Thursday, 24 May 2012

Modern day witch hunts

"Freedom of speech is not a white flag to get out of being responsible for one's words"

How very true, I am both saddened and angry about the increase in Internet "trolling" the minute a story is published in any paper from the Daily Mail to the Guardian. About the hardship and difficulties people are facing in the name of Austerity, a little bit of hope dies as the trolls come like a pack of dogs at the smell of blood.

Internet Trolls are not new and this blog post isn't about them per se, but about how the "we are all in it together" mantra, spouted by David Cameron and his coalition government is far more than a sound bite slogan. It is clever spin and places everyone of us in an impossible position of not being able to say hang on this isn't right.

The reality is we make decisions about what is important when it comes to spending our money, we all do it from a small child holding their grubby 10 pence deciding on what penny chews to buy*  to the government with its much larger penny clutched in its exceedingly grubby hand.
The truth is if i asked you to list in order of priorities would you choose to spend

£20 Billion yes that's BILLION pounds on Nuclear submarines* or would you use that money to make sure families with disabled children could have access to the equipment they need to have a quality of life and not go into debt?

You see its not that the penny jar is totally empty, the government has decided what it thinks is important. Its still spending money but with clever spin and the way stories are presents, people don't hear about all the other things it is buying from Nuclear Subs to millions of pounds on research companies 

I know what i choose - and that's the rub the government have been dishonest we all know that yet we cant argue about the need for some reform and some cuts and everyone will lobby for their own particular cause.

But when you read the comments on these stories, the bigoted hate filled rants, about benefit scroungers, how dare they talk about having to cut more when we are all being hit and in this together i am reminded just how well the government have spun it how we are in a state of such fear and anger bordering on mass hysteria we step ever closer to a modern day witch trial. 

Think I'm wrong look back at every time in history where poverty, fear, recession and desperation lead to a time of retribution, neighbour versus neighbour pointing the finger so those self same neighbours don't turn on them.

The Pendle Witch Trials
The English Civil War
The French Revolution
The Russian Revolution

will we look back at Age of Austerity and think how could civilised people sit at computers and suggest children should be put in homes, how just because they have less everyone should have less, where people are frightened and scared and those with blinkered views are encouraged  safe in the knowledge its supported however veiled by of one of the most  morally corrupt and oppressive governments this country has ever seen.

Would people say this to the faces of others, i doubt it but if we who believe in a fair society that is about supporting those in need, and not moralising and subjecting vulnerable people to such hate do not challenge and stand up and counter them then we are a poorer society for it.

You might think this doesn't affect you and you carry on with life and choose to say and do nothing. That just keeping your families safe and as long as it doesn't come to your door then its someone elses problem. They say the heart and soul of a society can be seen by the way it treats the sick and poor...
In this age of austerity its a very black heart indeed.

*Im a 70's kid i remember pennie chews

* News about nuclear submarines budget

Thursday, 17 May 2012

"Are you thick or what"?

desperately trying to write as fast as i could to beat the blackboard is an abiding memory for me - no matter how hard i tried i never managed it. I would spend my time in class lost and bewildered hoping the teacher didnt ask me a question.

Miss Foot's class was ok that was for children like me the the slow ones, the ones who couldnt keep up in class. I finally managed to conquer my tens times table there - it took such a long time to understand that 2 x 4 wasnt 6

Even Now just typing this fills me with a sense of shame that I couldn't learn like other children that I was too thick to learn. I would feel so overwhelemed and demoralised when once again my work was lost in a sea of sngry red pen.

Even now 30 years later the cringing misery when my grammar and spelling is corrected, I make a joke of it and say oh im dyxlexic while inside that voice says "are you thick or what"?
I want to say NO im not i clever I am - look at me I have something to say its important. But the memories of the taunts and the sound of that blackboard being moved before ive finshined coping fromt he board haunt me.

Im not sure what promted this post today - perhaps its the feeling that no matter how hard i try, I will always feel slightly excluded unable to articulate my thoughts and that sense of being inferior and not quite intelligent enough to belong with  the clever kids eats away and saps my confidence...

Its my issue i know that, in the 70's there wasnt a test for it you were labelled slow and if you were unlucky put in the class with the other slow kids. The kids whose work was never chosen to be displayed on the walls, the kids other kids teased and picked on...

and now all these years alter just as we thought we had turned a corner a whole other generation will be in my position - the govenrment calls it progress lets target our rescources ont he children who need it most. Kids like me the slow the learn ones, the cant spell for toffee ones will get thrown away like yesterdays news, left behind trying to copy it down before the blackboard moves.

