Tuesday, 10 December 2013

It's Time To End Disability Hierarchies - We're All In This Together

Luckily I know that periods of writer’s block get more frequent as you get older. Until the last year or so, I hardly had any, and if I did, they were very short. It’s just a pain that the last year or so is when I’ve most needed to do it!
If I’m honest, (especially in the last year), you could put a bunch of facts in front of me, and I could do something with them, but I know the standard wouldn’t be good enough for ME, so I’ve shied away from it. That in itself, frightens me in a way.
I think it’s partly the depression, partly lack of energy which all ties in. It’s the fact that campaigning in other ways takes up a lot of time. Writing is now more of a side issue than it has ever been before. I don’t like it, but that’s the way it’s been.
Then there’s my health. Someone says to me, ‘Helen, write about this’ – and my body or my mind says, ‘you’re having a laugh, aren’t you?!’
No matter how much I want to, I can’t argue with a body or mind that says no. I did it for long enough. As a result some of my commitments were scaled back, writing wise, but that’s the way it has to be.
In some ways it’s good though because it’s meant I have had to find other ways of doing what I need to do, which I guess is where ‘Radical Spirit Radio‘ comes in. There are ways and means – always. If you can’t get something to work one way, then you find another way.
It’s one of the most important things having a disability or illness teaches you, because it’s a battle every day, whether you’ve been disabled for life or for six months, it doesn’t make any difference. You still face the same battle, strain, limitations and heartbreak. Just because we’ve had it for life, and we’re so-called ‘used to it’, it doesn’t make it any easier.
We haven’t had the life or the chances or the freedoms, that the ‘newbies’ have, and yet some people think that we hurt or suffer less. It’s not less, it’s just different.
I hate hierarchies in disability or illness as much as I hate them in campaigning because, after all, every one of us is fighting a similar battle and having to do our best at it. Nothing else really matters.
Maybe if I wasn’t disabled and ill, I could have been a journalist. I would’ve had the energy when someone says ‘write about this’ to say ‘ok’. I would’ve been a mum by now, so, do I suffer any less because I’m a ‘lifer?’ No, I don’t.
I will NEVER KNOW what ‘normality’ is like. I’d love that experience – just once. I’ve never had those chances to build my life the way I would’ve wanted it. How anyone can think that it is less painful, or that ‘lifers’ aren’t worth listening to (because we’re ‘used to it)’ is beyond me!
You are never ‘used to it’. It still hurts. We should listen to each other. We are ALL of EQUAL value in this.
We should be helping each other, learning from each other, and sharing experiences.
‘Lifers’ should not be excluded from discussions. It sometimes feels like we are, because of the (very short-sighted, and misguided) idea that we suffer less. I wish.
We suffer differently. If we allow ourselves to be, we can be tortured by ‘what ifs’ and ‘if only I’d had the time to have a family or a career’, but there was no time for me. There was no break, or rest. It’s been strain, pain, and thinking of ways around things, from the word go – and it’ll be more of the same, until the day I die.
I’m not saying to have health, strength, and ability and then lose it is not sheer hell. It must be. It must rip you apart, but ‘lifers’ feel ripped apart too. Just because we’ve never had it, it doesn’t mean that we don’t want ‘normality’, grieve for it, need it and miss it any less. Contrary to what some people may think, it is possible to miss what you’ve never had – and actually, in some ways, it’s heightened because you are wondering what it’s like. Those things I always dreamed of and wanted will be (and have been) permanently out of reach for me.
It’s the simplest of things that others take for granted like becoming a mother, and holding my child in my arms. Isn’t that supposed to be ‘every woman’s right?’ It’s not mine. I’d love to jump in the air or kick up leaves, or carry a cup of tea across the room.
Do I not deserve support or help to come to terms with the fact that I’ll never have those things? I’ll tell you something, in my experience at least, you never really do – not deep down. You just find ways of ‘getting on with it’, getting through each day, and making the best of a bad situation.
Just because I’ve had Cerebral Palsy and other illnesses for thirty plus years, rather than six months, should my opinion matter any less? I have things to say, experiences to share, ideas that might help. I’ve been where the ‘newbies’ are, because we all have to try to accept our lives, and our limitations. It doesn’t matter how (and when) we got here. What matters is the way we deal with it, and what we make of it.
The voices of ‘lifers’ have a right to be heard too. Please don’t be as shallow as to think that it’s easier for us. It isn’t. We need to help and support other, not make divisions and hierarchies where none really exist.
We really are in this together.

