More bile in the Daily Mail

You know I used to think that Bel Mooney was a sensible sort of agony aunt.  I don't expect to agree with everything another person says, but I felt that she tried to be compassionate, to see the other person's point of view.  And then I read this article : http://www.dailymail.co.uk/femail/article-1379846/Thats-spirit-The-bestseller-believes-warmth-heart-transform-old-age.html

Now admittedly this isn't an agony aunt page, it's about how to grow older without actually falling to pieces, so I couldn't help but wonder how this bit of bile was pushed into the text...After extolling the longevity of people on a Japanese island, Bel writes:


'Contrast that with Britain, where it was revealed this week that 80,000 of us are too fat or too dependent on drugs or alcohol to work.  Think about that. Slovenly zombies who have given up on dignity, but claim benefits in order to buy more disgusting stuff to shorten their useless lives. There’s mostly no excuse for their attitude — although, of course, people will always try to explain it away.'


Well, that's nice to know, isn't it?  Apart from struggling to cope, going blind and feeling my independence slowly slipping away, I am a slovely zombie who has given up on dignity and has a useless life.  

And notice the authorial 'we' : '80,000 of us' although I bet Bel doesn't really include herself in their number.  

Well, don't forget as I am so fond of telling anyone who will listen - everyone is just a step away from disability.  The funny thing is that no matter what they thought of the disabled before, they don't half change their tune afterwards.  

Blaming the disabled....

They have demonised us, trivialised the conditions that cripple us... and now they want to blame us.  We shouldn't really be surprised. 

But that doesn't mean we should just take it.  The powers that be have always liked the idea of dividing people into deserving and undeserving groups.  In Victorian times the deserving poor could have a pat on the head, a bowl of gruel and a quick and uncomfortable stay in the workhouse.  Those considered undeserving on the other hand got nothing apart from a swift kick in the bum (and maybe a stay in the local lock-up for good measure.)

These notions - that the sick, the poor and anyone else who is considered an inconvenience - can be set to one side and ignored for the most scurrilous of reasons, should have been long since discredited.  The fact that they are resurfacing and worse, supported by the people who are supposed to be running this country, is worrying.

Who gets to decide these things?  Anyone who is disabled shudders when you mention ATOS who are clearly not up to the job of even deciding factual matters such as disability.  Can you imagine what would happen if we added a moral dimension to this?  The tick-box mentality would run amok....

Question 1.  How could you have prevented your disability?  (Note that they will not ask 'Could you have prevented it - that will be a foregone conclusion.) 


And no matter how you answer, you will be doomed because the whole thing is so badly skewed.  And nobody is capable of using even a smidgen of common sense.

A while back, I applied for a disabled person's bus pass - I need to be able to take a companion with me when I travel.  I was told I did not qualify any more because the criteria had changed.  Oh, they had changed all right.  It is no longer enough to be partially sighted, or blind, and have mobility problems, you now have to have a visual AND hearing disability as well. 
I pointed out that visual problems are highly disabling when you need to travel, but was told there was nothing anyone could do, because it was 'the guidelines.'
So I asked, 'If the guidelines were changed to allow bus passes only to people with two heads born in Alpha Centaruii, would you go aloong with that too?'
There was a confused silence.  'Well, no....'
'And the guidelines allow for the application of some discretion?'
'Well, yes....'
'Then why can't you apply it in this case?'

I got my pass eventually.  But I can't help wondering how many others just give up.

The horrors of trying to go shopping....

Last Friday my husband suggested taking me out to buy some clothes.  I was looking and feeling a bit better, and if I felt up to it, he was happy to come with me.  My clothes are in a shocking state (being large I am limited in my choice of retailers) and I desperately needed new trousers.  We got a train, and the shop I needed was just a kick in the bum from the station itself.  Great.  What could go wrong?

Well, the shop, (It-that-shall-not-be-named) for a start.  Yes, they allowed me to use the disabled cubicle, but my husband was not allowed to come in to help me because...'We've had complaints about men in the changing rooms.'
Okay, could he at least sit outside (they used to have a settee nearby where people could wait) so I could show him my clothes to check if they were okay?  I explained my vision is very bad and I wouldn't be able to see for myself.
No, that wasn't possible either.  Because.... 'they'd had complaints about men sitting NEAR the changing rooms.'
In fact, they'd even had complaints about men being anywhere near the entrance to the changing rooms.  The best they could offer was that my husband could sit in the shoe department and wait for me there.  Which meant I had to change by myself, and then leave the changing room to show him my clothes - highly embarrassing when most of them didn't fit.  I was made to feel as though I had walked into their shop with some sort of pervert in tow.

