Saturday 19 March 2016

What The Actual Fuck?


A friend posted an article on Facebook the other day, about scientists working on a plastic eating thing to help reduce landfill. I didn't read the article because before I had chance my brain went "What the actual fuck?" Don't get me wrong, I applaud the fact that science is trying to help solve the massive environmental problems facing our planet but it staggers me that we're so stupid as a species.

Imagine you have a lovely white dress. It is fresh and clean and perfect for the occasion. Now imagine you lay in the mud and roll around. Your pristine dress is now filthy, smelly and not fit to be used. You decide that you have a problem and go and invest your wages in a new white dress. The next week you wear the new dress. You see a cowpat. You lay down in it and roll around. The dress is ruined. You spend your money buying a new one. The following week you wear the new dress. You see a muddy puddle. You lay down.........at what point do you stop wasting your money on new dresses and simply decide to stop fucking rolling in crap??

It's the same principle here. Whilst we need to deal with the amazing about of shit we've done to this planet of ours, why do we keep doing the things that fuck it up? I'm pretty damn certain that no one in their right mind would buy a new dress every week just so they could roll in mud. They would simply not roll in mud. Yet as a species we continue to pollute our own planet, destroy trees and fields and lakes, dig holes and fill them up with rubbish and generally treat the place like a teenage boy treats his bedroom. We do this in the knowledge that we cannot go and buy a new planet. We do this in the knowledge that we are not just sowing the seeds of our own destruction but watering them and harvesting them too. We are simply too bloody lazy and too intent on pursuing own own pleasures to stop our wanton damage.

It's not just the environment that we're stupid about. Knowledge is a wonderful thing. 24 hour news, the internet, newspapers.....all these things can provide a wealth of information from the latest events in the world to the best restaurants to eat at in our home town. The thing is, these things only provide knowledge if we use them wisely otherwise it just gives us a load of old bollocks. Reading, researching and then making up our own minds is how we should do things but hey guess what? We're too bloody lazy to do that so we just believe everything we hear and read, especially, and this is key here, if it comes in the form of a meme on Facebook or if our cousins best mates sisters uncle said it.

And what about politics? Many many people spend vast amounts of time bemoaning the loss of our NHS, complaining about the appalling state of our railways, whinging about how the cost of living keeps rising and wages don't and so on. These are ordinary people. Not radicals, not raving lefty nutters, not activists. Just Susie who works in the hairdressers or Bob who does the local window cleaning round. They are horrified at the unfairness in society and how broken our country is. They know all these things are affected by our Government and our Politicians AND THEY CARRY ON VOTING FOR THE SAME PEOPLE ANYWAY. The very people who are fucking them over. Why? Because they're too sodding lazy and intent on pursuing their own pleasure to do anything about it.

It amazes me that a species that produces such genius, is also capable of behaving in such a mind numbingly, stupidly destructive way and not just to each other. Racism, sexism, discrimination of all types and violence whilst abhorrent don't surprise me, because essentially we are selfish but it is for that very reason, selfishness and self preservation, that means I can't understand the human beings ability to rush full pelt into self destruction. We all know what we're doing to ourselves on a global scale but we do it anyway, simply because we're too fucking lazy and intent on pursuing our own pleasures to change our behaviour. We have set ourselves above every other species on the planet, made ourselves the rulers of the world, all based on our so called superior intellect, yet you don't see any other species destroying itself just because it can't be bothered to do anything about it.

I look at us humans and feel justified in thinking "what the actual fuck?"


Monday 14 March 2016

The hidden cost of disability

You may not be disabled yourself but you probably know someone who's disabled, even if you don't realise it. Many disabilities are obvious but equally many are not. Some disabilities are physical, some mental. Some don't require frequent treatment, some do. Disability is as varied and diverse as the stars in the sky but they all have one  thing in common - the impact on the people living with them.

Some of the impacts are pretty clear. Having a disability probably means you have to adapt your life in some way. It may mean you need regular medication, it may mean you need adaptations to your physical environment or you may need help from someone to do everyday tasks. Some of the impacts are not so clear. Many people with disabilities become depressed as they try to come to terms with being perceived as different from everyone else and actually being different from how they once were. Many people have difficulty finding work or have to give up their jobs.

