Showing posts with label Emma. Show all posts
Showing posts with label Emma. Show all posts

Wednesday, 23 February 2011

More Press for One Month Before Heartbreak

I have an article in this months Disability Now!

It's called Triumph Over Cuts Tragedy and it's about the One Month Before Heartbreak campaign.  Mostly about the sense of friendship and community we managed to build.  To me that's probably more important that what we did fighting the cuts.

Please comment and let me know what you think of it - I love getting feedback and it's all really useful.

Finally, I'd just like to take this opportunity one more time to send huge huge thanks to everyone who took time to write, tweet, video, comment, facebook and so many other things as a part of One Month Before Heartbreak.  It might have been my idea but you are all part of the reason why it was so successful!

Monday, 24 January 2011

You know you've got CP when...

Looking at a packet of medication and realising that you are potentially two tablets away from finishing a long term course of medication is very exciting.

(This entry is otherwise known as Emma's CP: It's not all about the wheelchair.)

I've been taking Terbinafine since September and I have an appt with my GP tomorrow morning to discuss whether it's too soon to take me off it or not.  All week I've been counting down and suddenly today I'm like "hmmm maybe she won't take me off it yet."

Basically due to a combination of Onychomycosis (fungal infection) and CP I pretty much had no toenails in September.  I hadn't had proper ones for years. I can't cut them myself and no one could cut them for me due to the infection.  I kept catching them and ripping them off by accident meaning they got infected.  One of my parents would have to come round and help me clean them properly and apply plasters and antiseptic etc.  Sometimes blood would drip all over the floor when I wheeled to grab a towel or something and then to my bed so I could transfer and do the best to wrap it up until someone got her to do it properly.  That would need to be cleaned up by whoever came.

I couldn't use the normal topical treatments because they require daily application and I couldn't reach to do it myself.  I'd spoken to my GP a while ago and she gave me something which cleared it up but only the skin around my nails, not my nails.  It wasn't the optimal treatment because of my CP. It was a spray (which actually said on there it wasn't for nails but she said it was worth a shot).  

In August I went back, this time to a locum.  This was at least a year later and my feet had gotten worse in the meantime.  He took one look at my feet and declared all of my toenails to be completely destroyed.  He took a sample (with great difficulty) and sent it off for testing.  Apparently it was an extreme case but he needed the tests to prove that.  I was given oral terbinafine and I've been taking it daily since September.

Terbinafine is a really strong drug and can cause liver problems.  It's not been tested for really long term use I believe.  I've been worried about taking it and would have preferred one of the lesser treatments but because of my CP it just couldn't be done.  I have had liver function tests done part way through the course and they're fine.

And now I'm hopefully coming off of it tomorrow. If not now then in another month or two I'm sure.  But most of all. I have toenails again.  They aren't right but they are a lot healthier than they were.  And I've only ripped them off two or three times since September.  Considering I was doing that probably once a fortnight and occasionally once a week that's huge.

Monday, 17 January 2011

One Month Before Heartbreak Will Continue!

When this posts it will be 7 am Monday.  As the first One Month Before Heartbreak post when live on this blog at 7 am Friday, this post marks 72 hours of non stop posting, every 30 minutes.

I am completely and utterly blown away by the response we've had to the campaign and how big it's gotten.  I couldn't have done it without every single one of the people who have been involved.  Thank you doesn't seem like it's enough.

We do have some more submissions which will be posted later.  And we don't plan to stop accepting them so please keep sending them to us.  That can be done via this e-mail

The pace will slow down because it has too.  As I've said before I have a disabled and so do all of my back up team.  We've all pushed ourselves this weekend because we believe in this.  But now we are all exhausted and need to rest and recover.

In the meantime if you want to help why not e-mail your MP about us?

We have a petition on DLA you can sign

If you want to make a submission to the consultation on DLA, you can do so here

In the coming days I hope to write a thank you post and round up in greater detail.  For now can I just say a heartfelt thank you once again and assure you that One Month Before Heartbreak does not end here.

Emma Crees

Sunday, 16 January 2011

Unreasonable Adjustments

This is a short story I wrote last summer.  It is fiction but  as most wheelchair users could tell you it's got a lot of truth in it.



“You have the run of my home”  said Lady Howlett ending her welcoming speech and sweeping gracefully from the room.

The run of this house? If only.  Claire thought.