Saturday, 12 May 2012

Is it psychosomatic then?

Today is Fibromyalgia and M.E/CFS awareness day, the day when the people who live with and charities who support try to raise awareness and inform people about these conditions. 

Uk Fibromyalgia    

Today’s post is dedicated to every person who has had a close family member suggest in some way that quite frankly my dear its all in your head. That somehow this debilitating, fluctuating and sometimes progressive illness is just a figment of your imagination and you are an attention seeking lay about who enjoys lying in bed watching Jeremy Kyle whilst eating Ben and Jerry’s ice cream.

We as in the collective society of individuals use language in a way that almost
predisposes us to see things as a battle and if we show any sign of weakness or giving in we somehow have failed. Add a complex condition thrown in with no obvious blood test or physical sign to point to its gets more difficult. People seem to want to “see” something to believe it’s true.

It strikes me we (I'm as guilty of this too) play things down, hide what’s going on, will struggle on to the point of crisis why?

Is in part that as a society we pride independence and value people who over come adversity, our news papers are full of plucky fighters, battling on winning against the odds to defeat their illness and climb the highest peaks, work through the pain carry on, never letting their illness defeat them.

Why on earth do we as people living with these illnesses buy into this crap, who on earth are we protecting?
We want to raise awareness, face book, blogs, twitter, our jumpers will be full of yellow ribbons with black spots on for FMS, Blue for M.E we will spend a day lifting the lid on, exposing the truth and not hiding it for 1 day the other 264 we will say

“Oh I'm just a bit tired” or “Im fine ya know” or even “a bit spoon less” as if that means anything really. We think people won’t want to hear, they will get bored, it’s chronic so we won’t get a bunch of flowers and the get well soon cards will be faded and forgotten because we won’t get better.

So what how could today change things for the people so ill, frightened and in some cases like the young woman in Denmark threatened with being committed to an asylum on the grounds of insanity for daring to have M.E

We can only change ourselves and start being truthful, I don’t mean we moan and whinge every five minutes but we stop playing the dam game. “I must carry on and do everything I did before in public while sobbing and seeking support in private one”

 Today for me is about not only reaching out to others but to learning to draw a line and educate myself and other people – if you really want to raise awareness today then change one thing – make a decision to draw the line under dismissing your own illness and passing it off as “Just a bit tired” tell the truth. I know it’s hard, and you want to show the world your best face, because like I said recently you can cling to the idea of one day you will recover and pick up your life as it was.

If you know someone who says I thought I might run a marathon and raise money for charity ask them to run for M.E or Fibromyalgia to research it better and find a cure.

Have a card with a link on it and when people ask give it to them to go read up

Seek some help if you are stuck in a cycle of boom and bust where you push yourself to do too much and then wonder why you make your symptoms worse.

But above all change your language, catch yourself when you say things about not giving in, only asking for help in a crisis, that somehow equating living with an illness that by its nature is unpredictable is just an obstacle in your path and if you battle it will somehow make it surmountable.

Perhaps if we all put a little less pressure on ourselves to be heroic, to cram so much into our life we never pause and don’t praise the other just as important qualities in people we will forever be stuck in the ridiculous circle of battling or Giving on what’s wrong with saying NO – this is my life is sometimes good, sometimes bad and I make the best of it.

We don’t because we fear being judged, left alone or abandoned and above all we try to live up to some imaginary standard that those closest to us feel it’s ok to make us feel bad about ourselves. The truth is people only have that power when we give it to them. Take your power back and learn to use it for yourself.

It isn’t easy changing yourself or learning to do things differently, and saying No, or accepting or even saying to other people hang on you don’t have that right to say that to me. But it is possible so do one thing today if you have

M.E or Fibromyalgia tell the truth and challenge you over one thing do it differently – stop yourself from perpetuating the myth it’s just a little bit of tiredness. Be honest not only with others but yourself. Superman and wonder woman are fictional characters for a  reason.

If you know someone with it – hey your reading my blog so you do  follow a link at the top of the page and read up, think about how you say things and do you think in terms of battling on or giving up? 
Dont feel sorry for me, but please if you hear others around you talking like it then challendge them too. I dont mean strangers in the street, but friends, loved ones. think about your langiage and how you use it. 

