Denise's Story #spartacusstories #spartacusreport

Every time I hear the media or the general public refer to people who claim benefits as "scroungers", their ignorance and lack of empathy saddens me. To me, being in receipt of benefits is most definitely not a lifestyle choice and this is why...

My name is Denise Stephens, I'm 32 years old, I live in London and I happen to have a highly active form of relapsing remitting multiple sclerosis (MS). After numerous years of unexplained symptoms, I was finally diagnosed in 2003, at the age of 24, and my life changed forever.

My life prior to MS was relatively average, I worked hard to gain ten GCSEs, four A-levels and secure a place at the University of Manchester to read Chemistry. Three years of blood, sweat and tears later, I was the proud owner of a first class honours degree. Some might say that the world was my oyster...

Having been fascinated by the world of forensic science since college, I set out to pursue a career in this highly competitive field. I was lucky enough to secure a position as a forensic toxicologist, working for a well known London University. Just over two years later I was offered a position with another organisation, where I would train as a court reporting officer. Little did I know that all of my dreams; independence, career, lifestyle, long-term relationship and so many more, would all be lost within a five year period.

At the beginning of 2004 my health took a turn for the worse, I had a disabling series of relapses which left me barely able to walk, manipulate objects with my hands or see out of my right eye. While my friends were focusing on climbing the career ladder and going out clubbing, I was finding it difficult to do even the most mundane of things, such as hold a knife and fork to feed myself. To say my self-esteem took a battering is an understatement.

Time went by and I was gradually able to build myself back up, with the help and support of physiotherapists, occupational therapists and other health care professionals. But this isn't the end of the story, the following years were divided between periods of illness, hospital admissions and rehabilitation.

I was forced to give up my career, which badly knocked my confidence. I come from a background with a strong work ethic, so without a job I felt worthless. I desperately wanted to return to work, if not my original career, something else even. I'd always worked throughout my education; paper round, shop assistant, waitress, bar work and administration, no job was below me. If only my health would allow me to do any of one of these things, I would have done it.

I reluctantly applied for benefits and slowly felt my independence, and self-worth slip away, only to be replaced by the feeling of isolation and loss. Nobody would be interested in speaking to me, what was I supposed to say when people ask "what do you do?"

I desperately tried to return to work, but attempts were either, at best, short lived due to a deterioration in health and hospital admission or, at worst, a complete and utter false start.

Despite having a first class degree at a red brick university, it appeared that I was unemployable. Looking for part-time work to meet my needs, was easier said than done. I would apply for general administration positions that required GCSE grades and despite the two ticks disability symbol, previous admin experience and a first class degree would receive no offer of an interview. I repeatedly visited the Jobcentre Plus for advice and was told to dumb down my CV. This definitely wasn't what I envisaged when studying so hard for my degree.

Being stuck at home with little to occupy my mind was slowly driving me up the wall, so I decided to go back to university. I was extremely frank about my condition and what it meant I could and couldn't do, but when push came to shove I received very little support, being told that the disability advisors were far too busy dealing with the undergraduates to be able to help. Yet again within a few weeks, I'd had another relapse and was back in hospital.

After years of what felt like hitting my head against a brick wall, the number of hospital admissions well into double figures and deteriorating health, I finally gave up trying to fit into the employment "norm". I just didn't and couldn't fit in and reasonable adjustments were rarely seen as important or necessary.

Slowly the Denise Stephens I and others knew disappeared, I felt useless and lost without the sense of purpose that comes from having a focus in life. Compounded by this, as well as mounting financial pressures which made me feel like a burden, my long-term relationship broke down and I became homeless. Not quite the stuff that fairy tales are made of...

So why am I telling you all of this, I hear you ask?!? Well, it's in the hope that you'll realise that no-one is guaranteed an easy and straightforward life. Health is something that many of us take for granted, but when it's gone there's little that can be done about it. There is no cure for MS, there is no walking away from this and I will have to manage my condition the best I can from day-to-day for the rest of my life. I did not ask to have my world turned upside down, it just happened as it could to anyone else. I did everything that society expected of me; studied, worked, paid my taxes, but now I feel like I'm a second class citizen because I have to claim benefits as my health doesn't allow me to hold down a typical 9 'til 5 job.

The proposed cuts to disability related benefits and services, feels like yet another kick in the teeth for those whose health and disability has already affected their lives and aspirations immeasurably. To carry out these cuts is irresponsible, as they will destroy the very support framework designed to keep the most vulnerable people in society safe and well, contrary to promises made by the government.  

This is NOT a lifestyle choice! Do not treat it that way...

Originally posted here  

Anne Novis MBE #spartacusstories #spartacusreport

Sometime before Christmas I found myself unable to blog.

I hadn't even been blogging for long.

Surely its easy to write a little sometimes, with a break in between sentences what may even seem a small post.  To manage my pain.  Its called pacing.