The idea of spending a night in a haunted house and winning £1,000,000 for doing so had seemed a great one.  An easy way to make a lot of money and probably have a laugh as she did so. The night had barely begun and already it seemed there was a problem.
They’d known when she applied that she was a wheelchair user.  She’d been assured that there was access.  Even when she’d asked pointed questions about ramps and whether she’d be able to get her wheelchair into the disabled loo, they’d stuck to their vow that they could accommodate her. 
All she needed to worry about, they told her, was whether she really could spend the night in a certified haunted house.  The fact that they made such a big deal of it being “certified” had amused her.  How did they get it certified?  Claire didn’t believe in ghosts and she’d hoped to prove they didn’t exist.  The people who certified it as haunted weren’t trustworthy.  It wasn’t as if the council had rules and regulations (no less than two sightings a week, for a year) and an official haunted house inspector who had to sign off on these things.  She'd thought it would be easy.
Claire hadn’t been surprised that the access wasn’t exactly as she expected.  It rarely was. However, this was something she hadn’t encountered before – surprising given she’d been in the chair for 42 years and thought she’d seen it all.
The gravel entrance hadn’t phased her, nor had the steps.  Ramped access is often around the back, by the bins, or otherwise out of sight.  So she’d waited. 
Angelo had returned about half an hour later and with the help of another silently hulking man had carried her up the steps into the house.  She’d protested that a lot as there’s nothing worse then being in somewhere you can’t get out of and knowing you’re trapped.  Her words had been ignored and she’d been taken against her will into the house.
There she was, apparently, she had the run of the house, but in truth, she probably didn’t.  It looked as though she wouldn’t be able to get out of the room she was in without help.  Everyone else in the room was milling around looking at the windows and heading towards the door.  They were all ignoring everyone else as well.  This was going to be a long evening.  A boring evening it seemed. Just one hour later Claire realised just how wrong she’d been.

****

First, she’d decided to have a good look around the room they were in.  It was a big room with lots of art on the walls so that took a good 15 minutes.  She was one of two people left in the room at that time – the other person was steadfastly ignoring her so she simply did the same.  That was unlike her; she was an extrovert and found it very hard to shut up.  Something told her however that this wasn’t the place to go making friends and being nice, it wouldn’t go down very well with the other contestants.  Getting out of that room proved easier than she expected.  The step she thought she’d seen turned out to be nothing.  Strange, but she accepted it.  It wouldn’t be until later that she realised just how strange that was.
Then Claire had figured that seeing as she was going to be there all night she’d go find out where the loo is.  It’s always worth doing these things ahead of time.  Particularly when you need a disabled loo – don’t want to be discovering that it’s locked and no one knows where the key is when you’re absolutely bursting for a wee. 
She didn’t expect that this was the sort of place where it would people would be having sex in it if it wasn’t locked (why was that, was there some sort of weird places to have sex scorecard doing the rounds? 50 points for a disabled loo!) but you never know.
That was the first sign that the steps weren’t the only problem she was to face that day.  She never found the loo. 
She spent thirty minutes looking for it.  To be fair, it wouldn’t have taken that long to search all the places she did but she kept getting distracted.  Firstly, by all the art and other things she spotted. Lady Howlett had some really unusual – and unexpected – items in her home.  And secondly by a really strange feeling.  It was creepy – a cold sort of tickly sensation crawling up her back and making her hair stand on end.  She shook it off – she had to, she didn’t believe in ghosts!  There would be an explanation she knew, she just needed to find it.  But first to find the loo.
At the end of the thirty minutes, she came across Angelo standing silently at attention in the hall.  Claire wasn’t sure why he was stood in that particular spot in front of a blank piece of wall (she was later to realise, the only blank piece of wall she saw in the entire house).  Wandering over she spoke to him

“Hi Angelo.  It is Angelo, isn’t it?”  He didn’t answer, didn’t even blink.  Unnerved she continued “Um, well, anyway.  I was wondering if you could tell me where the disabled loo is?  I’ve been looking for a while and I’ve been everywhere I can see.  But I can’t find it.”

Angelo shrugged as though he didn’t care.  It was a strange sight and it infuriated Claire.

“Maybe you could go find out where it is if you don’t know?” she asked, she’d experienced this lack of knowledge from staff members before – too many times to count.  “Only I know there is one because I asked before I came.  The person I spoke to told me there was one and I’d be fine.”

