Category Archives: Disability

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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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.

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The Brain Fog

I think I’m the only disabled person I know who doesn’t refer to themselves as a Spoonie. It’s not that I have anything against the term, and I can understand why people do use it, it’s just that I never have. Probably because I’m too lazy to explain the concept to people, tending instead to say “I’m in constant pain and my body is working harder than most, both of which make me very tired”. Subtext – I’m not lazy, and I would love to have more energy, so please take your judgement elsewhere!

The term Spoonie hadn’t even come to my attention until I joined Twitter, and started speaking to other disabled and ill people about in less than fully functioning bodies. I’d always had contact with other EBers, but if we discussed our health at all, it was always specific to EB and it’s complications (blistered eyes, blocked oesophagus etc). By speaking to my Twitter pals, especially those linked to The Broken of Britain, I started to understand life with a disability more than I ever had before. And though I don’t call myself a Spoonie, one term took a figurative leap off of the screen and shouted “Yes! I actually exist!” – the Spoonie brain fog (search for #brainfog for evidence).

I don’t remember having the brain fog until the end of my first year at university, though I’m sure I had phases of it before that time (my brain has done a fine job of editing my long term memory into snapshots from the past twenty-four years). I know I’m lucky to have gone that long before it hit me properly, but when it did, it hit hard. My renown loquaciousness abandoned me the instant I tried to write essays, leaving me slumped over the keyboard and close to tears, struggling to recall the sentence I had formed in my head ten seconds ago. It didn’t occur to me that it was to do with the fatigue of living with a disability, and so I looked for causes for it; in the process I found a major hormone imbalance and was eventually diagnosed with long-term bipolar disorder, but the medications for each of those problems failed to clear the fuzziness in my head. So the sense of relief and belonging I felt when I saw that term, and that hash tag used amongst my Twitter friends, was almost palpable. It wasn’t a failure in concentration on my part, it wasn’t stupidity, or a willingness to let my perspicacity slide away from me, it was the result of living in a body that has to work its metaphorical socks off just to keep going every day. It sounds awfully self-pitying to explain all of the trappings associated with ones health problems or disability, and so more often than not, we don’t. People around us see the surface, but they don’t see the frantic paddling our bodies are doing beneath it. When you’re born with a disability or illness as I was, it isn’t any worse than developing one, it’s just maybe more difficult to understand what is usual and what isn’t, as there is no ‘life before’ to use as a point of reference. Though I wish none of my friends were ill or disabled, having their experiences to learn from has been a huge help to me.

After two short spells in hospital recently, I was checking my emails and realised that I had no idea what the ones from my The Broken of Britain cohorts were referring to, and yet I knew I should know. It’s a sign of how easy it to throw a brain that is surrounded by the Spoonie brain fog off course – two days away from my emails, and I might as well have been living in a cave for a year for all of the insight I had. But although it still frustrates me, and although I still haven’t really accepted that this feeling befuddlement isn’t going to leave if I shake my head hard enough, I feel much easier now I can email TBoB team back, as I did last week, and say “I’m out of the loop”. And they know exactly why that is, and they pull me straight back in.

NB: I wrote this after five false starts and lots of irritated tutting and cursing!

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Mother’s Day? Same as all the others

It feels like an age since I’ve blogged here, but equipped with my new iPad, I’m now more able to write in comfort. So I’m back to blogging!

I’ve just finished making my Mother’s Day card, as Mummy Jelly (as she is known to all on Twitter!) requested a homemade one this year. I have a severe lack of artistic talent, so were talking little more than stick figures drawn in felt pen, but I did write her a poem, so it’s not all bad.

To make up for my lack of skill, I used photos of my mum and me from over the years; me aged at ten months, six years, and twenty-three years (taken last May). And it made me think about how every year, Mother’s Day is really no different to any other for my mum. I can’t make her breakfast in bed and, even before opening her cards and gifts, she will put my morning blob of ointment in my eyes, then measure out and administer my medications. Then she will help me wash and dress, get me a drink, cook my Sunday lunch, liquidise it…the list goes on.

