Politicians have to make decisions that affect the lives of others every day. That's part of their job. And sometimes such decisions will be unpopular. But at the very least, those affected by the decisions have the right to expect that those making them will have some idea what they are doing. Not so with cuts to disability benefits however.
Today in the Daily Mail we read how Mr Cameron is hiring a personal trainer to help him deal with stiff muscles and joints.
http://www.dailymail.co.uk/news/article-1394417/Keep-fit-Dave-calls-250-hour-physio-tummy-trim.html
This trainer is apparently costing our intrepid leader £250 per hour. PER HOUR. That's pretty close to the amount paid per month to someone claiming DLA at the highest rate for mobility (and you need more than stiff muscles and joints to qualify for that) and the lowest level of care. Imagine.... one hour against a whole month. Better still, take time to do some maths here. If that trainer worked just 8 hours a day, five days a week for four weeks it would be £10,000! Staggering stuff, eh?
Yet this government has presided over - and encouraged with all its 'government sources' leaks - the most shameful villification of the sick and disabled in living history. Even though DLA is given to those who can work (as well as those who cannot) it is to be replaced by a personal independence payment.
Think about it. Personal Independence Payment. Well, it all depends what you mean by independence, really, doesn't it? Because the sort of independence one can buy on £275 per month is quite different from the sort of independence you might expect for £250 per hour.
We're all in it together? Live in the real world, Dave.
Showing posts with label government welfare cuts. Show all posts
Showing posts with label government welfare cuts. Show all posts
Sunday, 5 June 2011
Friday, 22 April 2011
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.
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.
Sunday, 27 February 2011
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.
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.
Saturday, 26 February 2011
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!
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!
Friday, 25 February 2011
An update of sorts
I haven't blogged here in a while. Partly because so much else has been going on. Partly because I am feeling too rotten and just turning over in bed is all I can cope with. But my brain is still active, rest assured of that.
Anyway... to update on the shower. They win. I cannot keep it up any longer. At one point I thought I had won, only to encounter workmen who believed I had concrete floors upstairs (any fool can see they're made of wood) and that it would be okay to saw through a few joists. It won't . Trust me. I don't want to find one side of the house down in the garden.
But I did have a win of sorts, with the DWP. I finally won an appeal for DLA that has been rumbling on for YEARS. After several tribunals, I finally got what I wanted, which is great. I wish I could say that I've been celebrating, but I haven't. Because although I've 'won' in some respects, it isn't over....
Let me explain. Firstly, the DWP now appear to have lost the entire appeal. They have no record of my first claim, nor the appeals that followed,and they certainly have no record whatsoever of me winning anything. So actually getting some back-pay is a long way off.
Also, I now have to tackle HMRC to get my tax credits amended for the appropriate period. After all, if I was entitled to DLA for that period, I was also entitled to slightly higher tax credits. But no. The leviathon that is HMRC says it is only obliged to refund back to the start of the present financial year. And my claim - thanks to inept tribunals and the idiots at the DWP rumbled on for years in spite of all the evidence.
'Well,' I said, trying to sound reasonable, although in truth I was tearing my hair out, 'Surely there's something I can do? I must be able to appeal?'
'Oh yes,' they said, 'but.... you might have to attend a tribunal.'
I took a deep breath and counted to ten. 'Fine,' I said. 'I'm used to those. Put me down for a tribunal then.'
Anyway... to update on the shower. They win. I cannot keep it up any longer. At one point I thought I had won, only to encounter workmen who believed I had concrete floors upstairs (any fool can see they're made of wood) and that it would be okay to saw through a few joists. It won't . Trust me. I don't want to find one side of the house down in the garden.
But I did have a win of sorts, with the DWP. I finally won an appeal for DLA that has been rumbling on for YEARS. After several tribunals, I finally got what I wanted, which is great. I wish I could say that I've been celebrating, but I haven't. Because although I've 'won' in some respects, it isn't over....
Let me explain. Firstly, the DWP now appear to have lost the entire appeal. They have no record of my first claim, nor the appeals that followed,and they certainly have no record whatsoever of me winning anything. So actually getting some back-pay is a long way off.
Also, I now have to tackle HMRC to get my tax credits amended for the appropriate period. After all, if I was entitled to DLA for that period, I was also entitled to slightly higher tax credits. But no. The leviathon that is HMRC says it is only obliged to refund back to the start of the present financial year. And my claim - thanks to inept tribunals and the idiots at the DWP rumbled on for years in spite of all the evidence.