Sunday, 8 December 2013

Poor Santa! (Poem - 2012)

Poor Santa tonight had clumsy feet,
For every time he had to repeat
This sliding down the chimney lark
He tripped and stumbled in the dark!

Poor Santa had a tickly nose
And with so many places left to go,
He’d fallen once again to his sooty knees
As he held back yet another sneeze!

Poor Santa decided it was worth a try
For another bite of a fresh mince pie
And when reaching upwards for the plate,
Clumsily fell over some roller skates!

Poor Santa he hurtled towards the door
The pesky plate shattering to the floor,
Next there came his loud ‘Hic Choo’,
And Santa didn’t know what to do!

Poor Santa had made so much noise
He woke up the little girls and boys,
Tiny feet padding down the stairs
He knew that they would catch him there.

Poor Santa this night so far it was tragic,
At the last moment he remembered his magic,
With a click of his fingers and seconds to spare,
He luckily vanished into the air!

Poor Santa red faced and out of breath,
One year those children would be his death,
Slowly he clambered in to his sleigh,
Relieved to make a clean get away!

As he took to the air with a ‘Ho Ho Ho’
There was something poor Santa didn’t know,
Those startled children were aghast to find
He’d gone and left his full sack behind!

Drawing by Catherine Love

Friday, 15 November 2013

Disability Has Given Me More Empathy

As I sit here the pain is ripping through my body. It is relentless, like waves hitting rocks on a stormy day and I’m writing this off the cuff as it were, purely as a distraction.
I want it to stop. I feel like something evil is gnawing on my muscles and positively relishing it!
Painkillers will take the edge off…for about half an hour.

I guess I should’ve known yesterday that today would be worse. I was aching you see, aching badly, but I still wanted to go for a walk because the sun was out. My husband lovingly calls me ‘the hermit’ and I wanted to prove him wrong.

Every physio I have ever had told me I need exercise, especially since my pulmonary embolism in two thousand and five. I have to stay as active and fit as I can, but it is so hard to stay motivated and keep doing it when you know that it will hurt later, if it doesn’t already.

It drains my energy so quickly. Sometimes I feel like a car running on empty. I have to carry on but there is no fuel left, I have nothing left to give.

As a side note, I often get this feeling about my friendships. Part of my personality is that I am there for everybody, whenever they need me. My husband calls it my ‘saintliness’ but it is just the way I am.

On days like today though, I admit to seeing their trivial little worries as exactly that, and hate myself for it. He often reminds me that very few of them have been there for me. “Isn’t that just the way it is though?” I’ll say and he will roll his eyes. He’s wonderful! He reminds me that I have enough to deal with!

The thing is, my disability has probably made me more empathetic and more in tune with people, so yeah, thanks for that! I’m not saying I am an angel. I can be horribly moody and sometimes very depressed. That is just life. Everybody gets depressed and everybody has tough times, but it is how you get through it that matters.

The pain is no better and despite having enjoyed talking to you, (please forgive my disjointed ramblings) I still want to throw something out of sheer frustration! Yes I admit it, there is a bit of self pity mixed in today too, because I did not ask for this, and there is no ‘end’ for me like there is for others with problems. There is no solution.

But, I will not give up, EVER, even though right now part of me wants to. I have an amazing husband and a very strong marriage. I have my family and I have my writing (for what it is worth)!

When I finish typing I will go and curl up in my husband’s arms and I might even finally cry, but I know that all this HAS made me stronger. I hope it continues to do so.

What I’m trying to say, is that, even when it doesn’t feel like it, even when it seems like there is just too much pain, you can always find a little strength from somewhere.

Please don’t give up.

Tuesday, 12 November 2013

Talking the Talk (written May 2000)

One thing I have learned is that it is OK to ask for help. There is no shame in it and I know that now. Granted, I've learnt it the hard way. Falling on my face in front of a bunch of school kids as I was going in to give a speech on life with a disability was a somewhat unexpected way of showing how difficult everyday things can be.

It happened because I was trying to carry a bag, some books, and walk with crutches at the same time. I was too proud, and too afraid of looking stupid to ask anyone for help. What happened? I ended up looking stupid anyway.

There were mortified gasps from everyone in the crowd and several people rushed forward to help me reclaim my dignity. One of those happened to be a tall, blue-eyed sports teacher with the finest pair of legs I have ever seen!

