Tuesday, 6 March 2012

Ability Disabled

I've been trying to pin down a hazy idea that's been floating about in my blog-head for a few weeks now.

Disability.

People greater and way better informed than me have struggled with definitions of disability for decades, so I won't pretend to analyse social models or medical models or biopsychosocial pseudo-science.

I'm thinking about our lives. And the way that they've changed since around 2008.

I never ever thought of myself as a "scrounger". Far from it. I had a terrible illness that limited my life in thousands of ways. Crucially, I was never given any cause to.

My Blue Badge was the thing that improved my quality of life the most. It literally made the difference between leaving the house and not. If I can park right outside the door of the supermarket or the school or the hospital, I can go, if not, I simply can't manage.

Yes, I can walk. I can just about get round a small supermarket without feeling so exhausted I have to sit on the floor. Before I had the Blue Badge, I regularly had to sit down in a shop and put in an SOS call to my husband.  I became more and more insular, less able to enjoy the things everyone else took for granted.

When I decide to go to a shop or a school concert, I know that the rest of the day will be a write off. How does the act of over-riding my disability affect everything else that I do? My energy and ability are limited (see The Spoon Theory for a wonderful explanation http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ ) and for me, managing my disability means achieving as much as I can, every day, with the limited ability that I have.

I could have given up. Many do. I could have gone to bed and said enough was enough. Given up the daily struggle for a degree of normality.

I could give up on food (it disables me more than anything else) and accept a permanent feeding tube. But I like food. I refuse to give up on something so fundamental, so entwined with social interaction and pleasure, just because it hurts and makes me vomit and keeps me on the loo all day.

I could have chosen not to have children. Some might legitimately argue that I should have done. But imagine the joy I'd have missed? The love that fills the places where pain lurks. The shiny little faces that make me be more, do more every single day. Sometimes (well, often) it's all way too much, but they keep me going, always more important than my various symptoms or dark, dark, days.

I could use a wheelchair, I very often need to. But then I become more disabled. My muscles waste a little more, my heart would get a little weaker, my blood, already sticky with inaction would clot a little easier, potentially bringing on stroke No2.

I could stop bathing or washing my hair or getting myself dressed. Sometimes those simple things take me all day. Sometimes I can't do them at all. But then who am I? What is left?

Disability Living Allowance (DLA) was the extra money to acknowledge all of those things. It meant I could buy food that didn't make me as ill. It meant that I could pay for some help in the bad times. It meant that I could get my children to school in a taxi on days I can't leave the toilet. It meant that I got a Blue Badge.

As we all trawl through the criteria for the new benefit to replace DLA (PIP or Personal Independence Payments) it becomes clearer and clearer that is designed to disable. 


If I can make a simple meal using a microwave, if I can get dressed and wash myself, if I can walk more than 50 metres, whatever it costs me, I am no longer disabled. It no longer matters what those things cost me, their effect is irrelevant. If I can clean up my own incontinence, incontinence is no longer disabling. If I can chew, I am not disabled, never mind the carnage that the transit of that food causes. 


So, if you are disabled - and make no mistake, I mean disabled in any way at all - deaf, blind, paralysed, mentally ill, or if you have a "fluctuating condition" like mine - if you can leave the house, care for yourself in the most basic ways and stumble through a semblance of "life" you will not qualify for PIP. If you give up, stop trying, stop fighting for every minute of every day, you might.

The same is now true of social care. As councils up and down the country attempt to save an eye watering 25% from budgets, "moderate needs" no longer exist. You must simply struggle through "moderate" until the daily effort pushes you towards "critical" Then the skeleton remains of state assistance will pick up the damaged pieces. And those pieces will be more damaged, will cost the NHS more money.

The message on disability is clear and is ringing out loud and true across every town in the country - "Give up, don't fight, don't try to be the best you can be, don't cling to pleasure - it is not for the likes of you.

