"When you have your health, you have everything. When you do not have your health, nothing else matters at all."
- A quote that's so familiar that it's become seamless in our collective vernacular. As clichéd as the sentiment is, it may have lost it's visceral relevance.
As the UK hits the 'welfare cliff' with more and more people relying on food banks, and with the disabled still at the very real mercy of the now infamous ATOS 'assessment' process, there remains a rather large elephant in the room of disability welfare reforms.
There has been a projected image over the last few years that the UK's welfare culture has meant that there are many fraudulent cases, all of whom can play on the golf course daily whilst receiving a gross handout from the state for their chosen lifestyles of apathy. In truth, nothing could be further from the hyperbolic bubble that we've shrouded ourselves in. Despite only 0.5% of disability benefits being fraudulent, the cuts to the disabled is growing with alarming consequences. It is now commonplace to read of suicides, deaths and risible tales relating to the ATOS process.
There is, however, an area that we now must address with the severity that's needed to evoke a mood of change. I have previously blogged on the lack of understanding and opportunities that exist to those who have disabilities, and especially those who suffer from fluctuating illness, but as the cuts bite hard, there is still no attainable alternative to those on the receiving end of austerity.
To cite the personal perspective of M.E, Fibromyalgia, M.S, and similar illnesses that have no degree of constancy to the sufferer, it is a fundamental impossibility to conform to the nine to five workplace. By its very nature, chronic and fluctuating conditions prevent normality entirely, not to mention, dealing with constant agonising pain, fatigue and mental attrition is a full-time job in itself. Severe illness is indiscriminate, it can happen to anyone who's had misfortune in life. It remains a sobering fact that many people are simply not eligible to work.
But, there is also another, rather oblique, aspect to this large quandary. There are those with chronic illness whom are clearly capable of high achievement, those who have learned over a great period of time to seek autonomy through necessity - there are many with fluctuating illness that have personally sought productive outlets under their own auspices. The misnomer that we even have a benefit culture with disabled people ready to exploit and sit comfortably needs quashing. Make no mistake, the benefit system does not hand out much money at all to the individual, and it's a system full of stigma.
The unyielding reality is that there are hardly any resources or infrastructure to cater for those who wish to be self-reliant whilst still having to tread upon their own battle weary path of dealing with illness. We are able to cater for disabilities that have a degree of constancy, and yet no real effort has been made for those who's very existence is turbulent - with unreliability an inherent factor of fluctuating illness, this makes for a tumultuous and untenable mix for prospective employers and employees alike. We must think outside the box.
Through my public platforms such as the The Huffington Post UK, I've come to meet and speak to many who deal with debilitating illness on a daily basis, some are unable to even think about work, some are capable of intermediate activities, others positively seek work that conforms to their needs to no avail - task based work can often be achieved, but it has to be dictated by the circumstances of the individual, and once more, there are not many employers who are willing to take this punt, and who can blame them? If an employee cannot offer reliability in their working hours, what else is there? Moreover, the juggling act of the benefit system is also a factor: it's all or nothing, there's little intelligence within the system to allow for sporadic methods of earning.
Support groups such as the M.E Association are often the go-to place for those with nowhere to turn, and it doesn't take long to find examples of how there are a great deal of people who are all in the same boat of nonconformity. As we hit 2013 we must begin in our quest for work that suits patients' needs.
It can often be the case that arts and crafts provide solace. I've come to know many talented people: from dressmakers to writers, musicians to graphic designers, bakers to artists, these are areas that are often the hardest to break into. Working from home also provides possible alternatives, and yet the irony soon becomes apparent that these positions are equally as hard to find, and often only serve to provide menial tasks that pay a fabled pittance. Self-employment is an option, but this method of earning is often fraught with stress, long working hours and has its own pitfalls of unreliability.
With the modern world interconnected is there any excuse for such distinct lack of opportunities? Task-based over strict hour-based work ethics could be an achievable alternative if enough resources and thought were applied - we must begin to see the skills of individuals and learn to trust in unconventionality - high level mentoring would also be a welcome addition. Those who fight just to exist on a daily basis, through pain and personal hindrance, are often lateral thinkers; thinking outside the box is a necessitous process.
It's time we reinvent the workplace and provide real alternatives to those who have some capability to work, but it has to be on their terms - a more mutual, affable working condition owing to the very nature of inconsistent health. We must have a collective empathy with those whom are simply not eligible to work; to reiterate, we're all but one of life's hardships from having our world rocked to its foundations, and we're running out of safety nets. If we readdress our working practices for those that suffer from chronic illness and disease, we could also engender a more welcoming, stress-free environment that would have a wider benefit. For too long fear has pervaded the 'back to work' notion of the disabled due to its undiscerning, unrelenting practices. We have to begin to present overarching and reasonable options for those most vulnerable, and we must deal with the entrenched financial wilderness that many now face.
