Archive for May, 2012


Its funny isn’t it… Several quite disabled people get together and decide to challenge the government, about a new welfare bill and find themselves at the centre of not only a media frenzy but a disabled frenzy as hundreds and i mean that literally… Hundreds of people with disabilities and carers of people with disabilities, supporters and care workers, clamber to find a way to support this Herculean task, of the kind you only read in stories of the under dog, taking on the giant… But what becomes of this momentum? After the initial phase… well the next crisis hits… with a vital engagement to try to prevent the worst excesses of ignorance and bad policy  hitting the sick and disabled, in a way that will throw thousands in to poverty and leaving many  thousands of seriously disabled people, who, without the funding to buy the adaptations or equipment they need to survive or work.
But the challenge is met and we await the results with a sense of fear that nothing will deter the juggernaut that’s threatening to run us down… And so the question comes at first quietly but slowly builds… What comes next where is Spartacus..
Well, that’s the next big question… We cannot wait for the next crisis to brake over us we need to preempt it, to regroup and to lead the charge.
Many have been saying why is the Spartacus Community so quiet…is it over are they done?
I know that all seems quiet on the Spartacus front but something new is growing and evolving… A new way to engage in resistance. The regroup has begun and to many it seems arbitrary in the light of such a mammoth task but from small seemingly unimportant things, wars are won.
The rally cry is begun but you need to pay attention to hear it… Sometimes a whisper is more powerful than the roar…

Today see’s the another tiny step in that regroup… Today we see the launch of the new more interactive, more vital Spartacus Forum… Come help the whisper become a ROAR… Alone we whisper together we SHOUT! … Dxxx

http://www.spartacusforum.org.uk/forum/index.php

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There are good days

Recently it has to be said there hasn’t been many good days. Day after day it has seemed of late that all there is, is another press release that’s depressing if not down right insulting.

These press releases are incessantly doled out day after day like a mantra for the tax payer with the sick and disabled baring the brunt of the accusations alined against us like the waves in the sea, relentless and seemingly eternal.

Its like all the problems in the world, have been squarely lade at our feet. The inference being that we are some how responsible for the economic crisis, by being THE burden on the state and that tax payers money is being spent on the less worthy.

With the likes of Ian Duncan Smith who seems to have had some sort of brake from reality as he finds new and more and more ridiculously extreme way to insult us  as well as instigate hate against us. And the government finding as many ways to curtail our freedoms and choices as they can…

I didn’t really expect to have a good day…

So why was today different, well firstly Kaliya Franklin a member of the Spartacus team that wrote the ‘Responsible Reform Report’ was nominated for the Orwell Prize political blogger award. It is always a pleasure to hear of some one you admire getting the chance to be recognized for their work. And it is doubly good news when that person is a political disabled blogger. As disabled activist go Kaliya is up there with the best.

And secondly the message that the Work Capability Assessment is a broken system that does more harm than good, seems to have taken a step forward today. It might be a tiny baby step forward but I am airing on the side of optimism today because it feels like a good day. So what happened today to create that tiny step?

Today the UK GPs General council voted unanimously to have the WCA test scraped effective immediately. ‘GPs have voted unanimously in favour of scrapping the controversial work capability assessment (WCA), the test that determines who is eligible for sickness benefits, to prevent harming “some of the weakest and most vulnerable in society”.’ http://www.guardian.co.uk/society/2012/may/23/gps-work-capability-assessment-scrapped?commentpage=2#comment-16273282 From an article in the Guardian by Amelia Gentleman. Who this evening was awarded the Orwell Prize for Journalism.

Congratulations both of you…

So for me at any rate today 23/05/12 seemed like a good day all things considered, and i hope it was a good day for you to. And as it is now the following day its time to be off to see what this new today might bring…

Goodnight All… Dxxx

This blog post is a little different, its more personal and I hope insightful…

This post had been inspired by four things, firstly, and the easiest is, its FM ME/CFS international awareness day. The second was a deeply distressing and hopeful post by Sue March on her blog Diaries of a Benefit Scrounger about her up and coming serious life threatening surgery, entitled Surgical Roulette.( http://diaryofabenefitscrounger.blogspot.co.uk/ )