Don't you dare EVER have good day, take a holiday, and God forbid, throw caution to the wind and risk days of pain for a moment's joy on a water slide. Don't stay active, don't keep your disability at bay for as long as you can. Don't try to avoid costly medical interventions. Don't let your neighbours see you in the garden or hoovering the lounge. Don't cook a beautiful meal, eat microwave meals and be grateful. Don't be so selfish! How DARE you think you deserve a partner or children and if you do, expect that they will become more exhausted, more neglected as they are expected to become "critical" themselves just caring for you.

It is a terrible, sinister shift. Possibly not designed to be so - who knows? I could no longer say for sure if this is utter ignorance and a lack of understanding of disability, or a sinister attempt to ensure that disability becomes more marginalised, less visible and in the end.... well in the end what? What will become of us?

The Government think we will all buckle down and get jobs. I still cannot imagine in any way at all what makes them think we didn't try that already - in some cases, mine included, until it brought us to the very brink of trading our lives for a pay cheque.

We are talking about millions of lives, not just a handful. Half a million people losing DLA - half a million!! Many more losing ESA. Yet more left to sit in their own filth, eating when a neighbour knocks to check, for want of a little social care.

Once again, I ask whether we need to wait for this terrible, inhumane bomb to explode across our news bulletins or whether we think again. Now. Before it is too late.


47 comments:

  1. BalletDancer6 March 2012 12:37

    Well said Sue. We are meant to be enslaved or lead to our own extinction - it's eugenics, selection of the purest breed, the most economically productive. And we are not considered productive but a burden to the "society". Here is what is happening - people are lead to suicide.

    http://calumslist.org/

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  2. yup - I think the Govn't need to THINK AGAIN.. NOW, BEFORE IT'S TOO LATE, FOR EVERYONE

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  3. And of course the Catch 22 is that if you don't try, don't put on a brave face, don't accept your illness with stoicism then the public perceive you as less deserving of help and of respect. So it seems a choice between financial support that helps you stay alive and respect from other humans which makes staying alive worthwhile.

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  4. Why there is no articles on the internet about "welfare reforn suicide cases" ? I am sure the government is taking down sites so the public does not have access to the facts. Just imagine what will happen if "able" people get sick but have to wait for years for NHS surgeries/ treatments...because the ones who pay get the beds. By then it will be too late for some. Then they'll now what it feels to be a disabled. Welcome to our world.

    http://socialwarriors.co.uk/

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    1. because the healthy work tax paying folk believe the hype that where all scroungers with ten kids living it up not the fact we hardly cope with the pittance they give us or that there are genuine ill and sick who dont sit on street corner texting and drinking till the regular joes are affected ie no jobs and no health care system no benifits if they lose there jobs we the minority will be tarnished all the same scroungers laying it on thick as woman at jobcentre said to me i have mental health issues depression and gad anxiety long term she had a paralyzed friend who worked he couldnt move from neck down but could speak a person came in every morning wrote what he said and he was happy he was productive and what had i too say to that ? try living it love cause i didnt say hat you arnt allowed are you but they can talk down at us

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  5. http://www.mirror.co.uk/news/uk-news/sickening-indignity-terminally-ill-patients-750517

    Terminally ill patients are forced to work, or they loose their benefits! Why they don't see they are killing us? Why they don't held responsible the PM and allthe MPS who implemented this bill - for crimes against humanity? Why they don't make a case based on the UN Human Rights?

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  6. As said if you don't try you're seen as a waster, Social and medical services encourage you to try, even offer aids to help normal life but like Sue I have good days and bad days...

    I can think I may manage to go to the post office(I'll use a taxi)then walk a few yards, perhaps stand in a queue and struggle to do so, then come out and want to go to a shop a few yards away and cannot manage to. So will get a taxi home and try to go to the other shop another day.

    I can perhaps force myself to do more but I'll pay when I get home. The DLA helps me get out of the house which isn't very often. Nor can I do too many long journeys(because they are uncomfortable)but a trip to a neighbouring town and back takes away almost all of the DLA allowed for one week.