I am fortunate the only benefit I claim is DLA (Disability Living Allowance).  My husband works and hard.  We have invisible disabilities in our family of four.  A husband & son with Epilepsy, dyslexia, dyspraxia. Myself and my daughter ehlers danlos, with the addition of osteoporosis, osteoarthritis, arthritis.......    We live simply on a low income.

I found myself increasingly affected by the media and Government onslaught, regarding the status of my verity & probity.  I am honest and so are my family.  It is not my fault or my families fault that our genetic pool collectively includes the conditions it does.  Does it make me a scrounger? 

So somewhere along the line and this is where the writing of the blog became intertwined with a deep seated unhappiness about the treatment of those with disability in the UK.  I became unable to write about how living with Ehlers Danlos was affecting me.  Until this feeling became overwhelming I had felt liberated that I was able to write here.  Perhaps in some small way helping another with this devastating, rare condition to cope a little better?  Then little by little my confidence became shattered.  Perhaps I am overwhelmed by guilt.  I know not what the actual cause of this affliction was, except that it coincided with the assault on the disabled of Britain.  Why guilt. I asked myself.  It has taken me a long time to even be able to say that.  Guilty for my disability?

Ehlers Danlos has a profound, lifelong affect on those who have it.  For years I worked and struggled to do so.  Eventually it became obvious to all that I am simply not fit to do so.  This does not make me a scrounger.  This is the truth.  So we live together on a low income.  My only source of personal money is via DLA.  My lifeline.  I could talk forever about the why's and wherefore's.  Dislocation, subluxation, the fact that much of the money is spent on keeping warm.  Is that my crime?  Autonomic dysfunction, raynauds, pain..... means that the cold has a profound effect on my wellbeing both emotional and physical.  If I get cold my body temperature drops too fast and I become hypothermic.  Is that my fault?

An able bodied person could possibly go out for an invigorating run to warm themselves.  I smile wryly to myself, the memory of running an obscure one, you see even as a child I couldn't run.  What one doesn't know one does not miss.  There is more to my condition than getting cold. This is just a small example of the additional expense of my disability.  A tiny weeny glimpse into my life.  To overheat is pretty devastating also.  So the heat and the cold are equal enemies to me.  Fans are expensive to run also.  So is much of the paraphanalia required living in constant severe pain.  I won't bore on that front.   Don't get me wrong, I like the feel of the wind in my hair and the warmth of the sun on my face just as much as the next person.  Its the wild variations in blood pressure.  The inability to stand on my own two feet literally that interrupt these natural pleasures.  Its not just that, knees, ankles, bones in feet, hips, shoulders, wrists, thumbs, fingers, elbows sublux and dislocate with even minor pressure.  This is not just a standing thing, turning over in sleep is enough to wake in searing pain.  Muscles which have altered collagen stretch then stretch more meaning that with each daily multiple dislocations/subluxes injuries are ongoing and further weaken that which is already weakened.  Do you know anyone who dislocates their finger touching the touch sensitive pad on a microwave.

This is just a taste of EDS.  A starter.  It is a complex, painful condition.  It is not something I have made up, although many including myself spend many years being labelled a hypochondriac, until finally a diagnosis is made.  If one has the condition severely, one is destined for a life of pain.

Do the government see my pain?  When I am forced to take a medical in 2013 when my 'indefinite' award comes under scrutiny.  Will I have to endure the humiliation of a medical which will be undertaken by a doctor who in all honesty will have no clue as how to appropriately examine the severely hypermobile patient.  Why should they know.  When many consultant rheumatologist's shake their heads and wonder why the patient before them is so debilitated.  This rare condition also has few specialists who have an innate understanding of the complexities of how it affects each individual with it.  This medical examination which I am happy to comply with, I don't have a problem trying to explain to a doctor? who cannot see my altered collagen about the effect it has on my life, my body.  I have nothing to hide, nothing.  But how much will it cost to essentially go through it all over again?  To re-apply for something which I have already been deemed eligible for? Seems nonsense to me.

I am honest, if my condition improved I would let the dwp know.  In fact I would let everyone know.  This is not a condition where my physical capabilities improve. My world is small enough as it is.  To face the scrutiny, the humiliation, all over again.  The thought of this is tipping me over into a deeply unhappy place.

Is it not enough that every waking moment I am wracked with pain.  I dream pain at least I thought I did.  Now I know having communicated through the blogosphere to others with EDS that I am not dreaming pain.  I sleep an unrestorative, interrupted sleep IN PAIN.

Until the recent persecution of the disabled began, aged 46 I was beginning to feel that the relatively small amount of money I receive from DLA was something I need not feel guilty about.  After all we live do we not in a democracy.  I contributed via taxes etc. for a long time.  Now overnight apparently I am a scrounger.  My debt to society is too great.  Perhaps they should put us disabled up against the wall and shoot us.  Aiming for the perfect race, perfection.  All humans are flawed some more than others.  When I gave birth to my daughter all those years ago I didn't know I had EDS, I did not know it was genetic. Should I have denied the world her vibrancy, her very being because she is not genetically perfect.