We hear stories on the news of people involved in terrible accidents or atrocities that have left them disabled in some way and maybe we think "How would I cope if that were me?" and we shudder and feel relieved that it's not us needing a wheelchair or a guide dog and so on. One thing we don't often think about however is the cost of being disabled, and by cost I DO mean financial cost. It's bad enough to live every day with a disability, for your life to be turned upside down, for everything most people take for granted to be a challenge but to suddenly realise that it actually costs you money to be disabled it quite an eye opener.

There are a lot of wrong assumptions are what you get for free if you're disabled. For example, it is assumed that all disabled people get free prescriptions. In fact, you only get free prescriptions if you have one of a few specific conditions such as diabetes or thyroid disease. The vast majority of long term conditions requiring medication DO NOT qualify for free prescriptions. I have to take 5 different types of drugs every day. Based on current charges that costs £41 a month. Every month. For the rest of my life. That's nothing compared to the amount of medications and treatments some people have to pay for.

It is also assumed that any adaptations you require are paid for by the Government. Again this is not true. Some things are provided but cut backs mean that local councils, who are primarily responsible for making adjustments etc, just don't have the funds to provide people with all that they need. So the cost of anything above and beyond the basics falls to the disabled person.

The thing that really bites financially though are the things that most people wouldn't even think about. Those with difficulty walking have to pay for taxis where most would walk or use public transport and those that rely on a car, have to pay for extra petrol for trips that most people would do on foot. People who have difficulty using their hands have to pay extra to buy ready prepared food because they can't use a peeler or a grater or lift pans. People who have continence issues have to pay for extra washing products. If you are unable to work, you will probably pay extra in fuel costs because you're at home and use more electricity or gas to keep warm and to see. All these little extras add up over the course of the months and years and yet remain a hidden cost.

Now I know what you're thinking "ah but disabled people get benefits for all that stuff". Firstly it's a MAJOR assumption to think that all disabled people get benefit. Some don't need it. Some need it but don't get it because successive Governments have made it increasingly hard to qualify. Many get it but find it doesn't cover the costs involved because contrary to popular belief it isn't a fortune. The Government would have us believe that disabled people are getting money that they don't need which is why they're trying to cut disability benefits by £30 a week. Just think for a second what £30 a week means to you. A takeaway for the family? A night out at the pictures? Some new jeans? But what if £30 a week was the difference between being warm and cold? What if it were the difference between eating and starving? Or the difference between taking medication and not? Life and death......for the sake of £30 a week.

I do not know a single disabled person, myself included, who gets benefit that they do not need. Forget the indignity of having to prove over and over again that you really are disabled to even qualify for benefit. Forget the incomprehensible delays in actually receiving any help. Disabled people need their benefit just to have a semblence of a normal life. To do the things that everyone else takes for granted. And like so many things in modern life, it costs. No one wants to be disabled. No one asks for it and we would give up our benefits a thousand times over to not be disabled. But we can't. So stop and think for a moment when you read in the paper how much it costs the country to care for disabled people and remember the hidden costs for the people who are actually affected. Us.

Tuesday 13 November 2012

"Disability Sucks" or "How I Learned to Start Stressing and Hate My Employer"

As you may have gathered by now, I am disabled. I will be disabled for the rest of my life (unless they find a miracle cure for all three of my conditions). Being disabled, even in this so called enlightened age, is a hard struggle every day, particularly when the disability is invisible. It's unbelievably difficult to go to bed at night, knowing you'll have to get up at least twice due to the pain you're in. It's incredibly frustrating not being able to do the simplest of tasks, such as dress yourself properly or make a cup of tea, because you're too weak or it hurts too much. It's hugely demeaning to have 'accidents' because it takes you so long to get to the loo. It's amazingly soul destroying and isolating not be able to work with your colleagues because you can't get to your workplace or stay there for a full day. Some of you will be able to appreciate this but it appears my employer does not.

Two years ago when I was disagnosed with FMS, I underwent a referal to the Occupational Health Advisers. They confirmed I was covered under legislation and agreed that working from home when I needed to was a sensible way forward. My manager agreed and since then, I have done just that. However, they 'forgot' the little matter of providing me with any equipment to do my job so I've been using my own.