    When Mum was in hospital I had to find £900 to visit her...the one time I had to use a bus home late at night because I couldn't get a taxi I had to walk home and I was shattered.

    I also felt very vulnerable(and I found out that same night)another person had been assualted quite close to where I was.

    I'm looking after Mum who is seriously ill and I have to do it, I want to, I don't want her in a home or a hospital but I make myself and suffer later.

    I know if I was to work when I get home if I manage to survive the working day(I will be straight to bed when I get home)

    Its frightening!

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    1. You just exactly described my day yesterday. And yesterday was a "good" day. Drove into town, parked as close to shop as poss, looked two blocks down the street to shop number two, thought "no chance" went home.

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    2. Sue, That's often the way it is for me...If I could walk it, I am perhaps 5 minutes from the shops but I take a taxi, every trip is £6 return. We're talking a couple of streets.

      The way my town centre has been built you have to do some shopping in one part and the main food shop in another, if that happens I can spend nearer £10 per trip.

      Someone I had not seen in ages was surprised by the struggle I was having and was concerned that I could not manage just a few streets.

      When I attended an assessment some years ago the Dr did not want me to say I did very little(You look lazy)but if you try to do something and attempt a life of some kind those who decide whether you get money or not hold it against you.

      Atos assessments may leave a lot to be desired but the assessment this Dr gave was total lies and much what was written down was nothing like how it really was.

      Another Dr overturned the original assessment.

      Thinking logically, which IDS and "Sunny" Dave and Lord Freud do not...If all of us with disabilities and varying conditions were to give up and make the state look after us instead of attempting some form of independent living(even if that means having to claim benefits)just what would it cost the taxpayer?

      Also, if the State had to look after all of "Us" where are all the hospital beds? The care homes, care services etc...

      The fact we are disabled or have problems living day to day, few of us are able to say we have lots of savings...even if we could save, we are unable to because what we are entitled to would be withdrawn anyhow. So we have to avoid saving and spend what little income we have.

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    3. although i have posted on here my main problem is social anxiety a trip out alone is a nightmare panic sheer panic my heart thuds my body shake i throw up atos say i am, fit to work how i dont go out i dont travel anywhere you ask me directions to a certain road ive lived here 17 years i cant tell where said shop is i dont go out ecept when forced too then i get ill stomach upset shaking sweats fevers etc yet no one believes you prob because i am overweaight being home all time it dosnt help image wise but i have spinal stenoisis too atos woman told me get a gastric band it will cure your anxiety and mental health probs and was root of all my troubles yeah right my gp has same attitude he used to be very kind but lately he dosnt care

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  7. This won't put any significant extra burden on the NHS because there simply won't be one very soon. The new system will consist of temporary limited help for non-payers then those without insurance will simply be refused any assistance. People as ill as you and I won't be getting any insurance either as no-one will be interested in insuring the health of people with pre-existing conditions. Why would they be? No profit there. The new rulers have no interest in the disabled at all and are trying to do away with us in a socially acceptable manner. If they can't make money out of us (insurance premiums or taxes from making us work) then they want us dead. We're no good to them you see, so they regard supporting us as pointless. I think the only hope many of us have is to make the broad mass of the public understand what's happening and rebel against it. They should do because they're next! I'm sure the government are afraid of that and that's why there's been this obviously orchestrated hate campaign against us in the media. Witness Murdoch frantically trying to get back in the government's good books last weekend with his new paper's front page facile expose of a disabled woman going to a fairground. Weak weak weak, shows how desperate he is. It also shows that the government are firghtened too of people finding out what's really going on. That's their weak spot, plus of course that despite all their terrible ambitions none of them can organise anything properly, none of them having had any real life experience. Stay alive, make noise, that's my advice, and Sue will you STOP being surprised by all this, these are very rich people we're talking about and we're in a different country to them (from their perspective). They don't care about us and you shouldn't expect them to. Their whole experience of life has been completely different. They aren't like us! If they were in the business of fair they wouldn't be rich so stop expecting them to play by the same rules we do.