'Well,' I said, trying to sound reasonable, although in truth I was tearing my hair out, 'Surely there's something I can do? I must be able to appeal?'
'Oh yes,' they said, 'but.... you might have to attend a tribunal.'
I took a deep breath and counted to ten. 'Fine,' I said. 'I'm used to those. Put me down for a tribunal then.'
Thursday, 18 November 2010
more and more circles
My struggle to get the local council to understand my predicament are still rumbling on. Nearly a year ago the occupation therapist said I needed a shower. Fine. Paperwork was completed, submitted approved.
Then the Council came out to look at my house and said it also needed rewiring. Okay. Not. Because you and I might think that rewiring means putting back what is already there, right?
Wrong. Rewiring in this instance means having what the Council say you can have. So... where I have had extra lights put in to help my poor eyesight, this would be made defunct. I could have an electricity point in the hall or on the landing, not both. I could have ONE power point in the bedroom. My immersion heater would be defunct. So would my washing machine which is outside in an outhouse because there is no room in the kitchen.
So.... the price of having a shower is little light, little power, no means of heating the water or washing my clothes.
One department talks to another. One department ignores another. Everyone ignores me. And I'm not letting anyone start work until this is ironed out. Telling me 'Oh, I'm sure it will all work out, have it done while there's still the money for it, ' is NOT enough. I don't want to wander round my house with a torch as the price for having a shower.
Neither is telling me, 'Well at least they've approved the shower. You should be grateful for that.'
Because a hypothetical shower is no shower at all. Rather like a hypothetical win on the lottery.
Ho hum....
Then the Council came out to look at my house and said it also needed rewiring. Okay. Not. Because you and I might think that rewiring means putting back what is already there, right?
Wrong. Rewiring in this instance means having what the Council say you can have. So... where I have had extra lights put in to help my poor eyesight, this would be made defunct. I could have an electricity point in the hall or on the landing, not both. I could have ONE power point in the bedroom. My immersion heater would be defunct. So would my washing machine which is outside in an outhouse because there is no room in the kitchen.
So.... the price of having a shower is little light, little power, no means of heating the water or washing my clothes.
One department talks to another. One department ignores another. Everyone ignores me. And I'm not letting anyone start work until this is ironed out. Telling me 'Oh, I'm sure it will all work out, have it done while there's still the money for it, ' is NOT enough. I don't want to wander round my house with a torch as the price for having a shower.
Neither is telling me, 'Well at least they've approved the shower. You should be grateful for that.'
Because a hypothetical shower is no shower at all. Rather like a hypothetical win on the lottery.
Ho hum....
Wednesday, 17 November 2010
Going around in circles....
Okay, I stumble a bit when I walk. I can't see very well. I'm not very steady. I fall sometimes. Recently I ended up in a massive altercation with a Tesco trolley on a travellator. The damned thing wouldn't come off, the back wheels reared up into the air and the whole thing crashed down on me.
I'm not a regular visitor to Tesco's. It's too big, and I'm exhausted just visiting an aisle or two. But Christmas is coming, I hadn't been out in ages, and I thought well, I'll make the effort. Now I'm sorry that I bothered.
To be honest, I don't like going out at all much any more. I am fed up with people crashing into me, then glaring as though it's my fault (I am the one with the stick after all). It didn't use to be like this. People would help me not so long ago. But things have changed. I am one of the 'other.' I have been demonised. And once you relegate people to the 'other' it's easy to dispose of them. Because you have already taken away their individuality, their worth as human beings.
I like to think I still have worth. I was a good mother, a good grandmother. A good mother-in-law... maybe not a very good daughter, but that's another story. I am still good at my job (though it gets harder and I have to become every more inventive in order to manage.) But today everything hurts. My arms hurt so much I can't even use my walking stick. It's too painful. And the dark evenings are a nightmare because my night vision is much worse this year than last year.
I have given up on my voice recognition software this evening. It is well and truly in a world of its own. When a walking stick becomes a 'working sick' I know it's time to go to bed....
I'm not a regular visitor to Tesco's. It's too big, and I'm exhausted just visiting an aisle or two. But Christmas is coming, I hadn't been out in ages, and I thought well, I'll make the effort. Now I'm sorry that I bothered.
To be honest, I don't like going out at all much any more. I am fed up with people crashing into me, then glaring as though it's my fault (I am the one with the stick after all). It didn't use to be like this. People would help me not so long ago. But things have changed. I am one of the 'other.' I have been demonised. And once you relegate people to the 'other' it's easy to dispose of them. Because you have already taken away their individuality, their worth as human beings.