Thirdly an article on the Daily mail website by Sonia Poulton about Me a very insightful and very much needed exposure of this governments and the NHS’s denial and neglect of the true severity of ME. The article was called All in the mind? Why critics are wrong to deny the existence of chronic fatigue.            ( http://www.dailymail.co.uk/debate/article-2141230/All-mind-Why-critics-wrong-deny-existence-chronic-fatigue.html#ixzz1ueIZmHva )

And finally a blog post by Beth Morris in her fabulous You dont Look Sick blog entitled, Is it Psychosomatic-then. Which looks at why we, meaning long term and chronically ill people tend to make light of our health issues. ( http://but-you-dont-look-sick.blogspot.co.uk/2012/05/is-it-psychosomatic-then.html )

So where to begin…

Well,lets look at today, what am I supposed to be doing… Well we are out of bread, milk, and butter, so normally my ever present ever helpful hubby would pop down the nearest shop or cycle to the supermarket and get us what we need… no problem you say how does that differ from other folks? Well for the most part it doesn’t although it would be nice if i could to do it myself, but if i do that then i may not get anything else done like plant the runner beans my four year old brought home from school this week with instructions to plant it and record its growth… like i haven’t got enough jobs to do… or start to decorate his bedroom… or try to fix my now defuncked washing machine…

But all of this is besides the point because my lovely wonderful hubby has a cracked the cartilage in his knee and has some other problems with his leg and cant really help me do anything much… so the cared for becomes the carer… now normally caring for ones partner is a privilege and something that you would expect to do and I feel no different about that than others, however I am aware that, that is going to require me to do all the things that he normally does for me, that he does to help me stay well ish… as well as everything he cant manage for himself. And that will make the precipice i live on trying to prevent a flare, doubly difficult to teeter on

So how am I today and am I up to the challenge…

I woke up this morning with that feeling you get when you have had to little sleep you know the one, your eyes feel like they are full of sand and your brain feels kinda shrivelled like you haven’t had enough fluid, you’ve got a small head ache that you know is going to become a monster any time now… I feel so tired that i could, if i felt it would make any difference and or do any good, cry my heart out, but quite frankly I’m to tired to summon a single tear. And I’ve had about ten hours sleep… Additionally my back has been in spasm for about a week, it’s the lower back muscles that help you stand, sit, walk, breath… yep and nothing touches it because painkillers dont work with FM. My knees are burning and have been for weeks, and I have a condition in my feet that means walking feels like I’m standing on glass all the time… My shoulders are all tensed up from the stress of just copeing day to day which will trigger a migraine like Fibro headache before much longer, and I’m aware that this has and could go on for weeks before the surgeons decide if they are going to sort my partners problems out, that is of course after he has to have some special scans that require him to become radio active and consequently cant be near our son for twenty four hours so I’m on me own mate…

But this is not a poor me post, well at least not only a poor me post…

I generally feel like all I’m up for is lying on the sofa snuggled under a blanket watching something on telly that requires the few brain cells I have that aren’t either dead or starved of blood, to be able to digest what I’m watching. But and it a big one (no snickering in the back there) I cant do that today nor have I been able to that for a very long time, having a four year old means you cant do that, least not since he stopped needing an afternoon snooze… He doesn’t understand that mommy is to tired or in to much pain nor should he, so I battle on and it is a battle, it’s a full time job just getting up trying to accomplish anything… and retain some self respect…

And this is the crux of the matter, self respect I think its why even on days like today I reply to easy enquires about how i am, with I’m Fine… the magical I know your not rally asking just being friendly but will do the eye roll if I actually bother to try to explain it… eventually you become so disenfranchised by this behaviour that you dont even tell your closest friends, if you still have any, or your new friends that have the same problems if you’ve made some (thank god for social net working) because you have become super sensitive to the I’m asking but I dont really care and will be embarrassed or even not bother to contact you again if you insist on giving me a litany of your health problems and their knock on effects in you life. 

Our society had become insensitive, and we have lost our compassion for people who are having a harder time than us with health or any other kind of problem. We are, and I am generalising here, a hedonistic society only out for number one… In many respects I agree with Ian Duncan Smith that we as a society need a cultural change (http://www.telegraph.co.uk/news/politics/9255348/We-need-cultural-change-to-get-true-welfare-reform-says-Iain-Duncan-Smith.html ) but unlike him however, I do not think we need to become less compassionate but more so.