I hoped that we would have some help by now, as we’ve been looking for a carer to come in for a few hours a week, but so far we’ve had no luck. And even when we do, they couldn’t provide the nigh on twenty-four hour care my mum does.

The pain and discomfort of my disability and my illness can (for the most part) be managed, with pain relief and strength of mind and character, so if it only impacted on me, I wouldn’t hate EB so much. But I despise the fact that it means my mum is always a carer, never just a mum, a wife, or most importantly, a woman. She always has to take me and my needs into consideration, not even painting her fingernails in case it flakes into my wounds, or wearing rings in case they harbour infections. And even when I tell her I’m fine, and force her out of the house to meet her friends, I know she worries. Though I do smile when she comes home saying “I saw a woman pushing her daughter in a wheelchair in Marks and Spencer, and I missed you!”.

Though I sometimes wish I hadn’t been born with EB – I never enjoy it, but mostly I just accept it for what it is – I never wish that I hadn’t been born to my parents. I would always choose to have them and EB over having neither.

Every day I am thankful beyond expression for every single thing my mum does for me, but in Mother’s Day it really hits hard. That’s why I’m sending love and thanks not just to my mum, but to every mum around the world who is also a carer. It’s a tiring, often lonely job, and it is only going to get harder in the face if the government cuts in the UK. I’m one of the lucky ones who is able to actually put my arms around my mum and give her my thanks and love, but many daughters and sons can’t do that.

So while all mums are amazing, please spare a thought for carer mums tomorrow. They won’t have time to think of themselves.

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Mere seconds, major help!

Apologies for being slow to post this, but there is still time to help, so please read on!

It is now less than two weeks until the Government make their final decisions about “reforms” to Disability Living Allowance (DLA), which, if they proceed as planned, will have devastating effects on many disabled people throughout the UK, and on their loved ones and friends.

Being fortunate enough to have regular contact with people who are passionate about protecting the rights of the disabled (and the carers), particularly the wonderful writers and campaigners of The Broken of Britain, I’m surprised at how apathetic some disabled people are. I want to do more than I do, so I’m not painting myself as a paragon of virtue, but taking a few moments to sign a petition is the very least a person could do. Of course, those who physically cannot are exempt from that statement.

Sign the petition against cuts to DLA here

One misconception about disabled people is that we want the world handed to use on a plate, or that everyone owes us a favour. We really don’t (well, the vast majority of us don’t!), and we need to prove that. Okay, you might not have time to blog or protest, but please, do this. Make your voice heard and make a difference in less than two minutes. Think how you will feel if you find yourself without the benefit payments that enable you to live with your disability, and think of those who would dearly love to participate in this action but simply cannot.

And ask your friends and family, your carers and support workers, your medics and your colleagues to do the same, and ask them all to pass it on. Injustice does not change on its own, we have to fuel it. Don’t look back and think “I wonder if my help might have changed that decision”.

Carers, friends, families et al, you can all help too, and we would very much appreciate you doing so. These cuts could leave disabled people lying in their own defecate all night because their carer has been taken away, or bound to the four walls of their respite home room, because they can no longer fund an essential electric wheelchair. No one should have to live like that, nor should they have to risk starving or freezing to death, or feel suicidal through stress and fear, purely because of what their body and/or mind has done to them.

Thank you for reading this, and thank you in advance for helping the disabled people of the UK.

Mel xx

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Why is there such contempt for carers?

Last week, the tragic story of Riven Vincent’s lack of council support in caring for her daughter (read the story here) once again brought the plight of carers to the publics’ attention. The flurry of news stories, and the country-wide outcry, forced the council into acting; having said repeatedly that they couldn’t help Ms Vincent, they are now back to having meetings about what the Vincent family need, with the Prime Minister muttering hurried apologies. Ironic that a party who put such importance on family and marriage would have allowed a family to be torn apart for the sake of a budget…

Perhaps even sadder than the story itself is that by next week, the Vincent family will have been forgotten again, just as carers always are. Yes, they get the occasional pat on the back, maybe an award at a ceremony that is more about celebrities trying to look selfless than it is about supporting the nominees, and parents will be told that what they do for their child is amazing, but it is all lip service. Empty words to people who desperately need more than a piece of plastic or a round of applause.

