From The Huffington Post UK politics blog, 7 January 2012. Words by Jason Reed.
“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
MEA note: Work4ME is attempting to do just this in Scotland under the leadership of social entrepreneur Shona Sinclair. We covered their story last August and our story can be read HERE.
Bravo! I am ‘lost for words’ of admiring appreciation.
This is a good, well written article highlighting a number of very relevant points for people with long term fluctuating health conditions. Agree entirely that a more flexible benefit system would be a very contructive way of helping those with disabilities back to work. There also has to be more trust. If DWP continue to query the level of disability that patients report, that is not a contructive platform from which to help the disabled back to work. Also, there has to be an understanding that if you are chronically ill (not just someone on dialysis, or who can’t walk 50 yards,) you probably genuinely cannot work – at all – regardless of what the law says.
For people in Scotland with ME/CFS and other fluctuating long-term conditions, there is an organisation which is attempting to achieve the kind of outcomes that Jason describes in his very original think-piece.
Work4ME, led by social entrepreneur Shona Sinclair, would be well worth checking out. Their website is at http://www.sksscotland.co.uk/work4me-3/