How hard is it really to spend half an hour of your time listening and trying to empathise with someone in horrendous pain and fatigue when you can walk away scott free and go back to your lives unscathed… is it really such a hard thing?

And what of us the sufferers is it really so hard to tell the truth, to be bold, be brave and risk the loss of someone’s compassion by being truthful and living in the moment…

Is it harder still to tell the truth because for those few moments it makes it real… THIS IS REAL AND I DONT WANT TO ADMIT I’M STRUGGLING TO COPE AND IT SCARES THE CRAP OUT OF ME… We should shout it, be un-afraid, Be honest if we want people to really see us, we cant show them a disguise and hope they can see through it, we must confront our fear and confront their lack of compassion head on, with out the mask… And I am talking to my self here as much as anyone else and yes I know it is hard to tell the truth… Dxxx

Fibromyalgia Association UK http://www.fmauk.org/

 

Hello all, well this is a surprise my first guest blogg… please welcome Helen Sims… and her piece…

Spartacus and Me

Dealing with hardship, discrimination, prejudice and unfairness as a disabled person isn’t new. Dealing with it on this scale at the hands of our own government is. I became involved with what is now the Spartacus Campaign before the ‘Responsible Reform Report’ was even published although I was not involved directly on writing it.

I knew something was going to happen. I knew something had to happen because there were a lot of frustrated, angry, isolated and frightened people out there (myself being one of them) that were facing uncertain futures as a result of the Coalitions plans to cut benefits.

On top of that, the negative press coverage, the governments ‘scrounger’ rhetoric had already begun and it was hurting me. That is why I joined as many disability groups and networks on Facebook as I could manage to keep track of.

I wanted to know if I was alone in feeling victimised and persecuted just because I was unfortunate enough to be born with a physical disability that means I cannot walk or even stand unaided. I was sad, but also relieved to find that I was by no means alone.

In those early posts, I discussed my frustration, anger and pain at what had been thrown at us. I was assured that something was happening, so that we could, at the very least have our say. I felt better.

Campaigning for Disability Rights isn’t new to me. I have always had a strong sense of injustice and a desire to do whatever I can to make things fairer.

As ten year old, I wrote to the then Prime Minister John Major to voice my concerns about the cuts in the Special Educational Needs budget.

I had recently transferred from my beloved ‘special school’ to a mainstream primary school and I was struggling to settle in. I was ‘different’ there. At my previous school I was just one of many people with a disability. I had been bullied there for a while, granted, because I frequently got my work done early and was able to spend my time writing stories or helping my friends.

The bullies didn’t like that, but it was settled by the time I left so it broke my heart to leave, but I know my parents made the right choice for me.

When I heard about those cuts, I remember being outraged and panicked for the friends I had left behind. How would some of the worst affected children cope if they were forced into a mainstream school situation, without the care and help they needed? Society didn’t cater for us, and I knew it.

Propelled by some unknown force within me, I sat and wrote my letter. The next day, my Mum posted it.

I’ve been writing letters about various different disability related issues ever since. Some have got me local press coverage and support, some have been left unanswered.

For me, it is the latter that says it all. It has gone on happening but I never dreamed back then that I would feel as ignored, victimised and hurt as I do now and that’s why joining what became Spartacus is so important to me.

When you campaign alone, it can seem like you’re getting nowhere and I was tired of being ignored. As the pressure and worry of being reassessed and possibly losing my Disability Living Allowance began to ‘get’ to me, I sought others in a similar situation – mainly to reassure myself that I wasn’t being paranoid! I wasn’t!

When the ‘Spartacus Report’ was published, I worked to promote it, writing to Lords and MP’s and sending it everywhere I could think of. I had an overwhelming feeling of taking some power back and regaining control in a situation that was against me.

Had it not been for Spartacus and the wonderful, warm and supportive people I have met, I probably would have given up campaigning altogether.

I was beginning to feel so alone in the struggle and the relentless attack on us by the media and government, even at that point was beginning to erode the fragile self esteem I have fought for. It still is, but I am not alone anymore.