This was emphasised on Tuesday, when I received Bromley Council‘s proposals for “changes” to disabled services in the borough, based around the introduction of ‘personal budgets’, allowing people to manage their own care needs. Unsurprisingly, the ‘changes’ are riddled with cuts and increased charges to the service users; the Council have proposed introducing charges for day care used by the frail, elderly and specialist service users (eg. dementia patients), which have increased from nil to up to £40 per session, and also propose implementing charges for service users who require ‘Homecare’ at evenings and weekends. Additionally, services users will be, if Bromley have their way, expected to pay for their ‘Carelink’ and other ‘assisted technology’ devices, plus many other forms of help, all out of their limited Direct Payment budgets.

I was granted Direct Payments in late 2008, after being alerted to them by an EB Nurse Specialist. My mother was working part-time (three days a week at Bromley Council, no less), whilst also providing all of my multi-faceted care, health and personal. Bromley Council decided that my needs came under the banner of “exceptional” and allowed me to pay my mum for the personal care she was giving me, as it would be too difficult to find someone else to provide the care to the same standard.

In early 2009, my mum gave up her job and went back to being my full-time carer, not that she ever really stopped; whilst my mum was working, she would get up at 6am, wash, dress, eat her breakfast, measure and administer my medicines and liquid feed via the tube in my stomach, prepare the things I needed to wash, adjust any slipped dressings, help me get dressed and leave with me a drink; during her lunch, she would arrange my prescriptions, equipment deliveries and any hospital/doctor’s appointments; after work (at 6pm), she would make dinner, sort out the washing, then embark upon my four hour dressing change, before measuring and administering my medicines again, and helping me into bed. Whilst she was at work, my grandparents would give me any help I needed. It was a great concern to all of us that Mum was under such a huge amount of pressure (my dad does as much as he can, but changing my dressings etc is hardly practical, and he works full time in manual work), and in March 2009, she took a year’s unpaid leave. After leaving work, I was granted the budget to pay my mum for some of the health care she gives me, and thus she left her Council job permanently.

Now at the age of twenty-four, I am only just being given the ability to hire another carer, in order to give my mum some incredibly well-deserved and desperately needed respite. Not that Mum will agree! Whenever I tell her how much I worry about her, she just says that she loves me and wouldn’t be anywhere else, and anyway, I’d do for it her (which, of course, I would). But that is exactly why and how Councils and the government abuse carers, and exploit the love carers have for the people they are caring for. I know that, despite caring for my faultlessly and with more dedication than any child or adult could wish for, my mum still feels having outside help with my care means that she is letting me down.

Most parents of able-bodied children complain about how draining it is, how they often feel bound by being a parent and have their freedom taken away, but for my mum, she is still is that position even though I, her youngest child, am an adult. I still need help with washing and dressing, I need to be cooked for and sometimes fed, I need to be put into bed (thanks to the copious amount of eye ointment needed to stop my corneas blistering at night), I often need to call her in the night for various reasons, and she still stays in hospital with me, camped out on the floor beside my bed. She is my nurse, my cleaner, my cook, my therapist, my grief counsellor, my personal shopper, my PA, and she is also one of my best friends. But Mum didn’t decline help from the Council throughout my life, she was just never offered it. And if she was, it was quickly withdrawn once the extent of my needs became apparent, as happened with the district nurses, for whom my care was impossible to fit into their already overstretched schedules.

My mum said recently that she doesn’t do her job, caring for me, because she loves it; she doesn’t love seeing me cry during dressing changes, or watching me go through one medical procedure after another, or helping me because my hands won’t function, or engaging in the indignity of helping me clean myself after I’ve been to the loo. She does it because she loves me, plain and simple.

