One Month Before Heartbreak

What starts with 'E' and ends with homelessness?

2012-01-16T08:30:00.000Z

Eviction is one of those words that you’ve heard your whole life, like bankruptcy or jail but never in your darkest, cheese-induced dreams did you ever think you might face yourself. It’s a “grown-up” word, a word whispered in corners or highlighted in a seedy documentary.

I certainly never considered for a moment that it would ever be a word to cause ME sleepless nights and heart-thumping panic. That was until I lost my job. Many of you are aware that I’ve had on-going medical issues over the past year, you may not know that I was “let-go” in November. It was very quick and painless, without fuss or ceremony, just a P45 dropping quietly onto my doormat.

Nothing to be alarmed about, we have systems in place to help the unemployed of Britain don’t we? Yes we do and I am so grateful for them, I am a lot worse off financially now than when I was receiving the minimum sick pay from my employer but I knew that with adjustments we had enough money to live on and a roof over our heads.

Then my Landlord gave me notice. Not a worry, I began looking for another house and found one in my village almost immediately. Then came the bombshell that made the “Eviction” word a part of my world. Since the government announced their planned Welfare Reforms, Letting agents will no longer rent properties to Housing Benefits claimants.

Let that sink in for a moment.

Who claims Housing Benefit ? Single parents, lower-paid workers, mature students, pensioners, unemployed and the disabled.

Putting aside the others as this post is for the Broken Of Britain, Housing Benefit is claimed by the disabled who are unable to work due to their disabilities or who are in poorly paid employment. Not only are they already under a lot of financial strain and living in fear of the benefit changes being implemented but now they risk homelessness as well.
There is a way around the letting problem though, you provide a guarantor for the letting agency.. at double the usual referencing cost and at huge cost to your pride and self-esteem.
But what if you can’t provide or afford a guarantor? What will happen to these people? Local Housing Association lists in many areas are already so strained they can only allot houses to homeless people. My dream is to have a LHA house, to be able to afford the rent which would be half (yes HALF) what I am paying now to my private landlord. The money I am saving in rent would remain in the public purse, rather than filling the fat wallet of my landlord..

One suggestion I have to address Letting Agent’s concerns is for the government to return to the policy of paying Housing Benefit directly to the Landlord, rather than the claimant. Another would be to reassure claimants and Letting Agencies that HB will always be paid to the low-income disabled and ill people of Great Britain and, if it isn’t already, to make it illegal to discriminate against them in this way.
As for me, I lost the village house to a working family but am now in the ”referencing” stage of renting another.. My Landlord has filed papers to commence the process but I am keeping EVERYTHING crossed that the “E” word doesn’t soon become my reality.

Originally posted here

Access Small Areas - Steve Sparshott

2012-01-16T08:00:00.000Z

Being disabled and not being a billionaire evil genius is a shite state of affairs.

After a six year trial period, I’ve decided it’s not for me. The problem is context - context being, supposedly, everything. You see, I didn’t spec my environment; I don’t have a hollowed-out island full of boiler-suited minions, with smooth floors and rapid, spacious lifts. I have London, and it’s a fucking disgrace.

Let me tell you about my “wheel-chair”. The concept of a chair with wheels seems to perplex some people, but I’ll assume you’re not one of them. Do your knuckles drag on the ground when you walk? Are you involved in civic planning for one of London’s numerous (peculiarly autonomous) boroughs? Do you own an airline? No? OK.

It’s electric - I don’t even have the dignity of a cool titanium-framed carbon-wheeled manual chair, because my right arm has no function at all; I could propel a manual, but only in circles. So I hum along, steering the thing left-handed with a little joystick. It’s correctly called a powerchair. People call it an “electric chair”, and we laugh, or a scooter, and I correct them. If I had a pound for every time I’ve seen someone park one of those mobility scooters, hop off, extinguish their cigarette and stroll into a shop, I’d have enough money to buy a pair of American Apparel underpants.

As Alistair Cookie once said on Monsterpiece Theater: Me digress.

Where was I? Oh yes, fucking disgrace. Pavements full of bombholes, unending “maintenance” work, people wandering slack-jawed, their faces and minds buried in text - on my way c u in 5 lol. Bikes and dogs’ eggs, always dumped right in the middle of the pavement. And then…

In every street there’ll be one junction where the kerbs aren’t lowered. Or my favourite variation - it’s lowered on one side but not the other. How does that happen? Are the two sides of the road in different boroughs? Did the budget run out just there? So I have to venture out into the road and find the next place where I can clunk back up onto the pavement. Fifty percent chance I’ll be going against the flow of traffic.

I have to do just that to get to my own front door. A few months back I was scuttling along my street, hugging the kerb, pulling an apologetic face at the drivers of the few cars coming the other way, and the last one, a dark blue Vauxhall Astra, swerved towards me.

Let me reiterate.

The driver. Of a car. Swerved towards a guy in a. Wheel. Chair. The driver started shouting.

“Wot the fack you doin’, you’ve got the whole fackin…” I didn’t hear the rest, I just kept going.

Since then I’ve taken to waiting at the end of the one-way stretch until there are no cars. I then buzz along full tilt, past my own front door to the first available driveway. Still, that takes a while; a car can easily appear at the far end and meet me half way. A few days ago, that car was a dark blue Astra.

We must have both performed an instant risk assessment - the type that doesn’t involve research and analysis, the type that doesn’t even really involve the brain. And what our spines told us both to do was: Keep going. I maintained a completely blank expression and stared at him; he just looked straight ahead, and we breezed past each other.

I struggle on in my naïveté, continuing to believe that people are basically decent. Catch them on the wrong day, though, and they’ll drive a car at a guy in a wheelchair.

Painful to live in fear isn’t it? Nothing is worse than having an itch you can never scratch.

Oh I agree.

Announcing One Month Before Heartbreak

2012-01-15T11:14:00.000Z

I’ve been thinking about things that we can do to raise awareness of The Broken of Britain and our cause. This post is to announce our newest venture.

One Month Before Heartbreak

A Broken of Britain

Blogswarm

14^th – 16^th January 2011

What is it?

It’s something a bit similar to Blogging Against Disablism Day (BADD). Although I will run this yearly if I need to, I’m really hoping not to need to. Basically it’s people getting together to all blog on a subject or a theme at a specified time. The hope is that by all writing at the same time it raises awareness and makes more of an impact.

Why One Month Before Heartbreak?

The consultation that’s currently ongoing about DLA reform ends on 14^th February 2011. Which is Valentine’s Day, traditionally a day for love but which could severely affect disabled people if DLA reforms aren’t handled correctly. We need to ensure that our voices are heard. We’re holding this event a month before the consultation ends in order to raise awareness of the consultation and give people to chance to respond to it if they wish. Bendy Girl came up with the name of this event.

What do I do?

Basically, write about whatever you want. Obviously, it should have something to do with disability and it would be great if you could mention this event and Broken of Britain. You don’t need to write specifically about the DLA consultation and your personal experience. Those are welcome but this isn’t topic specific.

Nor do you need to write. You can do a video, a recording, write a poem, draw a picture, anything you want!

Who can take part?

Anyone. You don’t need to be disabled or a carer or know a disabled person to take part. Nor do you need to live in the UK or be British. For our campaign and especially for this event to be successful we need to get this out to the wider community, including the international disabled community and the non disabled community.

What can I do to help?

Post on your blog, twitter, Facebook, any website you go on about this event. We need to people to know it’s happening. And keep doing so until the date comes. Use the #BofB or #ombh hashtags on twitter.

I have a more concise version of this announcement people can repost if they wish. Comment here if you want it or let me know where you think it should be reposted.

Take part if you feel able. This event runs over three days in the hopes that more people will be able to contribute than if it was tied to a single day. It’s not necessary to participate each day although you can if you wish.

If you spot something to do with One Month Before Heartbreak that you like, tell the person who wrote or otherwise made it. Who doesn’t love feedback?

Equally if you spot something you like share the link so others see it.

More will be posted about this along with some other ideas on how to take part as we get closer to the time. Please let me know of any suggestions or ideas you have.

