It has been a while since I last posted a blog, due to a combination of ill health and my attempts to return to work, it leaves little time to write my blog. I hope that you enjoy the first installment of my journey back to work.
After a car accident, I went from being the running, jumping, climbing trees type, to barely being able to get off my sofa. I went to the doctors several times, begged them to help but got ignored. I was accused of being a drug addict, faker, hypochondriac and more.
Eventually I found someone who was able to help and I was diagnosed with a combination of Ehlers-Danlos Syndrome, Degenerative Disc Disease, Postural Orthostatic Tachycardia, Early onset Osteoarthritis and Fibromyalgia, amongst other more challenging complications and injuries. This only added to my existing concerns with Dyspraxia and Dyslexia. (None of which are easy to spell)
I spent a lot of time listening to people tell me what I would never be able to do again, and I believed them. Things began to get worse, to the point where I was forced to give up my business as a driving instructor on 31st July 2014. I became depressed and desperate, and with my partner getting his diagnosis of Non Hodgkin Lymphoma, things grew ever darker.
I applied for thousands of jobs but as soon as they discovered I had a long-term health condition they refused to hire me. That was when I decided to go self-employed again, but this time doing something I love, theatre. I realised, that it was going to hurt regardless of what I did, but doing something I love would help to keep my brain occupied enough to reduce the pain until I went to bed; even then, it's worth every sleepless night and every ache it causes.
It took me a while but eventually I found something that helped (although didn't cure) and my mission to return to work began two years ago. I first tried going to the Job centre (JCP) to see our disabilities adviser, everything I asked for help on, was declined. When I asked what she could do she told me "not much." The staff barely knew what options they had to improve our chances of returning to work. I asked if they had a disabled friendly employers list, no. I asked if they would help me write my CV as I was over qualified for the jobs I was physically able to do, I was told I should just accept whatever came along. It was quickly established, through an offhand comment, that my return to work was much more important than my health or even survival.
Each route I tried with the JCP was thwarted. I tried joining the New Enterprise Allowance (NEA) which sounded fantastic and appeared to have so much potential. Unfortunately though, the adviser's knew nothing about how they could help me with my specific needs, nor did they offer the mentor scheme anymore and all of the free courses which were promised on the gov.uk website were no longer available. What's more, there was no accounting for people with disabilities on this scheme.
We were given the same tight time-scales as those without the added struggle. I sat and listened as the job centre adviser, who was supposed to help me, put up barrier after barrier; telling me the things that I needed before I started my business wouldn't be available until after I no longer needed them. I asked how I could get around my disability and was informed to simply "not tell the potential employer so as not to put them off." Which would mean I would get no protection from the law should the new employer try to discriminate later on.
Over the next two years I applied for thousands of jobs. Sometimes I would get through to the phone interview, but being as I was over qualified for many of the jobs I applied for, the inevitable question arose. Why had I applied for such a low-level job when I was capable of so much more? As soon as they found out I had a long-term health condition the atmosphere would change and I found myself being rejected for jobs I could do in my sleep.
Fed up with this I returned home and gave up on the NEA and the JCP only to watch a news report telling me how people with disabilities were not returning to work because they were on "too much benefit" and their money should be cut, to the tune of £30 per week. I listened as the politician being interviewed told the reporter how people with disabilities put up barriers and how there were many fantastic schemes they could go on to help them return to work. This is not my experience.
It's all well and good finding a job, but the problems soon crop up once employed. Many employers are so concerned about sickness rates, many people who do find jobs end up back on ESA within a few months and there is no support system for this. Instead we get punished with cuts and criticism. Many of my friends who do work with a chronic illness are often bullied, demeaned or sacked within months of starting their new job.
Eventually, having had enough I decided to open my own business so I could employ people like myself and so ACTION ADVENTURE THEATRE PRODUCTIONS was born. My policy is to hire anyone who would otherwise not have the opportunity and to help them achieve their dreams, all I ask is the right attitude, a bit of raw talent, dedication and a the willingness to learn.
It is key, in order to truly help disabled people back to work, for us to support and encourage each other, instead of punish and beat those living with painful conditions. With my fantastic team and amazing Business partner (Jenny Gilbert) I am finally able to take the steps needed to return to work. Sometimes, we have to realise that those we love, who are now sick, are unable to do the things they did before. Not everyone can work, but most want to, so ask yourself, what can you do to help keep a chronically sick person sane?
I will be detailing more on my experiences on returning to work in further blogs but I would love to hear about your experiences, so tell me... How have you found returning to work with a disability?
DISABILITY AND THE CHRONIC IGNORANCE WHICH SURROUNDS IT
By N Mann-Harwood
There is too much stigma attached to having a long term health condition, in this article we will explore how this happens and why. Understanding ignorance is the first step to beating it.