I like to think I still have worth. I was a good mother, a good grandmother. A good mother-in-law... maybe not a very good daughter, but that's another story. I am still good at my job (though it gets harder and I have to become every more inventive in order to manage.) But today everything hurts. My arms hurt so much I can't even use my walking stick. It's too painful. And the dark evenings are a nightmare because my night vision is much worse this year than last year.
I have given up on my voice recognition software this evening. It is well and truly in a world of its own. When a walking stick becomes a 'working sick' I know it's time to go to bed....
Tuesday, 9 November 2010
How naive I was....
A couple of days ago I posted about the difficulties of getting a prescription for some new medication I am supposed to take to prevent me going blind. I somehow thought, once I had the prescription, that my problems would be over. In fact, they are just starting.
I waited a few days, then rang the pharmacy to check the tablets were in stock. 'Erm...some of them,' they said.
'How many?'
'Thirty six.' Okay, I thought, that's 18 days supply. I can wait and then someone can pick up the whole prescription when the rest come in.
'When are the rest due?'
'We don't know. The suppliers are out of stock. They can't get them.'
I took a deep breath. Counted to ten. 'So what happens now.'
'Well, you've got enough to be going on with...'
True. But I don't want to take tablets knowing I am going to run out entirely. That opens a whole can of worms and a lot of other problems.
'Well what can be done to solve this problem?' I asked, trying to be helpful.
'We could order a few months supply next time, if you're going to be on them a while, only we don't like to do that...'
'Whyever not?'
'Because they're expensive.'
And this is the crux, ladies and gentlemen. Expense. Never mind that eyesight is one of the most precious things we can have. Never mind that the doctor is happy to prescribe it. The pharmacy (the pharmacy!!!) are not happy about ordering it in. Because it's expensive.
So now, on top of worrying about the government's welfare cuts, even the local pharmacy is deciding that those who are ill are somehow 'unworthy'.
Can't they see? The only reason they are there, in our little high street, is because people who are sick/ill/disabled need to have their prescriptions filled. Otherwise we'd all go to Superdrug instead.
If they start making judgements like this, then some of the first people to lose their jobs look likely to be the bloody pharmacists!
I waited a few days, then rang the pharmacy to check the tablets were in stock. 'Erm...some of them,' they said.
'How many?'
'Thirty six.' Okay, I thought, that's 18 days supply. I can wait and then someone can pick up the whole prescription when the rest come in.
'When are the rest due?'
'We don't know. The suppliers are out of stock. They can't get them.'
I took a deep breath. Counted to ten. 'So what happens now.'
'Well, you've got enough to be going on with...'
True. But I don't want to take tablets knowing I am going to run out entirely. That opens a whole can of worms and a lot of other problems.
'Well what can be done to solve this problem?' I asked, trying to be helpful.
'We could order a few months supply next time, if you're going to be on them a while, only we don't like to do that...'
'Whyever not?'
'Because they're expensive.'
And this is the crux, ladies and gentlemen. Expense. Never mind that eyesight is one of the most precious things we can have. Never mind that the doctor is happy to prescribe it. The pharmacy (the pharmacy!!!) are not happy about ordering it in. Because it's expensive.
So now, on top of worrying about the government's welfare cuts, even the local pharmacy is deciding that those who are ill are somehow 'unworthy'.
Can't they see? The only reason they are there, in our little high street, is because people who are sick/ill/disabled need to have their prescriptions filled. Otherwise we'd all go to Superdrug instead.
If they start making judgements like this, then some of the first people to lose their jobs look likely to be the bloody pharmacists!
Sunday, 7 November 2010
It can happen to anyone...
I didn't ask to be ill. I didn't ask to spend years of my life caring for sick family members, who through no fault of their own became ill. I didn't ask for any of this.
And that's what people don't understand - how easily it happens. I started off with weird aches and pains, crippling fatigue, feeling that the plug had been pulled on me. I went to the GP who discovered my blood pressure was through the roof. 'It's your weight,' he said, with a shake of his head. 'You've got to lose weight.'
So I lost several stone in weight. And the pain and fatigue persisted, and my eyes started acting weird. I was referred for a CT scan which came back clear.
'That proves it's not MS' smiled the doctor. Maybe it was meant to reassure me. But I knew that a CT scan didn't actually reveal MS.