So just when I was finding that I could reach out via this blog and gain inner strength from other bloggers.  I found myself - polaxed.  Crippled in another way.  Because apparently I am not good enough, to warrant respect. My privacy invaded, my bodily functions, the most intimate of functions shared with strangers, where is the respect there.  Shall we look to our sisters who chained themselves to railings to get a vote, to be heard.  I thought in part much of our fight had been fought.  Equality it is surely some sort of sick joke.  To re-apply for DLA or pip will be a humiliating, degrading and depressing process.

I am not against reform, I am not against change.  I am however appalled that the very weakest in our society are being bullied so.   I have a message though.  Beware be very aware that those that are being picked on here are used to pain.  Bring it on.  For we are stronger than you think.

A year ago I was awarded an indefinite award of DLA.  Previously to that I had been awarded three yearly awards.  For the preceding years as the three years ran out.  I braced myself (those with EDS may be smiling wryly here at the double entendre) braced myself for the invasion of my privacy, the explanation that yes my husband has to perform intimate caring for me, this I explained in detail and the rest.  I will do it all over again.  Still thinking that surely it should be enough that my GP could write a letter without actually having to go into intimate detail over and over again.  He could outline my condition and the limitations it has on my ability to function independently.    Will this save the government money all the new pip pip pippety pip.  I think not.  Even changing all the logo's on the websites, the headed paper, the paying the IT consultant's to programme, etc will probably cost more than is saved.

DLA is actually the least fraudulent of all benefits.  A tiny minority and surely they must be a little ill to be willing to lie so extensively in order to be in receipt of money which for the truly disabled is in fact a lifeline.  Enabling us to have a little self respect.

It seems that now not only do I face life with a disability so crippling I sometimes wonder if I did something bad in a former life to deserve such a thing; I also face the guilt, shame, and relentless invasion of my privacy simply because I was born disabled.

I am not sure how much of what I say makes sense anymore on this blog, which is why comments have been randomly latterly turned off.  I have turned them back on but please don't feel obliged to do so.  Particularly if you want to stop by to say, if I can type this I don't deserve DLA.  In truth, and I don't know why I feel obliged to explain, it has taken me in small chunks over a week.  With the additional help of extremely potent pain killers and good pain management techniques. Another example - the need to explain even as I write here, that the disabled of Britain are in fact being targeted in an underhand, unfair and inhumane manner.  Its obvious this supposed consultation before the inevitable changes to DLA take place that there is a sinister undercurrent at work that only the history books will unveil.  Long after I have left this world.


Others are so much better than I, at campaigning, I doubt very much whether my one small post will change one single thing with regard to DLA.  But I am used to shame and guilt.  I am disabled.

(By the way I have worked out as I write again a little of why I could not do so, I think I was worried that I was pitied.  Along with the government/media induced guilt. For the record, the majority of disabled, sick people understand that pity is futile.  I was worried that I was moaning over and over again.  Well at least I do it here instead of over and over again at OH!  Working out along the way that worrying about what I may write, have written is just me and anxiety.  Its like the tv, turn it off or change the channel if its boring, purile crap).

I just read this and although I can't do much of the list of want to's in the linked post it is food for thought and I think I should shed the guilt!  Silly me, they cannot steal my dreams, yet... Read & enjoy,  ......  http://diaryofabenefitscrounger.blogspot.com/2011/01/you-will-never-take-away-my-shoes.html?spref=tw

Originally posted here

Becky's Story #spartacusstories #spartacusreport

I'd intended to take part in this blogswarm but found myself wondering if I really had the courage after reading some of the extremely personal posts. I do. However, as Emma has warned us, what I consider appropriate language for disability may not be considered appropriate by other people.

That said, who am I? Am I the 28 year old woman who needs to be hoisted and physically cared for much of my daily life? Am I the 28 year old woman who has embarked upon her doctorate of education, teaches in two primary schools as a volunteer and chairs a charity which supports one of those schools? I'm both those people and what I long for most is that people see me as the doctoral student and friend who happens to be disabled.

Mr. Cameron's latest reforms, although that's a polite word for them, will cause me to be even more isolated and struggle even more for a basic right to have some form of life outside of the four walls of my home. Heaven forbid! A career?!

The proposed reforms make me so angry. Mr Cameron wants everyone, and he stressed everyone (including wheelchair users with cerebral palsy) to contribute to his vision of a big society and to be aware of the lives of others than themselves. Someone, I think it was Mahatma Gandhi, exhorted us to be the change that we want to see. That's what I'm trying to do. Please help us Mr. Cameron. Don't hinder us. And did you forget - one of your family belonged to 'us' too? What you don't know, Mr Cameron, is about the black hole of lack of support a disabled person falls into once they reach eighteen.

