Sunday, 23 April 2017

Living In Fear -(A Repost).

In light of the Snap Election, I felt it was necessary to repost one of my blogs from 2014.

I feel it illustrates the damage that is STILL being done to the Mental Health, (and the lives) of people with a disability and illness, as a result of government policy.

Thank you for taking the time to read it.

'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'?


Friday, 7 April 2017

A Year On...

The years of subtle and not so subtle bullying I endured when I campaigned the old way (until a year ago), have had long-term consequences. Bullying always does.

I was emotionally blackmailed and subtly intimidated. Lies and rumours were spread, and people I had considered friends, believed them.

It added to the depression and anxiety I already suffer, and made me feel terrible about myself. I cried at night.

It isn't something you just 'get over' when you escape it, and the people concerned can carry on as normal, showing a different face to everyone else.
I still have my activism, although I no longer do it the way I used to, and I don't feel the same about it as I did.

I am not saying this to be difficult. I am saying this to tell people that any nastiness, lies, or attempts to ostracise a person, are just as damaging online as off it.

Actually I think it might be worse!

It impacts on 'real life' too. It isn't something that just disappears from your mind when you turn off the computer.

It causes anxiety, self-doubt and paranoia. It leaves you not knowing who to trust and in my case, it took away my love of campaigning as well.

I want people to know how much it hurts, and a year on, I still suffer because of it.

I got off lightly in comparison with some people's experience of cyber bullying, but it doesn't mean I suffered less.
Bullying is never acceptable, and the campaigning world is rife with it, from some of the people you would least expect.

Please be aware that this is happening, even as a result of something as small as voicing alternative opinions!
I am not alone. It has happened to many, who have given years of their lives to the cause.

It has taken me a year to write about this and I'm sure you will understand why I won't go into details. 

I made a decision to stop blogging regularly, and removed myself from the few groups I was still in.

At the time, I didn't want to campaign at all, ever again, and I was looking forward to being 'free', but after twenty odd years (and having started as young as I did), it isn't something you can give up easily.

Instead I've gone back to general awareness raising, as I'd done for many years before I brought my 'campaigning' online.

In the intervening year, I have been able to meet lots of new people, talk to them, and get the message out wider. I have also been able to use my creativity to help me do that, which has made me happy again.

Please remember that no matter what group it may be in, or how 'big' a name might be involved, you do not have to put up with it.

Helen. xx

Image: Google.

Tuesday, 14 March 2017

Arabesque - A Very Short Story.

She stood up to her ankles in the ford between Low Row and Feetham, and watched the water rush over the stones on the other side.

“Whose idea was this? My feet are freezin’!

“You need to live a little, Cass! You’d do better if you went in deeper”...Vicky shouted from her position, perfectly poised on one of the larger stones, where the river (it was a river now after almost a week of rain), was at its deepest.
“It’s alright for you! You’re used to this. I miss my hair straighteners and my lovely warm, comfy bed”!

“Wimp”! Vicky called back, as she jumped easily between stones, holding her arms and extending one leg in an arabesque as she landed.

“Wimp, I may be, but I’m not coming in any further...”

The water had pooled and risen up her calves.

Seeing that there was no one but her friend around, Cass hitched up her dress, and tucked it into her knickers.

She stepped a little closer to the middle, and stomped briefly on the ground. She could still feel it, reassuringly solid beneath her feet.

“Here. Watch this!” Vicky called over. Cass instinctively covered her eyes, but peered reluctantly through fingers, just in case she needed to tell the coroner what happened!

With that, Vicky turned and propelled herself into the air, almost like a pirouette, landing easily on the stone next but one.
Cass’s stomach flipped, “Could you stop it? You’re scaring me...We need to go. It’ll be dark before long.”
“Wuss”! Vicky retorted.

“Ere...” A man’s voice came out of nowhere, “You don’t want paddle int’ ford! It be the death a thee”

The girls looked over to see the shadow disappear almost as quickly as it had come.

“Oh no, it’s fine. We’re going now” Vicky replied, reluctantly stepping off her stone and making her way towards the edge.

“Where did he go?” Vicky looked around, but in fast fading light could see nothing but the shadow her friend, still waiting in the shallows of the ford.

Suddenly, the brightest light came down the hill, and was upon the ford without warning, - accompanied by the rush of water, and a sickening thud.

Vicky screamed as her eyes searched frantically for Cass.

There was nothing but headlights, seemingly frozen a short distance away.

She waded towards them, almost faster than her legs could carry her, occasionally slipping forward as the water pushed against her.

Calling for Cass again, Vicky was blinded by the beams and shivering as she reached the place near to where her friend had been standing.

She didn’t even look up at the face of the man who stood crying in front of her.
“Where is she...Where IS SHE?!
Vicky asked through sobs, already knowing and dreading the answer.
“I tried to stop...suddenly she was there and ...I couldn’t...she didn’t....The brakes”

Within minutes Vicky found herself sitting in the back of an ambulance, wrapped in blankets and tin foil. She watched hopelessly through tears, as the stretcher carrying Cass’s body passed the door.