Time dragged by. I found it harder to do simple things. Like carrying shopping. And if you can't carry a shopping bag - how do you do your shopping? Answer: you don't. You struggle. You ask other people to help you. And they do - if they can. And if they have the time.
I knew I was in trouble with my vision... part of it just disappeared one day. Turns out - it's optic neuritis. Often linked with MS. I have had two bouts of this and lose much of my colour vision. I didn't do anything to make this happen - it just did. And the pain and fatigue were rumbling away in the background, too.
Eventually I saw a neurologist, a registrar. Lovely man. Very helpful. Promised to do all sorts of tests... and then was overruled by his superior and I was discharged. My eyesight was 'wrong'. But that was apparently quite normal.
Eventually my eyesight crashed. Not optic neuritis this time, but something rarer, more difficult to treat. I will almost certainly lose most of my sight eventually. The medication is toxic and terrifying. Are the side effects worth it? The jury is still out on that one as far as I'm concerned.
And finally, I was sent back to the senior neurologist, who insisted I had discharged myself. Eventually I get a lumbar puncture (and it's a sign of how desperate I felt that I was actually pleased to have it done!) and lo! There are things in the spinal fluid that suggest I may indeed have MS. We don't know for sure, but it's a step closer to getting some answers....
But meanwhile the pain persists. How can they call it aches and pains? I know the difference between something that aches and the sort of pain I'm in. I can't see properly. I no longer drive. I have become an expert at trying to adjust, trying to make the most of my vision, battling the butcher, bakers and candlestick maker to get help - some help - any help.
I am not a scrounger. I can't help being ill. I don't actually like being ill. There is no pleasure in it. There is no advantage in it for me. I would be better off financially if I were fit and well. I would be better off emotionally, physically.... the list goes on.... if I were fit and well.
But I'm not.
And the lesson here is that it can happen to anyone. That's what people just don't realise when they demonise the disabled. Yes, you can turn us into the 'Other' you can make us faceless, workshy, lazy scroungers, and you can make our lives hellish.
But one day - and that day might not be so far away - it can happen to YOU.
And then you'll sing from a different hymnsheet.
And that's what people don't understand - how easily it happens. I started off with weird aches and pains, crippling fatigue, feeling that the plug had been pulled on me. I went to the GP who discovered my blood pressure was through the roof. 'It's your weight,' he said, with a shake of his head. 'You've got to lose weight.'
So I lost several stone in weight. And the pain and fatigue persisted, and my eyes started acting weird. I was referred for a CT scan which came back clear.
'That proves it's not MS' smiled the doctor. Maybe it was meant to reassure me. But I knew that a CT scan didn't actually reveal MS.
Time dragged by. I found it harder to do simple things. Like carrying shopping. And if you can't carry a shopping bag - how do you do your shopping? Answer: you don't. You struggle. You ask other people to help you. And they do - if they can. And if they have the time.
I knew I was in trouble with my vision... part of it just disappeared one day. Turns out - it's optic neuritis. Often linked with MS. I have had two bouts of this and lose much of my colour vision. I didn't do anything to make this happen - it just did. And the pain and fatigue were rumbling away in the background, too.
Eventually I saw a neurologist, a registrar. Lovely man. Very helpful. Promised to do all sorts of tests... and then was overruled by his superior and I was discharged. My eyesight was 'wrong'. But that was apparently quite normal.
Eventually my eyesight crashed. Not optic neuritis this time, but something rarer, more difficult to treat. I will almost certainly lose most of my sight eventually. The medication is toxic and terrifying. Are the side effects worth it? The jury is still out on that one as far as I'm concerned.
And finally, I was sent back to the senior neurologist, who insisted I had discharged myself. Eventually I get a lumbar puncture (and it's a sign of how desperate I felt that I was actually pleased to have it done!) and lo! There are things in the spinal fluid that suggest I may indeed have MS. We don't know for sure, but it's a step closer to getting some answers....
But meanwhile the pain persists. How can they call it aches and pains? I know the difference between something that aches and the sort of pain I'm in. I can't see properly. I no longer drive. I have become an expert at trying to adjust, trying to make the most of my vision, battling the butcher, bakers and candlestick maker to get help - some help - any help.
I am not a scrounger. I can't help being ill. I don't actually like being ill. There is no pleasure in it. There is no advantage in it for me. I would be better off financially if I were fit and well. I would be better off emotionally, physically.... the list goes on.... if I were fit and well.
But I'm not.