Language

Language is important. However people have very different ideas about what is and isn’t acceptable. And they have their reasons for it. For example in some areas “disabled people” is acceptable but in others “people with disabilities” is considered more appropriate. Please respect that everyone has a choice. The Goldfish, creator of BADD, has given me permission to link to her Language of Disability Post which explains more about this.

And Finally…

Please don’t feel any pressure to take part or do more than you’re able to. I want people to stay safe and enjoy this!

Don’t forget the date!

One Month Before Heartbreak

A Broken of Britain

Blogswarm

14^th – 16^th January 2011

Pat's Petition

2012-01-13T23:02:00.001Z

I'm expecting that most people will have seen this already but to be on the safe side I wanted to share this here.

The government have an e-petition website. If any petition receives over one hundred thousand signatures then it will be eligible for a debate in the House of Commons.

Pat Onions is blind and is also a carer for her husband David. On top of that she finds time to campaign on issues that affect carers and disabled people. One of the things she's done is to launch Pat's Petition which calls for the Welfare Reform Bill to be paused and properly reconsidered.

From the petition:
The government were embarking on wholesale reform of the benefit system when the economic crisis struck. These welfare reforms had not been piloted and the plan was to monitor and assess the impact of the new untried approach as it was introduced in a buoyant economy. Unfortunately since then the economy has gone in to crisis and the government has simultaneously embarked on a massive programme of cuts. This has created a perfect storm and left disabled people/those with ill health, and their carers reeling, confused and afraid. We ask the government to stop this massive programme of piecemeal change until they can review the impact of all these changes, taken together, on disabled people and their carers. We ask the government to stand by its duty of care to disabled people and their carers. At the moment the covenant seems to be broken and they do not feel safe. Illness or disability could affect any one of us at any time, while many more of us are potential carers.

As I write this the petition has a little less than 18,800 signatures. The needed 100K is a way away and it might seem to be impossible. But it's very doable. Recent events have shown just how much we can achieve with each of us doing as little or as much as we can and by remaining united.

So I'm asking everyone who reads this to sign the petition and to do whatever else they feel able to share it with others.

Spartacus Report

2012-01-09T11:48:00.001Z

I bet many of you never expected to see this blog updated again but this is too important not to share.

A group of disabled campaigners, organised by Sue Marsh of Diary of a Benefit Scrounger raised nearly four grand in funds (solely through the sick and disabled community on blogs and twitter donating what they could afford - a fiver here and a fiver there) and used this money to produce and distribute a very well researched and hard hitting report into DLA reform.

It's official title is Responsible Reform but it's also known as The Spartacus Report.

The full report is here and there is also a press release available.

Please do all you can to share this on twitter, Facebook, blogs etc. The hashtag to use is #spartacusreport and it's being asked that where possible people use old style copy and paste retweets as this counts for getting it trending.

There is also a template letter on Sue's blog (linked above) to use to send the report to your MP.

I hope to share more about this on my own blog as the day progresses.

Please vote for 38 Degrees to campaign on DLA

2011-03-02T16:35:00.000Z

38 Degrees have a list of various campaign ideas. One of which is a campaign to Save DLA. People can vote for which of the campaigns they want to see taken up. You get 10 votes and can apply up to 3 votes to any one campaign.

Currently the DLA campaign is in 3rd place. 38 Degrees is a huge organisation with over half a million members. It describes itself as an organisation which brings you together with other people to take action on the issues that matter to you and bring about real change in the UK. If they campaign on DLA it has huge potential. Please take a few minutes to learn about 38 Degrees and consider signing up and voting for the DLA campaign.

A campaign to stop the abolition of Disability Living Allowance - the measure of civilised society..

More Press for One Month Before Heartbreak

2011-02-23T13:44:00.002Z

I have an article in this months Disability Now!

It's called Triumph Over Cuts Tragedy and it's about the One Month Before Heartbreak campaign. Mostly about the sense of friendship and community we managed to build. To me that's probably more important that what we did fighting the cuts.

Please comment and let me know what you think of it - I love getting feedback and it's all really useful.

Finally, I'd just like to take this opportunity one more time to send huge huge thanks to everyone who took time to write, tweet, video, comment, facebook and so many other things as a part of One Month Before Heartbreak. It might have been my idea but you are all part of the reason why it was so successful!

Consultation Extended

2011-02-10T22:00:00.000Z

I planned to blog tomorrow about the fact there are only a few more days left of the consultation period for DLA. However, this afternoon the deadline for the consultation period was extended until 18th February. This was done very quietly and hasn't really been announced. No reason behind this has been given but the online submission is no longer available due to IT Problems. Instead there is a document on the consultation website with the questions and an e-mail address to send them too.

Please if you can use these extra few days to lobby your own MP, or Maria Miller or any other MP about this. Send them the link to OMBH - to your own particular submission if you made on and you're happy to do so. Tell them what DLA means to you, what losing it would mean to you. I know it's really tough sometimes to share those exacting, private details but so many people did it as a part of OMBH and doing so again could make a huge difference.

Lets make these next 8 days count.

Challenging Mental Health Stigma and Discrimination

2011-02-05T14:25:00.002Z

Inspired by the current stereotyping and bullying of those with Psychiatric Illness by the British Media.

A few days ago I cried.
The uninitiated might be thinking: "So what! He's one of those miserable depressives": but: "miserable depressives" is just one of the stereotypical pigeonholes that writers, journalists, and others, have tried to fit us into throughout time. I am capable of crying for England of course, when the dark extremes of my depression visit and I sit, guilt ridden, remembering every foolish thing I have done (and over 60 years that's quite a lot). At such times I also remember every "special" person the "mad" me has hurt and driven away, and then I can cry uncontrollably for days. In response to someone saying "can I help", "what's wrong", even "I love you", rivers of tears, flowing over my cheeks and mixing with the endless lava flow of snot the comes from who knows where at times like this.
This though was a different sort of crying, it was "Normal" crying. The sort proper human beings do, some at the drop of a hat, as a reaction to things both happy and sad. For me that luxury is restricted to certain times, like that bit at the end of The Railway Children when Jenny Agutter says: "Daddy! My Daddy" or when ET says "I'll be right here", or in "Armageddon" when "I don't want to miss a thing" begins to play. (God, I'm almost emotional just thinking about it - now that is almost "Normal"). Truth is, there are times when I would love to have a good cry, if only to give my sinuses a good clear out, but it doesn't work like that for me. Like many depressives, over time, I have become so skilful at not betraying my in a mood by crying in public that my tears have almost become detached from my emotions and have become attached to my thinking instead.
The "normal", spontaneous tears I cried this week flowed after a dear friend I have made on Twitter responded to my request to know why many of the people with physical and psychiatric disabilities on Twitter use the term "Spoons" to describe their energy levels. I'd sort of figured out that "I'm running out of spoons" meant running out of energy and that "lots of spoons" meant having plenty of energy but I was wondering where the term had come from.

My friend directed me to an Internet site where, with that clear white light that comes from understanding growing ever brighter, I read the brilliant "Spoons Theory" of Christine Miserandino. The tears were a mixture of happy and sad. They came because I was learning the vocabulary of disability and at last I had been given an alternative to saying "not too bad" when others inquired about my state of health. Questions which are easy enough to answer when body and mind are well, but requiring such a complex answer when they are not that it's not worth trying to give one. You know the times I'm talking about here, those times when, at best the listener will become emotional, over concerned, or unnecessarily pitying of circumstances that are just everyday life for us: and at worst: will become expressionless, eyes glazing over, as they search for a mental escape from what I am saying while attempting to retain an "I'm really interested" attitude. Don't know about you but I intensely dislike it when people react to my everyday life as if it is something horrendous, I quite like it most of the time.
Christine Miserandino's theory really resonated with me on more than an emotional level. In sociological terms I am something of a "Symbolic Interactionist" as was my sociology "hero" Erving Goffman. Goffman saw language as a crucial factor in the way society functions. His work laid the bedrock of "Stigma" and "Labelling" theory. In his 1960 work "Asylums" he identified the ways in which language is used by social groups to exclude those they do not wish to become group members. After observing what went on in a psychiatric hospital he identified the ways in which both the "Staff Group" and the "Patient Group" used vocabulary to exclude the other while there was a universal language used by both when it was in the mutual interest of both to interact in a meaningful way.

