Tag Archives: benefits

Here comes the hurricane

It’s 6.04am, and I’ve been awake for about two hours. I’m laying here in my bed, listening to David Ford (“So close your eyes and sleep” – I wish) and writing this in the hope that I’ll suddenly overload my desperately tired brain until it gives in and switches to standby. My legs, thanks to twenty-five years of nerve damage in my feet and as much joint damage in my knees, and despite making me pump large doses of Gabapentin – supposedly meant to make my extremities behave – will not stay still. They jolt, shake, compel me to wave them around, pound them against the pile of pillows beneath them, cycle them in thin air and pace silently around my less than spacious bedroom. I once read some know-it-all stating that “Restless Leg Syndrome was invented by drug companies to encourage idiots to buy placebos”. Right now, I would like to aim one of my involuntary kicks at his bollocks.

Okay, maybe, as Mr Ford is quietly singing into my ear, I should “cheer up, you miserable fuck”, but some days – especially in the early hours – the frustrations of being ill and disabled are harder to bear.

As I lay here, yawning and fidgeting, I have Philip Davies MP on my mind. He and his ilk have been making women and men writhe and scream, cry out and sigh in their beds for years now. Purely out of disgust, fear, stress and desperation. We know that this government, and so many others, will “sell out our kids for a tank full of gas…let the economy crash”, to keep the working classes, the poor, the ill and the vulnerable in their places. Right at the very bottom of society.

Mr Davies thinks that, to give myself a chance of employment, I should agree to work for less than the minimum wage. Maybe he is right that, wrongly, a potential employer would choose a less experienced or skilled but able-bodied person over me. And to be honest, right now, I wouldn’t blame them; as I’ve written before, I’m hardly a desirable employee because of the way my body plays tricks. But there are so many ill and disabled people who are, and whose expertise and skills are going to waste. Why not give incentives, if that’s what it takes, to businesses who enable disabled people to work, whether in the office or at home? Over the course of a single year, that expenditure would surely be counter-balanced by a reduction in benefit claims. I have disabled and ill friends who could start their own business, to be run from home, if they were leant a start up grant, to be paid back over a fair period, with base rate or no interest. No bank will give a benefit claimant a loan, but they aren’t vilifying us. We might not function – physically and/or mentally – the way we want to, but we are people, and we deserve the same rights as the rest of the population. So, Mr Philips, “will you just laugh and say I’ve got it wrong? Will you tell me what the fuck is going on?”

Every day we hear another story of another calamitous cock-up by ATOS. How hard is it to understand that putting people with serious health problems under a huge amount of pressure and stress will only make them worse? It’s easy to imagine them saying “heart problems? Let’s give you a cardiac arrest! Epilepsy? We want to see you fitting on the floor! Emphysema? Cough up half a lung for us! Then we’ll believe you”. Of course, we need to do what we can to ensure that the system isn’t abused; no truly ill or disabled person wants to see some idle cretin making a career out of the lives we never wanted, but not at the expense of the vast majority of people who do need help. How can these “tests” by ATOS be defended when people with late stage cancer are being told to return to work? It’s becoming clearer by the day that “‘This train was armed for collision” because “‘clever’ men know all that and all this and they will talk and they will talk, but they don’t fucking listen”.

Oh, Mr Cameron, “what a model of Christian behaviour, preach on with the message of ‘go fuck thy neighbour'”. Let’s be honest, we all expected this from the Tories, but having been kicked in the stomachs by the Lib Dems, Labour are coming to spit on us as we lay on the ground, coughing up blood. You see, “I believe lots of those calling the shots have no respect for the rights that we’re given….and I believe lies cost God knows how many lives, while some rich people made more money”.

Dear readers, “I wouldn’t have it all easy, so come on, let the hard times begin. Let’s kick through the hole in the wall of the mess that we’re in”.

“This is a call to arms”. Come and fight with us.

I’m off to get some sleep…if I’m lucky.

(Words in quotation marks are lyrics written by David Ford)

2 Comments

Filed under Disability, People Power

Fit for nothing, but good for something!

Once again, the media – in all of its many guises – is getting its knickers in a twist about us layabout disabled scroungers, refusing to work and laughing at the saps who do. The Daily Mail even reported that people have been awarded Incapacity Benefit purely because they have “blisters”! How ludicrous, eh? I mean, it’s not like having blisters could affect your daily life, or leave you dependent on your family and carers, permanently disfigure you or carry off nearly thirty of your friends, or… Oh…wait a minute….

I’m not in the habit of feeling sorry for myself, and I’ve never thought “why me?”, but when these stories hit the press, I can’t help but curse my body for being useless in so many ways. You see, until a few months ago, I thought that maybe this year would be the one where I would find a job in an office that could accommodate me and my needs. Then I started a personal project in earnest, and the reality of the situation my body has put me in really hit home.

Having been given such a lot of help and support by DEBRA UK over the years, I wanted to give something back, other than giving talks and doing interviews. Not that those things don’t help or have their merits, but I wanted to do something more. When I a) became more involved with my burgeoning love of vintage clothes et cetera, and b) realised that finishing my Masters degree was becoming increasingly unfeasible, I decided the time had come to organise my very own fundraising event for DEBRA. How hard could it be? A few phone calls, a few emails, maybe some letters and hey presto! a event is ready to be enjoyed by all. Now, only a few months on, my naivety astounds me, and it makes me realise how much I’d been denying the true impact EB has on my life.