I probably could have gotten myself up off the floor with relatively little fuss, but come on ladies, what would you do? Somewhat flushed, I let him pick me up off the floor, and flashed a smile. "And that, people, is life with a disability!" I said shakily. Momentarily I stared at the floor, and then over in the direction of the male teacher sitting in the corner, 'There are, however, some pluses!' I thought to myself.

Truth told, I was cringingly embarrassed, and, as I discovered later, I badly bruised my already fragile hip in the fall. But right then all I could think about was making the speech in the best way I knew how, and getting out of there alive. I did it. I was honest, open, and I just tried to be myself.

The details of the speech are not important. What is more important to me is what I took from that day. I had never talked about my disability like that before. I have written about it many times, but that is different. I have control then. When I was up in front of all those people it was another thing altogether, and I was terrified, but despite my unfortunate encounter with the floor I was ok.

The whole experience gave me more confidence and I think that has stayed with me. I can't really explain how but giving that speech, and laying my emotions bare like that, helped me come to terms with my life the way it is. Well, as much as I ever will.

I made another speech, a year later. It was the same school, another group of teenagers.

This time there were no falls, and my nerves were under control. It is true that the more you push yourself to do things, the easier they get.

Walking out into the bright sunlight, I smiled.

Then, a moment before I left, a smartly dressed lady came up and tapped me gently on the shoulder. I recognized her as one of the teachers who had sat in on my 'talk'.

"Thank you for coming" She said quietly, "You know, you should charge for doing things like this. Make it work for you!"

Who knows, maybe I will.

Saturday, 9 November 2013

It's Like Being in Another World... (Written 1997 - Age 16)

For  years now, I have been a 'Torvill and Dean' fanatic. When I've had a really grotty day for one reason or another and I want to escape from it all, school, pain, anything, I can switch on and switch off (if you see what I mean!)
With that and the help of a couple of very large bars of chocolate, I feel like I can handle anything!

From the first time I saw 'them' skate, I've been absolutely desperate to try. I can close my eyes and see myself drifting across a vast ice rink. It always seems so real.

Before I went into hospital in early, actually, mid 1995, my family took me to Nottingham ice rink, where Jayne and Chris met. I was happy being there but, as I looked at the rink, I got knots in my stomach, 'why can't I..?' What got me most is that I wasn't even allowed to try!

I'd ask my Physio time and time again, 'Can I go...please?' I never really got a proper answer. I got the same vagueness from her as I did from everyone else I asked. It was always, "Oh well, you know it's not good for you...." So again, I was left to dream. I only wanted to try! I didn't expect miracles....okay, so maybe I did, but it wasn't going to happen. How could it if no one gave me the chance to try?

Everyone was worried that I wouldn't be able to pick myself up and say "Oh well...never mind." Maybe I would be upset and frustrated, but I needed to know.

When the chance to go with school came in the March of 1996, I once again asked my Physio, and she, knowing how much I wanted to do it, needed to do it, to my surprise, gave in! I was ecstatic! A lot higher than cloud nine!

A month later, the trip was cancelled! Not enough people wanted to go! I was gutted! All that waiting and all that hoping, I wasn't angry, I was numb.

Then just after Christmas 1996, my Dad told me we could go when he started his new job. I waited.

I climbed in the car wearing my 'Torvill and Dean' T- shirt. I was as high as a kite!

We got to the rink in Swindon about ten. Jill (my Stepmum) and her children Kate and Nick, with my sister Alison, joined the queue for 'skate hire' leaving me apprehensively squeezing my dad's hand.
"Nervous?" he said,

"Yes" I replied, close to tears.

This was my chance! After so much waiting, I was finally going to do it, and, what's more, there was nothing anybody could do to stop me! I was finally going to break my barriers and answer a question that had been nagging at me for a very long time, 'Can I or can't I?'

When they came back with the skates, my dad spent ten minutes trying to get the skates on over the splints that keep my knees back. "We can't do it" he said. I began to cry, "I'm going on that ice!" I replied through tears.

So, Dad took my splints off and after five very long minutes, we got the skates on!

I couldn't get used to the strange feeling around my ankles and I knew going on the ice without my splints would be a big disadvantage. I can't walk without them, let alone skate!
Dad hauled me up, and I fell straight back down again. Balancing on the blade is hard enough when you've got balance, never mind when you haven't.