Discrimination is heavily reliant on language for its survival. The easiest way to discriminate is of course to just walk away when an unwanted person or group come near, but when this is not possible, or when the discriminators want to retain possession of their territory, it is words to which they turn to make their point. This trick is learned very early in life, in the school playground, or, if parents use the language of discrimination in the home, even sooner.
Bullying is discrimination in its most violent vocal form, especially the very subtle bullying where children exclude one of their number by talking about things the unwanted has no knowledge of. Most of us will have experienced this at some point during our childhood and we all know that it is much harder to deal with than the overt discrimination of name-calling as it is almost impossible to prove that it is being done to intentionally hurt. Hence, the more sensitive child begins to believe that they are being excluded because there is something wrong with them and the embryo of an adult with self-image problems begins to grow while the seeds of some forms of mental and psychological illness are sown.

My sisters and I endured quite a lot of name-calling. Living in poverty after my father left when I was two and a half, we were clothed mainly in hand-me-downs from older cousins, in second-hand clothes provided by charities or, worst of all, purchased at a local jumble sale. In the latter case it was always possible that the previous owner of these clothes was a classmate.
Bullying based on our ethnicity came later. Many people cite the "Rivers of Blood" speech by Enoch Powell in 1968 as the legitimisation of racial discrimination in this country but the opinions of Mr Powell affected us before that.
It was as a junior minister in 1955 that he first sowed the seeds of discontent regarding the number of immigrants coming to this country in a Parliamentary speech. In 1962 he was the Health Minister when the Thalidomide scandal occurred. Thalidomide was a drug commonly prescribed to women suffering extreme morning sickness during pregnancy. As a result many of the women gave birth to children with missing limbs. During the media clamour for compensation Powell refused to meet the children claiming that the mothers were responsible, saying "anyone who takes so much as an aspirin" during pregnancy is, in his opinion, putting their unborn child at risk.Not a nice man.
It was a speech he made during the 1964 general election campaign that affected my sisters and me. In this speech he claimed for the first time that the numbers of immigrants in the United Kingdom would lead to problems "for us and our children". Interviewed by Norman Fowler of The Times his reply to one question was that Immigration was the biggest issue at that election. The Times never printed Fowler's article. Powell was the only one talking like that at the time and the paper felt he was out of touch.
But that 1964 speech laid the foundations of the bonfire that Powell ignited in 1968. For my sisters and I are life changed in 64 as people who had previously been genuinely inquisitive about the fact that our mother had been born in India began to distance themselves from us and make derogatory remarks in our presence about "Immigrants".
Our Mum's response to our tears over this was to say "call them names back": not easy that: not when you're a child, not when responding in that way might alienate further the bullies whose acceptance you are desperate for.

Many comedians say that they became "funny" in the playground where they used humour to gain acceptance into groups that previously did not want them. I developed a strategy where I anticipated the attack of bullies and, humorously, took the words out of their mouths by using their ammunition in a humorous, self-deprecating way that made any attack by them pointless. This stood me in good stead when, in my early twenties, I first experienced discrimination, name-calling, and mockery because of my mental illness. The television programme "Shoestring", (who’s central character was a private detective who had suffered a nervous breakdown) was very popular at the time and one work colleague in particular derived great pleasure from shouting "Here comes Shoestring" whenever I approached. I would turn the embarrassed laughter of our other colleagues into genuine belly laughs by responding in character, with something Eddie Shoestring had said in the most recent programme.
I didn't really see this as discrimination at the time, (in my mind "real" discrimination was what was happening to black people in the southern states of the USA and in South Africa). I turned that around and viewed it as someone trying to cope with his own embarrassment at my presence but I gradually realised that this is exactly how most discrimination takes root, by reducing a person to a stereotype.

I guess I first took a political view of discrimination 15 years later when, after years of voluntary work and move to "unqualified" full-time Social Work, I was introduced to the work of Erving Goffman while at university studying for my Social Work qualification. By then I had witnessed, and supported where I could, the civil rights battles of Black and Asian people and Women in the UK. The Gay Rights movement was just gaining pace.
My view now is that the major tool in breaking down discrimination based on illness and disability is that minority groups, like us loonies, need to reclaim the vocabulary of the ignorant in the way movements such as the Gay Movement and the Anti-racism movements did in the past.
I believe that by talking the language of mental illness discrimination and stereotyping (such as nut-case, loony, round the bend etc) and using these as terms of endearment or humour between ourselves, we reduce the hurt and the sting when they come from "outside", thus disarming a major weapon of the bullies, the Ignorant, and, (sadly), the charities who purport to represent us but who patronise us by wanting us to present an "acceptable face" of Mental Illness to a public that can not be bothered to understand us. Even worse, in the case of the latter, presenting an "acceptable public face" can determine the level of help we receive.

Stepping aside from mental illness for a moment, with the coming of the Social Model of Disability, a term first coined by disabled academic Mike Oliver in 1983, came increasing realisation that charities served best those who fitted neatly into the stereotype-based pigeonholes the charities themselves had constructed. The major determinant in deciding eligibility was that the disabled person, or, in the case of children, their parents, adopted the stance of grateful victim. Charities socialised those they purported to help into a culture where everyone was "grateful for small mercies" and never questioned why there was not more. Those who needed help from the charities soon learned that rocking the boat would lead to problems for them or those in their care which, at worst, could result in denial of service.

The fact is that, in common with those with physical disability and learning difficulties, we loonies did not become disenfranchised until the coming of the Industrial Revolution. Before that time we would have been found a useful role (in line with our abilities) within the family production unit. This can still be seen in countries like Greece and Turkey where, on one occasion I witnessed a young man with no legs using his hands to propel his carriage trolley from business to business carrying messages between them, and another who was clearly conversing with beings the rest of us could not see while he collected deck chairs. Here at home, one of the reasons that I choose to shop at the supermarket I use is because at times the whole environment is overwhelmed by the gleeful high pitched singing in recognition of a familiar face by a shelf stacker come odd-job who clearly spends the rest of his time in a parallel world to this one.
There have been cultures where the psychotic were revered as visionaries, and those with less visible mental illnesses or psychological disorders were regarded as "sensitives", in touch with both previous and future cultures as well as the one in which they live. Mental illness was once not the problem that society claims it is today.

I guess I became "mentally ill" on the day in my teens when my childhood thought that "I wish I was dead" became - with the realisation that my fate was in my own hands - "I'm going to kill myself".
Back then in the early 1960's and living in rural Oxfordshire my knowledge of mental illness was based on the "myths" which abounded about three huge Gothic Hospitals, all built some distance from the homes of the "normal" majority. Those who were "sent" to the hospitals were rarely ever seen again. Those who did return were invariably "changed", life's glitter and spark extinguished by the "chemical cosh" or by the electric shock treatment that adults spoke of in whispers, leaving my childhood imagination to fantasise about people being wired up to a machine similar to Frankenstein’s.
The deadened eyes and slow speech of those who had experienced this treatment did nothing to counter that vision. One clear example was provided by the Aunt of my best friend. She spent all of the 1950's incarcerated with the male created, female only, psychiatric condition known as "low moral fibre". Basically she had given birth to a child before she was married.
Witnessing her immunity to any form of happiness or stimulation, the way she welcomed success or failure with the same blank expression, ensured I never told a soul as my teenage advancement brought awareness that, at times, I saw things others did not see and heard things others did not hear. I became aware that my thoughts were often different to those of my peers, a major example being the way they reacted with fear or horror to any mention of death, especially suicide, a concept with which I was very comfortable as I spent some time with those thoughts daily.

