Thursday, 31 July 2014

Confirmed - The FULL Impact of Cuts Disabled People Face

Reblogged from Sue Marsh:

Since the coalition came to power, sick and disabled people have claimed we are being fundamentally harmed by the coalition welfare reforms. Not scroungers or skivers, but  people living with long term serious illnesses like me, or who live with physical disabilities. Adults AND children. Young and old. People with terminal conditions, people with kidney or heart failure, people waiting for transplants and even people in comas. None have been spared. The government repeatedly assure you they have.

The government have of course denied that they are putting an unreasonable share of austerity cuts on us. Repeatedly and often aggressively. This is how they respond to the UN of all people :

Since 2011, almost every main voice involved in the services and systems that support sick and disabled people have argued that we must know how all of the changes TOGETHER have affected us so particularly.

Everything we rely on has been cut severely - in some cases by up to 40%. Disability benefits, sickness benefits, social care services, housing support, legal aid for tribunals, respite care, the independent living fund, council tax relief, higher education funding, everything.

It is very possible that if you were affected by one of the changes, you were affected by several or even all of them.

Whilst the government paid lip service to assessing what impact their reforms would have on sick and disabled people, they only did so one by one. They always claimed it was impossible to assess them all together and specifically, how they would affect disabled people when combined.

It has been a long and dishonest journey. As with so many things, the government have done everything in their power to keep the figures from the public.

They said that it wasn't possible despite a petition gathering over 100,000 signatures calling for what they called a "cumulative impact assessment" or CIA. (Scroll down for gov response)

The government treated the debate it generated in parliament - a debate sick and disabled people themselves worked so hard for - like a Punch and Judy show of partisan nonsense. You can watch it for yourself if you click on the following link :

They said it wasn't "robust" when both the very well respected Dr Simon Duffy from the Centre for Welfare Rerform and the equally well respected think tank Demos produced models they believed were viable.

And finally, just 2 days ago, Lord Freud, the failed millionaire ex-banker who re-designed our entire welfare system in just 3 weeks, wrote an official response to the SSAC, the government's own Social Security Advisory Committee, who also called for a CIA relating to disability, confirming yet again, that he believed it was impossible to assess all of the changes sick and disabled people have faced and claiming that the IFS, the all powerful Institute for Fiscal Studies, agreed with him.

This was yet another lie from Freud - there is no other word for it. As the IFS have confirmed

    “We can’t find anything we have written down saying we can’t do a CIA....We do think it is possible to do a CIA of tax and benefit changes for the disabled population as a whole."

As it happens, they did one themselves for Wales

Today, at the request of the Equality and Human Rights Commission, (EHRC) NIESR, the National Institute for Economic and Social Research have produced a definitive CIA and it is shocking …

    "Figure 4.9 shows that households with disabled children lose out by more in cash terms than households with disabled adults, with households with disabled children and adults losing out by more than either group – around £1,500 per household per year on average.

     "Households with no disabled adults or disabled children in the 7th and 8th deciles [wealthier households] actually gain slightly from the reform package, whereas households with disabled adults or children (or both) lose out. At the bottom of the distribution, households with no disabled people, or with disabled adults, do not lose as much on average as households with disabled children, or both disabled adults and children. In percentage terms the distributional effects are fairly regressive across all four groups, with households with disabled adults and children doing worst of all up to the top decile."

As one of the authors, Jonathan Portes says in an article for the Guardian today

    "Modelling the cumulative impact is feasible and practicable – at least by gender, age, disability and ethnicity. Our model isn’t perfect and could be improved, but it can be done.....Families that have a disabled adult or child lose perhaps five times as much proportionally as better-off able-bodied families."

    There is now absolutely no doubt at all that sick and disabled people have been hit over and over again by a barrage of cuts and the more vulnerable the family; the more disabled people within it; the more they have lost.

The DWP, Iain Duncan-Smith, Lord Freud and many right wing media outlets have kept this information from the public through every possible means. They will probably do so again today.

But over 100,000 people signed the WOW petition.

Think tanks and charities and many journalists know that this is hugely significant. And as ever, we can and will make our own news.