Follow Jason Reed on Twitter: www.twitter.com/jasontron
Carers and disability benefits - GOV.UK
Citizens Advice - Benefits for people who are sick or disabled
Sick and disabled braced for enforced work-for-benefits programme ...
500,000 to lose disability benefit - Telegraph
Disability Living Allowance costs British taxpayers more than £13 billion per year
Disability claimants pushed to the brink by 'faceless' benefits system
Disabled man takes government to court over benefit test
Cut it out: Paralympic golden girl Sophie Christiansen attacks Tory disability ...
I relate to Ian James1 on the pills to dull the pain and then you forget what you were doing.
I went to work one day in Dec 2007 and though I didn't know it yet that one day would change my life forever. What at the time I thought to be a pulled muscle from almost dropping a 150lb flower pot my boss asked me to help him move, turned into Major Spinal Surgery, titanium inserts and severe nerve damage effecting my upper left side including the functional use of my left arm and hand.
It can happen to anyone, at any time and then you to can be called a SCROUNGER!
I am not afraid of my disability but I am afraid of how I am going to pay the bills.
But the other side of this coin. I paid in for years , and years. I had no choice, PAYE and NI . well now I'm claiming on my insurance... just like you would claim if your house burned down or your car was stolen.. So IDS and your supporters, GO F;;; YOURSELVES, because I don't feel guilty, getting less than a third of what you claimed in expenses to pay your wife to look after your diary...
MOST DISABLED PEOPLE I KNOW WHAT TO WORK...
PS No Spammers need respond.
Would have included this in the above piece, but exceeded word count.
I was an inpatient 4 times in 2012 and all those 'visits' were on an emergency basis. My carers and people who help me are all in the local area and I would not encourage them to travel far to help me. This is just not fair.
Firstly because they didn't need to know - as above in my circumstances I was judged purely on output - if they were happy what does it matter if I am ill?
Secondly because I needed to get a foot in the door in order to prove myself capable and in an employers market I wouldn't make it past the first CV scan. This is one area that might be addressed, though I don't know how
Thirdly, because my view is that thinking of me as healthy they attribute any delays, absences or cock-ups to human nature as they would for any other employee. If they thought of me as an "ill" person then every failing would immediately be attributed to the illness *even if it was nothing to do with it* (all employees make mistakes and have bad days).
Essentially I withheld the information (to be clear they did not ask, I didn't volunteer) in order to get a fair crack of the whip - but is that really the way it needs to be, or is there a way to convince companies that *some* chronically ill can actually be productive and worth employing?
I may be doing my employers a disservice- they may have given me a chance to prove myself even if I had disclosed my condition, but frankly I didn't and don't dare - there are not many jobs that are so flexible even in
I am fully aware how lucky I am - I happened to have high level professional skills in a field where remote working and overall output rather than "bum on seat" was the key measure. I am not suggesting that all people with chronic illness could do the same, even if they were as lucky as me to find such a job.
However would it not be waste of my knowledge and experience if I was not employed at all because I could not be in front of my desk at precise hours? Anecdotal yes, but I cannot be the only person in a similar position and if there is some way to make it easier for people like me to find and fulfil such jobs that has to be a good thing?
I accept that many jobs are not suited to this approach and many employers would not consider it, but I do not believe the wholly black vision of some earlier comments that *no* employer would consider it.
In an ideal world is precisely what the Work Related Actvity Group should be aimed at acheiving - allowing people the opportunity of self-sufficiency within the limits of their capabilities. Of course instead in this far from ideal world we have the obscenity of potentially indefinite Workfare.
http://wowpetition.com/
When a good week can have you viewed and reported as a fraud, at risk of loosing your entire income and the roof over your head....
eventually, after months of wrangling agree that you are not fraudulently in receipt of benefit, and you may get your money back-dated....
Bank charges, extra costs incurred will take years of extra scrimping to crawl out from under. Chronic illness will have worsened, due to inabilities to afford the extras (like heat), special diets, supplements, and the numerous aids, extras that keep your head above water.
Volunteer to man a helpline@ home a few hours a week, will likely have your disabling chronic health brought into question.
If the disabled benefit scroungers were well, they would be out in the streets of our cities everyday, but they are not, are they, so where are they?
They are at home, trying to keep warm, minimise symptoms and pain, Trying hard to get well, or not worsen their condition or increase their dependency on others.
Embarrassed and often humiliated by the never ending need to clarify the level of personal aid that they may require, the indignity of all their most personal of concerns being laid out in front of stranger after stranger.
Many will conclude suicide is best option, rather than face the inhumane destruction of their desire to live, in a battle that will most likely see them homeless and destitute.
As you say, there are a great deal many aspects of the system that perpetuate one's illness. There is no intelligence to personal circumstances. This does warrant an article all of its own I feel.
Once more, thank you for conveying this neglected aspect.
So go and bury your Head Jason.
Genuine question.
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Genuine Answer.