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  8. Lived experience of millions may be consigned to an existence at best.

    Dangerous denial of our existence is the name of the game.

    Thanks again Sue.

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  9. I'm tired of waking up every day with the worry of current benefit problems to still sort out and the possibility of more to come. There has to be more to life than being disabled by the state, deliberatley, and injustly, doesn't there?

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  10. HMRC/ DWP plc6 March 2012 14:45

    Government definition of disability - DEAD

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  11. Firstly, I'm not disabled. However, that in no way prevents myself or any other person from seeing the sheer callous brutality of the coalition. Cameron paraded his son like a flag, to evoke sympathy from the masses, milking it for every last drop. His son died, the mask was droppeD. That's the kind of man we're dealing with, a man who really would trade anything for power. I say I'm not disabled but, for many years, since my early teens I have been plagued by psychological illness. I dealt with it for years before seeking help, convinced that it was all in my mind and not really real. Eventually, I accepted that it was in my mind and that was the problem. I got help, about six years ago and since then, I've had episodes of falling back but mostly I cope with it very well. Under this government the help would not have been there. Being brutally honest with myself, I know for certain I would now be just another suicide, or a killer doing life in a secure hospital. I was very angry, with everyone and everything. My daughter would be without her dad, my son wouldn't exist(he's five), and my partner would be mourning my death. The last government were far from perfect, but I'd take them with all their faults over this motley crew of wealthy, ignorant and truly compassionless elitist bastards any day. As long as I breathe air, you will be heard, my promise to all of you. Keep fighting, they will not win because we will not let them.

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  12. Humans could not do these things to other humans, therefore I deduce this government are not human, so what are they? And can they be destroyed?

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  13. We all need to write to the queen to withhold royal assent, I have, I realize I'm clutching at straws but I'm willing to try anything. She does have a duty to her people.

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    1. She does have a duty correct but she only gets to read what she is given a lot of her mail is binned before she would ever get to see it and their lies the problem

      The only royals that may get to see their mail in full would be harry and William but they would not step in that i do know

      None of the royals should be patron of a charity for the very reason they cannot speak out about any injustice

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  14. I found this post really thought-provoking and has made me consider what I consider the term "disability" to mean for me, and how this country could even be considering some of the reforms proposed.

    As someone who does not count themselves as having a disability, I have to admit that the situations Sue and others describe are not only hard for me to imagine, they are downright impossible. I can certainly display sympathy but empathy would be a tad disingenuous. The challenges faced in doing things that I take for granted are just too alien for me to comprehend, and in addition, outside of me following this blog, I don't really receive any messages or insight on these issues from anywhere else on a regular basis.

    It's a bit difficult to say how much the country as a whole is turning against the government's agenda, but on a more fundamental note I wonder what % of the population would find it easier to empathise with the apparent need to balance the books (wider financial agenda), than with an individual's fight for "normalcy" (or perhaps more accurately equality)? My suspicion is that it is the former.

    In the current mess we're in, too many people have lost the sense that benefits such as Disability Living Allowance are designed to promote some form of equality and should lead to good days, holidays, enjoyment of life etc. What changes in people's perceptions to move them from thinking "gosh she/he has got it rough, they deserve some additional support" to "why on earth should they get additional support"?

    Maybe its as simple as "times is tough". I know there can be a lot of (understandable) anger and frustration in these comments, but I'm not convinced that the reforms and budget cuts are driven by a sinister desire to hurt people, but more through a genuine ignorance of the massive impact a lot of this support has on people. As i've alluded to above, its easier for most people to understand pounds and pence than it is not being able to walk for more than 5 minutes.

