Thursday, 18 December 2014

'Are You Always This Much of a Bitch'? (Facebook Status Update)

'I can always tell who are the people that know me best. Those that don't are the ones that ask me if I'm 'always this tough', or 'this much of a bitch?!' 

Those that know me best will know that I'm not a bitch at all, but I will fight and argue for something I believe in. 

Those that know me best are probably aware that I keep a lot of things bottled up and private. They come out when I write, or when I need to let off steam a little! 

In fact, (without blowing my own trumpet), I have spent my life being there for others, caring, picking up the pieces, and offering advice whenever asked. That's who I am, and what I do.

I can see the bigger picture in terms of what happens in the world, and I'll do my best to make a difference to it - even if it's only a small one. 

I've campaigned on disability rights issues, since I was 8 years old. I don't know what it is in me - it's hard to put a name to it, but it's there, and I can't imagine being any different. I can't imagine being one of those people who lives their lives in a selfish bubble! 

I'm not perfect. I'm mouthy sometimes, and I snap when I'm in pain, frustrated, or tired. I wish it were possible to make the world see what it feels like to be in pain, to be so limited, and to feel so heartbroken sometimes, that I can barely breathe. On those days, Cerebral Palsy SUCKS!

I want a normal life so badly. I want to have a job and be a Mum, but I can't have those things - through no fault of my own.

Usually I'm proud to be me and I love what I do. Most days, I can accept my disability, and I like being different. I treasure the empathy and the insight that I feel it has helped to give me.

Other days, I feel crushed and hopeless...and angry. It tightens in my chest, knots my throat, and makes my stomach flip over and over. Few people have seen me in that state...and I like it that way! If you have that's good. I trust you!

In short, whatever this government tries to tell you, whatever lies it decides to spin, however many doctored figures it decides to throw your way, please remember that every single one of us is a person. 

We have thoughts and feelings and we hate what's happening to us. We did not ask for our lives or our struggles...and right now we need your support, more than ever. 

Thank you for reading.'


Monday, 15 December 2014

Campaigning - The Reality - (What Needs to be Said)

I notice there are plenty of people, who tell me not to give up campaigning, but very few give what I feel, and why I feel it, the time of day.

This is not something which is just 'Helen being difficult, again'.

This is a feeling which is real, and which is spreading among lifelong campaigners - that we aren't heard, and that the cause is rapidly becoming about egos, rather than people.

It's particularly hard for us 'lifers' - (those with lifelong disabilities), who can see a cause we LIVE, (and have lived, for many years) being used, to further ambitions.

When we criticise or speak out about this issue, we get accused, (by the self appointed hierarchy), or their minions, of being jealous, or creating divisions, where there aren't any - but, there are. 

All our years of experience, don't seem to matter, because there is a feeling amongst others, that 'lifers' should be 'used to it!'

The fact is, it is just as hard for us. It is possible to grieve for something you've never had - and it's heartbreaking, to know that you will NEVER have it!

Please don't belittle us, or tell us that what we're feeling, is somehow wrong, - it isn't.

Many lifelong campaigners, fought to pave the way, for what people (new to illness or disability), have now.

Many of us know different ways, of getting things done, and different strategies, to raise awareness of our situations, because we have had to do it - always.

It's not something we have come to, just because this government started treating disabled and ill people. like shit - and it's not something, that we will stop, when this government, finally goes! It is LIFE!

I don't mean to imply that people new to disability or illness, have it easy. I can't imagine what it must be like to have something, and lose it. It must be awful.

What I'm trying to say is that, to a certain extent, divisions are natural, because of the differences - and yes, we might be able to work together, if we found common ground, - but from my perspective, (and that of many more lifelong campaigners), that common ground, is difficult to find, while those with egos, (and ulterior motives), are making mistakes, and making it about themselves.

That isn't me being nasty, or bitchy, it's me, being honest, and trying to tell it, like it is.