Firstly, making phone calls: I can only hold the phone with my right hand, the thumb of which repeatedly blisters and then becomes raw. Holding the phone either aggravates the blister, or causes the dressing to ride up and leaves the phone handset covered in wound “ick” (technical term there!). That would be lovely in an office, wouldn’t it?! Then there’s my mouth, which, when blistered, causes me to sound like the Elephant Man. Try phoning a company for a donation when what they hear is “El-oh. Ahm or-ha-ni-in ah fuh-ray-in uh-ven”, and that takes an age to say. If those two aren’t a problem, there are always the oesophageal spasms which suddenly take hold, leaving me gasping for breathe and rigid with pain, unable to speak. Or, there’s just the absolute fatigue that comes with chronic illnesses. Thus, my marvellous mum has done the majority of the ‘phoning around for me, including several hours when I was exhausted on my hospital bed and imbibing opioid pain killers. Are you a business owner who wants to employ a twenty-five year old and her mum to do one job? If so, we’re your women!

Emails aren’t without their difficulty, either. Having deep ulcers at the tops of my thighs makes sitting upright very painful for me, and so I have to lean to either side alternately. Try typing on a laptop, which is balanced on your hip and making you very hot, with your osteoporotic spine twisted around and see how much you get done. That’s if my eyes aren’t blistered, or the brain fog isn’t so dense that I can’t remember how to explain my own disease. If anyone knows a company where sending an email saying “I’ll get back to you when my bum calms down” is acceptable, please let me know!

Arranging meetings is like something out of Challenge Anneka (look it up, kids). I can’t imagine important meetings at a work place being deferred because I’m having to lay with my legs in the air to ease the pain, or because I’m having my oesophagus stretched again, or have a Colitis flare-up (wherein my mum has taken phone calls and passed messages through the bathroom door). I could only do that with my event because I’m organising it with friends who understand my situation, and know that things can change at a moments notice with me. It is far easier to find friends who accept the “EB permitting” caveat than it is a job or employers.

There is also the issue that the vast majority of the organising of the fundraiser has been done either at my home or from hospital rooms whilst I await surgeries, usually with me in bed (mine or one at St Thomas’ Hospital) wearing my pyjamas. I also send many of my emails during dressing changes, even though the distracting pain can cause errors in my messages, or late at night when my discomfort is keeping me awake.

I’m sure this sounds terribly depressing and negative, yet despite all I have said here, the continuing experience of pulling this event together hasn’t been a horrible one. Vastly because it has proven to me that the majority of people are not just good, but kind and generous beyond my imagination. So many people, especially those I have met via Twitter, have put their hearts into helping me and my friends to help DEBRA. And I have made friends, wonderful ones, because of this; friends who I had never met until they heard about my event, but who have given so much time and love to it. There are independent crafters and jewellery makers who have taken the time and effort to make pieces for us to raffle, small businesses who are giving to us even though we are in austere times, and who have pledged more support than I could have dreamed of. A Forties style singing trio, who emailed and asked if they could play for us for free (then thanked us for saying yes!), and bloggers who have offered to write about it – including The Broken of Britain’s Lisa J. Ellwood, even though she has tons going on and should be resting! – sharing their expertise and readership with us.

I’ve also encountered several emails and tweets with messages like “I know it’s not as bad as EB, but I have…”, with revelations of what people are living with. For the record, the severity of one illness doesn’t negate the difficulties another person is experiencing, but it has widened my circle of “differently abled” friends in the best way – not purely because we have health problems in common, but because we have shared interests.

While this project has shone a spotlight on my limitations, it has emphasised knowledge my heart has been trying to convince my brain of for some time:

1) Though I may not be fit for work, or good for employment, I am good for something. I just need to be able to pander to my body when it demands attention – which I couldn’t do in normal employment. Having a disability does not mean that I cannot contribute, it just means I can’t contribute in the way the majority of the media has decided I should.

2) Britain is not broken, but full of wonderful people, in all classes, ages, races, religions, jobs and bodies – the only thing that is broken is the view the government has of the people it should be serving. The minority of the “bad” people is so small, it’s laughable that the government and media waste their time working themselves into a frenzy over them.

So I dedicate this to all of the amazing people I now know – you haven’t just helped DEBRA, you’ve helped me, too.

2 Comments

Filed under Disability, People Power

Superb Supporters!

Since One Month Before Heartbreak posted the link to my blog, early on Sunday morning, I have been astounded by the huge amount of support people have shown. There already existed a great deal of solidarity within the disabled community, but the past two days have shown me that there is a lot of concern in the general public at the injustices being inflicted on disabled people.

Comments on the blog, Twitter and Facebook have all suggested that the government and the right-wing media aren’t hoodwinking people as effectively as they had hoped; our stories are being read, believed without accusations and scepticism, and are resulting in outrage at how disabled people are being treated. That is the way change happens, and that is how battles are won. As Benjamin Franklin rightly said…

“Justice will not be served until those who are unaffected are as outraged as those who are.”

To all of you who have read, commented, shared and supported my story and others, you are helping us on our journey to justice. You are helping those who do not have a voice to still be heard, and to be given the rights they deserve in life.

I cannot express how wonderful your support is, and how much it is appreciated. All I can do is thank you, from the bottom of my heart, and ask if you might continue to stand alongside us. The more voices that call out the same message, the harder it will be for the government to ignore it.

With much love and gratitude,

Mel xx

Leave a comment

Filed under Disability