    A glib solution might be for more people just to look sick(!), but improving general understanding of the challenges people face might be a good starting point for mobilising not only even more opposition to the reforms, but positive support for the role of benefits in our society (the latter far more important in my view). I don't have any ready-made solutions, but will continue to sign post people to this site in the hope of changing perceptions, even if it is one person at a time!

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    1. Sadly, I think you're right. People find it very easy to protect themselves from the fear of being ill or disabled, by just not thinking about what others go through. While recognising this, we have to find a way of getting across what it is like to need state support to have any kind of decent existence.

      Sue does this brilliantly but she tends to have a pre-interested group of listeners. Sonia Poulton is pretty much the only journalist who puts this perspective across to a broader audience. The Guardian are very supportive but their journalists don't seem so able to communicate the stark realities.

      Maybe organisations like 38 Degrees offer a way to break through people's instinctive denial - if we can make a concerted effort to break through theirs...

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    2. Thank you so much for that thoughtful reply.

      One person at a time is surprisingly effective xx

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    3. This is a bit of a quandary though - since we actually tried to tell personal stories a year ago to try and get the word out to the public but this was dismissed as being "anecdotal" and therefore untrue. So, then we resorted to facts and figures - and this became alarming so the figures weren't reported or were slandered.

      We've tried to get 38 Degrees on board but we weren't a "popular enough cause" and all the suggestions given to try and raise the profile never happened. Meanwhile they have raised loads of funds for the NHS and gone on a huge advert campaign - something they had told us was utterly impossible.

      So it's really difficult to understand what else we can do - it just seems to me that people just plain don't care, and they won't until it becomes personal.

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    4. I agree, it is a really tough challenge, but if anything this blog has shown that there are always new and different ways of tackling these issues. So for example (and I'm just brainstorming a bit here so i appreciate this idea may seem a bit naff), what if the problem wasn't about trying to convince the government, or trying to convince the whole population, but instead trying to convince a specific community.

      Could you take a town/village/area with a very strong communal identity and mobilise every person within that community who will be negatively affected by the reforms and make it as plain as day for the rest of the community to see - in essence to change the perspective from an attack on people on DLA, to an attack on the collective community. It would sort of be getting into the "not in my name" territory.

      I think what this post overall has highlighted is that whether it was meant to happen or not, a "them and us" school of thought has developed around the issue of benefits (and perhaps disability in general), when there should only ever really be an "us".

      Again it comes back to what people can relate to, and I'll use myself as an example. Intellectually I have huge symapthy with the opposition expressed here and can understand the potential harm, but I'm still struggling to FEEL outraged. BUT! If I knew everyone within a half mile radius of where I live who were affected, and I could see the attack on members of my community, I'm pretty sure I and others would feel that outrage (gosh people get angry about parking in my area, so they've certainly got the capacity for passion!).

      That isn't to say that I don't see the extreme value in the anecdotal, or the stats put forward, I just think the key is getting people to a head space that says that an attack on you, is an attack on me.

      Sorry I'm not articulating that very well, will have a bit more of a think...

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    5. Keep in mind that you're talking to people who on the most part can barely get out of bed. Mobilising is what twitter and blogs are for but not everyone is on the internet. The Green Party apparently is trying to get on board, there are other groups but getting people to care, but it's alien to them. They just...don't know.

      If you're not outraged yet, not sure what I can possibly say to get you there - because you SHOULD be feeling this, but you can't. I'm sorry, but you simply can't. Not unless you wake up and realise you've had a stroke in the middle of the night. Not until you have a car crash. It's not possible...it just isn't wired in. If it was, there'd be no poor, no starving, no ill, no wars. It's just how humans are...and that's not something to be proud of.

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    6. I think Kaliya and I want to work on this.

      If we can do anything at all, we like to try to get inside the minds of people we want to help to understand.

      We have to give Worcester woman and Mondeo man and Alarm Clock Britain or whatever a REASON to care.

      I know that when you're the one affected that seems dreadful, but we have to think like "the public" not like a minority group.

