Saturday, 31 January 2015

Disabled People Living in Fear of Losing Benefits (2014 Edit)

Sometimes I wish I wasn’t me. It’s hard to fight when you’re tired of fighting.
Living with a disability is exhausting, frustrating, crushing, painful – and endless. There are so many obstacles in my life that I would never have asked for, and sometimes I feel so angry, hurt and frustrated that I don’t know what to do with myself.

Cerebral Palsy is not a choice. I would give anything to be able to stand and walk unaided, get in and out of the bath without help, stand long enough to cook a meal for my husband and myself. Hell, I’d settle for being able to carry a cup of tea across the room!

All I have ever wanted is a ‘normal’ life – to have a job, and be a Mum. None of those options are open to me – and it’s not my fault.

I wish society and this government understood what it is like every single day. The energy (and willpower) it takes to do even the smallest thing. There are some days when I really don’t have that energy, either physically or mentally, and it’s all I can do to get out of bed.

I know I’m luckier than a lot of people – ‘there is always someone worse off than you’ is something I have always be taught. I live by it, I believe it, and I’ve always done my best to care for and help others,despite what I may be going through privately.

I've been a Disability Rights campaigner, at different levels, (and when able), since I was eight years old. (nearly twenty six years), and I'm watching the cause I love, and passionately believe in, being set backwards.

That’s part of why I’m writing this now – it’s why I’ve written many things. If I can make one person understand what it feels like to live with a disability in a society which still doesn’t accept, respect, and properly care for people like me, then I’ve done my job.

Before the coalition came to power in May 2010, I was coming to terms with things. I was more secure, happy, and confident in myself than I’ve ever been in my life.
I still felt bad about the fact I couldn’t manage a job, (I did work once before my mobility, pain and energy levels got worse). I did voluntary work too.

There was a place in society for me. It’s never been an equal place, but we were getting there slowly. At least disabled people were wanted in society. We weren’t viewed with suspicion, or labelled as ‘scroungers’, leaches accused of bleeding the country dry, or targeted for seemingly contributing (largely) to the country’s deficit.

I want those days back so badly. I did not realise how lucky I was – how lucky we all were. We were people then. We are not now, not in the eyes of the government.
We are living in fear of losing our vital benefits and our independence. Independence (what I am able to have of it), is a precious thing to me. I have fought to hold on to it against all the odds.

When I was 14 years old, I had major orthopaedic surgery in a hospital nearly two hundred miles from my home in Somerset. My bones were broken and reset, muscles were cut, and I had to learn to walk from scratch. My family couldn’t stay with me – they had to go to work, and my sister to school.
There were days of agonising physio, crippling loneliness, and the start of my lifelong battle with clinical depression. Now, all these years later, I realise that I had to go through it to keep myself out of a wheelchair, protect my freedom and independence for as long as I can.

I’m terrified that the government will take that from me if my Disability Living Allowance is withdrawn. I dread not qualifying for Personal Independence Payment – even though I fight the daily pain of Endometriosis and Polycystic Ovarian Syndrome on top of everything else!

It won’t count under the‘tick box’ computer programme that they use to decide our lives. I fear the Work Compatibility Assessment so much that I have nightmares about it. Waking up sweating and panicking with knots in my stomach is not conducive to a good night’s sleep, so I can’t get the rest I badly need.

I’m not alone. Thousands of disabled and ill people across the country are living with the fear everyday. I jump at the sound of the letter box, just in case it’s my turn.

I don’t trust what they say about dates, regulations and criteria for benefits anymore, because it’s been changed so often, and those changes have been allowed to slip under the radar – and so have the deaths of sick and disabled people who have wrongfully been found ‘fit for work.

A growing number of sick and disabled people are dying prematurely after being found ‘fit for work’. Either their conditions have deteriorated or they have chosen to end their own lives; simply unable to face either the assessment itself or a life of poverty and hardship without benefits.

Yes, you can appeal the Department for Work and Pensions (DWP) decision, but, due to a backlog at the DWP, as well as changes to legal aid (and who can qualify for it), it will take ages, and for many, life will become even more impossible – and even if it isn’t, it will feel it.

I’m lucky to have my husband and his pension to rely on so my situation is nowhere near as dire as it will be for some who have been let down by inhumane system. Even so, I am actually considering signing of Disability Living Allowance, because I simply cannot live with the fear any longer.

I will have to close my bank account and be completely reliant on my husband financially – just like I’m reliant on him for so many other things already. I’ll hate that, because I already feel like a burden, even though he assures me I’m not.

My precious independence will be gone – but at least I’ll be able to sleep again, and I will not have to fear being judged and told I am not worth supporting.

The ‘scrounger rhetoric’ and negative media coverage has attacked what self esteem I have been able to get for myself. I used to feel proud. I was a wife, daughter, sister, writer and disability rights campaigner. My benefits were secure and I all I had to worry about was finding the energy to get through the day.