The original post on Becky's blog

Coffee's Story #spartacusstories #spartacusreport

I claimed DLA in 2008 on mental health grounds, I was awarded lower level care and mobility. It changed my life, meant that I could afford (just about!) to run a car, giving me freedom. I could finally get out the house without my carer, this built up over time to me being able to get back to work.

Unfortunately the last year has been a bad year, 3 stays in hospital and being picked up by the police prior to being sectioned under the mental health act. I have tried to work and have had 3 different jobs, all of which my mental health problems have got in the way of. There is no way I can work at the moment - although I am slightly more stable, I am still too unpredictable and unreliable to work and the pressure to work would cause a relapse again.

So I have applied for ESA - I have filled in my medical questionnaire and sent it back. That was December, still waiting to hear what is happening next. And to make it worse my DLA is up for renewal this year too, I have filled in that form too and will be sending it back today.

Even my mental health team have told me to be prepared to appeal with the way things are at the moment. I don't think I can cope with the appeal process.

No job, No ESA and No DLA - I am very scared that it will push me over the edge.

I am convinced that the government won't be happy until we are all at work or pushed to take our lives - either way we will be claiming less benefits.

By Casdok on behalf of C #spartacusstories #spartacusreport

I thought society was making some sort of progress by closing down the long stay hospitals ‘allowing’ us out into our own communities. Obviously society wasn’t ready for us as they are putting us back behind closed doors unable to afford to go out.

My mum has always hated the injustice I have received. She fought for me not to be restrained/confined in a wheelchair for the ease of staff and today as a young man I don’t need one.

But by 2012 I maybe confined to my bedroom.

Not everyone finds it easy to access public transport even with free passes. Busses/trains can be unpredictable. The smells - the sounds - the chaos. Sensory overload. I try and block it all out with fingers pressed in my ears and eyes to keep control. Overwhelmed with pain and confusion I smash my head repeatedly against the window to regain some sort of coherence. I black out.

Staff are scared one day I may not come round. For protection they will chemically restrain me or not take me out on public transport. The government are taking away our mobility money/cars – my lifeline to doing things that everybody else does, shopping, appointments, leisure, visiting family and choice - will be no more. Attitudes of staff will regress to the archaic mindset of pity, inequality and devalued.


Care homes will go back to being more institutionalised as social services cut their funding. PCP’s will no longer be seen as opportunities for disabled people to join the 21st century as now even transport will be cut.

My future is frightening.

Disabled by the government.


By Casdok on behalf of C.

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Fit For Work? #spartacusstories #spartacusreport

 Please note: This video is particularly distressing to watch. It is an individual's honest representation of Britain's secret shame.


"Any society, any nation, is judged on the basis of how it treats its weakest members ; the last, the least, the littlest."




This is the effect of doing something on a pretty good day I used to take in my stride, if I had sat about doing very little finding things to keep me occupied that don't involve physical effort I would not have become so out of breath that an hour or so later is causing shakiness and the aches are setting in. This is how many of the the governments benefit scroungers live, choices of living in filth or days when it is possible doing a tiny bit here and there which is massive to the person doing it.





Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Why We Can't Grin and Bear It Any Longer #spartacusstories #spartacusreport

I am a carer. I look after my wife, who has had ME/CFS since August 2009 and has had some sort of disability since birth. She currently claims Disability Living Allowance (at higher care, lower mobility), Income Support (shared with myself), Local Housing Allowance and Council Tax Benefit. She has never been able to work beyond an attempt at a paper round in her teenage years which she had to give up, due to it making her ill. She requires a great deal of care – and this is where I come in. I push her to college 4 days a week – this involves 6 hours of travelling a day if everything runs on time, which it often does not. I help her with getting washed and dressed each day. I do the housework and ensure that she eats every day, as she requires prompting to do so and is unable to stand in order to cook. I take her to doctors appointments and pick up her prescriptions as well as doing a great deal of the household shopping. I contact various people on her behalf, as she has difficulties with communication – she is totally unable to use the telephone. She requires company pretty much all the time and I am also there to provide that.

As you can probably tell, she needs a lot of help. Because this amount of help leaves me totally unable to work I claim Carer’s Allowance and am on my wife’s claim for Income Support. The Government pay me £53.90 in Carer’s Allowance – considering that the minimum amount of hours that I must care for my wife a week is 35, the Government is currently getting a very cheap service. If a private carer were here instead of me, it would be much more expensive.

I am incredibly worried about the benefits shakeup that is most likely going to happen. The Government wants to scrap Disability Living Allowance and replace it with a “Personal Independence Payment” that would be far harder to claim than the current DLA – a benefit which has a fraud rate of just 0.5% and empowers disabled people to do things that they wouldn’t be able to without it. The Government want to get 25% of all people on DLA off it. The numbers do not add up at all.