Now Bromley Council tell me that they are proposing to cut the hourly rate paid for care, via Direct Payments, from £14.80 per hour to £11 (both minus tax). The proposal makes me absolutely furious, as it yet another example of how the work of carers is held in contempt. My mother works twenty-four hours a day, more than she is (we’re told) allowed to be paid for according to EU laws, and now they want her to work for even less. The fact is that my mum asks to be paid for caring for me purely to make ends meet. She’s not accumulating a nest egg, or jetting off on expensive holidays, but paying the bills and helping to put food on the table.

The Chief Executive of Bromley Council earns (as of September 2010) £188,785 per year – £46,000 more than the Prime Minister – and yet I doubt he works twenty four hours, is sleep deprived or camps out on hospital floors. Where is the justice?

It is this kind of treatment, and much worse, that leads carers to take drastic measures, whether asking for their child to be taken in to care, or taking theirs and their children’s lives. Every time those stories hit the news we shake our head, say “how terrible”, and hear hollow condolences from politicians, local and national.

Now is the time to tell them that we will no longer accept the debasement of carers and their work. The government is targeting the disabled and their carers because they see us as an easy target. How wrong they are!

This is a call to arms – we must protect our rights to have care, and the rights of those who provide it. Please tell your stories, whether you are the cared for or the carer. We can stop this injustice and degradation, but only if we all work together.

Thank you for reading once again. I’m going to hug my mum, say thank you, and then we will both carry on fighting.

Mel xx

To help support carers, please visit:

Carer Watch

The Broken of Britain

One Month Before Heartbreak

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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

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Will the ConDems allow the disabled to live?

I like to think that I’m a fairly intelligent person, and yet one thing continues to baffle me; the idea that disabled people enjoy claiming benefits.

I wish I could gather all of those misguided, ignorant, self-righteous creatures together and tell them this – no disabled person would be choose to be disabled and dependent on other people, whether those people are our family, friends, or tax payers.

Yes, some people claim benefits unjustly, but here is a key point: those people are not disabled. Can you see the difference? Those people, who are in the minority, despite what the scaremongering in the media might lead you to believe, choose a life of sponging off of the state, despite the fact that they could work for a living.

Disabled people have no choice but to be disabled.

I desperately want to be able to work. When I listen to my friends discussing their duties in the workplace, their colleagues habits (good and bad), even the irritating person on their train that morning, I feel a pang of envy. They are out earning their livings, they are contributing, paying taxes, they have a sense of purpose and of achievement. When they get their wages each month, they know what they’ve done to earn it. I would love to experience that, to know that I’m a contributing member of society. I don’t need any more “incentives to work” than these. I just need to be able to work.

Instead I am reminded every day that a section of society voices the worst opinions I have of myself: sponger, worthless, a drain on society.

You may be wondering why it is that I don’t work; it’s because I was born with a genetic skin blistering condition called Epidermolysis Bullosa (EB), of which I have the Recessive Dystrophic sub-type. Chances are, you’ve never heard of EB, so I will enlighten you. Due a lack of connective proteins in my skin, the slightest friction or trauma causes it to lift, either in to fluid-filled sacs of blisters, or to detach completely to leave raw wounds. Imagine developing a third degree burn, simply because you turned over in bed, or got dressed, or misjudged your footing. That is the effect of EB.

Having been rampaging around my body for the past twenty-four years, EB has cost me: the sight in my left eye and caused great photosensitivity in the right, the majority of the dexterity in my fingers, my toes (which have fused into a solid mass on each foot), the ability to walk more than a few yards at a time and the ability to swallow (meaning I need a feeding tube in my stomach). On top of this, frequent systemic infections, anaemia, nerve-damage causing restless legs and extreme pain, and the amount of time my wound care takes every day all leave me very tired and lethargic.

EB is unpredictable; I often wake up with corneal abrasions, caused by my eyelid tearing the skin on my eyeball, leaving me blind and intolerant to any light for days. I can suddenly feel very ill due to an infection, or experience a huge amount of pain in a wound and be unable to move. None of these things are conducive to doing a good day’s work. I spend a lot of time at the hospital seeing specialists, and being admitted for surgery and procedures.

Now, tell me. Would you employ me? Would you give me sick pay for all of this time? Would you adapt your office, or supply me with an assistant to act as my hands and feet? Could you afford to pay someone who will be absent so often?