While I was single I was able to conceal my depression as long as I gave it an occasional voice through the hidden poetry I would write from my darkest places.
I made a deal with myself when I was 18 that I would never marry or have children who might "turn out like me". However, love turned out to be a more powerful psychosis than my own and, when my depressive cycle came round during the seventies; I had to seek medical intervention as the illness was impacting on my wife and children. (Because of the potential side-effects of the drugs I was taking I had to tell my employer "in confidence" about my illness. Hence the Shoestring comparison and whispering huddles and giggles when I approached some of my work colleagues).
Following the break up of my family (now there's a familiar mental illness tale) in the mid eighties I plunged to previously unexperienced depths of depression as “reactive depression” to my loss became entangled with my endemic “clinical depression” and I required "time out" in a therapeutic community. At that time it was necessary to make my mother and sisters, and my (by then different) workplace, aware of the illness (which I led them to believe was occurring for the first time).
As I recovered I became aware of the three distinct approaches towards me: there were those who spoke in whispers whenever I was close: those who hid their own lack of understanding behind callus, insensitive or offensive, "well meaning" humour: and those who felt the need to treat me, alternatively, as an invalid or as a child. What was clear was that everyone was so focused on my diagnosis that they had stopped seing "Me".

Because of those experiences I never attempted to return to the same "life" after either of my next two major breakdowns.
This had advantages; I obtained qualifications in both Social Work and Adult Education and had successful careers in both between relapses. I learned that answering the "Major Illnesses" question on application forms with the word Depression was a big mistake. I found that because of the range of my experience I would always be invited for interview if I wrote "will discuss at interview" in that space. At the interview I would claim, not dishonestly but not strictly accurate either, that I had suffered a major "emotional breakdown" following unfortunate family circumstances; at which point most interviewers would avoid eye contact and apologise for "dragging up" the past. Interestingly, and I suppose naturally, they could all identify with this concept whereas the mere mention of psychiatric illness led their thought processes to the stereotypical images of madness promoted by the media and that wonderful term; unstable.
My spinal injury had occurred and I was physically disabled by the time my teaching career ended with my longest depressive episode yet in 2005. At that time I no longer had the will or the energy to protect others from my illness so, with the help of my partner and the staff at the local psychiatric day hospital, I "Came Out" to my family and closest friends, revealing the full history of my breakdowns and the suicide attempts they had been unaware of.

The reason I have borrowed the term "coming out" from the Gay Community is that from that day I no longer fear the stigma, the insults or the patronising attitudes of society.
This is me, I am now officially a loony, so when (at 55) I grew the pony tail I've wanted to grow since I was 18, I just shrugged of the complaints and sarcastic remarks. "What do you expect, I am a nutcase". These days if I am not well enough to do something I tell the truth and seek whatever help, or, more often, the isolation, that I require.
No more excuses, no more lying to those I love, no more "putting a brave face on". Like the grand old Duke of York, “When I am up I am up, and when I am down I am down, and when I am only halfway up” etc.
Hence, my delight at being led to Christine Miserandino’s "Spoons Theory". I have since directed all of my nearest and dearest to the website and I expect them to understand why I will only give a one word answer, instead of having to repeat my entire medical history, whenever I am asked that "how are you today?" question.

The thing is, now I am an out and out Loony, happy as a pig in shit, it is the establishment, not the 'man or woman in the street' that discriminates against me. Two recent examples:-
1: When I sought legal advice recently to fight discrimination against me because of my physical disability, I was told by a legal charity formed specifically to deal with situations like the one I was involved in, that seeing the problem through might be "a waste of" my "time and energy". Nothing to do with my physical disability that so I think it's clear which of my incapacity's led to that comment.
2: You may have come to realise through this post that I now believe in facing negative labels and stereotypes head on. I wrote a poem entitled "I am a loony from the bin" (you will find it elsewhere on this blog), which I actually showed to people. It was praised by my colleagues, the social workers, and the psychiatric nurses at the day hospital. In it I take all the derogatory terms about mental health and turn them in on themselves. Reclaiming the language of Mental Health culture from the bullies in the way Anti-Racist movements and the Gay Community had done in the past.
With the encouragement of my supporters, I sent the poem on different occasions to two separate mental health charities who were requesting creative input from “service users”. Neither of them acknowledged receipt of the poem. I am left to wonder what might have happened if I had sent a wholesome, clichéd, poem or essay using the vocabulary of the victim, the vocabulary they themselves use to represent me in their advertisements.

I refuse to "suffer" from depression or from my physical disability. I have both, that is true, but I spend my life consumed by neither. There are some aspects of my personality which are loved by others that possibly would not be there were it not for the understanding of others I have had to undertake on my quest to understand myself. I refuse to see the day that I will require a wheelchair as the negative many others do. On that day I will no longer have to experience the pain that surges through my legs, buttocks, and lower back every time I stand. From that day I will no longer be the slowest thing on the pavement, having the backs of my legs and bruised by the shopping trolleys of others who are too ignorant to simply ask me to move aside. From that day a part of my imagination which I have had to lock away will be released. When I was a child I ran or cycled everywhere at top speed with the voices of David Coleman or Murray Walker providing commentary on my actions as I became the fastest thing in the world. On the day I first take my wheelchair onto the streets I will become Tanni Grey-Thompson, so watch out world.

But best of all, on that day, when I return from my excursions and I am asked "how was it"; where I might once have felt obliged to describe every screaming muscle, I will simply say, "no spoons" and, rightly, I will expect my communication to be understood.

Brokenbrian February 4, 2011.

You will find Christine Miserandino’s Spoon Theory here.

Incurable

2011-02-04T17:00:00.000Z

This is Megan's story. As it is long (circa 4500 words) she has given us an extract to post here. I'd encourage everyone to take the time to read the full version if they can. The full version is available as a google document. Please be aware that Incurable contains mentions of suicide which some people may find triggering.

People always ask how you are but they never really want to know the answer. They just want to hear, “Oh I’m fine, thanks!” and they’re happy to believe that. They don’t want to know that you can’t move because the pain is excruciating, or that you can’t swallow your pills let alone food, that you had to change your pants twice yesterday because you didn’t make it to the toilet in time, or that you’ve been vomiting for weeks, waking up in sweats with raging migraines and cramps, or simply cannot move on some days and you never knowing which day that will be, or looking forward to a visit or an outing and having to cancel them time and again because you just aren’t well enough.

Read more here

Vikki's Story

2011-02-04T12:54:00.002Z

I’m an articulate 26 year old who is on DLA and I would like to write a long piece about how DLA affects my life, however I don’t have the energy to do so, so I will keep this brief.

I applied for DLA when my health deteriorated, I could of applied for it before but like so many others thought it was for people far worse off than me, after all I could walk to the toilet and make myself a sandwich, thats almost “normal” for a 16 year old isn’t it? When I did apply for DLA I was bedbound, unable to walk, at times I could move in bed and talk, at others I was paralysed. My DLA medical assessment really took all this into account... I had my reflexes tested and was asked to poke out my tongue! The decision came through as lower rate care and mobility so it went to appeal, was turned down so a tribunal was held in my blacked out bedrooms- even one of the assessors admitted they didn’t know why they were there. Since then I have been very lucky and have been on higher care and mobility and not had another tribunal but form filling every 2 years is very stressful and the energy taken by filling in the forms (with help from my Mum and CAB) spirals my health down. Last year my new consultant got involved and much to my surprise I was given an indefinite award, phew.. only turns out we will all be reassessed under new plans.

My DLA isn’t only just used on care needs, the NHS keeps turning down drugs my consultants want me on so I’m forced to buy them myself privately, and pay for admissions to a private hospital. Despite not having stepped a foot outside the door by myself for over 10 years I’m not entitled to an electric wheelchair because I can crawl on my hands and knee’s to the toilet, therefore I am trying to save what DLA isn’t taken up by medical needs to purchase a wheelchair, I already had to top up a voucher to get a reclining chair so I could sit at a table and buy some splints to give me a chance of standing.

DLA needs to stay, those who need it will be put through hell in fighting to retain it, those (very few people) who are making fraudulent claims will continue to be able to fight and play the system, the new proposals simply aren’t fair.