And the lesson here is that it can happen to anyone. That's what people just don't realise when they demonise the disabled. Yes, you can turn us into the 'Other' you can make us faceless, workshy, lazy scroungers, and you can make our lives hellish.
But one day - and that day might not be so far away - it can happen to YOU.
And then you'll sing from a different hymnsheet.
Tuesday, 2 November 2010
And so it begins...
I've called this blog 'Yell in the Dark' because that's what life feels like at the moment. One long round of me endlessly yelling, trying to get people to listen. Because although I can't see the world around me like I used to, I know that people seem to be sleepwalking towards massive changes in society - and that when they finally happen, these very same people are going to turn around and say....'What the hell happened to Why didn't I know? Why didn't I notice?'
Well I'll tell you why nobody noticed - because they weren't looking. Now I'm going blind, yet I can see it. But that's because I am looking. And what I've seen is that over the past couple of years, the disabled have been very cleverly depersonalised. Oh, people still know we exist, but not as real people. Only as scroungers, a burden, something that needs to be got rid of. Preferably permanently.
These latest government proposals, put forward by men who have never had a real job,, never lived in the real world, fill me with dread. Because they sound so... well, reasonable. 'The disabled will be protected' they say. The 'real disabled...' only who gets to decide who joins this group? If the sadists who work for Atos have their way, it will be nobody.
And this is what people fail to understand... I call it the Law of Unintended Consequences. Let me show you how it works:
Stage 1. We will get rid of the scroungers. Everyone nods in agreement, because let's face it, nobody likes a scrounger, do they?
And this leads to Stage 2: You are not ill. Therefore you are a scrounger. This is more worrying. You know you are ill. And you know you are not a scrounger. You would like very much to have your old life back. But you can't. And there is little out there medically to help you. Besides, your day is filled with trying to do simple things like finding your way around, or learning whether you've switched the cooker on or off.... but suddenly you're one of the bad guys. You're part of the problem. That can't be right, can it?
So you have to fight it. You have to appeal. And you still have to live, and function. And suddenly it takes over your life. You've found yourself on a side where you never thought to end up. And inside your head you start yelling, 'Listen to me!' only of course nobody's listening. Because you, my friend, have become one of the 'Other'. The scroungers. The problem.
But this is how the system works. How it's intended to work. People who know you are horrified. 'But you're ill!' they say, 'We know you are.'
I'll let you in on a secret, shall I? The government knows you're ill too. They just want to cut your money. And they reckon it's much easier to take the dosh from a blind person, or a man in a wheelchair, than it is to ask Vodaphone to cough up what they owe in taxes.
Well I'll tell you why nobody noticed - because they weren't looking. Now I'm going blind, yet I can see it. But that's because I am looking. And what I've seen is that over the past couple of years, the disabled have been very cleverly depersonalised. Oh, people still know we exist, but not as real people. Only as scroungers, a burden, something that needs to be got rid of. Preferably permanently.
These latest government proposals, put forward by men who have never had a real job,, never lived in the real world, fill me with dread. Because they sound so... well, reasonable. 'The disabled will be protected' they say. The 'real disabled...' only who gets to decide who joins this group? If the sadists who work for Atos have their way, it will be nobody.
And this is what people fail to understand... I call it the Law of Unintended Consequences. Let me show you how it works:
Stage 1. We will get rid of the scroungers. Everyone nods in agreement, because let's face it, nobody likes a scrounger, do they?
And this leads to Stage 2: You are not ill. Therefore you are a scrounger. This is more worrying. You know you are ill. And you know you are not a scrounger. You would like very much to have your old life back. But you can't. And there is little out there medically to help you. Besides, your day is filled with trying to do simple things like finding your way around, or learning whether you've switched the cooker on or off.... but suddenly you're one of the bad guys. You're part of the problem. That can't be right, can it?
So you have to fight it. You have to appeal. And you still have to live, and function. And suddenly it takes over your life. You've found yourself on a side where you never thought to end up. And inside your head you start yelling, 'Listen to me!' only of course nobody's listening. Because you, my friend, have become one of the 'Other'. The scroungers. The problem.
But this is how the system works. How it's intended to work. People who know you are horrified. 'But you're ill!' they say, 'We know you are.'
I'll let you in on a secret, shall I? The government knows you're ill too. They just want to cut your money. And they reckon it's much easier to take the dosh from a blind person, or a man in a wheelchair, than it is to ask Vodaphone to cough up what they owe in taxes.
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