Now, my old demon of not being able to work is back, and compounded, because the ‘aspiring’ ‘achieving’ nation (and its government) hates benefit claimants – no matter how justified we are. They do not seem to care about the affect their policies are having upon vulnerable people in society. It doesn’t seem to matter as long as people like us aren’t taking ‘honest, hardworking taxpayers money’. We work hard just to get through the day!

Fighting for myself and others is now more important than ever before. We are fighting for our lives, against Bedroom Tax, the Housing Benefit cap, the closure of the Independent Living Fund, cuts in social care and so many other vital services.

Why is it that the cuts have to come down hardest on those that need the most help? How can you call this a fair society when we are struggling, largely unseen and uncared for when the rich bankers (the very people who caused this mess) get bonuses and tax breaks!

Disabled and vulnerable people should not be used as scapegoats. It makes me sick to my stomach that we are being punished simply for being too ill or disabled to work, no matter how much we might want to! Blame the people who are really at fault – the tax avoiders, the bankers and our governments for letting this happen.

I will spend everyday, for the rest of my life, fighting against this if I have to – but I shouldn’t have to. None of us should!

The Bedroom Tax will fall disproportionately upon sick and disabled people. Whilst there have been exemptions made for families with disabled children, those that need overnight carers, people with adult children serving in the forces who still need a room at home, and a few other things, disabled adults are still not exempt.

I am one of the lucky ones, because this particular punishment for being on benefits (that’s essentially what many of these policies are) will not impact on me. I am so thankful for that, because I do not think I could stand having to leave my home. I can only imagine what thousands of others like me are going through. They know they have to pay up or move out of a home they may have lived in, loved, and felt safe in for years.
Where do they go? There is a national shortage of social housing as a whole – not just the one and bedroom accommodation that many people will need to downsize. Homelessness is bound to rise as people cannot afford to stay (a claimant loses 14% of Housing Benefit for the first spare bedroom, and 25% for two or more extra bedrooms) but have nowhere to go.

Each council will offer a ‘Discretionary Housing Payment’ to try and help those they consider to be the most in need. Personally I would like to know who will make that decision and how? It is important to realise that the pot of money allocated to help those hit by Bedroom Tax, is nowhere near the amount needed. People who need help will suffer even more than they already are. I also feel that these Discretionary Housing Payments have been severely under-publicised.

I’ll say it once again. It is not fair to make the weakest and most vulnerable in society pay for the mistakes and greed of the rich.

Stripping disabled people of our rights, independence and self respect is the coldest and most callous of things any government can do and I have to pinch myself sometimes to even believe that it’s happening in a so called compassionate, caring society.

I just wish it would stop. What this government has done to us is psychological torture. We are told we are worthless, scrounging, and lazy, day in and day out. On top of that the fear of the Work Compatibility Assessment is hanging over us like the sword of Damocles!

It is not fair for anyone to live like this, and I keep thinking ‘please, somebody stop them, before anybody else feels like they cannot carry on’ – but nobody does. I just want a chance to live as normal a life as I can. I’m not asking for much, just to keep what independence I have and to get my self respect back. Haven’t I been through enough already? Haven't all of us?! If I was face to face with you right now, I would ask you only one question – How would you feel if this was happening to you?


Thursday, 29 January 2015

Dreaming Sandcastles

I've never built a sandcastle,
“What's the point?” I would say,
“The waves will come and wash it away.”

I've never built a sandcastle
With its windows and a tiny door,
Maybe I have never dreamed before.

I've never built a sandcastle,
I feel forced to say
When you run up and ask me to play.

We walk down the beach hand in hand,
I watch you fill your red bucket
With moistened sand.

I wonder how you know to pack it tight,
To tip it up,
And tap just right.

You take my hand now,
We search out a stick,
And then run back to finish it quick!

When carving out the windows
And the tiny door,
I wonder why I never dreamed before… 

(Image - Courtesy of Google)

Thursday, 22 January 2015


At the end of the day, it doesn't matter what anyone thinks of me, or what any other campaigners think of me. I'm here for the cause! I am upfront, honest, and I fight tooth and nail, for what I believe in.

If I feel something's wrong I will say it, because that's who I am. What you see is what you get. I hate egos, game playing, hierarchies, and unfounded accusations. 

If anything will make me quit campaigning, it's those things because they're not what I'm here for. I'm here, because I care and I want to help make things better, for all of us.

Not everyone can agree on everything.Disabilities are different, people are different, and so are experiences. Not forgetting, that this government has put disabled and ill people, under unimaginable pressure, and stress! Sometimes, it can feel like a pressure cooker, as we all fight, (more and more desperately), for basics, and against, hurtful 'scrounger rhetoric'. It's understandable that there will be tension!

Having said that, I'm all for 'unity' where it's possible. If I didn't believe we had some things that united us, and a cause to fight for, I wouldn't still be here.I would've let the group politics, egos, and hidden agendas, I found when I first brought  my campaigning on line, (and still find now), get to me, and I'd have walked away but I didn't!