Then two ice stewards came over, "okay..." They said, "we're going to give you a hand". One of them was drop dead gorgeous, so I didn't mind! I was shaking!

I took a step on to the ice and my knees gave way beneath me. It was impossible to keep my weight forward because I didn't have my splints on. I tried again, but my efforts were in vain.
Feeling disappointed, I gave up. There was no point in prolonging the agony. I had a rest, planning to go back on later.

I sat and drank an orange slush puppy, feeling a bit disillusioned, and very sad.

Suddenly, the ice stewards came back with a wheelchair! "Come on" they said, "we'll take you on in this!". I wasn't sure to start with. It would be too much like giving in, but at least I could enjoy it without having to worry about my balance!

It was incredible out there! It is, to me, like being in another world! They were playing 'Where do you go?' by 'No Mercy'. I cried.

I had this really light feeling in my stomach, because I had finally done what I set out to do.

The dream that I'd had for six years had finally been realised, and doing it has given me a new kind of confidence. Now that I have at least tried, I can set my sights on actually standing up next time!

Jayne and Chris (Image: Google)

A Love Story (Very Short - Written for a 'Flash Fiction' Competition)

Melanie's blonde hair blew in the gentle evening breeze. She regretted wearing it down now, because it was obscuring her view of him. She wanted to make the most of every second, because after tonight her life would be different. It would be empty. Her heart constricted at the thought of not being with him again.

Reluctantly, she forced her eyes away and looked out across the calm lake. The last of the sunlight twinkled on the water. Melanie wished she felt as peaceful inside as the lake seemed to be.

Instead her hands were sweating as they clenched at her sides. She could feel her short, practical nails digging into her hands, but the pain didn't matter. 'This is it. He is going to dump me.'

The thought stung as tears welled up in her beautiful blue eyes. She bit her lip, 'Oh, I wish he would just say something and get it over with. This is torture!'

He had been distant for days and had begun staring at her when he thought she wasn't looking. In the car on the way here, they had barely spoken. She heard herself sigh and their eyes met,

"What are we doing here, Paul?" she asked him softly. He looked pained for a second, and then stared at the ground.

"I've brought you here to tell you something," came the quiet reply. Suddenly everything seemed still. She froze momentarily as he took her hand. Melanie realised she had been holding her breath and exhaled. The silence between them seemed to intensify. He looked up.

"I love you, Mel". She caught herself in surprise.

"I'm sorry, what did you say?"

He grinned at her shyly.

"You heard. I'm nervous! Please, don't make me say it again!"

At that moment Melanie felt weightless. Everything, and yet nothing else in the world mattered. She stepped into his arms knowing that this was right where she was meant to be, and as she stared into deep brown eyes she giggled. She had been so insecure! It was silly, and she really wasn't proud of herself for thinking the worst of him. But, as of now, all that would change, and somehow she knew that this moment would be the one that changed her life.

"What's so funny?" he asked, smoothing a hand through her hair.

"I'm sorry" she said, "I just thought . . . .you were going to end it!"

"Oh, Mel. No! I've spent the last week trying to work up the courage to tell you how I feel". He grinned, and kissed the top of her nose, "You know what I'm like with words...and you make me tongue tied at the best of times!"

Raising an eyebrow, she smiled for what seemed like the first time in ages, "Tongue tied?"

"Completely and utterly...!" Now it was her hands that tangled in his short brown hair.

"I'll make you tongue tied...I love you." she whispered.

As the sun finally set over the water, their silhouettes joined in a kiss.

Image: Google!

Sharing Time - (Based on a Diary Entry -2009)

Mia's tiny hand curls around my finger unquestioningly. It is perfect and warm.
Settling back against a cushion, I look down into her sleeping face. A moment of peace washes over me. I realise that this is where I'm meant to be, and know that I couldn't be happier if I were part of sunlight itself.

The only sound is gentle breathing as she slumbers, and for a moment everything seems still.

"Well, I guess I'd better take her home..." The voice of my best friend shatters my illusion so forcefully that I actually feel it crumble around me.

For a while the baby was mine and I glimpsed into a world that I know I will never be part of. The bond between mother and child is one that I will never share.

"Yes you'd better..." I say, shaking myself from my reverie. Handing the bundle over, the tiny hand is torn reluctantly from mine, and the last link is severed.

"I'll bring her over again soon" my best friend says quietly, as she takes the little girl fully into her loving arm. With the other, she reaches across to hug me.