Living with any kind of disability is tough, especially when it’s invisible. We become excellent at pretending to be well, hiding our pain and suffering from the outside world whilst enduring the constant criticism it brings. There is vilification and a distinct lack of understanding in the media, in government and in society as a whole.
Sometimes we forget how easily opinions can be manipulated, and how powerful the media is at disseminating such information, which may sway our values and moral judgements. Especially with regards to things we do not readily understand.
Ignorance is what allows false information to guide our judgements and thoughts, it allows our government to dehumanise subsets of people so they may make brutal decisions, cutting much needed funds to the most vulnerable in society. This ignorance is ever reaching and envelopes many sub-groups, such as the disabled, or homeless, and even refugees. It causes in fighting and blame, hate and anger and eventually retribution. All this makes it much easier for them to make cuts that would otherwise be regarded as cruel and unjust.
Due to the recent economic crash, our country needed to make some big financial changes. Unfortunately for us, the people who make the choices over which monies to cut do not have the empathy or social skills required to understand such sensitive situations. They are corrupt, and greedy, they make fraudulent claims against their expenses, and increase their own wage. Instead of making cuts which would be detrimental to themselves or their investors, they are cutting benefits designed to help and support some of the most vulnerable in society. To justify this and to maintain their Machiavellian persona they use a tactic called dehumanisation. Dehumanisation starts by blaming those who are to be the subject of such cuts by making them appear separate from the rest of society, not as good. Dehumanisation techniques work, and are powerful. Don’t believe me? Just look throughout history.
One of the most prevalent dehumanising tools is propaganda. So what is propaganda? Propaganda is the release of information which is of a specially biased or misleading nature for the purpose of promoting a political cause or point of view. If we look back in history we can see it used to dehumanise groups of people before segregating them and finally eliminating them. It was seen clearly in North Korea through their hate campaign against the West or even our own hate campaigns against them. By dehumanising their perceived enemy, the governments of these countries are able to convince an entire nation of the need for war.
Successful tyrants throughout history and the modern world use propaganda to convince people of their way of thinking. It’s powerful and it’s dangerous and it’s happening in the UK right now.
So how does propaganda work?
Propaganda works by targeting a specific group; in this case the disabled, and demonising them, separating them off from normal society so others see them as less than human. Some of the tactics which have been used so far would include a prominent MP claiming “…Disabled people are worth less than able bodied people...” In this sentence the term Worth Less is very divisive. Not only is it saying we should be paid less when used in context, but on a subconscious level it plants the idea that disabled people are worthless.
It is repeated over and over that our countries financial struggles are because of those who would otherwise struggle to, or be unable to work; attacking both refugees and disabled people alike. Claiming we are lazy, fraudulent or out for what we get. Unfortunately, when we look at the true figures we see the amount paid out in such claims is small. Especially compared to the costs involved in governmental mistakes, or on the cost of tribunals and appeals, which are all too often overturned as a result of an inappropriate medical assessment being undertaken by under qualified and ignorant staff.
Cause and effect.
Ignorance is both the cause and the effect of such atrocities; ignorance is what allows dehumanisation to take place and ignorance is spread further through the process of dehumanisation. There is an epidemic of ignorance around the world, when it comes to disability, visible or not. People don’t understand, nor do they want to understand those who are different from them.
Most of us are guilty of sighing when we hear a friend moan about their back, or get frustrated with a dyslexic making a spelling mistake. Be honest with yourself, really honest and ask yourself, have you ever judged someone who is in pain or sick? Have you ever commented on someone’s spelling and not thought twice as to why this is? Did you spot the grammar or punctuation errors in this article and tut, not realising I am dyslexic? Or have you ever shunned someone who is socially inept as a result of Aspergers or Autism? Called someone with anxiety or depression an attention seeker, or told them to just “cheer up” because they’re “bringing you down”? Be honest, I’m pretty sure you have.
In today’s society we’re so focused on what we want, what we deserve we forget about those around us. Instead, we focus on how they make us feel and disregard how our actions could hurt them. This reactionary measure, this self-defence mechanism we all have, which once served us well for our survival, now fails us.
It’s easy to get annoyed with someone who always cancels, or walks slowly or can’t work. It’s just as easy to get frustrated when we’re in pain and even easier to take things, meant with love, as hateful comments said to hurt us.
As disabled people, we too are guilty of being ignorant in our own way; we are ignorant to the suffering of those outside our group, outside the disabled community, or indeed of those with different disabilities to ourselves. We nitpick and in fight, all contributing and helping with our own dehumanisation, furthering the cause we are fighting so hard against. Have you ever uttered the words “welcome to my world” when your partner or loved one catches a cold or sprains their back? I bet you have. Of course I can’t tell anyone how to act and it’s easy to type when I sit in a comfortable chair, I have made these same mistakes and probably will again in the future. All I can hope is my message reminds people we all have one thing in common, we are all humans regardless of our capabilities or limitations. Surely a modern and civilised society such as we, those who are most vulnerable should be helped, not punished for something which they didn’t choose.
