Monthly Archives: June 2011

Work shy? Work deprived!

In a blog post I wrote last week, I suggested that the government give monetary incentives to businesses who enable disabled and/or ill people to work, whether by providing equipment for them to work from home, or by adapting their offices. A lot of companies in cities (at least I know this to be true in London) are required to ensure that any new buildings – of which there are many – must be accessible to the disabled. But those in old buildings, particularly small, local firms, might not have the means to fund adaptations. Necessary adaptions might not be viable in each building, of course, but this is hypothetical. Or what if the government provided grants or loans to people who could set up their own business and work from home? If a loan is given, it could be paid back over a fair period, with either base rate interest, or no interest at all. I’m sure that, within a year, the government would be recompensed by a decrease in claims for ESA, IB, IS, JSA etc.

Let me be clear, I do not think any disabled or ill person should be forced into work. I do think, however, that I have too many ill or disabled friends whose talents are going to waste. Some are great at PR, some would be fantastic researchers, others are writers, or techies, or bakers and artists. Their wealth of experience, and their want to make use of it are being left to rot just because their bodies or minds are keeping them out of the standard work place. It makes me angry to think that there are less skilled and less qualified able bodied people getting jobs above my disabled/ill friends, purely down to their lack of wheelchair, absence of surgical scars, or “clean” mental health record.

So, I would really be interested to hear what adaptations you would need to work in an office, or what kinds of equipment you would need to work at home (if, like me, your health/body/mind wouldn’t suit an office). For example, screen magnifying equipment, voice recognition software, aids to allow you to work comfortably from your bed, ramps or a wheelchair lift to access an office, a specialist pen that you can hold, or adapted kitchen appliances, a mobility scooter or powerchair. If you need a medical treatment, but are being denied it by your GP or consultant, that would be interesting, too. We all know about the “Postcode Lottery”.

Costs would be great, but not essential. I’ve never been able to go to work, but I know that so many of you have been pushed and forced out of your jobs, by your health and/or by ignorant bosses and co-workers. Equally, if you’ve never been able to work, but know what access adaptations or equipment you would need to go to work, do tell us.

Please do contribute your needs and/or experiences. The government might not want to listen to us, but we can make our voices heard. Even if you post anonymously, please do give us your story. Doubters and skeptics ask us what we would do instead of these cuts – well, let’s give them something to think about!

Mel x

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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)

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A Father’s Day toast to my dad

Today is my dad’s 28th Father’s Day. He has two human children, and one four-legged, furry one called Bessie. He says he loves us all equally (!!!), but us humans know who is top dog!

I often think that dads of disabled children are overlooked, as mums are more often than not the primary care givers (to able bodied children, too). My dad often says that he doesn’t do enough for me, but that isn’t true at all. As my consultant once observed, he is one of the special ones, and that’s an understatement!

A while ago, we were discussing the issues of parenting with disabled kids. I said, truthfully, I would much rather have EB and my parents than have neither. My dad said that, though he wishes he hadn’t passed on his EB gene, he would “selfishly” always choose to have me with it than not have me at all. He said that being my dad has made him a better man, and he couldn’t imagine life without me. I’m crying again just writing that!

It has been far from easy at times, our relationship. Mostly because we are so much alike and have been known to lock horns over such trivial things as carpets (yes, you read that right). But we’ve always loved each other, and, now I’m older, we are great friends. Apart from the odd tiff! We go to football matches, the occasional gig, watch films together and quote The Simpsons at each other (“One of you ate cans, one of you ate health food. How you solved crimes, I’ll never know”). We both love cars, and I’ve got into cricket and am beginning to not hate golf, whilst sneaking my favourite bands on to his iPod, turning Dad into a David Ford, Weezer and Muse fan (he’ll never come around to NIN or ATR, sadly), and he saves Johnny Depp et al interviews for me from newspapers. I’ve realised that, though he might not remember the courses I studied at uni, and has at times added or subtracted a year to my age, he knows me far better than I knew. He can read my moods, knows how to calm me down or cheer me up, and he always helps me to rationalise my fears. Dad understands my decisions when no one else does, and can tell I need a cuddle from the way I’m sitting. He drives me here and there so that I can have a social life, drops my friends home so they don’t have to walk or catch the bus, has sat with me while I get tattooed, bought home weird things that he knows I’ll like, and sat outside Brixton Academy until 11pm even though he’ll be up at 5am for work.

Dad is still there when I’m in hospital, and comes to sit with me in Recovery after I have surgery. He doesn’t mind if I vomit blood over him, and protects me when I’m too drowsy or in too much pain to speak. When I have a blistered eye and am screaming in agony, he still lays on my bed with me and cuddles me until the Morphine kicks in. Dad knows when I’m a bipolar bear, and let’s me cry snottily on his shoulder until I have no more tears. He’s even been stuck in two lifts – one directly after the other in Great Ormond Street – with me on the theatre trolley, two panicked nurses and an almost hysterical porter. All he cared about was me being okay (including telling said porter that if he tried to climb on my trolley again – to get out of the celling hatch! – there would be trouble) and getting to my bed as soon as possible. He’s taken me and Mum to Brighton, even though he hates shopping, so that I can have a nice day after having surgery.

Dad has believed in me when I haven’t, slept in chairs on hospital wards and in A&E departments to be there for me and Mum, had more days off of work (even though he is self-employed, won’t get paid and we’ll be short of money) to be with us than I can count. He’s run from the City to Lewisham when I dislocated my knee to get to me when the trains were stopped, driven me home from hospital at 10pm because I was desperate to sleep in my own bed. Dad has chased our guinea pigs around the garden and been scratched to bits, cleaned bird cages and tortoise houses so that we could have pets. And he agreed to having Bess because she made me happy after months of ill-health (I was 21 when we got her!).

Dad has always given me the encouragement to keep my spirit going every day, and walked a mile in the snow and ice to get my medicines to keep my body going. He has driven across London to get my pain killers and sat in pharmacies for hours to wait for them, just so I can sit comfortably.

He is currently renovating an antique desk and chair, so that I can have my dream place to write, overlooking the garden, even though kneeling on the floor damages his skin.

All of these things, and so many more, make my dad the best I could ever ask for. You might not change my dressings, or know how to measure out my medicines, but you’ve loved me all my life. That’s the most important thing of all. I’m incredibly lucky to have my dad in my life, but luckiest of all that my dad is you xx

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My dad feeding a two day old me.

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