I struggle with every fibre of my being not to resent her. I know it is not her fault that I can't ever have a baby.

I feel glad that she is happy and since Mia's birth, there is a new contentment about her, and a light in her eyes. Despite the lack of sleep, she looks serene, and finally complete.

With one finger, I stroke the baby's cheek, and whisper "goodbye..."

When the door closes, I feel empty and cold. Leaning back against the solid frame, the unshed tears roll down my face.


Thursday, 10 October 2013

My Real Name is Susan (Poem 2013)

My real name is Susan
But the Police don’t know that,
For now, they know me as Jenny,
Who burgles, like a cat.

Online I am April
An expert in cyber crime,
Collecting personal details,
They won’t catch me, this time.

The bank thinks I’m Zoe,
A tall and leggy blonde,
I’ve emptied a neighbour’s cheque account,
When they notice, I’ll be gone.

On the plane, I will be Karen
Well dressed in business suit,
I’ll be smart, rich and charming,
And drink champagne by the flute!

On beaches I’ll be lying,
Still living for the con,
Behaving like I’m royalty,
And a beautiful sun kissed bronze.

They will catch me when I am old and grey,
When my life has hit the skids,
I’ll be widowed by a rich man,
And have a couple of kids.

I am a lonely alcoholic
In a small house by the sea,
My real name is Susan,
But I’ve never found me.


Wednesday, 9 October 2013

Voices Unheard...A Life Sentence.

These ear drops smell like flowers - nasty ones. The type that make up your Nan's perfume. Another infection. I seem to be getting a lot lately.

On top of that, I have to have lots to drink this morning, so I can wee in a pot! My kidneys are hurting now, on top of everything else.

The doctors know that they are small (as all my organs are) because I was a ‘prem’ baby.  They need testing to make sure they are functioning as they should be, so I have to wee in a pot.

Have you tried weeing in a pot that size?!

Not even a man with the very best aim, (which, granted, most of them don't have in a month of Sundays anyway), would be able to direct pee into a pot that size!

Please, it's ridiculous!

Yes, too much information, I know, but this is the reality of living with illness and disability and it’s a reality that too many people don't think about.

Luckily I don't have to do things like this as often lately, (although my kidneys have hurt on and off for a while now).

If I had to go into work afterwards, I dread to think what time I'd get there!

With the Endometriosis pain the way it is too, plus my hip cramping up, I don't really want to move very far today and I probably couldn’t, even if I wanted to.

It's all very well to say 'disabled and ill people can work', but what sort of employer is going to want ME?!
'I'm sorry, I can't come in today, I can't get out of bed,' 'I've been up all night with pain,' 'My anxiety stopped me sleeping' 'I've got my head over a bucket in case I throw up,' etcetera, etcetera!

Reality check! It's not as easy as the government and media make it seem...is it?! I hate them for it.
This is MY LIFE we are talking about! It is many people's lives!
Perhaps their short sighted, quick fix, unrealistic 'solution', isn't the answer! Perhaps compassion and understanding is!

We are all different. It is not a case of ‘one size fits all’ with illness and disability, even though the government (and the media) seem to think it is.
The fact is, no matter how much the government want us to work, (and no matter how much we want to), for a large amount of us (and for many varied reasons), it is simply not possible.

Two hours later...

Yay!  Victory (over the wee pot) is mine!
But, you know what, before I go back to bed, I just want to say one thing, and it’s important (to me at least), that I say it.

I'm not one to say that those people who have had disabilities or illnesses for life are worse off than those who 'gain' them, or vice versa, (I would never say that, because it’s not a situation anyone would choose, and it’s hard either way), but I will say this.

Just because I've had my Cerebral Palsy for life, it doesn't mean it is any easier for me. I've had a lifetime of having to think my way around problems, a whole lifetime of pain, stress, and more hospital appointments, fights for my rights, surgery, cancelled plans, limitations, and heartbreak than anyone can shake a stick at!
I know that I've got more of all of those things to come for the rest of my days. There is no break for me. There never has been.
I think sometimes, the 'newbies' (or whichever term you choose to use) might think we have it easier because we are 'used to it.'

Therefore, (it seems to me, anyway) we often feel ignored, and our opinions and experiences don't matter like theirs do.

You know what? We do matter, and we shouldn't be sidelined! Please Ask us TOO! Maybe we can learn from each other.