Angelo stared at her for a full minute.  Just when Claire was beginning to think this was useless he suddenly moved his left arm and pointed.  He didn’t say a word and after waiting briefly to see if there was more to come Claire simply turned and started going in the direction he pointed. 
She was very confused and more than a little angry not least because he had pointed back the way she came where there definitely wasn’t a disabled loo.  It seemed she had no choice but to do that. 
A few minutes later she was beginning to calm down and she suddenly realised that she’d come further than she had before.  In fact there hadn’t been enough building to go this far before.
Claire didn’t believe in ghosts.  She really didn’t.  But she was beginning to get a little bit freaked out by all of this.
Suddenly a little bit ahead she spotted that familiar sign that signifies disabled parking and disabled loos worldwide.  The little guy in the wheelchair with his arms out in front like a zombie.  She was pleased she’d started looking for the loo when she had because now she really was heading towards the desperate stage of things.
Opening the door, Claire couldn’t see any of the usual items you’d expect in a disabled loo. No bins or grab rails.  And, no loo.  She figured that maybe it was a bit further on so she went in.  The door slammed behind her ominously. 
Wheeling back and then back further Claire was astounded by how far she’d come.  She’d been able to see that this was a big room but hadn’t expected something as big as this.
All of a sudden, Claire felt a weird buzzing sensation surround her.  Her vision went fuzzy with lines all across it.  That lasted about two, three minutes (although it felt a lot longer).  Her ears will filled with a loud ringing sound something like church bells.  The result was that Claire was very disorientated.  As quickly as it had started, the sensation finished.  Claire shook her head to clear the residual feeling.  And realised that somehow, unexpectedly, she was back outside the house on the gravel driveway where this had all started.
Screw scared of the ghosts, Claire was scared by what had just happened.  And more than a little pissed off.  She shouted and shouted for help, shouting herself hoarse in the process.  But no one came.
Claire waited all night.  It wasn’t until just after dawn that anyone came.  Angelo turned up at that point along with his hulking companion.  They carried her, protesting, back up the steps into the house and deposited her in front of Lady Howlett.

“Well, Claire, yet another failure to spend the night in my house.  I am disappointed.  No million for you.”
She explained to Lady Howlett that this wasn’t fair, she hadn’t wanted to leave the house, she’d just wanted to go for a wee.  
Lady Howlett made no response to Claire.  She just turned to the two men waiting and said

“Get this waste of space out of my sight.”

They picked her up and carried her from the room once more.

****

Lady Howlett had expected that to be the last she heard from Claire.  After all, she’d never had anybody come back at her for failing to win the million before.  She’d also never had a mouthy, independent wheelchair user as one of her contestants before.
Claire, however, believed in complaining.  Spending most of her life in a wheelchair had taught her that you often were treated badly for being different and that you were just expected to “put up and shut up.”  The way she’d been treated by Lady Howlett and her staff was appalling.  If she didn’t do something about it, some other wheelchair user was going to have the same horrific experience at some point in the future.
First, she’d tried writing a letter, and then a second when the first was ignored.  Unfortunately, that didn’t get a reply either.  Unfortunately for Lady Howlett, that is.
Claire’s next step had been to speak to the Equality and Human Rights Commission.  They’d been shocked to here of what had happened and had helped her to put in a case for disability discrimination.
Seven months after that, the case came to court.  Neither Lady Howlett nor Angelo appeared to dispute the charges.  That resulted in Claire automatically winning her case, which the tribunal described as “one of the worst cases of disability discrimination in years”
Claire learned that it really is worth making a stand when you need to.  She won £2.1 Million pounds for the discrimination and because she lost the chance to win the original £1 Million prize. 
As for Lady Howlett?  She never held another of her “Haunted House Nights” nor was she ever heard from again.  Claire liked to think that was because she’d learned the lesson of treating people with respect, and that you should, always, always make reasonable adjustments to accommodate people who are disabled.  Truthfully, however, she’ll never know.

I Love To Laugh

I make jokes about being disabled, and specifically about myself and my disability. It’s just what I do. I refuse to see being disabled as a bad thing and somethings just are funny. Other times it’s a case of if I didn’t laugh I’d cry and laughing is definitely more fun. People don’t always know how to react to the jokes, disability being such a serious and horrible thing that they don’t know if it’s ok for them to laugh. Or perhaps they just don’t expect it.

I’ve frequently made jokes about my chair. I’ve convinced people that I’m not disabled just lazy. And once that a miracle had occurred because I stood up. When I last had a blood test the nurse commented that my veins were moving. I said “well, at least part of me is.” I thought that was hilarious, she didn’t even smile.
I’m not the only person who jokes about their disability. I know a couple of others who do. I also know a few people who can’t or don’t joke about it. I respect that but for me I need to laugh. I’ve even got a few able-bodied friends who now make crip jokes to me. Usually with the comment “I know I can say this to you…”
I want to share a moment from this evening. I’m really hoping it isn’t one of those “you had to be there moments”. I was really amused by it anyway.

I take a creative writing class. It started again this evening for the new term so we had a few people who’ve been before and several new members. We were just getting started and the tutor made a comment that he thought we had everyone or at least he hoped so because we didn’t have enough chairs for anyone else.
Me being me I just sat there and cracked “maybe if someone else comes they’ll be as organised as I was and bring their own chair.”