I said a long time ago, that if things carried on the way they are, then a lot of lifers, and lifelong campaigners, would end up feeling awful, and unheard, and they'd quit. Unfortunately, I think that is starting to happen now. I might be one of them.

What it comes down to, is that no one should be, (or feel) excluded,because it needs all of us, to fight this government.

I tend to stay out of groups, not because I'm anti social, or rude, or that I feel I'm better than anyone else. It's just that I feel, some of the decisions, and 'group politics', are a distraction, from what I know I need to do.

Over time, as a campaigner, and as a person too, you get to know what is effective, and what works best, for you.

I'm not a difficult person, and I do listen to others - as most lifelong campaigners, do. We wouldn't be still doing this, if we didn't.

I know that, going into things with a tough,aggressive, 'in your face' approach, isn't the right way to do things. Actually, it just gets people's backs up, and it makes a difficult situation worse.

Equally, I know, that there are some groups and organisations, I feel we shouldn't be negotiating with, because (from experience), I know that, often, what you give them, can be used against you, and backfire.

There must be a different way, a middle way, but we won't find until people are really heard.

I'm not writing this to hurt anyone, or make things difficult, I'm writing this, because it hurts me so much, to see a cause I love and believe in, (and have done for twenty five years), changing beyond recognition, and not necessarily for the better.

I'm sick of crying over it all, and having a nasty, churning, feeling in my stomach. I have to say something - or I have to quit - and I'd rather not do the latter. 

Image: Google

Wednesday, 10 December 2014

The Best Day! (Written December 2013)

I've had the best day! 

It's amazing how, when you are at home most of the time, you get used to it. It gets to the point where the less you go out, the less you want to go out. 

Winter sunshine was pouring through our bedroom window, and there was a cold nip in the air. I was enjoying being snuggled up with him in the warmth of our bed, listening to the sounds of life outside. I could've stayed there all day. 

"Right!" he said suddenly, breaking the blissful peace, "Let's get up and go into town. If we hurry, we can get an early bus." 

I turned away and pulled the quilt tighter around me, "Oh, I don't think so, it's cold. We should stay in." 

He hauled the quilt off me, and the icy air instantly gave me goose bumps. 
"Come on. We could do some Christmas shopping, and put some colour back in your cheeks!" 

I could see I wasn't going to win this one, so I dragged myself out of bed, and dressed quickly. 

We got to the bus stop just in time. There weren't that many people on it at all, and as Colin read his book, I looked out of the window. 

A few houses are already decorated up in town. An inflatable Santa hung precariously from one window, like he had decided to jump to his death and then changed his mind at the last minute. 

There were lights around the windows of others, some of which had obviously been left on overnight, and could barely be seen against the light of day. I wondered why people did that? Surely turning them off before they went to bed would be more sensible, and besides, it would help the environment. But, I grinned, it is 'silly season' after all! 

The city centre had that lovely feeling of early morning quiet about it. There was a smell of McDonald's breakfast filling the air. I breathed it in, and smiled. People passed us. A college girl spoke on her mobile phone as she walked. Her conversation was lively and excited. I wondered briefly what she studied, and why she was so happy first thing in the morning! 

It's funny how when you pass people in the street, you don't actually 'see' them. Yesterday though, I did. It was almost as if I was seeing everything through fresh eyes. The colours seemed sharper, and I noticed little things, like a piece of paper floating on the wind, and a pigeon chasing stray bread. 

By the time we got to 'Thornton's' chocolate shop, I was already tired and hot from the effort of walking, so I sat back in the comfort of my wheelchair, and watched the world from a different height. You'd be surprised how many people look down on you, in more ways than one! 

Eventually, laden with tempting boxes of chocolates, we joined the queue that was already forming. The man in front of us had a hole in the pocket of his stonewashed jeans. It was at eye level for me, so I momentarily pondered how it came to be there. 

Maybe that is just the writer in me, always looking for the spark of a story, or maybe I had been stuck at home for longer than I realized! 