Cerebral Palsy does not make life easy. There is constant pain as well as lack of mobility. There is exhaustion and difficulty every day. I want more than anything to be a mother, have a job, and live a normal life. I want to do the things others take for granted, but I don’t have those options and it’s not my fault.

Spartacus has given me a sense of purpose that I felt was somewhat lacking before. Even though I have a wonderful marriage and my writing, there were so many pieces missing.

Spartacus and the online family I have found through it is so important to me now. It’s become so much more than the ‘Responsible Reform Report’ and so much more than I ever thought it would be. I will always be grateful for that.

Blogging Against Disablism Day…

http://blobolobolob.blogspot.co.uk/2011/05/blogging-against-disablism-day-2011.html

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Hi Folks, It’s blogging against Disablism Day! So today I decided to think about…

Holding the Media to Account…

When I think of the thing, that for me, has probably been, one of the most marked changes, in the UK, other than the obvious benefit changes, that have wreaked havoc among the sick and disabled communities, It has been the way in which disabled people have been portrayed by the media.

It is interesting that where once upon a time the media’s attitude towards disabled people, was one of considering us  something that at best, they had a duty to protect and at worst, something to be pitied, has now changed to consider us something to revile…

Week after week we are now subjected to a torrent of abuse, about how we are a drain on society, how every single claimant of sickness and disability benefits, are accused, by simply applying, or being awarded disability benefit ,of cheating, society and the government, elevating the ‘law abiding,’ ‘Tax Payer’, to the point where they seem to think they are better than us… Because disabled people aren’t ‘Tax Payers’ are they?

Not only does this really annoy me and make me mad but it also infringes on our human rights… Branding 3.2 million people as something less than honest, should be sending warning signals all over the world. Not that I doubt, that there are benefit cheats among us, the 0.5% fraud rate of disability benefits prove that there are. But this new hounding of any one that has the temerity to step out side their front door and god forbid have any kind of fun, is going beyond inclusion and smacks of disablism…

But our media are clever, they never actually come out and say it, but use headlines such as 37% of all Incapacity Claimants ‘fit for work’ the inference being that all these people where somehow cheating the system to gain money they had no right to. When in fact the assessment criteria has been changed to exclude people, so consequently people are being excluded.  I wont repeat figures here that I have already given in my previous post but we know that this figure does not include the percentage of successful appeals, which will reduce the ‘fit for work’ figures dramatically…

Alongside this, we have to put up with articles written by such ’eminent’ journalists (ok I was trying to be funny) as Ron Liddle and his now infamous article entitled ‘Pretend disabled really are sick’ which started with the statement My New Year’s resolution for 2012 was to become disabled. Nothing too serious, maybe just a bit of a bad back or one of those newly invented illnesses which make you a bit peaky for decades – fibromyalgia, or M.E.” which as a Fibro sufferer made me really… cross.

And they simply retract any statement or article that gets to hot, like that makes it all better, rather than facing the full extent of the law, for inciting hate against disabled people…

So what do we do about this how do we start to try to stem the tide…

Do we stand like King Canute and shake our fists at the coming waves? Demonstrating our impotence in the face of such an onslaught or do we beat them, at there own game? Of all the Bloggers who blogg about health, disability and sickness their must be a few whose words could reach the masses, we need to grow a literary voice, that goes beyond the internet, we need to create more good journalists from with in our ranks to stand, with journalists like Sonia Poulton, among others,who has been fighting alongside disability campaigners to get the truth about what is happening to the benefits system,out there, with articles like, ‘This  is not wartime Nazi Germany and Cameron’s attacks on the vulnerable and needy must be stopped…http://www.dailymail.co.uk/debate/article-2102484/This-wartime-Nazi-Germany-Camerons-attacks-vulnerable-needy-stopped.html a comment on Workfare for the sick and disabled. I’m not saying that there aren’t any good disabled or disability writers, just that there aren’t enough…

We need to fight this war on the media front… Because if we can’t convince the public that we are not the scroungers we have been portrayed as, we will never win the war…

But events like today’s Blogg against Disablism proves there is a need, and shows us where some of those writers may be found…. Dxxx

Blogging Against Disablism http://blobolobolob.blogspot.co.uk/2012/05/blogging-against-disablism-day-2012.html

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