As for Income Support, it is pretty much guaranteed that the Government will want to transfer the Income Support claim over to Employment Support Allowance. This would require frequent medicals. My wife has massive travel problems – buses make her panic and I am currently unable to drive. This would make getting to any medicals incredibly stressful and could lead to her becoming depressed again, something which she has not had to cope with since early last year.

If my wife does not successfully claim the Personal Independence Payment for whatever reason, my Carer’s Allowance will most likely get stopped.  This will force me to look for work, leaving nobody at home to do the caring. My wife has tried living semi-independently in  the past and this did not work, so the most likely outcome would be her having to move into a care home or similar institution. The Government want couples to be living together and them taking away my wife’s benefits would lead to that not being the case, not to mention not being able to afford the care home if they were taken away.

Needless to say, I am really worried about what the next month will bring and I call to any other carers, whether they are in my position or not, to make your stories known. People with disabilities are people too, they cannot be thrown aside because the Government wants to save money. We cannot just take any changes the Government want to bring in without a fight. We have to take a stand, not just for the people we know but for all disabled people.

This post was originally available here

 Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

E's Contribution #spartacusstories #spartacusreport

I always felt that we were Lucky in this country, that since I can no longer work I had the luxury of having my rent paid and enough to live off. Not enough to do anything exciting or flash just enough to pay my bills, put the heating on and not have to worry about the basics.

I noticed before the election all the promises about cutting down on benefit fraud about how big the deficit was and how many times 'back to work and making work pay' were being used. 

Yes I was nervous, but listening to Mr Cameron on the steps of number 10 announcing that the most vulnerable and frail of society would be looked after I did genuinely feel reassured, being one of those that is to ill to work.

However it didn't take long before the onslaught started, we seemed to become the bad guys and cut after cut were announced. Its still sinking in, hearing everyone else's story has been both uplifting and depressing. The experiences of those failing medicals now proves this isnt some distance nightmare but a reality.


I do not kid myself that I will escape that I'm going get ECA or DLA again, and like many others it's just not possible to leave the house enough to even get JSA and there seems the very real risk in the future that I may be made homeless if I cannot claim sick benefits and cannot claim JSA either. 

Like I said at the start I used to feel Lucky that as a disabled person I wasn't living on the streets in some far away country begging for my existence and already it seems like just surviving is going to be more difficult for so many people.

Life is difficult every day, the thought of having any more to deal with is extremely difficult. The thought of having to worry about money and paying the bills when there is nothing you can do about it is just awful. I won't be marching on the streets I'm to ill to go out very often; I'm terrified that we will be going back to a society were my quality of life can be much worse.

 I cannot do anything to improve how difficult it is everyday, but others in government have the power to make it much worse.

My disability, my story doesn't matter much, there are thousands of stories all different yet each being asked to bear the cost for the sake of the rest of society. Ironically the very society we feel most excluded and set apart from.


 Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Are You Sure It Won't Be You Next? #spartacusstories #spartacusreport

I was once a dancer, an acrobat, a runner and a climber. My body flowed with the rhythms of the world. I moved with grace and beauty. There were struggles; the early effects of my syndrome did take their toll, but I did not give in, I was a fighter, I was tough. No-one would have suspected how bad things were, nor how much worse they were about to become.

As I became increasingly disabled I noticed that the way people related to me started to change. There were two particular, noticeable trends in this: Firstly able-bodied people began to treat me differently, oddly. To some I seemed to become invisible; they would stand in front of me as though I wasn't there, take over a table that I was sitting at, walk in front of me when I used the disabled button to open doors and walk ahead, leaving me behind struggling to keep up. To others I seemed to become hyper-visible; they would stare at me, speak sharply to me for no apparent reason and, worst of all, laugh at me. Even middle-class professionals could find the sight of me a source of immense amusement.

I found myself wanting to hide away, to withdraw from the human race. Life would have been pretty unbearable had it not been for the second trend: Whilst many able-bodied people stopped connecting with me as a fellow human being, there seemed to be an increasingly strong connection with other disabled people. This was a connection that did not need to be spoken. It could be communicated easily and effectively as we passed each other by. It could happen in a momentary passing glance, or it could be built and held in a long slow approach. I felt that I had missed something very special through my able-bodied years. I felt blessed to be connecting with these people now in this way. I wondered whether I would ever really feel that I belonged in general society again.

Although my disability began to worsen rapidly and I was advised to apply for DLA it took me two years to be able to complete the forms. The questions took me into the full awfulness of what my life had become and I couldn't bear it. Each attempt to answer the questions brought me to tears and an overwhelming sense of despair. I became depressed. Eventually, with support and the incentive of necessity and desperation I got the forms completed and submitted. Hearing that I had been successful and that I would be given financial help with the costs of my mobility and care was a turning point for me. Of course receiving the money was a huge help. I was able to get equipment including a mobility scooter and hoist, and could pay for some personal help. I was getting a life again.

The DLA meant more than this though. It helped me maintain a sense of connection to the able-bodied world, a sense that there was some understanding and care out there. I no longer felt so alone and rejected. My gratitude to my fellow tax-payer was enormous. My sense of patriotism grew. Wasn't this just a glorious caring country?