In May this year I'd finally had enough of having to muddle through and told my new manager I wanted a works laptop and phone. Hardly a big deal I thought. How wrong I was. I was told no, as there was no business benefit. I argued that legally they couldn't discriminate against me in that way. They then decided to refer me to the Occupational Health Advisers again. The OHA report came back saying I needed a home assessment to determine what equipment they should get me. Good, I think. It would appear though that OHA referals are meaningless because I was then told that I could no longer work from home at all and would have to attend the office every day.

Now, as you can imagine I wasn't too chuffed about this, so I pointed out that this was wrong and they should go away and re-think. Today I was told that the OHA report was rubbish and I they have to start the referral process all over again. Oh, and apparantly now the role of OHA is to back up whatever management say because apparantly I don't now need a home assessment, it has to be an office based one.

Today, for the first time in a very long time, my employer made me sob. I sat there, heartbroken, because in spite of being a very capable and dedicated employee, I was being made to suffer because my employer finds disabled people too difficult to deal with. I'm now terrified that if someone doesn't do something soon, I will be forced to attend the office everyday which is impossible for me. I'm terrified that when they very quickly realise I can't do what they demand and end up going sick, they will sack me. I'm terrified that any shred of dignity I've managed to hang onto since falling foul of this disability will be ripped away from me.

So my friends, I'm sorry if I'm not my usual cheerful self right now. If you'd like to see normal service to resume, go see my employer and kick them somewhere it will hurt.

Tuesday 18 September 2012

Relativity

No...nothing to do with Mr Einstein and his amazing theories. More to do with the fact that everyone's experiences, emotions and troubles are relative to them. Let me explain....

I'm in pain. A lot of pain. Every day. OK, I'm not dying. Fair enough, I'm generally in good health. Yeah, I know I'm not starving/in a drought/at war/oppressed. All that's well and and good but I'm still in pain. A lot of pain. Every day.

It doesn't matter how much I appreciate what other people are experiencing or how much sympathy I have for them. My experience is relative to me and my circumstances. Being understanding of other peoples plight doesn't alter the fact of my own suffering, however trivial it might seem.

Equally, when the other half comes home from work and has had a crap day, the fact that I'm in pain doesn't detract from the bad time he's having, even though he has sympathy for me. It's relative to him.

So where am I going with this? Well, I guess I'm saying that none of us has to be martyrs to our suffering, whatever form it takes, in case someone else is having a 'worse' time. It's ok to say "things are pretty shit at the moment" and be entitled to some understanding.

Oh, and on the subject of understanding....when someone is suffering it's not enough to say "I understand what you're going through" and assume that absolves you of responsibility. It's not enough to ask someone how they are and assume that just by asking you've done your duty. If someone is suffering, do something practical to help them. Even if it's just doing doing the washing up without being asked, or tidying up your own mess. Understanding is a wonderful thing but it means nothing if it's not backed up with some action.

So there we have it. I'm in a lot of pain, every day, and I'm entitled to express that and expect some help from those around me. It doesn't make me weak, it doesn't make me heartless, it just makes me human.

Oh and just for the record, Einstein rocks!

Tuesday 3 April 2012

Water Water Everywhere...

Well as you all know by now, I am disabled and the cold wet weather really plays havoc with my condition. Having had a lovely couple of weeks weather wise, I was really starting to feel quite well and then the heavens opened this evening. I popped to the local shop and ended up soaking wet so was having a typically British whinge about the bad weather when I was severly told off by a random woman in the shop.

"We're having a water shortage don't you know and we need the rain" she states emphatically.

I really wasn't in the mood for a discussion, having only stopped in to get some tea and fags so just nodded and shuffled off home again. The thing is, it really bugs me.

We live on an island, with lots of rivers and a temporate climate, yet we regularly have problems with shortages of water, both domestic and industrial. Yet other European countries, landlocked and much warmer, don't seem to suffer the same issues. Why?

Why do we not invest in desalinisation? Why do we not upgrade/repair our ancient water systems? Why do we, the 'consumer' pay through the nose for water supplies and sewage removal only to be told we can't use the water as there isn't enough?

