well written and enjoyable. The chapters all have song titles and I enjoyed seeing which I remembered or recognised.

Lone Wolf by Jodi Picoult

Having gone off of Jodi Picoult books a bit (feeling they’d got a bit same-y) I was going to wait for the paperback. But I got it in such a good offer there was no point waiting. I thought she was back on form here and it kept me gripped throughout. There were a few bits that I thought were stupid and one that would never happen that was in there for drama. That annoyed me as it could have been done differently without affecting the plot as a whole.

The Peach Keeper by Sarah Addison Allen

A friend lent me this authors first two books after I said I like Joanne Harris books. These are certainly very similar in feel to Blackberry Wine/ Chocolat etc. I’ve since had her next two out the library. Another I read very quickly in two days (and two sittings). It’s just so well written and lovely and feel good that although I kept meaning to stop and do washing etc I never did! I highly recommend The Peach Keeper as I think it’s the best of her four novels but they are all very good.

♥ Emma

>Snotty Letter #disability #100daysofwriting

>It’s time
For a
Snotty Letter

It’s time
To show
Why I’ve
Got my
Rep

People say
I’ve a
BAD ATTITUDE

Or that
They never
Met a
More ungrateful
Little Madam

The fact
Is I’ve
Got rights

Unthinking changes
Allegedly to
Help staff
Ruined my
Day out

So it’s
Snotty Letter
Time again

The staff
Were great
They hate
The change
As well

I had
To laugh
At that

I said
This thing
Is shit
They said
We know!!!

Impossible problems
No solution
No excuses

I’ll be
Polite yet
Very firm
Insisted on
Advertised access

Bite my
Tongue and
Think first

It was
Very disappointing
Needed better
Planning and
User consultation

Snotty annoyed
And not
Snotty screaming

What the
Fuck were
You thinking?
Fucking ridiculous
And unnecessary

My friends
Helped rescue
My day
Park picnics
Cafe drinks

But that
Won’t make
Snotty Letter

If asking
For my
Rights means
People don’t
Like me

That’s fine
I’ve never
Been afraid

Secretly I
Hate it
If I
Weren’t disabled
They’d listen

Crips stereotypes
Cause offence
To all

I ask
To be
Treated the
Same as
Other people

I’m good
At advocacy
Being heard

But really
I just
Want to
Visit Swindon
Not Oxford

I hope
Someday disability
Won’t be
A reason
To think

It’s time
For a snotty
Letter

But sadly
And stressfully
That day
Is not
Today

>The National Day of Unplugging #unplug #100daysofwriting

>
I’ve just discovered that The National Day of Unplugging is from sundown tonight to sundown tomorrow.

I always used to take periodic time away from my computer and the net. a day or two. For a whole year I did it at least once a month. But I haven’t gone an entire day since I got my iPad in July last year. Maybe even longer. And by coincidence I’d been thinking that I really need a day off from it all. I’d thought that I’d take tomorrow, but I said the same thing about last Saturday and a day a few weeks ago and never managed it either day.

So I’m declaring here and now: It’s the National Day of Unplugging from sunset. And I’m in.

Disconnect

Day of being out there, real not virtual
Idyllic time to be away from the screen rest, inspire, create
Screens free me but also suffocate with pressure
Controlling access stops it controlling me
On everyday, on all the time, only not this day
Never gone for more than hours fearing missing out
Need to say not today, need to be without
Eager to disconnect, will I be as eager to reconnect?
Creative, content, cleansed, chilled are all things I hope it will be
Tonight, for twenty four hours my computer screens go black and blank

♥ Emma