We now know that this government have harmed the very people they promised us they would protect. They have harmed the very people that voters never wanted to be harmed. They have lied about the harm being done at every stage and have actively tried to keep it from both parliament and the media.

If ever a story needed to be seen and understood, it is this. If you never bothered to click on the links in an article for more information before, click on these. It is a shameful and repellant story and those responsible have no place whatsoever within 100 miles of Westminster.

Sunday, 1 June 2014

But why shouldn't I be happy?

I don't want to list the symptoms and the challenges here; I don't want to dwell in the gloomy shadows of my illness. I sit here talking to my computer and putting positive words on my screen, surrounded by as much beauty and joy as I can cram into the little corner of the world that is accessible to me. I fill my cup, battered and twisted and dented and broken and leaking as it might be, but I fill it until it can leak, until it overflows with as much joy as I can muster. I keep filling it with joy so that it's constantly full. Then when I don't have the energy to fill it, the twists and dents hold onto little drips and dribbles so I can refill it faster tomorrow.

My joys are not the joys of a person who is fit and well. My triumphs might not be of the Everest climbing gold medal winning variety. My victories might not be of the irresistibly sexy sensual female variety. My cooking and loving and care-giving (which once defined me as a proud and happy wife and mother) have had to be set aside. My joys are of the week long miser-storage of energy and pain levels so as to be able to draw. My joys are of lying in my bed looking out at the riot of spring turning to summer in the countryside I love. My joys include warm dog snuggled against me under the blanket, or the total trust and love of the parrot I adopted climbing on my arm and asking for his head to be scratched. The fact that the best way to win a parrot's trust is to sit quietly with them for weeks is a blessing; I can do that. As long as I can "sit" the way I have to "sit" in order to stay comfortable - it's a handy shorthand to refer to it as "sitting".

Everyone around me seems to know best what I need to do for my health. I am not allowed to just simply be happy doing what I'm doing in the moment right now - whatever I'm doing other people expect me to do something else instead - "If this makes you happy, that will make you happier."In the guise of trying to help, they put a pin in my happy and remind me of the symptoms and the pain and the limitations that I was successfully thinking past and putting aside in order to be happy in the moment I was in. That can be as simple as "Oh you're looking better today, you must be getting well." What's wrong with that? I have come to terms with the fact that all improvements are either gradual or temporary; this does not mean that I don't enjoy them when they happen, nor does it mean that I am choosing not to get better. When the good days happen, I don't need to be reminded of the bad days. When the pain goes down to 2 - 3 on my personal scale and I can do things for a little while, I know there will be payback, but that joy is so rare that I have to catch it as it flutters past on gossamer wings and hold it gently until it flies on again. I do know my limits; I won't borrow spoons for joys when I have to save them for necessities. I'll squander a few on joys as you would spend a fiver on a sweet treat for a sunny Saturday when there's nothing else to save them for though.

Looking as normal as I can when people are around me is a part of that. I don't want to "act ill" because I am not just the illness. I hide the clutter of disability aids as much as I can. I hide the illness and the tiredness and the pain and the allergies and the reaction to light as much as I can. I spend my energy "acting well" because I want my brain to register the positives and forget the negatives. I want you to see me and not the illness. Every day, moment to moment, I want to forget that I am ill as best I can. I have always done this. In the moment, interacting with my social world through the computer, I am not seen as the blob in the wheelchair. You see my face - which won't yet break a camera - and my eyes. Not the angle from which the photo was taken. Every day is a no make-up selfie that sticks a middle finger up at M.E. and shouts expletives at it. It won't win; it won't stop me from being me. I don't need to be reminded that I am ill from the comments, actions and reactions of the people around me. The illness itself does that, I can't ever really forget it although I can choose to ignore it.

Then the thunderclouds of the current political climate roll in. Those looking in at my little world from outside say "If she's happy, she's not as ill as she implies and doesn't need the amount of benefits or care she gets now." Actually I need more direct care, more stability, less financial uncertainty and a lot less stress. I need these things provided for me because I don't have the ability to provide them for myself. I need these things to be provided for me by a caring society because it is not my fault that I can't provide them for myself. Why should I be punished for being ill? Why should I be punished because a tiny minority of people fleece the system? Why should I be punished because in trying to fix a system that wasn't broken, the government broke it? Why should I be punished for the sake of political propaganda? I'm not lazy, or a malingerer, I didn't choose this life. I wouldn't wish my life on my worst enemy; not because I'm not happy, but because of what that happiness costs me to find. It is not an easy life-lesson to learn that no matter what happens, I can still choose to be happy. In spite of the illness; it's robbed me of so much. I won't let it take my happiness, and you know what? I won't let bureaucracy or society take it either.