      I think there is something in the ideas of "British Decency" and lines in the sand that ought not to be crossed. It's hazy just now though.

      I also have something swimming around in my head about "One heart, one mind at a time" These are very complex issues and not easy to get across. The most successful way is for one person to promise to tell 2 other people until they understand. Isn't it 16 days before you get to infinity?

      We must reach out now and however we feel ourselves, that probably means making arguments that feel less relevant to us. And actually listening to views we find uncomfortable in order to challenge them or learn from them.

      The key to all of this is the public.

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    7. I think this is what I wanted to say, but couldn't quite get across (I guess that's the reason I'm not hosting a successful blog).

      I in no way wanted to come across as insensitive and I would like to apologise if I came across too casual in a call to mobilise at a community level (comment above somewhere).

      I referred above to a "them and us" culture that can have a tendency to develop, and that in terms of tapping into a collective power or voice, we need to erode the "them" and bolster "the us". To do this it is often more productive to focus on commonalities rather than differences, which is why I find this blog so fascinating because it gives me an insight into the common aspirations/ frustrations I can empathise with while giving me an accessible way into the differences I would otherwise struggle to engage with.

      Example: I like reading Sue's blog first and foremost because I like her style. My perception is not defined by her condition, even though it features heavily in her content.

      I think a lot of people (innocently) fall into the trap of ghetto-ising people with a disability and focusing on the difference - not the fact that they are an equal first with a disability second.

      @Oya's Daughter - I'm an insufferable optimist at heart and I see so much good in people on a daily basis that I can't believe we're hard-wired not to understand. In fact quite the opposite, I think we're hardwired to crave understanding, it's just that we need a lot more help than we realise to get there most of the time. It can be done, but maybe it needs some more thought. There's an Einstein quote I heard recently that has really chimed with me "it's not that I'm so smart, it's just that I stay with problems longer". There's something in that I reckon...

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    8. I love that! As the stubbornest or stubborn things, Einstein nailed it ;)

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  15. You do feel a prisoner to some extent if you are on DLA and the like, as you may not be well enough to go on holiday or have a day or two away from home even if it would do you good to have a change of scenery or to have someone else look after you(such as meals cooked for you in a hotel/guest house)but if you go, chances are those who pay the benefit will say, if you can manage to have a holiday, you are fit to work.

    So you don't go...

    There's all the carry on about if you can prepare a meal, you are fine...you still have to eat and ready meals are not always good(or inexpensive)but you might be able to manage using frozen veg, sliced meat etc...but you can't keep calling people in to cook for you.

    And again if you started using a care package what's that going to cost?

    It really is worrying.

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    1. I myself have been a prisoner on and off for the past 31 years being told if you go out you'll lose your benefit and it took many years between 1983 and 1993 and 2000 to the present day to be able to get a little wriggle room so that i can go out if i choose to a big difference between you cant go out at all

      i go out for no more then 1 hour at a time and that's more then enough i dont feel at all comfortable out so it's best i stay in

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    2. i have social anxiety i self harm i have severe depression i had cognitive behaviour thearpy it didnt work i tried self help ie hypnothearpy herbal medicine excercise indoors i had a meditation kit i tried yoga i had a diary i tried everything in the summer i braved my small garden it was a terrifying thing but i kept trying sweat pouring from me it must have been an intresting sight me runing in and out of my home it was only the front yard i recieved a terrible letter i had been seen working apparently and benifit was duely stopped i hadnt set foot out side the garden plants where ordered online or family brought them to me working was a new term for attempting to relax in my garden attempting and still failing now i am scared to go out all together my garden was full of beautifull herbs bees butterflys now lies neglected because i am not a faker my illness is real but i will not be seen in case i am classed as working again

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  16. Have a look on how manipulative they train the GPs to treat poeple with ME/ CFS... reminds me of my ATOS medical, trying to convince me its all in the mind, asking me trick questions if I socialize (therefore able to work) It's shocking! When did the doctors decided to stop treating the ill people and started being informers and recruiters?