I can hardly express the hurt and disappointment I now feel in response to the various government threats to disabled and carer support. It is shocking, disorientatingly so. My head and guts swirl with it. Strength fades from my limbs with it. My eyes sting with it. I have been naive. The understanding and care that I believed in is an illusion. We are alone and rejected. There is no glory in a nation that acts in this way.

Like many others I now have to prepare myself for reassessment. Not the forms this time. This time it will be a physical scrutiny by an employee of a private firm, a firm whose mandate is to significantly reduce the number of disabled people who can qualify for help. I will have to submit my body, my crippled, bent and broken body to the critical, sceptical gaze of this employee. I don't know if I can do this.

If you are one of the able-bodied people who think this is reasonable ask yourself; Is this what you would want for yourself or for your loved ones? But you probably don't think this could happen to you do you? You probably think disability is for others, not for people like you.

Remember, I was once a dancer, an acrobat, a runner and a climber. My body flowed with the rhythms of the world. I moved with grace and beauty. I was a fighter, I was tough. No-one would have suspected how bad things were about to become.

Are you sure it won't be you next?

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Aunty Awdurdod's Story #spartacusstories #spartacusreport

I am 45 .Every day I wake up in pain go to bed in pain and struggle though the day at work in pain -being disabled since 2004 has not been fun ,it hurts to stand ,it hurts to sit, it hurts to lie down,my sleep is not deep due to the pain and I quickly become tired.Its also is not cheap being disabled . During the last 12 months my mobility has declined and my osteoarthritis and other conditions have worsened, it takes me 8.5 mins to go from no pain to agony when driving , nearly an hour an a half to get myself up and dressed in the morning [compared to 30mins inc breakfast 12months ago ] , I rarely go out except to work these days and usually stay in touch with friends by the internet - Just to make life bearable since September I had to buy my own up /down bed cost £1,200 ,a riser recliner heated massage chair for pain relief and to enable me to sit in my living room and be able to watch tv [as recommended by my physio ] cost £1,300, clothing with no zips and shoes with no laces £200, incontinence pads £6 a month , the physiotherapist recommend swimming- so I now pay £500 a year membership so I can use a pool after work . During the cold snap I kept dropping things I could not use a phone for example as my fingers were so stiff and painful- it cost me £350 for less breakable phone with touch screen & voice to enable me to make calls and text without using my hands . The special diet for one of my health conditions puts an extra extra £30 a week on my food bill. I could do with help for house hold chores but cant afford it on top of recent expenditure so I struggle and the trip hazards accumulate and increase my risk of falls . I pay £25 a month for a parking space at work -because I cant park further away and walk or cycle in. I'm lucky to still have a job but with cutbacks for how much longer?
Despite all the above I only just got a blue badge in January and when I apply for DLA I shall only qualify for the lower rate of mobility. My point is to qualify for DLA your life has to to already very limited by your disability and you probably already see a multitude of doctors and care professionals who can verify that you need help - to take support away from people who are already doing so much for themselves it to take away their hope and ultimately their human right to live as normal a life as possible. Cutting benefits for the long term disabled may actually increase the effect of their disability on their lives. Is this morally right in a country where we are in the G7 and the DLA bill is less than the war in Afghanistan or the banks bail out?

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011 

Diana's Story #spartacusstories #spartacusreport

We've received many incredibly comments left on entries on this blog.  People sharing their stories and reaching out.  I'm reposting some of them on the blog because they deserve attention too.  I'd like to thank everyone who has commented.


Diana


I've been severely disabled now for 9 years and have had 5 hours of care a week. Last year Soc services reassessed and tried to cut it to 2 hours saying despite the fact I can't stand up to deal with pans or boiling water, it was quite acceptable to prepare food on the floor. I argued my case and got the 5 hours back. 
Last week the council reassessed my finances (I had never had to pay before as we didn't have enough income). Now that my husband has retired and our income has dropped by 2/3 I now have to pay a massive amount towards the care- saying I have to use part of my DLA and whereas they used to disregard my husband's "earned" income they now include his pension in our income. They refused to let me cut hours to match what they will pay and if I refuse to pay this extra amount (which I can't afford) they will stop ALL payments as from Monday. I have to give my carers a week's notice but they won't pay that either. They refused to accept most of my care expenses such as the cost of having food delivered because I can't get out to shops but others because I don't get receipts from people like window cleaner, lady who does ironing, people who weed the garden for me etc. So basically they said I was lying.So as from next week I have NO care at all because I simply can't afford to pay this excess amount and despite the fact they have assessed me as needing that care..
No warning, no covering the notice period just a bland "we stop all payments for care on Monday".
I am now in a massive flare up of pain which will only get worse as I struggle to do the things I had help with.
Just down the road from me is a 91 year old man with a fractured spine; bedridden and again with no care at all because he couldn't afford the "contribution" they expect him to make. His wife is in a dementia home and he relies on neighbours to bring food which can be left cold at his bedside. Cleaning, laundry, toilet needs and bathing he is expected to see to himself.
These cuts have already badly affected my mental health, both from the loss of my carer who has been coming for 10 years and is the only person I see from outside the home and from fear of how I am going to manage plus the upset of trying to argue with them. They just don't care.
If they then start reassessing my need for DLA life simply won't be worth living. I don't get out now- what have I to look forward to?