An OMBH Contribution from Peter Lockhart

2011-01-26T13:26:00.000Z

Social care in the UK has been under the cosh for many years including
under the last Labour government. However we got by, a combination of
DLA, council services, free bus travel, Incapacity benefit, housing
benefit etc saw us get by. We were never well off, it was always a
struggle but we coped. We couldn't go on holidays, often even with DDA
holidays were more expensive for disabled people, we didn't have the
same choice and this meant we couldn't shop around, going abroad was a
struggle especially outwith the EU as medical insurance was
prohibitive for people with long term conditions. Many hotels and
guest houses are still inaccessible or don't have disabled toilets.
Not just hotels. A night out for a disabled person in the UK has to be
planned like a military operation. Pubs, restaurants, bingo halls,
music venues even some theatres are still not accessible or don't have
toilets. Before going out a disabled person has to make sure that the
venue of their choice will be accessible or have toilets. It means
phoning ahead, checking parking, trying to find out what the
conditions are outside for instance if there are hills, high kerbs or
other obstacles that will need to be negotiated. I've been doing a
survey in Fife for venues suitable for disabled people, I turn up in
my wheelchair and check for access, manoeuvrability and facilities
such as toilets. Of the 50 places i';ve checked at present only 14 are
places I would recommend to a disabled person. In my home town of 13
pubs only 2 are accessible and with facilities. So nights out in my
home town are not really feasible. Not for me a pub crawl with the
lads. So its not just poverty that affects disabled people, there are
still so many restrictions to our lives.

Another problem we are now facing is the attacks coming our way from
the press, we;'re branded scroungers, hand out junkies, lazy,
feckless. Yes people will say but its not the 'genuine disabled' were
attacking. Really? What is a genuine disabled person. How do you know
what a genuinely disabled person or not. Its nasty, its viscous, you
have government ministers saying that we cant afford the level of
disability benefits. When they say that what do they mean, that we're
a drain on society? So, with all the other difficulties we face we now
have to contend with attacks from the press. We do feel it, where a
couple of years ago I was confident going out i'm now beginning to
feel less so. i wonder what people are thinking, I worry that people
will be looking at me with suspicion in short I'm starting to feel
worthless compared to how I used to be.

The whole point of the attacks has been to soften society up for cuts
in disability benefit. Stories in the papers on a regular basis about
people claiming benefit who are entitled to it, stories of people who
have run a marathon while claiming DLA. But the fact remains that
those cases are rare. What you don't read in the press are th stories
of the mistakes, the stories of desperately ill people being turned
down for DLA. Even more common are the numbers of people being refused
the new sickness benefit, Employment support allowance or ESA. Labour
introduced ESA as a replacement to Incapacity benefit. Incapacity was
a benefit which was in fact very difficult to get, there was a huge
form, then you had to allow the DWP to investigate your health, they
had access to your GP, hospital consultant your medical records. Even
with all that they then asked to to attend an examination from one of
their own doctors. The last Labour government decided that sick and
disabled people should be working. Of course many just aren't fit and
that the many workplaces just aren't suitable. Add to that the
prejudice that still exists. But the government brought in ESA anyway.
Most failed the test and were told they were fit for work. however 40%
of appeals were successful. Imagine if in the criminal justice system
40% of all convictions were overturned on appeal, there would be an
outcry. Part of the problem is the government has handed the system
over to a private company. ATOS origin.

Its going to get worse, the Tories have decided to scrap DLA
altogether and replace it with a new but much harder to get benefit,
this benefit won't be available to many disabled people. For instance
many people who use wheelchairs will be excluded because the
coalitions says that a wheelchair gives people mobility and that
should be taken into account when accessing the new benefit which is
to be called the Personal Independent Payment or PIP. Wheelchairs they
argue gives a disabled person independence and so they no longer need
disability payment. They argue that with discrimination laws,
improvements to transport and access to building the need for benefits
has lessened. They are wrong. Without DLA people like me will be come
housebound. We won't be able to afford cars, buses are still largely
inaccessible,as i;ve already mentioned many places of entertainment
and work are

Early Day Motion on the Disability Living Allowance Consultation

2011-01-25T18:38:00.000Z

The Broken of Britain is delighted to announce that an Early Day Motion (EDM) has been tabled in the House of Commons on the DLA reform consultation. EDM 1332 was tabled at our request by Hywel Williams MP (Arfon), who has a record of disability rights activism. The EDM reads as follows:

DISABILITY LIVING ALLOWANCE CONSULTATION
24.01.2011

Williams, Hywel

That this House expresses concern at the presentation of the case for reform of Disability Living Allowance (DLA) in the public consultation published on 6 December 2010; believes that the consultation incorrectly confuses correlation with causation between DLA claimants and employment levels or motivation to work; notes that DLA claimants tend to be older, less well-qualified, on benefits for longer and in poorer health than other disabled people; is of the opinion that many of the claims made in support of changing DLA are unsubstantiated in the consultation text or the supporting evidence; does not accept the argument that the identified problems with the present format of DLA are insoluble without the introduction of a costly new benefit; further believes that the presentation of the case for these reforms is highly flawed; and further expresses concern that the language used in the consultation may mislead readers when drawing conclusions from the evidence presented, and may therefore influence their response to the consultation.

Early Day Motion (EDM) is a colloquial term for a notice of motion given by a Member for which no date has been fixed for debate. EDMs exist to allow Members to put on record their opinion on a subject and canvass support for it from fellow Members. In effect, the primary function of an EDM is to form a kind of petition that MPs can sign.

This particular EDM must be signed by as many MPs as possible to get press attention. The Broken of Britain asks that you write to your MP urgin them to sign EDM 1332. A brief e-mail should suffice in this case:

Dear Member of Parliament,

Please sign EDM 1332: Disability Living Allowance Consultation, drawing attention to the flaws in the case for DLA reform published by the Department for Work and Pensions on the 6th of December, 2010, and expressing the House's concern that these flaws may influence the Public Consultation on the matter which closes on the 14th of February, 2011. DLA reform may well lead to real hardship and poverty for many disabled people, and it is important that you oppose any changes that may lead to such outcomes.

Yours sincerely,

This post originally appeared on The Broken of Britain blog

You know you've got CP when...

2011-01-24T13:00:00.004Z

Looking at a packet of medication and realising that you are potentially two tablets away from finishing a long term course of medication is very exciting.

(This entry is otherwise known as Emma's CP: It's not all about the wheelchair.)

I've been taking Terbinafine since September and I have an appt with my GP tomorrow morning to discuss whether it's too soon to take me off it or not. All week I've been counting down and suddenly today I'm like "hmmm maybe she won't take me off it yet."

Basically due to a combination of Onychomycosis (fungal infection) and CP I pretty much had no toenails in September. I hadn't had proper ones for years. I can't cut them myself and no one could cut them for me due to the infection. I kept catching them and ripping them off by accident meaning they got infected. One of my parents would have to come round and help me clean them properly and apply plasters and antiseptic etc. Sometimes blood would drip all over the floor when I wheeled to grab a towel or something and then to my bed so I could transfer and do the best to wrap it up until someone got her to do it properly. That would need to be cleaned up by whoever came.

I couldn't use the normal topical treatments because they require daily application and I couldn't reach to do it myself. I'd spoken to my GP a while ago and she gave me something which cleared it up but only the skin around my nails, not my nails. It wasn't the optimal treatment because of my CP. It was a spray (which actually said on there it wasn't for nails but she said it was worth a shot).

In August I went back, this time to a locum. This was at least a year later and my feet had gotten worse in the meantime. He took one look at my feet and declared all of my toenails to be completely destroyed. He took a sample (with great difficulty) and sent it off for testing. Apparently it was an extreme case but he needed the tests to prove that. I was given oral terbinafine and I've been taking it daily since September.

Terbinafine is a really strong drug and can cause liver problems. It's not been tested for really long term use I believe. I've been worried about taking it and would have preferred one of the lesser treatments but because of my CP it just couldn't be done. I have had liver function tests done part way through the course and they're fine.