By lunchtime the city centre was crowded with Christmas shoppers. Everyone was in a rush, and was stepping around an old lady who was hobbling slowly with a stick. I felt for her. I've been there over and over again. 

The crowd of people behind you, all wishing you could move faster. You wish you could move faster! The worst thing about it is always the sighs if impatience that some people don't even bother to hide. Even with a disabled daughter, my Dad is sometimes guilty of that. 

Leaving the centre for a while, we walked up towards the 'Circus,' a curved row of Georgian town-houses away from the main street. Bath is a beautiful city, but, as with everything, you tend to take it for granted when it is so close to you. Today, though, I looked up. 

The sun was dancing on the beautiful architecture, bathing it in a golden glow. It was a lovely sight, and I was once again grateful for my 'fresh eyes'. 

For a while we sat on a bench underneath a tree, our gloved hands entwined and my head on his shoulder. I had one of those rare moments of perfect bliss, as I breathed in the biting air again. 

"Okay?" he said to me, squeezing my hand. 

"Oh, yeah!" I replied. 

It was a shame to move, but we had to. 

After picking up a few more odds and ends, and nearly forgetting wrapping 
paper, we walked back towards the bus station. 

By now, it was dusk and the Christmas lights brightened the street. It was like a wonderland, and I looked around me, I felt the first pangs of the Christmas spirit. Despite the cold air, I was warm. 

Once home, we sat on the sofa with steaming mugs of tea. I took a sip and let the heat drift down my throat. 

"Your cheeks are all rosy!" he said, grinning. 
"Fresh air!" I said, smiling back at him, "Thank you for dragging me out today." 
"I'm glad I did too, it's done you the world of good." 

He was right, it has. 

(Image: Bath - Christmas Lights - Google)



Monday, 8 December 2014

How Do We Fight?

I feel so angry and hurt, that I've been crying, again.

I hope that one day, disabled and ill will get justice, for everything we have been put through, and for all the people that have died, at as a result of what this government have done to us.

Today is not a good day, for disabled and ill people, (with the 'Independent Living Fund' closure being ruled lawful, and the ruling about priority access to buses, going against us),  but neither is any other day, under this government. It just feels like a couple more kicks, while we're down.

Even the law doesn't protect us, because when the government doesn't like any victory we get, they change the law retroactively, (which means everything that went before, no longer stands).

It's one thing after another, after another, and then alongside that, the media, does the government's work for them, and tells us that we are any variant of 'scrounging scum', relentlessly!

It's only a matter of time, before it all starts to rip apart your self esteem. In my case, I've spent my life trying to build it up, because I don't have much. What I do have, is fragile.

It's not just the impact of what's happening to us now, that hurts and frightens me. It's the thought, that when this government is gone, (which it will be, one day), it's the long term campaigners, that will be left to pick up the pieces.

We'll have to work even harder, to bring back the cause, even to where it was, before the damage was done, - in more ways than one.

How do you do that? Where do you start?

This government has told the public that we're all 'fakers' and 'scroungers.' They have vilified us, and made us second class citizens, if that! They have made people view us, with doubt and suspicion, rather than understanding, and compassion.

Everything I, (and so many others) have done, over the years, to help people understand disability, and view disabled people positively (and as equally as we had been), is being eradicated,by a government with malicious, cruel, twisted, and heartless ideology.

They've taken the cause back thirty years - if not more, and if they win again next year, they will keep doing it!
People like me will keep feeling unwanted, keep feeling that they are a burden, and they will keep being victims of disability hate crime. I dread to think how many more of us will die, or commit suicide, if this is allowed to carry on.

Sometimes, I feel so hurt, and angry, that I can barely breathe! It's all I can do, not to sit and scream my head off!

One of the hardest things, is getting people to listen to what the truth, actually is. This government has been so effective in turning people against us, with a drip, drip, drip, of lies, and (ahem), 'massaged' fraud figures!