For the rest of her life, she would never forget today. The blue lights of the ambulance reflecting in the water, the thud, and the sudden searing cold and the incredible guilt that held her heart

Neither would she ever know the identity of the shadow that had forewarned them, a little too late.

Image: Google

(Please excuse any formatting issues)!


Saturday, 11 February 2017

For Sylvia -And Her Bell Jar.

‘I've read 'The Bell Jar' twice. I love it.

It helped me realise I wasn't alone in some of the feelings I felt, (and feel) when the depression hits.

I can get through it though. I always do.

I wish Sylvia (Plath) had believed that, because what she had to say about mental illness - about lots of things - was important.

I wish she had written more novels, because I love her descriptions and insight.

It takes a lot of guts to write with such honesty.

Sylvia had more guts than she thought she did, I think.

To me suicide isn't 'the coward's way out' as many describe it.

It's moments of desperation all strung together, to make you feel like you are in a deep black hole that you can never get out of.

Sense leaves you for a while.

Pain and desperation take over, and you just want it all to stop. That's what happened to Sylvia.

Things do get better though. For me they did.

You just have to find the strength to hang on, and take one day at a time.

RIP Sylvia, and as this anniversary of her death comes and goes, I for one, think her novel is a masterpiece and I'm grateful for it.

Image: Google.


(Please excuse formatting issues. Still trying to solve them).

Wednesday, 1 February 2017

A Problem Unseen -(Spatial Awareness and Me).

I've been asked what it is like to have spatial awareness problems?

Spatial awareness is the ability to judge gaps, distances, depths, and spaces correctly.
Due to my Cerebral Palsy it is one of the (hidden) things that I find difficult.

Rather than being able to see (and judge) those things, I often have to do it by memory -which isn't a problem if I am in familiar places.

It becomes a problem if I have to go down steep unfamiliar steps, kerbs or gaps. My body automatically braces and I panic, until I've taken the first few steps.
Something like stepping off a train onto the platform is a good example to illustrate the problem, and it is compounded by knowledge of people behind me, who might be in a hurry!

Most people judge the gap between train and platform instinctively. They take such things for granted.
To me, such a gap can appear wider or narrower or deeper than it really is, so I (again) become very conscious of it. Someone has to say to me, 'you're nearly there'...or whatever.

This is obviously a problem if I've had to get out of the wheelchair because a place isn't accessible IN it!

I can walk (a very short distance) on my crutches, (and not at all without them), but it isn't very long before I am in agony, especially if I've had to stand still.

Another example is those horrible stairs with the gaps in, where you can see straight down through!
Hopefully you will be able to imagine why they are difficult.

I have to judge the distance of the gap between steps, but it will be distorted by the gap between me and the ground.

Often such staircases are carpet free, so add to that a fear of slipping!

Another problem is unfamiliar or narrow doorways. I often hesitate before I go through them because I'm trying to judge the space, between me and the door or door frame.

Friends joke that I'm the only person they have ever met that can trip over a door - and I have!
There have been many occasions when I have misjudged the space and one of my crutches (or feet) has caught on a door, and I've fallen over!

In my teens, I was assessed as fit to learn to drive. I was surprised, but knowing how much freedom and independence it would give me, (-VERY precious things, when you gave a disability which compromises them, and another thing many take for granted), I decided to try. I was desperate to do it.

I took my lessons in a specially adapted car, as I am unable to use the pedals.

I found judging the spaces and distances on the road very difficult, almost nightmarish, and as a person who already suffers from anxiety and depression, there was a lot if added stress.

There were some lessons when it was all perfect. Somehow I'd learnt that space in the road. I was calm and able to drive very well, and then the next lesson I'd be unable to judge at all, and I'd end up trimming hedges for the council!

I grew to fear my lessons and feel like a failure even more than I already did. I was often physically sick beforehand, but it was so important to me that I did it and I had a wonderfully patient instructor!

 One day, before a lesson, I just started to shake and cry. 

After discussions with my family we decided that it just wasn't worth it...and we left it open that I would call him, if I ever wanted another lesson. It never happened.

People don't realise the non visible aspects of having a disability or illness. 

They often don't think about the unseen difficulties or the energy everything takes, but just because something isn't visible, it doesn't mean it isn't there and it is exhausting, every single day!

Image: Google


Monday, 2 January 2017

They Hate You Because...

They hate you because
You refuse to compete
And you still beat them,
Hands and feet.

They hate you because
Where they've fallen apart,
You've stayed strong
And not lost heart.

They hate you because
While they shout and scream
You go your own way
And work for your dream.

They hate you because
While they bask in limelight,
You do the work,
You keep up the fight.

They hate you because
While they scheme and swear,
You get what you want
With reason and care.

They hate you because
While they just hang on,
You will still be there,
When they are long gone.

Image: Google