I tried to explain that I needed help changing, but the assistant was unmoved.  'I'll help you,' she said.  Only I don't like strangers seeing me undressed.  I doubt she would like it either.
Anyway, while I was struggling to manage by myself (I really did need new clothes or I wouldn't have bothered) some other women came in, soon followed by their adult sons who stood at the door of the changing rooms for ages, chatting away.
I queried this - why could they be present and not my husband when I needed him - and was told that 'they were the customer's children.'
I explained that my companion was my husband of many years and this seemed like one rule for some and a different rule for others.  I was then told that my husband could also stand at the entrance to the changing room now (only of course, with two adult males already there, there wasn't any room.)

Well, I struggled with the clothes.... needed a pair of trousers in a certain size but nobody could possibly look in the store room to see if they had any.  I found three tee shirts I liked and asked them to put them to one side and I would definitely buy them later.... only of course, when I went to get them, someone had removed them and nobody knew where they now were.  (You might think they had been returned to the clothes rails, but no.... heaven knows where they went, outer space, probably.)

So the upshot of all this is that I spent ONE AND A HALF totally useless hours, struggling in that shop, my husband made to feel like a peeping tom, and came away with nothing.

Except of course, the resolve never to go there again.

This story has a happy ending.... eventually I visited another shop  and the difference couldn't have been greater.  Nothing was too much trouble, trousers were found in the stock room, and I came away with exactly what I wanted.

 Now why the hell couldn't the first shop - It-that-shall-not-be-named  -  have been more like that?

My Working Life

I noticed that Sue had done a post on this in her Diary of a Benefit Scrounger blog.  I thought I would share my experiences with you all here.... a bit different maybe, but that's the thing about disability.  As I am so fond of saying, we are all only a step away from it. 

I was always healthy.  I was always strong.  I was something of a tomboy, stocky, broad shouldered, capable.  It never mattered what came my way, I coped.  I even coped to help other people, especially family.  I can't say I ever did jobs that I particularly loved, at least not when I was younger, but I worked hard, and I always put a lot into whatever I did.

I married, was widowed (had to nurse my young husband for several years.... but hey, I was strong, I coped) and remarried.  Had a large family.  Never had any money.  But I turned bringing up my children into a full time job.  I coped.  I could make a bag of flour into an endless supply of cakes, pastry, even bread.  I learned to quilt (bought oddments in jumble sales and made quilts to keep the kids warm.)  I worked when I could (as a music teacher) from home, and I made a little extra that way. 

My husband became ill and had to give up work following a car crash.  But I told him not to worry about giving up his job - we would cope.  I would do whatever it took just to help him get better.  And I did.  I sold home-made sandwiches.  I sewed for people.  I knitted for people.  We had little money, no car, but we made sure the children had happy lives, plenty of walks and picnics, all free or extremely cheap.

Then one of my children became ill.  So ill that she never went back to school again.  But I coped.  I home educated her as far as I could, helped her even get a degree when she started to recover years later.  (I don't have a degree myself, so that was no mean feat.)

Slowly, I noticed I wasn't feeling quite right.  I call it the Salami Syndrome.  Slice by tiny slice, so that you don't really notice until things are really bad.  It went on for years.  I fought it.  I had to.  People depended on me.  I never went to the doctors for myself, onlly for other family members.  But I kept going.

Until..... there comes a point when you cannot ignore it any longer.  Things were badly wrong.  It took years to get a diagnosis and even now I'm not convinced they've got it completely right.  Because I had a rare disease there is little research into it, and some doctors dismiss it with a 'Well I've never heard of it' remark which puts hell in me.  If they haven't heard of it they should bloody well go and look it up, don't pretend that because they don't know about it that's it, it can't exist!

So.... nothing remarkable in my life.  Hard work.  Caring for others.  Seeing my own health go downhill.  From being strong and capable, I am suddenly the one who needs looking after.

But worse than that, I have become one of the Others.  The workshy.  (Actually I'm still self employed, but hey, who cares?  Workshy sounds better.)  One of those languishing on benefits (Actually I have never languished in my life.  People who know me say that I wouldn't know how to.) 

But I'll tell you something.  Something that people like those in power don't realise about people like me.  Our sickness toughens us up.  It tempers us in the fire.  We have nothing to lose.  After all this, do they really think I am just going to roll over and give in? 

No.  I won't give in to my health problems, and I won't give in to anything else either.  And certainly not to a bunch of gormless politicians and penpushers of all parties who believe that I am a problem that needs sweeping under the carpet.
For them I have only one thing I really want to say.  'F*** you.  And the horse you rode in on.'

joining the dots....