They don't want people to know the full extent of what welfare reform has done. and they've stopped counting our deaths! What does that tell you?!

I miss the days, when disability rights campaigning was about fighting access issues, changing attitudes,and being positive. I didn't know when I was well off! None of us did.

If you had told the little eight year old girl, I was when I started campaigning, that twenty five years later, things would be worse, rather than better, she wouldn't have believed you, and I wish it wasn't true now, but it is!
Now, disability rights campaigning is about saving lives! It's about playing 'cat and mouse',with politicians that, (largely), don't care, (because we don't fit the twisted ideal). It's about reading policy, and thinking constantly about the best way, to solve the next problem.

It causes tension with your family, and rifts with your friends, because they just don't understand that this is something that IS happening, and that I, (we), have no choice, but to fight! If we don't, no one else will.
The anxiety and fear, (caused by the Work Compatibility Assessment, and benefit sanctions), that disabled and ill people feel, now, is so great, that you think about it,and you feel it, even when you try, with every fibre of your being, not to!
I want this to stop. I would give up, almost everything in the world, for this to stop!

Disabled, ill, and poor people, didn't ask for our lives. None of this is a choice, and yet, we are being punished for it, and being made to feel bad about ourselves, every day single day.
We can't take another five years of this government - at least, I know I can't.

Thursday, 4 December 2014

A Response to my MP -(RE: NHS Amendments and Powers Bill)

Dear Mr Rees-Mogg

Thank you for your letter, dated 2nd December, informing me that you were not in parliament to vote against the government's plans for the NHS, and that had you been able to attend, you would have voted in favour of proposals.

Given that you are a Tory, I cannot say I was surprised to hear of your position!

Thank you, also, for informing me that we have one of the best rated 'Circle' hospitals nearby, at Peasedown St John.

Whilst I am aware that they carry out NHS procedures, I wish to point out that should government 'amendments' be passed (at the second stage), the NHS, will suffer greatly - as no doubt, you are already aware!

I also wish to point out, that not everyone can (or will be able to) afford private medicine, and thus, you would be creating a two tier system - with yet more inequality between those that have the money to pay, and those that don't.

Eventually, despite Tories professing otherwise, it is your goal, to fully privatise the NHS - and create an American style healthcare system, - in fact, we know that the wheels are already in motion for that to happen. Your party, just doesn't think anyone will notice, if it's done slowly, and behind closed doors!

Personally, I feel that the idea of privatised medicine, is rather heartless, and elitist. Also, the very idea, puts profits before people's needs. Once again, I am not surprised by this, as it only goes to prove that heartless, and cruel Tory ideology is the order of the day!

I wish to inform you, that, (as if you didn't already know), your party do not have the interests of the general population at heart, (despite frequent claims to the contrary)!

I hope, that in May 2015, the people of Bath and North East Somerset, and Britain as a whole, will finally realise, the harm that has been done, (and will be done), should they choose to re-elect you.

Yours Sincerely
Helen Sims
Disability Rights Campaigner

Monday, 1 December 2014

Hic Choo! (Children's Poem - 2003)

A germ is cunning,
My nose is running,
He's got me through and through,
It's your fault,
It really is,
I caught him from you!

My head is spinning,
The germ is winning,
I've taken to my bed,
I wish that it would leave me alone,
And bother someone else

My body aches,
I've got the shakes,
This germ has a hold you see,
I'm lying here,
With tissues near,
Oh why is it always me?!

I can't fight off
The terrible cough,
The germ is gripping me,
I hope that soon
He will pack his bags,
And leave me to be free!

My throat's stopped burning,
And head's stopped turning,
He has finally moved out,
I'm back drinking tea,
Feeling more like me,
It's so nice to be up and about!

My nose has unblocked,
My chest is unlocked,
And now I smile again,
The germ of course,
Is still in my thoughts,
Though he has gone away.
I know that it's bad,
But I am glad,
He's found somewhere else to stay!

(Image: Google)