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    1. ...... a long time ago

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    2. recently i have a regular gp i see he has been there at all times till this scrounger thing now he barely tolarates me i told him i was feeling suicidal he threw me a leaflet said gp dont deal with that issue anymore i felt sick the amount of courage it took to even say hey iam feeling so down i want to kill myself i felt humiliated let down like a liar a pieace of trash no worth luckly my family has watched over my stopping me harming my self but if it wasnt for them what would have happend to me cause the thoughts wherent fake i was so very very down gp and goverment are killing people for what

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  17. http://victimsofatoscorruption.wordpress.com/2012/03/06/very-disturbing-training-videos-for-gps-on-how-to-treat-mecfs-patients/

    Thats the video clip

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  18. The latest news is that Camoron managed to convince businesses to stay to the Workforce programm by cutting the sunctions on the benefits of the young, fit and unemployed - but sanctioning the disabled and the terminally ill. Where is the justice? This is clear discrimination! Oh, and did you know JOBCETRES ARE ISSUED WITH DETAILS ON HOW TO HANDLE SUICIDES IN THEIR ESTABLISHMENTS ?
    Another great article from Sonia Poulton, the great journalist who defends us (she praises Sue all the time in many of her articles).

    http://www.dailymail.co.uk/debate/article-2110900/Suicide-training-Job-Centres-Cancer-patients-scrubbing-floors-Welcome-Cameron-s-Brave-New-World.html#ixzz1oLSrv3D1

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    1. Lets hope that David Cameron will stand trial at some point in the future on the grounds of causing death to vulnerable people on a government mandate that never was in his manifesto at the last election

      Once the death toll goes to high just like in Syria there will be no turning back and like in Syria David Cameron may go on to kill us all by whatever means he can and that works best for him

      yes to some it may mean far fetched but as a sick and disabled group of people we will need to be our guard for all eventualities that come our way and we will need to remember those that live alone as it will be very scary and to those people i say join in with this blog if things get bad use your mp speak out even do as i have done in the past and get help from the police

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  19. It goes to prove what I've come believe over the years: I am more Disabled by others' expectations of me than by my own body - which is exactly the way it was designed to be. By living as others expect us to, we are conforming to their narrow perceptions of what a Disabled person is. We must resist that as much as our bodies allow.

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  20. 'Don't you dare EVER have good day, take a holiday, and God forbid, throw caution to the wind and risk days of pain for a moment's joy on a water slide.'

    This is what frightens me. Life is so bloody hard day to day with pain and fatigue and I work hard to put things into my life to make it enjoyable. I went on holiday recently. I can easily see someone saying 'oh she went on holiday, nothing wrong with her,' when in fact everyday of my holiday was spent in bed. For me it was the chance to have a different view out the window. I didn't actually *do* anything when I was there. I struggled with every aspect of it - the travelling, sitting for restaurant meals, the time change, everything. I had to rest for days doing nothing in the week after I got back to recover. But that's not what other people imagine when I say 'I went on holiday.'

    I worry every time I walk outside the door to do anything, that someone is filming me or making notes or on the phone to the DWP to report me for fraud. It would be wonderful to not be on benefits just to get rid of that awful fear.

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  21. I so agree with all that's been said. Originally, many unions allowed some kind of fiancial help perhaps due to a works injury or being disabled, they were as rigid as the situation we face now.

    You were allowed to attend church on a Sunday but should you try and do anything else the help was withdrawn.

    The RNIB is already showing concerns about the assessment blind/visual impaired people will go through with the replacement to DLA and are asking for reactions and ideas to the change at their website until April 30th according to "In Touch" on Radio 4 this evening, they don't seem to like the PIP that is replacing DLA. They won't be the only one's...