Yesterday was a trip to the hospital.  Despite my compromised immune system (and that of other patients on similar medication) we had to share the waiting room with a little boy with chicken pox.  The potential for that to go pear shaped doesn't really bear thinking about.  Shingles in my situation could be fatal.  I did mention it to one of the nurses who got me out of the waiting room (I had my scarf wrapped around my face at this point, looking like a Ninja).  But the thing was it wasn't only me who could have been affected.  Plenty of others were there too.  The nurse who got me out of the waiting room said she thought it was wrong but she 'wasn't allowed to comment or do anything.'

Anyway, my eyes are going bad again.  I feel like I've been punched in the stomach.  I mentioned it to my husband briefly, but I don't want to dwell on it with him because I can see it's tearing him apart.  I just tell him I can live with it (not exactly a lot of choice there) and live with it I will.

The real fun and games though, began at the hospital pharmacy.  My medication was changed, so I had to pick up a new, two week prescription.  Simple, you might thing.  No. 

The thing is, that the medication I am on is hideously expensive.  So although I was prescribed 112 tablets, they only come in boxes of 100.  And they will not prescribe two boxes because that would be too much and too expensive.  Nor can they split a box to give me the correct amount.  So they sell me short but don't tell me.  As it happens, I have some tablets I can use from my last GP prescription.  But I can't stockpile these because:
(a) Once the GP knows I have had a hospital prescription, they will stop my tablets for as long as they think the hospital prescription will last (which means it will be short)
(b) once I don't pick up my tablets as usual from my local pharmacy they will stop ordering them.  This means that the next time I go to pick up my prescription, they may be out of stock - and their suppliers will also be out of stock.  Which means I can't have them.

And all the hospital pharmacy needed to do was split the bloody box!!! 
I did ask them why they hadn't.... 'We aren't allowed to.'

So what I would really like to know is, where are these invisible NHS tyrants who force all and sundry to through common sense and joined up thinking out of the window? 

Because I would very much like to get my hands on them.

There is no alternative.... and the mysterious Plan B

When I was young, I can remember arguing with my father quite a lot.  He wasn't normally a very patient man but when it came to talking about life he seemed to have endless patience during my teenage years.  His questions were often simple, but the lessons they provided were profound and I shall always be grateful to him for that.

Story Number 1
So when I was complaining about something more than usual one day, he simply asked 'Why don't you change it then?'
'I can't.'
'Why not?'
'Because I don't have any alternatives....'
Slowly, patiently, my father explained that there are always alternatives.  I may not know what they are, I may not like them, some may not work (but some certainly will).   'There is always a different way of doing things, there is always a better way and it's your job to find out what that is.'

Story Number 2
Another day, I was complaining that my life lacked any direction.  I didn't know what I wanted to be, I didn't know what I was capable of becoming (the jury's still out on that one by the way) and I lacked any sort of plan.  The plan I had carefully nurtured through High School wasn't working out.  And there was nothing I could do about it.  Or so I thought.
'Go to Plan B,' said my father.
'I don't have a Plan B,' I wept.
'Ah.  But you should always have a Plan B for times like this,' he explained.
'I didn't think I would need it,' I sobbed.
He smiled, shook his head.  'I know.  But none of us knows what the future holds, you can't have just a single plan and stick to it.  You must always have a couple of extras, just in case.'

My father knew what he was talking about here.  Although he worked all his life, fate had thrown him a couple of horrible blows, and if anyone knew about alternatives, and Plans B through to Z it was him.  So I listened.  And it helped me to grow up.

Fast forward to the present day, where apparently well educated politicians have the gall to stand up and claim 'There are no alternatives' 'There is no Plan B' and I realise what a bunch of childish buffoons they are.  Incapable of listening, they may have been expensively educated but have come out the other side knowing nothing of those they want to rule.  They simply aren't interested.  Ruling is an end in itself, they can't - won't - see beyond that.  They certainly don't think that history has anything to teach them on the subject.  But it does....

At the beginning of the twentieth century there was a powerful ruler of many people, called Nicholas.  He ruled over millions whom he never understood.  He thought he was invincible.  He certainly never thought he needed alternatives or a Plan B.

And look what happened to him. 

Fighting back

The title sounds fierce - the reality is a little more pathetic.  However, it's better than nothing.  Years ago, when I was young, I would consider that 'fighting back' would at least require me to man the barricades or something.  Nowadays fighting back means getting up, getting dressed and putting my bra on.  I know which is more difficult for me.

And yet, in the midst of all of it, I force myself to look for the beauty in life.  The sound of the birds.  The sparkle of a raindrop on a dead plant on a windowsill.  My husband telling me he still loves me after all these years.  I was bright and lively when we met, full of strength.  He used to tell me that I was the strong one of our partnership... but now I weep when I have to be helped to do simple things I once took for granted.

So today I am going to fight back.  I am properly (if painfully) dressed.  I have brushed my hair.  I have put on some make up.  I look considerably better than I feel.

And that's a start. 

Now, lead me to the barricades!