Sunday, 18 May 2014

"Bedroom Tax" and the disabled private rental tenant

My housing benefit has never covered the entire cost of my rent. I have never yet been offered a council property which suits my needs. Taken together these two facts add up to my being "rent poor" for my entire adult life, whether fit enough to work or not. This has knock-on effects. There is a huge catch 22 going on between my care needs, my benefits, social services and housing benefit.

I currently receive lower rate care. I survive with minimal care provided by two volunteers who help me out of the kindness of their hearts. I can't (always) dress myself, cook for myself, clean my own house, bathe myself, manage my medication, my financial transactions or even have a bath without help. I sometimes need help to get to the loo at night, which means that my carers need to stay over. I have reported these facts more than once, have medical evidence which back these claims up. My care needs fluctuate; on my worst days I'm bed-bound, normally I'm housebound. Because I survive with the level of care I'm currently receiving, DLA say I don't qualify for higher rate care. Because I don't qualify for higher rate care, I don't qualify for any help financially towards my "spare" room which my carers sleep in. Because I don't qualify for higher rate care I don't qualify for social services help. Because I don't qualify for social services help, I have to survive on the help I have, which DLA says means I don't qualify for higher rate care.

This means I don't get regular hot meals, regular hot drinks, and I sometimes have to sleep downstairs so that I can make to to the loo. I often sleep in my clothes and it can be up to a week between baths. If I actually had the amount per week coming in that the law says I need to live on I might be able to afford to get someone in privately to help me, but no. I'm short £12 a week. Even if the 'bedroom tax' is abolished, I'll still be in the same position.

The thing is that I don't want to simply survive; shouldn't I be allowed to live at least a little? One hot meal a day and a bath every second day? Clean clothes and the ability to get to a loo when I need one? Why yes, I could use a commode, but how would I empty it? It would have to sit there stinking for up to a week until one of my volunteers came in and emptied it - but that's the only practical solution to any of these care issues that either I or my carers have come up with.

This is the reality of my life in the lap of luxury on benefits. You want my ability to"laze around in bed all day?" You can have it, and bloody welcome, as long as you take my disability too.

Saturday, 3 May 2014

I really can't be bothered any more

I came here with the full intention of writing a moving and inspiring blog post about M.E for awareness week. How the research isn't generally looking for a cause of the symptoms. The politics and pharmaceutical and insurance company lobbying demonising millions of real people with a real illness. People who have this real illness that is as debilitating as the illnesses that get all the celebrity endorsements on the awareness campaigns. What do we get? Martine McCutcheon 'curing' her M.E with a fruit juice diet. How we play whack-a-mole with symptoms every day while being labeled scroungers and hypochondriacs. How even social services don't recognise fluctuating care needs for a fluctuating condition which is by its nature not visible when you look at a person who has it. How we've been constantly let down. M.E. CFS, Fibro, CFIDS - all of these diagnoses are deadend dustbins. We are diagnosed with these illnesses, and left to rot.

We're objects of ridicule, "Mental Malingerers", lazy scrounging layabouts - I've been told in comments on this blog that I should stop whining about not getting handouts any more and get a job instead of lazing about in bed all day. I wonder if yet another year, and yet another awareness week will make any difference. Even if Einstein didn't say it; insanity is doing the same thing and expecting a different result. I've watched the calendar turn, blogged for awareness week, and watched the same old same old demonise, marginalise, trivialise from the press.

We can play invisible illness bingo every day; from "but you don't look sick" to "So what's wrong with you, if you don't mind my asking?" From "Oh you just need to get out more." to "Oh my third cousin's neighbour had that, she used magic moon pills from lala land, she's fine now." and "Oh that's not what's really wrong with you, you should get tested for trendyillnesitis, they can cure that." and the killer. "Oh that's all in your head. You can think yourself well if you think positive. Lets do some crystal herb homeopathetic acupressure." I'm trivialising things that have lost me relationships, family and friends through the long sick-years.