And now I'm hopefully coming off of it tomorrow. If not now then in another month or two I'm sure. But most of all. I have toenails again. They aren't right but they are a lot healthier than they were. And I've only ripped them off two or three times since September. Considering I was doing that probably once a fortnight and occasionally once a week that's huge.

originally posted here

Tweets from Gentle Chaos

2011-01-24T09:00:00.000Z

Gentle Chaos tweeted this story over several tweets and a long period of time. Twitter is the only way she could participate but she wanted us to know she supported us. There were obviously, gaps timewise between the tweets.. With her permission I have gathered the tweets together in order and reposted therm here. Thank you for your support.

Feel to rough 2 post much but basically would b really stuck wthout DLA ....

Hav had health probs 4 sum time&become progressively more impaird Pattern is relapsin remittin Also had campylobacter in 2005....

Campylobacter on it's own nearly finished me So gd ol mix of stuff havin go @ my nervous system...

Treated v badly by NHS as an employee&forced 2 seek work elsewhere V hard 2 get support coz diagnosis initially unclear...

Was told dat I had M.E/CFS..I dont Was turned down repeatedly 4 DLA and otha forms of support Huge struggle financially...

Eventually worked out myself wot was goin on 2yrs ago Finally got sum help...

Not awarded higher mobility&higher care until I began havin seizures in July 2010...

DLA enables me 2 pay 4 support nt provided by Social services I couldnt afford 2 live independently or travel 2 work wthout it..

Personally&professionally I am horrified by the cuts proposed 2 DLA.

Yes big struggle Wot ppl may fail2realise is dat rates of DLA affect access2otha services V shortsighted govmnt.

DLA rates affect access 2 support fundin frm local councils 4 housin adaptations amongst otha things.

Ok as much as can manage 4 now on #DLA #ombh Am gettin a lot of seizure auras 2day so need 2 chill @brokenofbritain do use wot I've written.

Some time later she continued tweeting her story

Cuts 2 DLA will mean loss of personal independence 4 many people Very shortsighted thinking.

Without DLA in present form I personally couldnt live independently or travel 2 work.

DLA is4the extra cost of living wth disability It has 2 stretch a long way due 2 insufficient support frm health&social services.

Prior 2 my hospital admission in Oct 2010 I had been allocated a pathetic social services personal budget of £44 per week.

DLA funds were only way of ensurin I had sufficient help 2 go 2 work due 2 shortfall in social care funds

It took me 3 yrs 2 get DLA support Process complicated & v tiring 2 deal wth Am v scared will lose DLA

I'm an OT but faced discrimination in prev job due 2 the initially invis nature of condition&its variability.

Part of problem incorrect initial diagnosis My own knowledge&experience meant eventually I was able 2 work out wot was wrong.

I'd pretty much lost everything by the time 'correct' diagnosis found Despite this I found a new job&was just about paying bills.

Despite obvious probs managin at home&gettin about I still couldnt access DLA due 2 way criteria were interpreted until...

I started havin seizures Suddenly people started 2 take notice A fresh MRI scan picked up a brain problem prev missed...

.As well as other neuro probs I hav an arteriovenous malformation My lifestyle has2change again Wthout DLA I dnt kno wot I'd do

Wth DLA I can receive home support,work (a bit)&b part of the community.

Ok that's me. Please government do not cut DLA.

Share and Share Alike

2011-01-23T17:00:00.000Z

The last few days have been… incredible.

I’ve been reading many stories, via the ‘One Month Before Heartbreak’ blog, of disabled people and their carers. Terrible, heartrending stories of suffering and loss of dignity; of hardship and struggle.

Am I so unpleasant a person that I find these stories enjoyable? No. Of course not. But I can see – where, I suspect, politicians like David Cameron and Nick Clegg cannot – the metadata behind these blog posts and tweets and newspaper article comments. I can see the courage and the strength and the wry humour. I can see the defiance, the determination and the dignity-despite-it-all that underpins every one of the histories that I have read.

I write fairly frankly on this blog about the things that have happened to me and the issues my ill health is causing our family. And, although I try to remain upbeat, I do have days where my dejection is uncomfortably obvious. On my worst days, I don’t write about what I’m going through, because I don’t want to be self-pitying and because I already worry that I am too self-absorbed.

This caution comes from previous experiences on the web. I have a long history of participating in social media and I know that, no matter how eloquently you write, no matter how genuine and honest you are, there will always be someone who will misunderstand you. If you put yourself ‘out there’ you always run the risk of criticism, and that criticism can be painful. And if you put only part of yourself into words (because the rest is just too raw) then the potential for misunderstanding becomes even greater, as those observing you are not privy to the full picture and will make judgements in the absence of all the information required to do so fairly.

A case in point is provided by certain comments (now deleted) appended to this article in the Guardian. One commenter appeared to be advocating the euthanasia of damaged babies at birth. You’d think that impossible, wouldn’t you? Alas not. In response to a thought-provoking article by the mother of a disabled child, not all of the comments have been supportive or understanding.

And when the Daily Mail published their article about me, the same thing happened. I didn’t realise how deeply unpleasant the response was likely to be because I wasn’t aware of how my words had been subtly manipulated to trip all the switches of a certain mindset. I should have known better. I do now. And, as a result, for a long time after that fiasco, I hardly blogged at all, writing just a few posts each month instead of almost every day as I had been. I couldn’t face any more hostility.

But, although I am nervous, I am going to continue to write in this vein. I shall continue to share, and I shall continue to read the stories that others have shared. I’ve had some comments on my posts which have made me very glad that my words have touched others, many of whom are coping with far worse than I have to deal with. I am proud to be a part of this.

The cuts proposed by the government are nothing short of horrific. Big corporations get their tax bill waived*; ridiculous railway improvements get big budgets and – still! – disabled people are victimised, ignored and denied.

As I wrote in the article’s comments, I find that I want to stand with and for the people whose stories have touched my life in the last few days. If that means I open myself up to discomfiting criticism, so be it.

Originally posted here

We've talked about CHOICE now lets give everyone a VOICE

2011-01-23T13:13:00.000Z

And it’s happening. People are getting a voice and it feels very empowering. Twitter for the last few weeks has been alive with stories about real people – sad stories, heartening stories, occasionally funny stories. Social media is being used as a way of letting people have their say, not by writing to their MP or complaining to their local council (although obviously they can still do that) but directly with the world – anyone who is interested.

Well, I have been very interested. Firstly, I have followed the poignant Daughter Of An NHS Stroke Patient blog – the story of a brave woman whose mother has had a stroke. A passionate – and very well informed – cry for the best possible treatment with good communication, dignity and respect and all the other things a 21st century hospital should offer.

Then I have been following the ups and downs of the Redundant Public Servant, affectionately know as RPS. Here the realities of those “difficult decisions” that we hear about on the news, are played out through the lives of an ordinary family, as Dad’s hitherto secure job suddenly vanishes. In the context of real family life – Mrs RPS is pleased that he’s finally sorting some clutter and the daughter complains about her “pants” french test – we gain an insight into the harsh realities. Uncertainty, loss of income, loss of self esteem and feelings of rejection play out alongside hope and potential new opportunities.

And then today, a community based story. I loved this one. My 88 year old mother has been complaining that her local library is currently closed. It is being redeveloped and “will reopen with a new layout, new Police front desk services and the new self service facility”. She likes it the way it is. I have said that she’s lucky that, in the current climate, it’s not being permanently closed, but am concerned that it has cut off her daily outings during its three weeks refurbishment. A double whammy after being kept indoors (mainly by me!) during the cold and snow of December.

Anyway, I must tell her… yesterday’s Independent on Sunday carried a story of a Library emptied in bid to fight closure. In response to a Facebook campaign, “people in Stony Stratford, near Milton Keynes, Buckinghamshire, have spent the week withdrawing their maximum allowance of books in protest against council plans to close it as part of budget cuts”. The library shelves are now empty – 16,000 books withdrawn in just over a week.Wow!