Just because us (what I like to call ‘lifers’ – again you can use many other terms) never had something, doesn't mean we want it, need it, grieve it any less!
The ‘newbies’ had a chance to live a healthy life, have kids, have jobs etcetera, - we have not.

They’ve had it ripped away from them, and that must be hell, but I've never jumped in the air, kicked up leaves, carried a cup of tea across a room, or held my child in my arms.
I've never had those chances, and I never will.

My point is, there seems to be an idea, (in some campaign circles at least) that us 'lifers' don't need support because we 'have it covered'. To me, it feels like our experiences aren't worth asking about, because we couldn't possibly understand what they have lost, but we do! 

As I said, we have lost it all too. Please listen to us, ask us what we want and need. 

Everyone has something to contribute, no matter which route we got here!
We can (and should be able) to help each other!

We can do this. I know we can, but we need to work together. No one should feel excluded or pushed aside. We all have a right to be heard.

Friday, 4 October 2013

There is Nothing 'Fair' About This Government's Treatment of Sick and Disabled People

‘It’s about being fair’, said a Tory on Channel 4 news tonight. What does this government know about being fair?!

Is it fair that sick and disabled people are losing their independence and forced into poverty, or even a premature death, after having their benefits removed?
I find it convenient that the Department for Work and Pensions will not reveal the latest death figures for those who have died after being found ‘fit for work’. They no longer keep count apparently. What does that tell you about their approach to transparency?
Is it fair that people, including the sick, disabled and elderly, are being turfed out of their homes due to ‘Bedroom Tax’?! They promise exemptions, but very few have been put in place.
Is it fair to exploit unemployed people by forcing them to work for free on ‘workfare’ with the threat of having the only means to support themselves (their benefits) being taken away from them?!
It’s slave labour if you ask me! Get a person to work for less money than you would pay in wages. And how is that supposed to help the economy? It doesn’t! The only people it helps are employers and big business to get free labour and cut their wage bills, and it takes paid jobs away from those looking for work.
How is taking housing benefit away for people under twenty-five fair?! It will only lead to more homelessness and hardship. A situation which has are already seeing in towns and cities across the country.
Subjecting ill, disabled, and vulnerable people to a Work Compatibility Assessment which has been set up to make us fail, (including those with degenerative conditions and those that won’t improve) – how is that fair!?
Victimising the poorest and most vulnerable people in society by calling them ‘scroungers’, ‘fakers’ and ‘fraudsters’ based on highly questionable figures – is that fair!?
Telling the public that benefit claimant’s get ‘something for nothing’, when in reality every single one of us pays to live in this society through taxes on things we have to buy – is that fair!?
We struggle to live every single day of our lives against pain, exhaustion and illness. None of which I would wish on my worst enemy! We are ‘strivers’ – despite what this government would have the public believe! We have to ‘strive’ for every…little…thing!
Ignoring the truth that the majority of benefit claimants have worked at some point in our lives and contributed to society – is that fair!?
No,.. it isn’t fair! None of it is fair, and it needs to stop, now!
Nobody chooses to have a disability or to be ill, and nobody deserves to be treated like this government are treating us!
We are not second class citizens! We are not scum! We are people! We deserve the same respect, compassion and consideration as anybody else! I for one am sick of being a scapegoat for the mistakes of this government, big business and bankers. Tax them, not those that can least afford it!
It’s about being fair is it?! If this is fair, I would hate to think what unfair is!
We are paying with our lives! I am sick of being judged and being made to feel like I am worthless, just because I have a disability, and on top of that, illnesses which add to what I already go through.
I want this government to show me some respect!. I want to feel like I am valued in society!
One thing is easily forgotten: Illness and disability can happen to anyone,.. at any time. This government would do well to remember that!

A Letter to My Grandmother (written 2010)

Dear Gran, 

I wish more than anything that you could read this letter. 

You seem so far away, well, I guess you are. 

The Alzheimer's Disease has taken you from us, and you no longer recognize the grandchildren you loved so much. We miss you. 

I miss singing ABBA songs in your sunny living room, and dancing with you as much as the Cerebral Palsy would let me, and then the two of us finally falling contentedly on to your brown tassled sofa. I was happy then. 

I loved listening to you sing, early on Sunday mornings, when you thought no one else was awake. I never did tell you how much I enjoyed getting out of bed then, and creeping downstairs, just so I could spend time alone with you. 