No, of course not. How could you?

But do you understand that this is not my ideal life? That I’m not living the life of Riley on the taxpayer’s (including my parents, sister and extend family) money? It’s worth noting that, whilst the NHS is a crucial part of my life, I have to pay for dressings, treatments and supplies that aren’t covered by the drug tariff.

At home, even though I’m an adult, I am still dependent on my mother, who is my 24-hour a day carer. However much we love each other, however much we laugh together and just get on with it, there is an inherent feeling of humiliation at having to be put to bed, helped into your underwear, even sometimes helped on to the toilet in your twenties. There is also the knowledge that, however much it may be denied, you are a burden to those you love. Even my friends have push my wheelchair, cut up my food and help me get my trousers down on nights out!

You might point out that I’m blogging, that I tweet (yes, Nadine Dorries, I’m admitting it!), that I go out with my friends, that I speak for charity (in order to raise funds to cure EB, which would save tax payers money!), and I don’t deny any of it. But I can only do these things because they are worked around my disability; I have no deadline, and no one is depending on me. If I need to have a sleep half way through writing something, I can. If I need to write spitting in a bowl because I can’t swallow my own saliva, I can. If I need to cancel at the very last minute or leave at a second’s notice, my friends and the charity understand. I could not do those things in the workplace.

When you think about it, it’s strange that benefits are so called. Are they meant to be the benefits of being disabled, the upside to being trapped by your own body? I can assure you, all of us who claim them legitimately would gladly swap for them for a job, for security, for freedom.

Maybe they should be called compensation? No one questions someone being compensated for an injury that keeps them away from work, even if it is caused by an accident. Well, what happened with my genes was an accident, and it caused me injuries that keep me away from work. But disabled people are increasingly begrudged the money they need simply to survive.

I’m really not in the habit of bemoaning my lot. I have a wonderful family and friends, a roof over my head, medical care, and food on the table. But there is a huge amount of injustice in the air right now, and those who will suffer most are those who are not able to fight against it. I have a voice, and I can use it, and so I want to support those who aren’t, for whatever reason, as fortunate as I am.

David Cameron has claimed that “we’re all in this together”, but these cuts won’t affect him in the slightest. He is not relying on friends or family to enable him to live from day to day. He is not facing the prospect of having his care funding cut, and being left to lie in his own urine and faeces all night, because his carer has been replaced with an incontinence pad, nor is he looking at spending every day of his life within a respite home, because the removal of his mobility Disability Living Allowance component has been withdrawn and he can no longer afford an electric wheelchair. He will not be a working person, taking over from the agency carer the local council can longer fund. He won’t feel suicidal because he is being made to feel that he doesn’t deserve to live, or because he simply does not have to means to do so. These are real issues being faced by people with disabilities.

So please, the next time you see a story about the ConDems cuts on benefits in the newspapers and you tut about these disabled people draining the state, please remember three things:

1) Disabled people aren’t spongers, they are people who truly need the money, and desperately wish they didn’t.

2) When you go to bed tonight, you won’t need someone to dress you, or clean your bottom, and you won’t be left to lie in your own defecate. You will be free to do as you please.

3) Not all disabled people are born that way, and many are disabled due to accidents and illness, and you may find yourself in their dependent shoes one day.

On 14th February 2011, the ConDem government will make their final decisions about cuts to Disability Living Allowance, the “benefit” that helps disabled people to fund the expenditure relating directly to their disability, whether care or transport (paying for cabs, an adapted car, or even simply a wheelchair). This decision will impact upon disabled peoples’ ability to have the best quality of life they can possibly have in their various circumstances. If cuts are made, many disabled people will be forced under the poverty line, living lives as second class citizens.

In conjunction with The Broken of Britain, a non-party political action group for people with physical and mental disabilities, and their carers and supporters, One Month Before Heartbreak are giving a voice to those who will be affected by these cuts, and bringing their plight into the public conscious, and hopefully conscience. Please visit their websites to see how you can help us fight for people who might not be able to fight for themselves. You never know, you might need them to fight for you one day, too.

Thank you.

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