You see there's no cure. Imagine that you wake up tomorrow feeling like shit, and you don't get better. Months go by and you get a diagnosis and put on treatment protocols that don't cure you, and in some cases make the illness worse. Meanwhile very few people actually believe you're ill, the popular press and comedians can rip the piss out of you and your illness and you can't complain. No defamation laws prevent them from telling the world that people with a particular illness aren't really ill. There are days when you wake up not remembering your own name through the fog of pain and cognitive dysfunction, and there are the darker days when you wonder if they might be telling the truth; that it's your own head putting you through this hell.

I can't be bothered trying to explain it any more, the ones who matter know it's real, those that don't understand don't matter.

Which are you?

Sunday, 16 February 2014

Diagnosis, journey and finding information

I was first diagnosed with M.E in 1989. It had been a long haul of GP, specialists, tests, retests and general faff lasting for nearly a year. I was going down with infection after infection, and each one was hit with antibiotics. I know now that these weren't actual infections, although I had all the symptoms, including swelling and white 'infected' patches in my throat. They were the same M.E flare ups I get now, producing the high temperature, sore throat, sinus inflammation and D&V that I still get when I've overdone things to this day. I used to cycle 28 miles a day, walk 5 miles with my Mum's dogs, in '86 I beat the qualifying time for the Olympics swimming front crawl. Back then I was just starting out at the bottom in the civil service, wanting to work my way up and make a name for myself, so I pushed through the illness and worked on. A lowly Administrative assistant has a long way to go in order to get anywhere. Eventually I had to accept that I wasn't going to be able to continue, and 'retired' at 19 years old.

I remember the diagnosis to this day. I broke down and was offered counselling. I refused. I broke down because I had just been told that there was no end to this; that there was no treatment, and although I might improve, I might also get worse. A death sentence would have been kinder at that point. Talking about it would have been exhausting, and would have changed nothing. There was very little information back then. I was put on Prozac which made all of the fatigue/fog symptoms worse, but I was in no fit state to argue. The years before my first pregnancy, and first remission were the lowest point for me. I had no help; my then husband was convinced that it was all in my head. I would roll out of bed and crawl to the loo, often not making it. Housework was impossible. I had no life.

My marriage ended when I fell pregnant. And then the miracle of remission. I never felt as well as I did when in the second and third trimester of pregnancy before or since. After each pregnancy my health began to decline again, although I learned to hide it. I hid it so well that during the end of my second marriage, when I was trying to explain how I would survive without him, he got the impression that I would lie about symptom levels. He never did see how bad it really was for me, and to this day he tells my daughters that I could get up to Dundee to see them if I wanted to, and that I'm not really ill.

This relapse has been the worst and the longest lasting. I was working in a fish processing and packing plant and got a chest infection which I tried to work through as there was no sick pay at that job; two weeks sick and you got the sack, no comeback. Out. I've had several operations for other health issues, including a hysterectomy and gall bladder removal. Each general anaesthetic steps my levels of activity down. Right now I am practically housebound, I have double vision caused by muscle fatigue which makes me unfit to drive in my opinion, it is not permanent, and is variable, so not notifiable. I am unable to tell how bad my vision will be, because I can't tell how bad my fatigue will be at any given time. Better to be safe than sorry.

I have built up a clearer picture of how to manage my own illness through years of research, both in libraries and now online. Some of the information out there is good, some of it is bad, some of it is dangerous and some of it is downright weird. I have learned to look at it critically, seek corroboration and remember that if "it seems too good to be true,it probably is." M.E. is a real illness that produces real symptoms. I am in general as ill as you would be with a viral infection for which you would seek GP advice. Not 'man 'flu' or a cold, but shiver-sweat-vomit-exist till it passes ill. Except that for me it never passes. I am currently wrapped in blankets laid propped up on the sofa with my eyes shaded. I am dictating this to the computer using speech-to-text. I am not well enough to go anywhere, or do anything. Today I can't even lift a mug to take a drink. It is not that I believe that doing more will make me ill. I am unable to do anything because I already feel ill.