We would sip steaming mugs of tea, and put the world to rights over the kitchen table. Mum says my tea 'addiction' is your fault! 

If you could see me now, you would tell me to wipe my tears, and be brave. I know you would, so I'll try not to cry anymore. 

We had many arguments - I won't pretend we didn't. 
There were times when we would shout at each other, both of us wanting the last word. That's the problem when you are cut from the same cloth I suppose. 

It would always end in an apology, granted, usually mine! Then we'd have a cuddle and yet more tea. 
All those arguments seem such a sad waste of time now. Time that you could've spent telling me more stories. You probably wouldn't believe me, but I really did enjoy hearing them. 

Tales of your evacuation during the war, when you were able to run and be part of the countryside. Your face would light up when you talked about that, and the wonderful times you had with the other girls in the children's home. 

I hope that is where you are now, as you sit in the chair by your hospital bed. I hope you are running through those fields, or spending time on the roller skating rink, where you met Grandad. 

I wish you could see the person I've become. I know you would be proud of me. You were right about so many things. I did find someone to love me for who I am, and I know you would think the world of him, too. 

More than anything though, I wish I could make you well again, and bring you back to us. 
Wherever you are today, I hope you know how much I love you. 

All my love, always. 

Helen xx 

                                                            In Memory of Gran

Wednesday, 2 October 2013

Things My Gran Taught Me

My Grandmother died in December of 2012. I choose to remember, not the frail, elderly, lost woman she became as the Alzheimer's disease took her from us, but the funny, witty, bright and somewhat mischievous woman she really was.

This is the first of two pieces I'll blog in the coming days. The second being a letter I wrote to her when she was ill in hospital. She never read either of these pieces, and the latter was adapted and read at her funeral, which took place on the 8th January, 2013.

My Gran always had a twinkle in her eye, which she never lost, even at the very end. I think sometimes, when people we love become ill, and we watch them suffer, it can be very easy for our last memories of them to be exactly that. Memories of suffering and pain.

I don't want that for her. She was (and still is) so much more than the disease made her.

I was lucky enough to spend many hours with her. Time when it was just us, sitting at the kitchen table drinking tea, and putting the world to rights, before anyone else got out of bed.When I got older, we'd sit in the living room drinking vodka, late at night.

I loved going to stay with her, and I loved our chats. I won't pretend we always got on. There was the odd spat, but cups of tea usually solved all that.   

She gave me lots of little snippets of advice, weaved in and out of the stories she told me. Stories of her life, and stories about my Mum, Uncles' and Aunt as children. 

She probably thought I would forget all the advice and little things she told me, but I never have, and I hope I never will.

That's why I wanted to share some of that advice, here and now. She was wise, funny, mischievous, and very clever. Some of that advice has got me out of many potential 'situations'. Especially, the one about the knickers! I hope enjoy them as much as I have.

'Always brush your hair and wear clean underwear. You never know when you might get hit by a bus!'

'Never marry a politician. If they can lie to other people, they can lie to you'.

'Before you go to the loo, always make sure the lid is up!'

'Helen, you haven't had too much to drink until you can see four of your crutches!'

'Don't eat too much cheese, it gives you arthritis you know...'

'Never marry a man you can't be friends with.'

'You shouldn't drink vodka straight, it rots your insides!'

'You can never have too much tea!'

'Don't marry anybody who doesn't like animals'.

'If you've been to the loo, and you're wearing a skirt, always make sure it's untucked from your knickers!'

'Always be yourself, Helen. If someone doesn't like you, it's their problem - not yours!'

'I think things always turn out for the best in the end'.

Gran, with Hugo the puppy, my sister Ali, and I.

Gran, Ali, and I

Gran and baby me.

I love you Gran, and miss you every day xx

Friday, 27 September 2013

Speak Out - Stop Cyberbullying Now

 For some time last year, I was a victim of cyber-bullying - most of which, took place via  Facbook  

What happened to me was nowhere near as severe, nasty, or long lasting as what some people go through, and I'm so glad that (for now at least), it appears to be over.

In reality, it doesn't matter about the so called 'severity' of it or how long it lasts. It can be six weeks, six months, or six years - the impact is the same.

I won't go into specifics here, but I was bullied because I had the guts to stick with something I believe in wholeheartedly.

Sometimes you find yourself in a situation you would have never thought you would be in. You either do what the bullies tell you and walk away, or you stay and keep fighting.

