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Wednesday, 2 April 2014

Brown (or White) Envelope Disorder - Living in Fear of the Letterbox

As I write this I am recovering from what we campaigners call ‘Brown Envelope Disorder’ – or ‘White Envelope Disorder’ (since it applies in equal measures now). It is what happens to a disabled or ill [benefit claimant] when a brown or white envelope appears on the doormat, particularly those marked ‘DWP’ –Department for Work and Pensions.
I was upstairs, waiting for my painkillers to kick in, when the letterbox went. For an ‘everyday’ person, it is normality. It is part of life. However, if you are disabled or an ill benefit claimant, living under the constant threat of an ATOS assessment or benefit sanction, [the sound of the letterbox] immediately causes the blood pressure to rise, and panic to kick in.
I sat on the bottom of the stairs, shaking and looked at the brown envelope (marked DWP) on the mat. Even though I know (rationally) that ATOS assessment envelopes are usually white, and that I am not due to be assessed for Personal Independence Payment (PIP) – the government’s replacement for Disability Living Allowance – for at least a year, the effect on me (and so many other ill and disabled people) is a reaction of pure fear. I sat there, unable to move, almost as if I was frozen to the spot. Rationality doesn’t come into it anymore. They play games, change dates, change criteria; so even if you think you know what’s what, (and when), for me (and so many others) the fear is still there. My heart begins to pound so loudly that I can hear it in my ears, and my palms begin to sweat. The rational part of me says ‘pick it up and open it. It’ll be fine’. The vulnerable, anxiety prone, part of me knows it is coming.
If I want to keep my life the way it is, I will have to go through a Disability Assessment for PIP, which is stacked against me. I will have to justify my right to the small amount of support I get. I will have to justify myself, my existence, my attempt at as normal a life as I can. I will have to sit there while someone judges me, and asks me leading, (unfair) questions, that are designed to deprive me of support and the things that able-bodied people take for granted.
I was born with Cerebral Palsy, and cannot walk or stand unaided. I suffer more or less constant pain, anxiety and depression – not to mention a few other things. The anxiety and depression have been made worse by this government and the media’s portrayal of disabled people as ‘scroungers’ and fakers. They have deliberately misled the public on the levels of benefit fraud, and we are paying the price.
I continued to sit on the bottom of the stairs, with all this going through my head. I feel worthless, and I know that I will be stripped of my Disability Living Allowance by the transition to Personal Independence Payment. I know that I am luckier than some. I have my husband (and his Pension Credit) to help us live, but for me it’s about independence. It’s about being able to behave like a ‘normal’ wife.
As things stand, I can help my husband pay the bills, I can take myself to the doctors or hospital appointments, I can go out (when I feel well enough), and see friends. I can feel like a ‘normal’ person. If they take my DLA, they take all that too – and I have spent years fighting to keep self-esteem and independence and to build a life for myself. I can’t lose it!
At this point, I am beginning to hyperventilate. ‘Be rational,’ I try to tell myself – ‘be RATIONAL!’ I fear the assessment itself even more than the consequences of it. Sitting on the stairs, I’m imagining all sorts of things. The assessor’s eyes look at me, and judging me. She looks tidy, she looks together, she tells herself. Yes I am, and I’m so lucky. What isn’t so lucky, is that I can’t sleep due to pain and anxiety….even though I’m so very tired.
I’m tired by life, and I’ve been made even more tired by government lies, and persecution, and the feeling that I have to struggle even more than I do already. Why is this happening to me? Why is this happening to any of us? Haven’t we been through enough? I start to cry. Eventually, mid panic attack, I ring my sister, who tells me to breathe deeply, and reminds me that whatever this government says or does, I am a person…and I am worth something. She tells me that if it is the assessment, I’ll handle it, and that they have no right to make me feel like this…in my own home. I tell her I’ll open the envelope and call her back, which I do.
It turns out, that is just a letter confirming my benefit amount, and my level of claim. I curse myself, knowing that I should have checked with a fellow campaigner before panicking, but like I said rationality doesn’t come into it anymore; and besides, there are so many other people like me (and worse off) that don’t have the campaigners to turn to, and don’t have the information at hand. Who cares about how they feel? This government certainly doesn’t!
As my heavy breathing subsides, I go back upstairs, and I’m physically sick in the toilet bowl. No one should be going through this. It is psychological torture, and I’ve had enough. This government needs to be held to account for its actions. There needs to be a proper impact assessment done on the Welfare Reform policy, because what I went through today is only a small part of it. It is causing pain, suffering, panic, malnutrition, isolation, homelessness, and even suicides. Somebody, somewhere, needs to make it stop… Now!






(Image: Google)
#helenswriting











Thursday, 27 March 2014

Pain Free - A Rarity

For the first time in ages I have woken up without pain. In fact, I can't remember the last time it happened. It is an amazing feeling. I feel like a real person, human again. It doesn't matter that it is cold and cloudy outside. Inside I am warm and alive. 

The best thing is that there is nothing there - absolutely nothing. 