Wrong, for to have any Chronic Condition by its nature, limits ANY HIGH achievement because if you remove the word Chronic, then the Person in Question would be able, and capable to achieve far MORE.
Therefore, in the Case of this Person with a Chronic Condition their achievement is Low, when compared to what they might have attained with NO Chronic Medical Condition's.
"By its very nature, chronic and fluctuating conditions prevent normality entirely, not to mention, dealing with constant agonising pain, fatigue and mental attrition is a full-time job in itself. Severe illness is indiscriminate, it can happen to anyone who's had misfortune in life. It remains a sobering fact that many people are simply not eligible to work."
- and there are many more that I also interjected with in that tone. I know many people who stand no chance of even self-maintenance let alone work.
And just to make you aware, I’ve been classified severely disabled since the age of 8, so this does come from quite a personal perspective. If you can offer feedback on where you felt I’ve been wrong or insensitive, please do let me know.
But yet again I must disagree with what you call disclaimers, whereby for example you say; " fluctuating conditions prevent normality entirely", for if anything the opposite is more truly the Case since you are getting into a Grey - Area whereby the word "Fluctuation" can mean all things to all men.
This is why I have moved my position to hard edge of using the term Chronic in ALL my replies, since the word Chronic means normally permanently in Medical Term's.
Dealing with constant agonising pain again in the Chronic sense is indeed also a reason for being in permanent pain, while having a constant agonising pain due to some way you move, or some action you undertake depends upon the limitations of your Actions, whereby again someone standing may be in constant agonising pain, while should this same person be doing something sitting down this pain will subside, or is able to be kept under control with medication.
A person may be fully paralysed from the waste down, but is still able to do a Desk - Job sitting in a Wheelchair, while someone with Chronic Lumber Disc Disease may just be able to walk, but still be in Chronic Pain permanently, and when seated.
Other examples of why Chronic conditions are first and foremost the main reasons why many People cannot Work, and NOT just because someone is classed as being Disabled from doing a certain task, even if overall limited..
Anyone that can find nothing else to do, but too suggest that they have spoken to many People with Disabilities, and Health issues are a very sad lot indeed, for they somehow think that Medical Specialist were dreaming when they told someone that they will NOT be able to Work again.
The Disabled therefore, have to suffer all kinds of make - believe scenarios whereby the writer of these Blog - Stories have, and show very little intellect of understanding the complete nature of many given manners of Disabilities, for these Story Writers themselves are usually able - bodied, but they somehow seem to think that due to a Government Austerity programme, they too must engage with trying to give the impression that a Magic - Cure for many Disabled People is in some form of Employment unto which many of those Disabled have previously been told to avoid from working due to the FACT that by engaging in such tasks will only increase their overall levels of Disability.
Many able - bodied Huff Story Writers can write all they like about what someone else with any Disability they think can do outside the Box, but many Disabled People live life everyday firmly inside a very restricted unhealthy Box indeed.
It is therefore, very easy for any perspective Employer to get hold of your Pre - Existing Medical History from your GP, as normally you will have to give this permission of Prior Consent on any Job Application Form.
Unfortunately, government attempts to reduce spend on this stuff usually ends up being an unpleasant blunderbus approach. The people who often end up having their benefits cut are often those who need them most but who don't know how to work the system. The few people that are manipulating the system to their advantage will continue to get benefits because they know what forms to fill out and what answers to give - i.e. they know very well what boxes need ticking and they are happy to keep ticking them. That is because the system is ultimately administered by inefficient bureaucrats who make decisions by numbers rather than by common sense.
I am afraid that the only effect tighter government rules will have in this area a) won't make a huge difference to public finances at the end of the day and b) will take money away from a lot of needy people.
Medication, on the other hand can only work against pain, while it is totally pointless to try and do something that increases the levels of pain, only to find that NO Medication is effectively working.
On the Job's front, you are fully correct about the impracticality of ANY Employer to sign - on any Disabled Person, when they know full well that any involvement to be seeing someone struggle to do something will cause both the Disabled ( Employee ), and perhaps another Third - Party to have a further Accident.
This of course will be expensive for any Employer's Medical Insurance to cover.
In the round, the Government have now fully abdicated the States duty, of care, and responsibility towards Welfare Claimants Medical Check's by furnishing them out to Private for Profit Medical companies like Atos, whom have NO responsibility whatsoever for their actions towards the electorate.
So whether indeed you, or I like it or NOT this is the outcome of this Coalition Governments faith in what has in many Cases previously been looked into by fully trained NHS Medical Specialist, and by the former routine of DHSS / DSS, and DWP Medical Assessors alike, for how many times do you personally believe that someone already assessed as having a Permanent Chronic Medical condition, or disorder should be recalled just so that a Private for Profit Medical organisation can mull over the competency's of proven medical evidence fully attained by trained NHS Medical Specialise, and Professional's???
These are your changes that have already been made and have come to past, for the worse.