I chose to stay, even though the bullies hated me for it. Why should I give up something I believe in, just because certain people did not (and probably still do not) approve of my choices?

I was told repeatedly that I was not the person that they thought I was, and by some I was called names. I was made to feel awful about myself on a daily basis, and it's not just the things they said to me, it's the things that were said and done behind my back.

Lies, assumptions, and judgements are made about you - and you have no control over what is done with them. For me, the worst one (although not to my face, as it were) was that I was 'faking' and 'exaggerating' my disability, I was 'a keyboard warrior!' 

For the record, when I started campaigning, there was no internet, and we didn't own a computer. It was writing letters, making phone - calls, and getting out there to talk to people. I still do that, too, but as you'll realise, it was a different world then, and it was an entirely different, FIGHT!

I  actually felt  quite indignant about the 'keyboard warrior' comment.  

In a lot of cases 'keyboard warrior-ship' or 'armchair activism' is the only option disabled and ill people have! 

I personally, would struggle to travel to protests and I think comments like that diminish and undermine, all the hard work we do in raising awareness of the hardship being caused.

We share information, provide emotional support, and we talk to people. A lot of us have dedicated our lives to this, and I really feel that everyone has a part to play, and making distinctions between so called 'direct action' and 'armchair activism' is divisive. It's the sort of thing the Tories would do!     

We don't need other campaigners to be doing that, too, because it does far more harm than good.

I am aware that by writing about this, I run the risk of it starting the bullying all over again - but I had to do it. Like I said, what happened to me was mild compared to the situations of others, but I still felt scared to turn on the computer in case there was another message waiting for me, and I found I didn't know who to trust.

Was the person I was talking to online really on my side, or were they one of the bullies, just pretending to be my friend? Would they turn on me, and use what I said against me later? Were they going to spread more lies? Sometimes they did, and I had trusted the wrong person. That just made it worse.

For the brief period that it went on, I doubted myself even more than usual. I was withdrawn, I was angry and I couldn't fight back.

I was battling the limitations and pain placed on me by being born with Cerebral Palsy. I can't walk or stand unaided, and I know I can never be a mother. I live with pain, in some form or other, every day of my life. It's hard and it's heartbreaking. There are days when I just curl up and cry, but I know I am luckier than so many, and all those years ago, I made a 'little decision' to try and do what I could, to try and change the way disabled people were perceived.

Having to fight (against our own government), for our very lives, is something I could never have predicted. 

Disabled and ill people are being systematically stripped of of our rights, dignity, and self respect by a vile, compassion-less government, and a media that seems (at least a lot of the time), intent on helping them vilify us, by spreading lies about benefit fraud figures, telling us we should all be like the seemingly 'superhuman' Paralympic athletes, and anyone isn't able to be (through no fault of their own), is labelled a 'scrounger.' 

We have been made to feel worthless, and that we don't deserve our place in society.

Like I said, I wanted to keep campaigning, the way I always have, especially against our ever worsening situation, but the bullies made me feel like I couldn't, and even more disturbing to me, was the fact that I was beginning to feel like I didn't want to fight any more. What was the point when I was even scared to turn on the computer?  

I knew who 'my' bullies were, and I knew why they did it - or at least, I think I know why they did it. For many people cyber-bullying is faceless. It is almost entirely anonymous, and that just adds to the fear and intimidation.

According to the NSPCC website 38% of young people have been affected by cyber-bullying. Their information comes from government research and data as of March 2013.


With the tragic suicides of teenagers like Hannah Smith bringing cyberbullying back into the spotlight last year, it is important that no one feels they have to suffer in silence, whether you are a teenager or a full grown adult.

I made the decision to stand my ground. Making so many friends in the campaigning community, has made all the nasty words, and feelings, worth it - and I'll be a disability rights campaigner, until my very last breath, no matter how I'm treated. 

It's part of me. It always has been, and it always will be, but in a world where more and more time is being spent online, we need to be aware that it can happen to anyone, and thankfully, when I was bullied, my campaigner friends were there for me. 
 Of course there are tensions in any group of people, and you always take a risk when you go online but for me, the positives far outweigh the negatives. I think we are gradually chipping away at the the myths, lies and misrepresentation of disabled people To me, that proves, there really is, strength in numbers!

If you have been a victim of cyber bullying you can find more information and help at the following links:

Government Site:




Image: Google