Local MP Ignores the Plight of Disabled Constituents - My Response.

Dear Mr Rees –Mogg,

I was very disappointed to find that you and one other MP voted against an inquiry into the effects of the government’s Welfare Reform policies.

As a disabled person, long time disability rights activist, and one of your constituents , I find your actions heartless and short- sighted to say the least.

While a hundred and twenty five of your fellow MP’s (finally) voted for an inquiry into these damaging, divisive, and compassionless policies, you wanted to ignore them.

You wanted to ignore the plight of disabled people, 10,700 of which (at last official count)  have died after being wrongly found ‘fit for work’ by ATOS, many through suicide.

http://statistics.dwp.gov.uk/asd/asd1/adhoc_analysis/2012/incap_decd_recips_0712.pdf

You wanted to ignore the devastating impact of Bedroom Tax, which has contributed to a rise in homelessness and hardship across the country.

You wanted to ignore the many families who can no longer afford to put food on the table as a result of the brutal benefit sanctions your government has imposed on some of the most vulnerable in society.

You were elected to represent all the people of Bath and North East Somerset, both the successful and the disaffected, and as a disabled person, you have failed me, and others like me.

May I take this opportunity to remind you that many of the benefit claimants you have chosen to dismiss, are in fact ‘in work,’ but they need the benefits to top up disgustingly low wages.

Contrary to what your government may have the rest of society believe, being on benefits is not a ‘lifestyle choice’. It is a heartbreaking necessity for most.

I have had Cerebral Palsy since birth, and as you know when I spoke to you on the phone (virtually in tears), I would give anything to live a ‘normal’ life. I’d love to be able to be a mother and manage a full-time job, but because of my disability and related health conditions I simply don’t have those options.

It breaks my heart to know that the government is systematically punishing, victimising and destroying the lives of people like me. 

It is something that damages my faith in democracy. It is depressing to know that my MP lacks the empathy and understanding (despite the ‘Christian’ virtues he always espouses) to at least support an inquiry into where the policies are hurting people in the name of a conservative ideology of dismantling the state.

Disabled people and those at the lower end of society are being ignored, lied about and blatantly bullied by the government. But it is no surprise that those like yourself who are staunchly very much on the right wing would not want those things exposed in any inquiry.

Yours sincerely

Helen Sims

Disability Rights Campaigner

Full Transcript of debate (from Hansard), including vote results.

http://www.publications.parliament.uk/pa/cm201314/cmhansrd/cm140113/debtext/140113-0003.htm#14011328000001

This letter was sent to the local press on 14th January 2014,

Please help me by sharing it widely.

#jrmfails

Image: Google

(Somerset Guardian Article - of this blog)

Abandoned - Why I Love Derelict Buildings

People tell me my love of derelict and abandoned buildings, (well any place that's abandoned, really) is strange.


I think people who don't love them are strange!


What is there to love?  Everything! It's the history, the peace, the mystery -the calm, and lots more besides!


Who was the last person to stand in here? Who was the last person to lock up and go?

Who put such and such on the floor and left it there?


What was this place like when it was 'alive' with people?


That's another thing. People make the mistake of thinking that a deserted building is dead and meaningless. It isn't. Even the decay process itself is beautiful, if you choose to see it that way. All those changes, colours, textures - and once again, the history.


What gives anyone the right to destroy something that has been there so long? Improve it, bring it back to life. Don't make it disappear, then act as if it never existed. Don't replace it with something ugly and modern, just because you can make money from it!


Money isn't everything!


If we don't protect these places, and protect our past, how can we learn from it?


I'm not saying that we must keep everything. Some things have to go, especially if they are dangerous, or whatever.


The point is, why let them get to that state?


Maybe I'm being too much of an idealist. We all know that money is a big issue. They say 'money makes the world go round' - but it doesn't have to - not always!


All I'm asking is for a bit of thought when you walk past one. Let your imagination run wild a little. Then, I hope, you will see what I mean.

I've lost count of the windows I've peered through, and the places I've wished I could get inside, like some do. With my difficulties, I can't of course, - but I can dream, and I can do so much wonderful research. 

There are so many beautiful pictures online, taken by people who have the guts to squeeze through gaps, under things, and over things, so that these lost treasures can be documented, shared, and kept,( in a lot of cases long after the building itself has been destroyed). 

 It's not always safe and it's not always legal, but urban exploration (or 'urbexing' for short), is a growing phenomenon, and I think it's a necessary one.

I can't describe the feeling I  get from looking at them. I get excited, like a kid in a sweet shop! I feel light, and happy.

It gives me a buzz similar to the one I get from writing, or singing.


These places are special. They are frozen in time, and they belong to a world that doesn't exist anymore.With everything around us changing so fast, and everyone struggling to keep up, shouldn't we be keeping pieces of our history?


Once they are gone, they cannot ever be replaced.


People loved these places once, and luckily, some of us still do.

 For more information search online for: 'urban exploration,' 'abandoned places,' 
'derelict buildings' or 'urbex' and see what you find. If you're anything like me, you'll be there for hours!


Image: Google!


#helenswriting

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.

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

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.

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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.

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)