Denise's Story #spartacusstories #spartacusreport

Denise:
Sadly these 'reforms' have been in the pipeline for a lot longer than this government and as always all done with stealth - and as they affect a group of peoplle who are frequently not in a condition to loudly and visibly campaign they went largely un- noticed despite charities protesting and sites like Benefits and work doing a lot of good work. The press also seem to be largely ignoring the issues it will create for so many disabled people who are currently living life with dignity and will mean that for many the loss of independence will mean they cannot work or study so will be a greater burden on society as well as being in 
greater pain and discomfort. This will almost certainly happen to our daughter who has a rare and misunderstood disability and DLA has helped her lead a much happier life, but she will most likely lose it, which makes her feel as though she is viewed as lying about how affected she is. We have a wonderful doctor who is wholly supportive, however government and the form checkers at the DWP appear to think they are more qualified to decide how much life is affected!


Robert:

The World Is Watching #spartacusstories #spartacusreport

I’ve been alerted to this by my friend Steve – his post on ME is here – and thought I should really add my two pence as someone who is classified as ‘disabled’. To explain: The consultation on the reform of the Disabled Living Allowance ends on Valentine’s Day, so One Month Before Heartbreak has been set up to collate blogs from disabled people talking about their experiences, whether they have received DLA or not.

I’ll keep it short, I promise. I just couldn’t not say anything.

I’m classified as ‘disabled’ at University in a couple of ways.
1) I am high-frequency deaf, and have been all my life. I can’t hear bus bells, birds singing, most alarm clocks, fire bells… I also have a slight speech impediment that developed because I couldn’t hear the difference between certain letters.
2) I was diagnosed with clinical depression in late 2006 (incredibly long story but the short version is I was on medication on and off until January 2010)
3) I contracted glandular fever in May 2008 and spent the next 2 years constantly ill. Glandular Fever, also known as mononucleosis, or the ‘kissing disease’ (though I personally didn’t contract it through kissing anyone! Mine was much less pleasant – I almost certainly caught it through travelling on the Tube across London every day…) It has affected my life at University to a great extent – though thankfully, this has not developed into ME as is sometimes the case.

I feel like a fraud discussing Glandular Fever or depression as disabilities (contentious issue, I know), so I’ll stick with something I won’t get flack for – deafness. A lot of people who know me will say “Wow, I never knew she was deaf!” – I get told that all the time. I don’t want to make a big deal out of it or label myself as deaf, because I feel that it detracts from me as a person and I don’t want it to get in the way really.

I am not profoundly deaf but it has affected me as I’ve grown up – it made me very reclusive as a person and made me shy away from group situations. At primary school, I was forced to wear hearing-aids at school by a well-intentioned teacher, and bullied relentlessly for it. I will always remember being chased around the playground by the school bully, who caught up with me, yanked them out of my ears and threw them on the floor. Not much of a surprise that I absolutely loathe them and I do everything to avoid actually explaining my deafness to people (though oddly enough i find that people just think I am stupid). I just get on with life, and if I miss things, or people think I’m stupid… It’s their loss, I guess.

It’s an ‘invisible’ thing – in fact, everything I suffer from or have suffered from is ‘invisible’ – it’s not like having a broken leg. It’s not like being in a wheelchair. People can see wheelchairs and casts, and they treat you differently for it – whether positively or negatively. Does this make it harder for me? I can’t really decide.

On the one hand people don’t judge me immediately. In fact, people are often horrified that they don’t know “Oh, I’m so sorry! I had no idea!” (Well, I didn’t expect you to be a mind reader!), and then shock turns into admiration at the fact that I have “coped so well”.. And whilst I appreciate the sentiment, I am hardly going to give up on my dreams because I’m deaf – being classed as ‘disabled’ doesn’t mean I am stupid, thankyouverymuch.
On the other hand, others not knowing means I spend a lot of time putting up with people who don’t believe me, or explaining it to people. “How can you be deaf if you don’t wear hearing aids?” Ohh, bless you, you only understand stereotypes. SURELY I can’t be deaf because I don’t have hearing aids. I clearly must be a compulsive liar! Throughout school if I missed registers, substitute teachers would shout “Are you deaf or something?!” – Um, yes… I am actually. You can go and fetch my school record and it will show you exactly what I can’t hear..