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  22. I don’t like bullies be it in the play ground or as adults all grown up to work as snoops spies on people making nabour turn against nabour drumming up hate rhetoric of the disabled makes me so angry I blow a fuse, this coalition of monsters are bullies over the past couple of years the propaganda waged against people that are not fit for work has been nothing short of demonization, to the point where on good days people dare leave there home I have first hand knowledge of this,..THIS ATETUDE MUST BE STOPED IT IS GOING BACKWARD

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  23. What a shitty bunch of questions. Most days, I can do one of those things. Dry my hair. Prepare a meal. Even buy ingredients at the supermarket. But, and here's the crucial point. Only one per day. Get a bit of shopping? Well, I can forget about preparing a meal for today at least. I daresay to an outsider I look just fine when I'm doing whatever I've chosen as today's priority. But every single fecking thing I choose means that something else will need to be done by a family member/carer.

    Still. Boxes have been ticked. I'm fine. No more bleeding the taxpayer dry for me. Who cares if my already longsuffering family are squeezed that little bit harder?

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  24. Exactly Sue! EXACTLY! Like you I can't get DLA. I've been in and out of the tribunal service since 1993 (?). Has broken me too many times. Still in it. I'm lucky in that I DO get council funded care in my home but my home is a private one - cheaper for the state but more expensive for me. To go into social housing: I couldn't bear the noise and vibration in a flat, for the decay it would cause me death would be better. Just got my 16 year old car through its MOT thanks to the charity of retired people on small incomes, no money to repair my mobility scooter, food budget under a quid a day, debts piled high all while trying to deal with terrible pain 24/7, intermittent daily paralyses, lack of spoons, blah, blah. They're bastards. Cruel and utter evil psychotic bastards. I'm fighting all I can too, Sue. For all the others after me who will be forced to live as I already am living.
    xxx

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  25. People when they hear the reality of the cuts find it shocking or hard to believe and then feel as bad as we do, the problem being how it was presented in the media or rather it wasn't.

    And most think its a disgrace but wasn't something the population could vote on, it was left to the so called representatives placed in Parliament.

    I see the NHS bill has almost cleared the Lords now, so any gain was small and now it can be said to have been a waste of time...

    Democracy? Not really...This is the model we tell the world is the greatest and want others to follow?

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  26. interesting read:

    http://www.guardian.co.uk/commentisfree/2012/mar/07/sun-beat-the-cheat-benefits

    IDS on the trail of benefit cheats again!!

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  27. They just can't let it rest can they?
    I missed PMQ's today but understand Ed and "Sunny" Dave clashed on benefits...bit late to do so now...I suspect they were talking about the recent work placement schemes and what's gone wrong. That is small potatoes comapred to all the other things that have been pushed through by the coalition.

    All that should have been discussed far more...

    Its all getting reviewed in The World At One on Radio 4 in approx 30 minutes so I'll have a better idea by then.

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  28. What have the sick and disabled ever don to David Cameron? He was willing to parade his sick and disabled son for all to see and win the sympathy vote (and I would like to bet he claimed every benefit he could). Now his son is dead (which is a tragedy for any parent) but Cameron has now turned into disability hating monster who appears to want Britain to be filled with perfect healthy working individuals. I guess his idea is if benefits to the sick and disabled are stopped they then cease to exist and lower all the government's statistics so that they can say "what a good job we are doing." In some cases the disabled will literally cease to exist simply because they cannot afford to pay for the drugs they need, the heat they need or the food they need and in some cases they will simply give up on life. Perhaps somebody should put David Cameron through some of the humiliation and abuse the disabled go through daily and let him see what life is really likeand of course put him through the full medical assessment just for good measure and of course put him though this and then tell him it was all pointless because he has been on contribution based ESA for more than 365 days so he will not get any money anyway!

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  29. http://raynauds.healthunlocked.com/blogs/161036/This-was-written-by-someone-on-the-Lupus-Site--So-Scary--how-are-we-going-to-cope

    Hi Sue, your post was posted on this site.

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