Why have I talked about language – simply language is powerful and if we continue to use it to diminish and belittle our illnesses into nothing very much how on earth can we expect anyone else to change their opinion and view point.

Change comes from within – change you and you change the world around you 


Tuesday, 1 May 2012

Blue Badge Vigilante's

Today is Blog Against Disablism Day - this is my first attempt at blogging about it, we officially don't accept Racism in this country, there are recent incident of people being arrested for tweeting racist hateful comments, or posting on facebook. But I haven't seen any high profile arrests for similar incidents of hate crime against sick and disabled people.

I'm struck that for many many people me included the fear of being targeted is real and sadly for many its a reality. Especially living with an invisible illness - before i had to use a stick full time i was tutted at and often ignored if i asked to sit in the disabled seats on buses - I was once asked why?

Explaining i couldn't stand up and needed it only elicited scorn and i was so embarrassed i wanted to curl up and cry. No one helped and everyone looked away. It seems so many look away and don't stand up for others, I notice now I do use a stick its easier like i have a badge "see look at me the flowery stick user I'm legit now"

So how did we end up in this state of affairs, hate crime has increased 100,000 disabled people were victims in 2009/10 I found this very helpful video talking about it Disability Hate Crime I don't have time to go into all the whys and wherefores of why this has increased,  the report i read yesterday commissioned by the MS society Fighting Back - Ms Society Report  can perhaps point to one of the many reasons.

One of the saddest and most shocking stat is that 1 in 4 (24%) think disabled people exaggerate their symptoms. I really shouldn't be shocked anymore - but I am. Disablism is alive and well in our modern tolerant society. The report also says that even people aware of MS have similar attitudes

So what has this got to do with a Blue Badge* and an invisible Illness, lots as it happens. I am seeing more and more anecdotal evidence of people fired up about protecting disabled parking spaces for the "real" disabled people* 

You could say its misguided they think they are doing a good thing, yet show such a pathetic lack of understanding and out dated attitudes of what constitutes disability all they are doing at best is isolating people further and at worst perpetuating the myth that you are only disabled if you use a wheelchair and are paralysed in someway. Everyone else it seems is exaggerating and lying.

I wish I could say I'm shocked but I'm not anymore. The fear this kind of behaviours generates is palpable, I only breath a sigh of relief when LM gets my wheelchair out like its a symbol of "see I am disabled and need it" how bloody appalling is that.

I wish I had lots of quotes from people hassled, spat at, pushed, shoved, verbally abused for daring to use a Blue Badge and parking legitimately in a parking spot. Yet this go unchallenged, aided and abetted by society the don't look, don't say culture of not stepping in to protect others is a sad indictment of us.

 "on the way home I popped in to get my little 83 year old friends shopping list and was met on return to my car by a very obnoxious man.. long story but once again - you don't look disabled came into conversation.. this really upset me"

"I have MS and I am 42 sadly I dont look disabled ( well I dont have a wheelchair!) and get shouted at quite a lot! even had an old fella standing in the disabled bay I was trying to park in shouting that I couldnt park there! and recently on leaving asda ( I quite often take my son in his wheelchair there after school!) the girl asked me if I had a parking ticket to be refunded, I said no and she glared at me and told me in no uncertain terms how disgusted she was with my for using his badge! I wasnt it was my badge in the car his is in the kitchen cupboard! dont think she belived me and to be honest sick of having to defend myself from every expert who dont know a thing!"
2 quotes from people with invisible illnesses 
Assumptions are dangerous and make an ass of us - I have learnt to ask for help and 90% of the time i am treated with courtesy and help. There is a vast spectrum of what it means to be disabled or impaired, or sick or struggling or what ever term you choose to use.

Even on here i worry about what to say am I chronically sick? or because my illness will never go away and this half life is as good as it gets am I now disabled? i don't know and perhaps that's some of the problem.
If we don't educate and challenge ourselves and people we know about our illnesses and watch what we say how on earth are we ever going to educate anyone else.

Disablism is both a problem for us and our problem, we are members of society yet I know I'm as guilty as anyone of making assumptions and judgements of people I know nothing about. are you?

*Blue Badge is only awarded to people who either have High Rate Mobility and therefore cant mobilise (walk) more than 50 metres either at all or without severe discomfort and pain or now have a medical to see if they met the criteria.

*Real Disabled people - I have no idea what one is but its something i see all to often from the government to people shouting at vulnerable people in car parks