And just as I said it the door opened and another wheelchair user came in.

That, my friends, is why I make crip jokes. Because once in a while something happens that just makes it even funnier. I can cope with my life and my disability? But a world or even a life without laughter? I couldn’t cope with that


Emma Crees (this is a guest blog that first appeared on DisCo)

Saturday, 15 January 2011

Emma's Story

Many of you know that I'm the one who had the idea for One Month Before Heartbreak.  You know my name is Emma Crees, maybe that I'm FunkyFairy22 on twitter and perhaps even that my blog is A Writer In A Wheelchair.  But a lot of you don't know very much about me.  I've not had time to read many of the contributions.  I will have to take several hours once this event is over to read them.  Spread over several days most likely.

I'm crazy busy with all this but loving it.  I've not had time for writing yet couldn't sit by and let so many of you share such personal stories without sharing something more about who I am and my own story.  Some of you may have seen this before as it has been on The Broken of Britain blog as well.

Emma's Story.


I’m a single woman in my late twenties who lives alone and dreams of being a writer. I have ten GCSEs most of which I got B grades for. I have three A’Levels and a degree. And I’ve never worked.

I have Cerebral Palsy (CP). That means I’m life long disabled and in my case I use a wheelchair most of the time. In 2003, I was also diagnosed with depression and I’ve spent most of the seven years since then on anti-depressants.

My income is Disability Living Allowance (DLA) and Incapacity Benefit (IB). It’s not always easy.

When I was 16 my DLA was transferred from being paid to my Mum to being paid to me. I was asked where I wanted it paid and I named a specific post office. They arranged for it to be paid into a different post office to the one I asked for. Because the one they chose was my closest one (and presumably because it was where my Mum had it paid for years). Never mind that it was a tiny village post office with no wheelchair access!

When I went to Uni I wasn’t eligible for some means tested benefits I could otherwise have applied for – because I had the right to apply for a student loan. Even if I didn’t take it I couldn’t have the benefits. I took out the loan and now have a lot of student debt. I’ve been told that if I ever work it will only be part time. And based on my fatigue levels doing a few hours a week of voluntary works I agree with those who said that. Realistically (and I do hate to say this) I will never pay it back or even reach the earnings threshold where you must start repayments. Yet, every year the Student Loans Company sends me a statement. It’s a continuing waste of money. I try not to think about my student loans if I can help it. There’s no point. I’m not in a position to do anything.

Once, I was asked to provide a sick note long before the previous one was due to expire. I phoned and queried why and was told it was standard procedure to check if I’d got better. I replied that I have an incurable condition. The person from the benefits office told me “Well, you still might have got better.” Very upsetting! But at the time I had a wonderful GP who was also disabled. It really helped me to deal with someone who “got” being disabled. His response was very verbal and I can’t print it but basically he had a suggestion for where they should be told to go.

Benefits being stopped because of DWP mistakes has happened to me a few times. Once they couldn’t even tell me why it had been stopped, just that it shouldn’t have been.

My condition means I will always qualify for middle rate care and higher rate mobility on DLA. It won’t ever improve so I’ll never be able enough for lower rate care. And I don’t anticipate my condition deteriorating to an extent I need higher rate care. To get IB or ESA you need 15 points on the WCA. I once worked out my score on the scale they use. I got 15 points on the very first question alone. And overall I got enough points for more than three people to claim IB. Yet sometime in the next few years I face being reassessed and moved to ESA. This worries me a lot. I think it’s probably an expensive, stressful and pointless waste of time for someone in my position. And then a few years after that a move onto Universal Credit. Another worrying and expensive waste of time most likely. The government think differently. So in an attempt to save money they cause stress, worry and fear, making people’s conditions worse and possibly even ruining lives

I belong to a Sailability group. One of our boats is called Spirit of Ivan. We were given it shortly after Ivan Cameron died and it was so named in his memory (with the permission of the Cameron Family). The committee wanted to call it that to honour him as “a little boy who will never sail her.” It’s not quite as weird as it sounds, although the Camerons have never been part of our group, we are the closest Sailability to Witney where David Cameron’s constituency is. By naming our boat for him we were also showing our support for his family. For the loss of one of us.

Now David Cameron is Prime Minister. I thought he understood what disability and being disabled meant. But he and his party won’t stand up for us. I am proud to share my story and be a part of The Broken of Britain. If no one will stand up for us, we’ll stand up for ourselves (even if several of us can’t actually stand!).