It's madness. The gutters near my house are literally overflowing with water right now but next week we'll be told "save water, don't use hosepipes, we're almost a desert".

It's another example of a privatised industry ripping off the public of our country. It's what happens when a government is more interested in money than the lives of the people it's meant to represent.

I could go on, but I'm cold and wet and desperately need a cup of tea......

Wednesday 29 February 2012

Ode To The Woman In The Pink Top

I am disabled. I have FMS which, for the uninitiated, doesn't stand for fuckingmegaspastic but Fibromyalgia Syndrome. It's a non life threatening neurological condition for which there is no cure and very little in the way of significant treatment. I'm able to do a full time job with some adjustments and I don't get any benefits or help to manage my condition. I use a stick when I go out to help with walking and balance. Other than that, I pretty much get on with it. I refuse to be brought down by the change this condition has brought to my life. Today I had to travel to London to speak at a meeting. All was going well with my travels until it was time to get the train home.

I understand that after a long day at work, everyone is tired and wants to sit down. I also feel tired after a day at work. Then again one of the symptoms of FMS is chronic fatigue so I feel tired all the time. Not just a bit sleepy or worn out but utterly, totally, mentally and physically exhausted. So tired that I can bearly lift my arms or move my legs. So exhausted that I feel like my bones are made of lead. So worn out that stringing a coherent sentence together is a challenge. The other major symptom is the accute pain I have in all my muscles and joints. Burning, stabbing, shooting pains in my legs and arms. Stiffness and pain in my neck and spine. Crippling headaches and facial pains. That's without mentioning the poor balance I have, the numbness I get in my feet and hands. The problematic eyesight, inability to sleep for longer than three hours and so on.......

I understand that the price of a ticket is costly and people feel that entitles them to a seat. I also find the cost of travel expensive. I don't get any financial help in spite of the increased cost that living with a disability brings. The Government don't consider my condition warrants any assistance. So I pay out more than able bodied people just to live a semi normal life through no fault of my own.

So what's all this about? Am I having a 'feeling sorry for myself' moment? No.

I've said all this because I want to make able bodied people who use public transport wake up to the ignorance and disrespect they show when a disabled person gets on a bus or a train and they watch them struggle and STILL don't give up their seat.

So back to my train home....

To you, the young man in your silk blend purple shirt, glancing at me from time to time with a pitying smile on your face. I don't want your pity, I want your seat.

To you, the young man in the white designer jacket and the bottle blond hair who stared at me all the way home, whilst sucking your teeth. Yes I have a walking stick, not a second head. But if I did have two heads, so what? I don't want your respect, I want your seat.

To you, the middle aged EDL supporter, taking up two seats clearly marked as reserved for disabled people because you had a sports bag with you. I don't want your ignorance, I want your seat.

To all the other fit and able people on the train, who covertly stared at me whilst not looking me in the eye because they were ashamed that they knew they wouldn't be the one to stand up and offer me a seat. I don't want your shame, I want your seat.

To you, the lovely woman in the pink top, who in spite of having a heavy bag, in spite of being a woman on a train full of men and in spite of being obviously knackered was the only damn person on the train to get up, smile and offer me her seat, thank you. You are a perfect stranger who I will never meet again but you touched my life today. You gave me your seat.

Saturday 1 October 2011

Pegs

Why oh why don't the pegs I have stay on the washing line when I take the dry clothes off??? It's not a complex operation. I mean I can understand printers, faxes and even mobile phones refusing to comply with my naive requests but a peg? I mean it's only two bits of plastic and a small spring. How can a cheap and simple tool go so badly wrong?

I suspect, sometimes, that actually they're not inanimate objects at all. I suspect that these innocent looking everyday objects are really demons in disguise, sent up here to make my life a little bit worse on a tiny scale. I suspect hell knows that after years of being gently prodded away at, one day I will snap and impale the cats through the eyes with the damned pegs (this is probably an exaggeration). One day I may go into town, buy a power tool and nailgun my wet laundry to the washing line.

However, until that day I will simply comfort myself that if nothing else, all the bending down to pick up pinged off pegs is at least a form of exercise. Heaven forbid I should attempt anything more vigorous!