I have written in my previous blogs about how I try to promote the personalisation agenda in health and social care and the fact that EVERYONE should have choice and control. But , similarly, just telling people has very little impact. By far the most powerful messages come from real stories – positive stories of people “having a life rather than a set of services”– perhaps for the first time in their lives after many years in institutions. DVDS of people with new skills, new independence, a better quality of life. Talking to Kevin Chettle, an amazing guy who never wanted to do that embroidery day after day in a day centre, but who found an artistic ability and went on to illustrate books and lecture in universities….

Over the weekend I became aware, via Twitter, of the “One month before heartbreak” appeal for people to write blogs as part of The Broken of Britain, Disabled People’s Campaign. This is explained and discussed very eloquently in the latest RPS blog, so I won’t go into detail. In short, real people tell their real stories about how the proposed cuts in Disabled Living Allowance will affect them and their real families.

Just as when we learn of a huge natural disaster on television, we say “how terrible!” but can’t really comprehend. Then the story of a single family wiped out makes us cry, because it moves from “statistics” to human suffering. With modern technology, we have the tools to be able to bypass spin, learn from individual perspectives and make our own judgements. Walk a mile in my shoes….

Originally posted

No Choice

2011-01-22T15:00:00.000Z

I've joined the blogging masses. I've had a Livejournal for years, and I'm on Twitter, but although I delve into disability in these, I've decided to create a blog purely for me, ME and all things disability.

This has been prompted by One Month Before Heartbreak, which has since Friday collected a whole swarm of blog posts and comments from disabled people about how the cuts - and the DLA 'reform' in specific - is going to affect them. I've been humbled, I've been shocked, I've realised anew that I'm not in this alone.

I have ME – Myalgic Encephalopathy. It’s sometimes known as Chronic Fatigue Syndrome, although that tends to include chronic fatigue, which is often a different thing entirely. ME is a neurological condition that is primarily known for causing extreme fatigue. My list of symptoms includes fatigue, post-exercise malaise, extremely poor temperature control, joint pain, lack of concentration, poor short term memory and insomnia. I also have vasovagal syncope, which means at any given moment when standing or walking I am liable to drop to the ground (we call them drop attacks), conscious but unable to move for several moments.

Looks like a nice list, doesn’t it? But what these things mean for me is that I sleep from maybe 1.30am to about 12 midday, if I’m lucky. It takes me about an hour to wake up because it takes a long time for my brain to engage, and for me to feel physically up to getting out of bed. I never ever have the energy to shower or bath more than once every 3 days (and I shower sitting on a shower stool, because standing for more than a few minutes is too tiring). I will spend most of the day very, very cold: my hands and feet particularly are so cold that they’ve been described as ice blocks. I can’t sit still for long because my knees and hips start to ache, but I can’t move about too much because I’m too tired. I can’t concentrate on reading or writing for long – at the moment I’m lucky to get a ten minute stretch, and I can only repeat that two or three times a day.

If I have to go out, I am taken out by my mother or my carer – and I don’t go out often. There’s all sorts of things to consider that able-bodied people take for granted, not just the sheer energy involved in walking about: noise and light stimuli, being unable to sit comfortably, being unable to control my temperature, having to interact with people who don’t know that if I trail off in the middle of a sentence it’s because I’m too tired to form the words. And of course there’s the drop attacks, which are dangerous for me – if it happens when I’m crossing a road, for example, or if I hit my head – but also make me the centre of attention, something that’s extremely uncomfortable. I do now have a wheelchair, and I use it for longer trips that are absolutely necessary – such as hospital visits where I know there’s endless corridors to navigate. I cannot propel myself, so I can never use the wheelchair to go out independently.

The most I can do in terms of cooking is heating up something: again, it’s too much energy, and too dangerous for me to be standing by the oven or the stove. It’s often a choice between heating up a soup or eating it – because even the motion of lifting a spoon to my mouth repeatedly is, on occasion, simply too much for me.

For me, ME is not only an illness it is a disability. I am disabled. I spend the majority of my life confined to my bed or to the only chair I can get comfortable in, an armchair. I do not look disabled – in fact unless I have a drop attack, the only people to whom I even look ill are my closest friends and family. My mother is able to look at me and know that I’ve overdone it – she says I have a grey, ghost-like look. But a stranger on the street? A doctor I don’t know? No. And of course when I am feeling a little better, that’s when people see me – on the days when I feel well enough to attempt the short walk to the post box at the end of the road, perhaps the rare occasion when my mother or my carer takes me to the cinema, or if someone pops in for a cup of tea and I brighten up. Of course I do – I’m seeing someone other than my mother or carer! They don’t see what happens afterwards: the way I literally cannot speak, cannot stand because my legs are too wobbly, the hours I spend curled up unable to communicate with the world.

My mother is also disabled – again, through debilitating ill health. She has asthma and bronchiectasis, which leads to frequent chest infections (she usually winds up in hospital at least once per winter). Through misdiagnosis she now has a suppressed adrenal gland, meaning she’s steroid-dependent. This has led to weight gain and advanced osteoporosis. Six years ago she broke her shoulder so badly it needed replacing; four years ago she broke her foot, and after six weeks in a boot she was discharged. Three years later, after finally getting someone to take it seriously enough to x-ray, she was told the bone had never healed, and there was some necrosis in the break. She’s since had an operation to fuse the talo-navicular joint, which was surgically a success but has led to problems walking and no reduction in pain. While recovering from that surgery she had a bilateral pulmonary embolism; she also, at some point that autumn (2009) gained a crush fracture in a vertebra of her spine. Again in that autumn, one of her lungs partially collapsed – we still don’t know why, but it is recovering slightly. That winter she had e-coli in her lungs and spent most of the winter in and out of hospital. She’s finally been seen by the pain clinic and is now more pain-free than she’s been for years, but as with me, we’re taking it one day at a time.

She also has severe, unstable depression, and a diagnosis of Bipolar II – primarily because she goes psychotic on high-dose steroids. Which is unfortunate, since that’s one of the primary ways of treating her lungs…

We both now get help from social services; Mum gets three hours care a week, I get eight and half. Since we both employ very hard-working sixth form students, we can actually stretch the money a little further. Without it we would sink and drown. We ‘share’ the care – there’s no point putting on a load of my laundry if hers is sitting in the laundry basket, and similarly if the kettle going on we might as well both be made a cup of tea! But we know, and social services know, that for example when I get worse, Mum needs more help because I’m unable to do things for her; the same is true the other way around. And we tire ourselves out trying to help each other.

Benefits. Oh, benefits. The point of this wonderful campaign run by One Month Before Heartbreak. Disability Living Allowance. An allowance paid to disabled people to enable them to live. Not an out-of-work benefit, not a means-tested benefit. It is 'graded' according to need (although arguably there should be more rates, not fewer). I get higher rate mobility and medium rate care; Mum gets higher rate of both components. We use it to pay for the extra heating I need and for the car that we both rely on. I use it to buy extra clothing, because my temperature control is rubbish so I can be freezing cold in the middle of summer, or sweating hot in the middle of winter. I use it to pay for the delivery costs for the times when I literally cannot get out of the house for shopping. I use it for taxis, for the rare occasions when neither my mother nor my carer can drive me somewhere - and I mean to things like the GP surgery, or the hospital.

We are, at the moment, basically living off it. And when (I'm positive - when not if!) Mum finds work again, DLA is what will enable her to work. Because without it we can't run a car, and Mum can't walk more than a few feet without pain. She will probably end up needing a wheelchair, and DLA will have to stretch to paying for an electric wheelchair - a manual is no good for her, she has an artificial shoulder that doesn't work properly. Without DLA she will end up all but housebound, and unable to work. I'll end up housebound and still unable to work.

She’s doing voluntary work at the moment, in her skills area – IT project management. She’s worked primarily in the public sector and there’s almost nothing available there now; she doesn’t have enough private sector work to get a contract there, not when her health is so precarious. She’s looking for work, sending off CVs and calling agencies every day, but it’s hard, and she gets very depressed about it. She’s claimed ESA, is in the assessment phase, but wants to work. There’s no reason she shouldn’t work – with reasonable adjustments. Ha. But the voluntary organisation is making those adjustments. They’ve moved the whole team to a ground-floor office, they’ve put a disabled parking space in just for her, and they are understanding if she has to take an afternoon off for a hospital appointment. She’s doing two days a week, and they’re getting a bloody good deal out of her, frankly.