My body seems to be at peace today, and if this is what 'normal' is, I want to keep it. However, I know it won't last so I intend to enjoy every single second of it. I wish I could dance now. It would be lovely to be able to twirl around the room and express how free I feel. 

It may seem silly, but Julie Andrews at the beginning of 'The Sound of Music' has got nothing on the way I feel now. In fact, I think I may sing about it too! Keep your fingers crossed that the cats don't join in! 

I wish Colin was here to share it with me - he would make a very good Captain von Trapp I think. 

No, seriously, it would be good. I feel light and happy. It could have been a "who are you, and what have you done with my wife?" day. Maybe I'll phone him at work and see if he can come home early. We could walk to the field and lie in the grass. Yes, I know it is cold and damp, but it might as well be summer to me. 

I can't explain it any better. When you live with disability and pain everyday, the relief is just so beautiful, and it makes me feel so lucky. I appreciate it more than I can ever tell you. 

Oh, this is so wonderful! I hope I can keep it - just for a little while. 


#helenswriting

Saturday, 22 March 2014

Mind the Gaps - A Fear Overcome. (Written 2006)

'The train now approaching the station is the eight fifteen, Bath Spa to Cardiff Central', the announcer said. 

My mum squeezed my hand as we walked towards the edge of the platform. I wasn't scared of the thunderous noise as the train approached, not with my mum's fingers wrapped reassuringly around my own. 

I wasn't even scared as a crowd of people hurried behind me. "Come on, step up," my mum said as the train came to a halt and its big doors opened. I did as I was told and stretched my little leg to bridge a gap between platform and train. 

Suddenly there was a sharp pain through my knee, a cramping pain that ran right to my toes. I froze. "Mum," I whispered, "Mum". She didn't hear me. "Mum," I said, much louder this time. I couldn't make the gap. My heart was pounding. This time she heard me and to my relief lifted me over and into the warmth of the carriage. I took my place and the sense of relief was so strong. I nearly cried. 

As I sat there, in the safety of the seat, my seven year old mind realised then and there just how different my life was from that of other people's. I remember the moment clearly. The memory of that train, pain, and the 'black gap' would give me nightmares for months and trigger a phobia that would last over fifteen years. 





"Honey, I can't do this," I said weakly. We made our way to the edge of the platform. I trembled as the doors of the 8.53 to London Paddington opened. 

"Don't worry love," Colin said as he stepped on ahead of me and held out his hand. "Just don't look at it." But I knew it was there and took a fleeting glimpse at the black hole between platform and train that was my nightmare. I swallowed hard, put my shaking fingers in his and stepped across. 

Once in my seat the relief washed over me and as my hear rate returned to normal, I thought back to that day so long ago. 
Just like before, I had what you would call an epiphany as I sat there, with my husband's arms wrapped around me. 

It suddenly occurred to me that I wasn't scared any more. I had him and he accepted everything I was, disability and all. More importantly, I had accepted me. No longer a shy seven year old, realising for the first time how hard life would be, I was now twenty-five and married. I had lived, and I had done it the hard way. 

What I'm trying to say, maybe not as articulately as I usually would, is that you can overcome anything. All you need is the guts to take a chance, and the most importantly, the love of someone who believes in you. Even if you don't have that from someone else, you can find it within you. If you have faith in yourself and take things step by step, you can do it. 

While I'm here too, I will tell you, that I'm not afraid of those gaps anymore either, I just put my best foot forward... 



#helenswriting

Sunday, 16 March 2014

Don't Doubt What We Are Capable Of (Poem 2014)



Don’t doubt what we are capable of
We’ll take your lies apart one by one,
Don’t doubt that we can, 
Because we already have done!

Don’t doubt what we are capable of
Because we refuse to cower
Don’t doubt that we can do it
Words will be our power.

Don’t doubt what we are capable of,
Angry campaigners scorned
Don’t doubt that we will do it,
You’ll wish you’d never been born!

Don’t doubt what we are capable of,
Because you live for votes,
Don’t underestimate the strength,
Of a few well placed quotes!

Don’t doubt what we are capable of
We refuse to be ignored,
You think that you can trample
On the disabled and the poor.

Don’t doubt what we are capable of
Because you started this fight,
We’ll be making sure that you fall down
On election night.

Don’t doubt what we are capable of
You have tried to hide the proof,
You know there’s power in numbers
And we are telling the truth!

Don’t doubt what we are capable of,
Because your policies kill,
If even the law can’t make you pay,
The electorate will!

Don’t doubt what we are capable of,
We’re sick of living in fear,
But you will know what that feels like,
Come May next year!

Don’t doubt what we are capable of,
You cause suffering and spread hate,
When it’s our turn at the ballot box,
You will meet your fate.




#helenswriting

Tuesday, 25 February 2014

The Right Way -(Writer's Circle - Fifteen Minute Exercise)

“Not that right, - the right right!” The instructor said, as I turned left. 

“You should hold your hands up...’ my mother would say ...”The one that makes an L....”
But that’s not advisable when your hands are on the steering wheel!