There is still a stigma surrounding disabilities, especially the more invisible ones like mental illness. They’re rarely talked about, though so many people suffer from one form of mental illness at some point in their lives… What worries me is that those discussing and making decisions are so far removed from reality and real people that they can’t even begin to understand what being disabled is like. To me, disability doesn’t mean you are UNable to do things. It just takes you longer, takes more effort – and more importantly, requires more patience and understanding from other people.
How can they make a decision on DLA reform when they have never had to fight twice as hard to achieve the same as those who aren’t disabled?

Originally posted here

 Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Will The Government Allow Me To Live? #spartacusstories #spartacusreport

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 to. 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.

Originally posted here

 Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Disability cuts don't affect me #spartacusstories #spartacusreport

In the New Year’s Honours list, MP Anne Begg was made a Dame for services to disabled people. Herself a wheelchair user, there was initially outrage when media outlets proclaimed ‘Disabled MP made a Dame’, the implication being she was made a Dame for being disabled rather than for her work. Hearing her comments on the news, that disability is not about being unable to do things, it’s about doing what you can, and that her wheelchair had liberated her, I turned to my family and said, “Well, she sums up exactly what I feel.”

I have been in an ongoing battle with a family member in recent months, over my choice to refer to myself as disabled, and my vocal support of disability rights. It’s not nasty, it’s just the elephant in the room. Unfortunately they cannot come to terms with the fact that I am affected with multiple conditions that cannot be made better. They’ve not got anything against those with disabilities, but they do buy into the belief that disability is all about wheelchairs and serious mental impairments.

Personally, since accepting my limitations as disabilities I have never felt more free. Instead of making excuses and feeling like a failure for all that I can’t do, I am proud of myself for all that I can do. In my mind, and indeed, Dame Anne’s, that’s what disability is about – being empowered to do what you can, and not being judged for what you can’t do.

I’m not receiving Disability Living Allowance. I never have. I applied for it in 2001, when I had been diagnosed with ME/CFS for 2 years (having been ill for many years before diagnosis), and I was refused. My Dad assured me that that happened to everyone, indeed it happened to his father who was unilaterally paralysed from a stroke. My dear Grandpop had admitted to being able to make himself a cup of tea. Apparently, making tea whilst semi-paralysed is equal to being able to fully care for oneself – to get out of bed and dressed without assistance, to get in and out of the bath, to cook a full meal etc. With my Dad’s assistance, he successfully appealed and received higher rate care and mobility for the rest of his life, which he used to pay for help. He also got a mobility scooter so that he was able to get out and about. When I was still able to walk home from school, I would often see him on a Thursday afternoon, happily heading for the local shops to collect his pension and buy sweets. My cousin even drew a fantastic caricature of Grandpop on his rechristened “Healy-Davison”, the object that made the biggest impact on his last years of life. On the night he died, Grandpop called his sisters, telling one of them he was going to go out on his scooter, despite her protests that it was late, to see the sun set. I don’t know if he actually went out, but it’s a nice memory.

I never did appeal for DLA for myself though. I decided that at that point I ‘wasn’t disabled enough’ and left well alone. When I was diagnosed with Ehlers-Danlos Syndrome I again considered re-applying, but again, decided I wasn’t at a point to need it – I was working, had come off Incapacity Benefit, why did I need benefits anymore? I made a decision that should I become unable to work in the future, or needed specialist services or care then I would apply. I’ve stuck to that. For now, I am receiving enough benefits, more connected to my status as a single-parent having left an abusive relationship to not warrant needing any more. I don’t need any specialist services for now, I own a car, and I work part-time. That’ll do me for now. Besides, I don’t know where things are going with this, and frankly, I could do without all the hassle of filling in complicated forms and attending stressful assessments.

But there are thousands of people out there who are already at the point I hope never to reach. They are in need and the planned cuts and reforms of DLA will affect them. I have already said that I believe that disability is about doing what you can, and for many in receipt of DLA, that’s exactly what it is used for. DLA enables people to afford care, adaptations, aids, transport and other services that empower them to live their lives, to just do what they can.

When you’re not the one making the decisions, faced with spreading the budget as thinly as possible to make everyone happy, it is all too easy to criticise and get angry. But it is important to support the disabled, and as Dame Anne says, not to exclude them from society. DLA is not a work-related benefit. The vast majority of claimants cannot be forced to work by cutting them off. Indeed, for some it is the thing that enables them to afford the support to keep them working, productive and happy. It is estimated that half of working DLA claimants will have to give up work if the proposed cuts come into play. Ironically, taking away DLA will cause many to become the stereotypical ‘scroungers’ that the media loves to hate. Far from being empowered to take control of their lives, many will be left unable to get out, unable to access services. The upshot of this being that this may result in less people being able to contribute to society in a variety of ways, impacting on other areas of the system.

No, it doesn’t affect me.  Not yet.  But as we’re all in this together, as they are so fond of telling us, I will speak out about it. And if we’re all in this together, why disempower so many?

Also online here

 Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011