I've done this for twenty five years of my life. THIS is my life and I think sometimes,others in the campaigning world think I'm being difficult, but I'm not.

The fact is, those of us who have had our disabilities since birth, tend to see things differently. Having to fight, sometimes goes with the territory, and we have always had to fight. We have fought for the things that people new to disability (or illness), have now, - and that's why we need to be heard.

Many of us ('lifers)', feel we aren't considered in the campaigning world. 

We feel we aren't wanted or valued, and the 'newbies' (for want of a better phrase), shout louder, make the decisions, and are heard!

There seems to be a strange idea that 'lifers' should be 'used to' our disabilities, and that we 'have it all covered'. We don't. We hurt too, and we also struggle day in and day out.

Just because we have dealt with it, longer, it doesn't mean we struggle less, and yes it is possible to grieve for what you've never had. 

There is a part of me that grieves every day for the children I can't have, and the things I have never, (and will never), be able to do.

That is what should unite us. We have all lost something and our lives are not like other people's. There is a long road to acceptance, and we're all on it. I think I for one, always will be.

Many 'lifers' find the way campaigning is being done now,difficult. 

We started our campaigning lives before the days of internet groups and the campaigner hierarchy- (many people will probably hate me, and want to deny that the hierarchy exists, but it does)! We didn't even see ourselves as campaigners. We were just doing what we felt was necessary and right.

Hierarchies and groups tend to mean less to us for that reason, and experience tells us that sometimes, groups take 'the cause', in a counter-productive direction. It's hard for us to watch that happen, so we pull back.

Of course it doesn't mean we're right, but it would be nice to be thought of, asked, and at least listened to. I know that  it is very difficult but it really would mean so much to have our experiences heard.

Unity only happens when everyone's feelings, experiences, and ideas are heard, (or at least, as many people as possible), but we don't have that, because so many people are, (or at least, feel) ignored and unwanted.   You can't make it happen when some people shout loudest, or think they have the 'right' to speak for others. 

Nobody does, and nobody can.

I don't claim to speak for anyone else and I never would. I simply tell you,what I'M seeing, feeling, and being told.

Please don't think that I'm creating 'divisions' and being difficult. I think the 'divisions' are already there! We are human beings, not robots! It should be okay to see things differently, but at the moment it feels like it's not. That needs to change.

It's the government we need to be fighting, not amongst ourselves. Equally though, we cannot go on pretending these issues don't exist. It does more harm than good.

 I believe that the cause is bigger than any one person, or anyone's ego, and it must come first because, when it does, we can and we will, win!   


Tuesday, 20 January 2015

The Girl in Blue (Poem)

The girl in blue
stood, in a foggy haze
Not realising she’d wandered,
On to a railway.
Christmas Eve,
Nineteen thirty three,
Would be the last one.
She’d ever see.
The night time closed in,
And the fog, thickened,
She knew not,
Where she was,
And her heartbeat, quickened.
Reaching out a hand,
To the icy air
A thunderous roar,
Said shouldn’t be there.
She tried to move,
But frozen with fright,
The last thing she saw,
Was the brightest light...

Image: 'Pinterest'

Sunday, 4 January 2015

Hello, Little Earthlings...

Hello little earthlings,
I've come from outer space,
I'm down here
On a mission,
To inspect
The human race.

Hello little earthlings,
I've been watching you,
I've come to try
And understand,
Why you do the things,
You do?

Hello little earthlings,
I've seen hungry children cry,
I'm down here
From another place,
I need to ask you

Hello little earthlings,
I see your people are at war,
I'm curious,
And I'd like to know,
What do you do
This for?

Hello little earthlings,
Who kill animals just for fun,
I wish you knew
How it felt,
I'd like to see
You run!

Hello little earthlings,
I've seen your cities choked with cars,
I've come here
And I want to know
How it got
This far?

Hello little earthlings,
You chop down beautiful trees,
I'm new here
And I ask you why,
You bring your planet
To its knees?

Hello little earthlings,
I'm from a quiet
Gentle place,
I think it's you, that should
The human race.

(Image: Google)

Thursday, 1 January 2015

Twenty Fifteen

My New Year’s resolution,
Is to keep being me.
It may seem like a cop out,
But it’s not easy!

I need to keep smiling,
Even though I feel pain,
And when I fall over,
Get up, again!

I need to stay balanced,
Keep fooling the crowd.
See things that are funny,
And laugh, out loud!

I will stay alert,
I’ll  keep my eyes on the news,
And though I get nervous,
I'll still share my views.

My New Year’s Resolution,
Is to get more fresh air,
Even when I’m tired,
There’s a world out there!

I must eat more fruit,
It’s bananas I hate,
But when I feel sick,
They’ll still go
On my plate!

I'll keep fighting back,
In twenty fifteen,
And even when I’m angry,
My language, will be clean!

Even though they might hate me,
I’ll keep telling the truth,
I will demand evidence,
I can raise the roof!

When I’m frustrated,
Thinking ‘it’s not fair’,
I have to keep doing it,
Because I care.