I don’t think writing ‘L’ and ‘R’ on my thumbs was a wise move for my first driving lesson either. The instructor visibly paled as I got into the driver’s seat and he caught me double checking them!
What’s even more worrying is that all these months later, they still need to be there, only now I have to paint my nails too – just to be sure! Black for the left hand and red for the right...or was it the other way ‘round?

You know, it’s funny. All those months ago my instructor didn’t get very thirsty at all during our lessons. Now he carries a small black flask which he drinks from, regularly. Although granted, his swigs are bigger after I’ve done the roundabout in the centre of town.

Lately as I know how thirsty he gets, I’ve started bringing cans of Coke for him. I like to be helpful, and there’s nothing worse than being thirsty is there? When I told him that, he muttered a swear word – or several!

Anyway, I think I’m improving a bit. Now I’ve worked out that if I go in the opposite direction to what he says, then I’ll be going the right way. It seems to work, well, so far anyway!


I wonder if he’s booked my test yet?









Image: Google
            'Family Guy'



#helenswriting

Saturday, 22 February 2014

ATOS Quits - A Reaction

Personally, I don’t know why some people are getting excited that ATOS have given. ATOS is only part of the problem. The whole POLICY needs to stop! The SYSTEM is flawed. Until that happens, I can’t celebrate anything.
It’s funny how, yesterday ATOS itself said the SYSTEM was failing, and yet in all the media coverage I have seen today, they have blamed a hate campaign against staff.
There is NO EVIDENCE to back that up! If there is, then show us!
Also, where were the BBC during the protests this week, when the TRUTH was being told, about the pain, death and suffering this government, and ATOS are responsible for.
Where was OUR media coverage, when the damage ATOS (and the DWP) have done, was being talked about? NOWHERE!
Yet today, the BBC and ATOS are blaming 'death threats,’ and US, YET AGAIN!
In none of the coverage I have seen today, have they even tried to explain WHY disabled and ill people are angry, and the DAMAGE that is being done to our lives!
The BBC claim to be balanced and independent. I don’t think so! To me, they are spouting government propaganda (AGAIN)!
When this whole Welfare Reform policy is scrapped and replaced by something compassionate, fair, and that allows for variations in disability and people, is when I’ll be celebrating!

Wednesday, 5 February 2014

An Afternoon With Karen (A Short Fantasy Piece)



The school hall looks like it has seen better days. The once polished wood of the stage is now caked in dust. My footsteps click loudly on the floor and break the eerie silence that hangs over the place. I walk to one of the windows and peer out of it.

Twilight has descended and the hall is in darkness. I turn around and see her sitting on the edge of the stage like she has always been there. Oddly, I am not afraid as I walk over and perch next to her.

We sit in silence for a while. It is a comfortable one. The kind you get when two old friends meet again. I think of all the hours I have spent singing Carpenters songs, and suddenly everything I've dreamed about asking Karen disappears from my head. I find myself asking simply, "Are you happy?"

She considers me for a second and then smiles. It is not the smile from the album covers or the interviews - this one is real.

"Happier now than I was in life. Things are easier, more peaceful. I feel more real now than I ever did then."

I instinctively reached for her hand. I don't know what made me do it, but humour flashes in her eyes when all I feel is a cold blast of air.

"Bad news I'm afraid. I'm still dead!" For a moment I am mortified but I catch her eye and like a couple of schoolgirls we dissolve into a fit of giggles.

"Oh," I said eventually. "I was going to ask you all sorts of technical questions about increasing volume when you sing, breathing problems and all those boring things but they don't seem to matter that much now".

Suddenly, for the first time that afternoon, I become really aware that I am sharing space with the woman I have idolised and shared unspoken ties with for most of my life. I become tongue-tied and very unnerved. I am sitting in what is now pitch darkness with a ghost.

"What's the matter? After all the hours we've spent singing together, don't tell me you're afraid of me."

"Not afraid exactly," I reply, my voice quieter than usual, as if all the air had been taken out of it. "It's just . . . are you really here, or have I finally lost the plot?"

"I think the jury's still out on that one," she replies, smiling again. "You're the one writing this, you tell me!"

"Well thanks, you're no help!"

As soon as I say it I curse myself. Actually, she doesn't know how much help she's been. From the hours of joy the Carpenters' music has brought to many people, not to mention that her death has saved so many lives.

I look at her again. "Sorry, I just freaked out for a minute there!".

"Understandable. I think I would too". She stands up and dusts down her flares. "Listen, I need to go."

"Oh, OK," I reply, feeling more than a little sad but I hide it well. "Don't tell me, you have a date with Elvis." She looks at me, her eyes sparkling with laughter.

"Oh, no. I turned him down. This one's much more fun... "she whispered conspiratorially, "James Dean!"

I giggle. I have always hoped that in death, she has found peace somewhere. The idea of the 'good girl' and the young rebel was wonderful.

And as she turns to walk away towards the back of the stage I call her back. "Karen..." She turns, "...Thanks".

"No problem," she answers quietly. "Thank you for singing with me."

With that, she walks to the back of the stage and disappeared into the shadows.






Image: Google


This piece was written as a writing exercise - 'Meeting Your Idol,' I think it was, (or something similar). Written in 2011 


#helenswriting