Emma Crees

One Month Before Heartbreak: You Can Speak Up For Disabled People Too

by Emma Crees, author of the Writer in a Wheelchair blog
Since the cuts were announced I keep seeing variations on "I support those protesting, I'd be there with them if my disability allowed me too." posted online.  On The Broken of Britain, I've read many personal stories about what it's like to be disabled, to rely on benefits and services.  These are barely enough in many areas and likely to be further reduced if these cuts go ahead. 

It was becoming very clear to me that there were many disabled people out there who wanted to protest but couldn't and who were willing to speak out.  Putting the two together seemed like a great idea and so One Month Before Heartbreak was born.  It's taking place a month before the consultation on DLA ends on Valentine's Day.  The possibility exists a day traditionally dedicated to love could turn into one of hurt for disabled people.

heartbreak badge.jpgA noisy swarm

It's a blogswarm in protest about the planned cuts.  People plan to come together on 14th, 15th and 16th of January to make as much noise as possible in the hope we'll be heard and something positive will happen.  There is also a petition people can sign

Yesterday a friend called me.  She had tickets for something but couldn't go, I couldn't use them because I don't drive and couldn't find wheelchair accessible public transport to the venue.  If the coalition believes equipment can completely remove disabilities making DLA unnecessary (the suggestion being that the DLA replacement will take equipment use into account), I'd invite them to get a wheelchair and try the journey I couldn't.

Knocking on social services' door

My care was withdrawn due to rationing in my area.  DLA pays for some of the things that used to be in my care package and for other things that allow me to manage without it (although it can be a struggle).  If I didn't have that money, I wouldn't cope and I'd soon by back knocking on social services' door asking for help.

So how can those in the community care sector help us?  Speak up.  Make sure the government knows how much harder your job will be post-cuts and that it isn't just disabled people who will suffer.  Work with us to campaign and if changes must be made to make them as realistic and easy as possible.  Recognise that in some cases we are scared and doing the best we can.  When I was told that my care was being withdrawn I cried.  The response was a dismissive "do you want to be 50 and still having carers?!"  (I have an incurable disability and was in my mid 20s).  I felt my thoughts and feelings didn't matter.  They needed to save money no matter what.

I'll be blogging as a part of One Month Before Heartbreak and doing all I can to help protect disability rights.  I'd encourage everyone to do what they can as well.  We can only succeed if we work together.

Originally posted here

Just Trying

I wrote this poem back in 2005 and thought it would be worth fishing out and sharing here.


I'm just trying
To be me
So much more than
The girl they see

I might have this thing
They call CP
But that isn't
What defines me.

I am different from you
But I think I have it best
I need a wheelchair and always will.

Now I am different
But eventually
You will be
The same as me.

Thanks to the great equaliser called life
One day you too will experience this kind of strife

When you are old
You will understand what you've been told

But for now
I will try and explain it somehow.
Yet it is difficult to show
That which I innately know.

I have to spend
My life of wheels
My CP will never end.

I can live with it
Or long to be without it
The choice is mine
To be made with help divine.

When I was a child
I wanted to die
Life with CP
Seemed too much for me.

Time heals
What was once a punishment
Isn’t any longer
Instead it makes me stronger.

If when you get old
Your health time steals
And you must spend your life on wheels.
Remember what you have been told.

Hold your head up high
It will become normal as time flies by
As you learn how to cope
Don't lose hope.

I'm just trying to be me.
Can't you see?
Being me
Happens to include
This thing called CP.

Not The Nine O'Clock News - A Video Reminder

As I'm writing this it's almost 10pm on Friday 14th (although this won't post until 7.30 am Saturday as I thought it a good "kick off" for the morning).  It's been tiring setting this up and running it.  In fact it's taken more energy than I anticipated.  It's also been much bigger and better than I thought it could be.  Someone just pointed this video out to me and I wanted to share it.  I think it's funny and I hope that others will too.

But as well as being funny it's also an apt reminder of why we're doing this.  I hope it will reenergise people for the next couple of days to keep the momentum going.

Thank you so much for all of your help.



Friday, 14 January 2011

This is Disability


This is an image I made several years ago in an attempt to show that I'm so much more than just a "disabled person."  It has various small photos of me doing different things all round the ages.  Then it has words next to them describing who I am.  Including (not an exhaustive list of what's on the image) sister, passionate, graduate, procrastinator and colourful. Others of the words are things I like.  For example writing, reading, swimming and sailing.  In the middle is a big blue box which has This is Disability written on it with the ability written in all caps.  Below that it has the following quote from Harry Potter and The Chamber of Secrets:

"It is our choices that define us, not our abilities." Albus Dumbledore.