What about the medical profession?
Perhaps one of the most difficult fights we face is the one we encounter each and every time we see our doctors. It seems that there is a culture of pressure placed upon our medical professionals to never get it wrong. They work in fear of not knowing the answer, when they don’t know they are discouraged from asking for help. Their budgets slashed, and their time squeezed into five minute appointments, barely enough time to diagnose a common cold, let alone a complex condition. The constant pressure to know the answer, and never make a mistake results in a lacklustre and rather arrogant approach to the plight of a patient with any condition, which cannot be easily explained. This practice results in either the patient being dismissed or misdiagnosed. All too often, those with chronic pain and exhaustion are told it’s “all in their head” or accused of drug addiction. In some cases cast assigned with a diagnosis which merely explains their symptoms, but not what causes them. This has huge detrimental effects on the patients self worth and can results in severe psychosocial anxieties. It can be hard to see how others will believe you when your own doctor or medical specialist so readily dismisses your concerns.
All too often we find ourselves knowing more than the doctors we face. If we’re lucky, we’ll find one who is humble. Someone who will accept their lack of knowledge, but many specialists refuse to accept this and dismiss our understanding of the bodies we live in every day.
It is not always the doctors fault, it is the fault of the system and the culture they are born into. Chronic illness is so complex it can hardly be fit into a lowly five minute GP’s appointment, it can therefore take between 3 to 30 years for a person with any kind of complex condition to be diagnosed. Some go their entire lives without knowing what’s wrong with them. Doctors are rushed into a diagnosis before undergoing all required tests, this can be due to a lack of funding and facilities.
It doesn’t help when the industry standard for dealing with chronic illness has very little in the way of concrete objective studies on the effects of the main treatment options available to us.
There are three main treatment options available for a doctor to use when dealing with a chronic pain patient, all with detrimental side effects.
There are accounts of patients being pushed to take drugs which have nearly killed them (myself being one) or damaged them permanently, others ignored until it’s too late. Our medical professionals need to be trained to look for complex conditions and chase the zebra instead of the horse. Not only would it increase the quality of life for those currently suffering, but it could save the country billions in lost revenue. In the meantime, it's up to us to educate our doctors, to become experts in our own condition and change the way the medical profession view us as a community.
With a better medical understanding of chronic illness, and indeed all complex conditions and disabilities, and indeed by making the current capability assessments fit for purpose, we could reduce the number of people able to defraud the system. With better medical understanding of disabilities and complex medical conditions we would keep more people in work, prevent many more conditions developing. Why do we not invest in preventative medicine? Why do we have to wait until it’s too late before we act?
Ignorance losses us billions in revenue every year because the government have made no effort to understand the requirements of a disabled person who wants to work, providing help and not obstacles would allow more of us to return to work and live independent lives, free from benefits. There is little in the way of tailored help for those of us who want to work, and even less support for those who already do work. The government have no idea what proportion of people in the Work Related Activity Group are new claimants, or those returning after being fired due to their illness. Although there are laws in place to protect us, there is nothing to prevent an employer from throwing our CV in the bin the second they see we have a Chronic health complaint.
Instead of looking at their own ignorance, the government are blaming the very people they are damaging. The only real way to prevent people making fraudulent claims is education, understanding and appropriate assessors with appropriate knowledge of the condition they’re assessing. Instead of finding ways of attracting more doctors to our GP surgeries they are forcing existing ones to work long, exhausting hours. Is it any wonder the NHS makes so many errors, when the staff barely get time to sleep, or rest? Surely, it would make more sense to have these essential members of society on top form, looking after them and ensuring their working conditions are perfect, instead of punishing them. Investing in the NHS, with education, staff and improved working conditions is investing in Britain’s economy.
We are so busy looking for others to blame, we forget to look at ourselves and what we’ve done wrong. We blame the immigrants, the disabled, the long term unemployed, we blame our parents we blame everyone but ourselves for everything that has gone wrong in our lives and in society and fail to take action to resolve it, regardless of where the blame lies.
Ignorance breads hate, we stand by and idly watch it happen to those we cannot or do not want to identify with, and we even join in ourselves whilst claiming we are the victims of the abuse we so readily give out. This mentality allows for dehumanisation and a division of society. Each time you stand by and watch as another group gets demonised, each time you call out in hate and ignorance to another humans plight ask yourself…Will there be someone left to fight my corner when they come for me?
Thank you for reading, if you have any thoughts about this subject please leave them in the comments below. If all you see are the mistakes and not the message, then you are the problem.