Me? I would love to work. I've been known to say I would literally kill to work. But the truth is, to work - at least now and for the foreseeable future - would kill me. I would exhaust myself to the point of collapse, and then a cold would come around, and what would make other people sniffly and miserable for a day or two would knock me out completely for three or four weeks. And who would want me? I can't promise to be able to work at the same time every day or even every week. And I'd be a health and safety nightmare, with the fainting, which happens whenever I'm standing or walking between two and eight times a day.

But that's the point, isn't it? DLA isn't an out-of-work benefit. DLA is for all qualifying disabled people, to help them (us) with the additional costs of being disabled, no matter what those costs are.

So when the government turns around and says 'sorry, but we think you're unsustainable, and you're not really disabled anyway', I get a little upset. Okay, a lot upset. In fact I've been so upset that look, I've gone and blogged about how important DLA is to me. Without it I lose the ground I've fought so hard to gain. It's not easy having ME (not that I think it's easy having any condition or disability, I hasten to add). I've been told so many times that it's all in my head, that I'd get better if I exercised, that surely I'm exaggerating? It has taken me years to claim for myself the illness and the label 'disabled'. I don't like it, of course I don't, but for me it has become part of how I cope and live with myself.

I'm not a scrounger, or someone who's chosen this: I'm someone who's become disabled through a debilitating and misunderstood health condition. My friends and family know that I would do almost anything to be well enough to work. But because I am too ill - too disabled - to work, I am forced to live on the benefits provided by the Welfare State. I spend weeks - and I do mean weeks - filling in DLA forms and IB forms. When I'm migrated onto ESA (sometime this year) I am fully aware that I am going to once again face an enormous battle to get put into the Support Group, a battle that will probably end up ruining what little health I'm managing to regain through resting, pacing, and resting some more.

My mother has paid tax and national insurance all her life; when she found out about the DLA 'reform' her precarious mental health went down the toilet and she wanted to kill herself. And yet the GP, the consultants, her social workers all agree that she needs the DLA at the rates she's getting, and the DWP decision makers would have to be off their rockers to take her off it.

By now I'm sure I'm not making much sense; this didn't start out as a good day anyway (bad night with night sweats, meaning I woke up knowing it was going to have to be a shower day, which usually means everything else just doesn't happen). Others have spoken more eloquently, or have used facts and figures to show why the government is basically abandoning disabled people to rot and starve in their own homes. All I can do is talk about me, and my mother. She hates being reliant on benefits; so do I. We, like thousands of others, have no choice.

Originally posted here

Broken Britain, Broken People: Less Than One Month Before Heartbreak

2011-01-22T13:00:00.001Z

BRITAIN IS BROKEN. Broken from top to bottom, by the people at the top trampling over the people at the bottom. Broken by a government so obsessed with its programme of cuts that they’ve become blind to the effect those cuts are having on people’s lives. Stampeding cattle panicked by the wolves of their predecessors’ incompetence, trampling the weak, the disabled and the vulnerable underfoot as they charge headlong towards only God knows where, rewarding failed bankers and ignoring the cries of the poor.

We are a nation betrayed, betrayed by those we pay to serve us. Taxed when we earn, taxed when we spend, taxed when we travel, taxed when we die — and for some that death may well come sooner than it should, death by a thousand cuts from an axe-wielding government which takes and takes … a voracious leech, sucking the very life from its host, the British people…

Purple Noise - The beginning of the end

I suppose I could go on with the purple prose, but instead I’ll give you another pointer to Purple Noise,Ali Quant‘s blog, where Ali describes the living nightmare of battling with mental illness whilst contending with the changes to Britain’s benefits system: The beginning of the end. Perhaps you’ve already read it after my earlier post: then go read it again; if you haven’t read it, prepare to be shaken; and when you’ve been shaken, I hope you’ll be stirred to action. Because Ali is just one amongst many for whom this government’s mandatory reassessment for benefits entitlement is simply too much to bear, one amongst many who have a plan to ‘delete’ themselves, as Ali has expressed it: to commit suicide rather than face the horror of having the minutiae of their lives (re)examined by people whose only interest is in number crunching and balancing the books of a failed administration.

Let’s get this straight: mental illness is real; and it debilitates. It prevents people from working not because they are unwilling to work but, as much as anything, because many employers are unwilling, unable or are simply ill-equipped to deal with the effects of mental illness in their workforce (technically, of course, employers cannot discriminate; but how is a mentally ill person going to fight suspected discrimination?). It’s not the mentally ill person’s fault that they’re unable to work any more than it’s any other ill person’s fault; and contrary to some perceptions, mentally ill people are not malingerers or skivers. Diseases of the mind are every bit as real as diseases of the body, and just as physical illness often affects our ability to think, mental illness often affects the ability to do things, even basic things such as wash yourself, get dressed or respond to a hug. Body and mind, mind and body: the two cannot be separated.

Mentally ill people need their Disability Living Allowance (DLA) every bit as much as people whose illnesses or disabilities are physically plain to see. It’s not something they should have to fight for any more than we’d expect someone in a wheelchair to stand up and fight for their wheelchair. But in just three weeks’ time, that’s exactly what’s going to be expected of them as thegovernment’s consultation about DLA reform comes to an end halfway through February: on 14th February 2011, Valentines Day, to be precise. Courtesy of the UK Government, a day for lovers to celebrate has become a day of despair, a day of fear, darkness and heartbreak for thousands of people. It seems that as a nation we can afford to maintain a nuclear arsenal big enough to ravage the planet but we can’t — or rather, under the current regime, won’t — commit to providing for some of our most vulnerable people.

So what can ordinary people like you and me do? First, it seems to me, we need to make our views known to the government: although the consultation is aimed primarily at disability organisations and disabled people, the DWP have indicated that they would like to hear from anybody who is interested. Then let’s let them know! Let’s let them know that we’re not merely “interested” — we’re outraged! Outraged at the trauma this consultation is causing amongstthe Broken of Britain, amongst Britain’s disabled people. Let’s let them know that they cannot, must not, discriminate like this, that we stand in solidarity with our disabled brothers and sisters!

Another example of the trauma: DLA, Danni, and Me – By Vicky Biggs.

Second: if you, like me, don’t trust this government to listen, we need to start setting up our own safety nets for people such as Ali who may drop out of the benefits system. That’s what my ’200 People’ campaign is about, providing a safety net, in this case specifically for mentally ill people. I say ‘my’ campaign but I am thrilled to say that it is no longer mine: I kicked it off but others have seized the initiative and we’re now well on the way to setting up an official organisation, name to be announced shortly.

Will you stand with us? Will you stand with some of Britain’s most broken people? Will you join me in enabling the mentally ill community, in helping to erase the stigma of mental illness, in what is, for many, quite literally a fight for life?

The time is now: if you’re on facebook, please join our facebook group today. Although the group is still called ’200 People to Save Ali Quant’ its remit has grown and it should be renamed and given a new description within the next few days: please watch this space for more info.

Thank you.

Originally posted here

Changes Bristol

2011-01-22T11:00:00.000Z

The news of the benefit cuts has been somewhat unavoidable recently (unless you.ve been living with your head in a bucket and believe me, I am tempted to start...). “75% of people on disability benefits are able to work!” scream the Daily Mail, forgetting to mention that according to the current testing methods, if you are able to pick up an empty kettle you are apparently able to hold down a full-time job... Those who are going to be hit hardest seem to be those who are less capable of defending themselves, with the impending measures to cut Disability Living Allowance and the enforced testing of those currently receiving Incapacity Benefit and ESA. As I am someone who has previously applied for ESA (and been rejected, no surprise there...) as well as having many friends who are unwell and unable to work, the news has not been pleasant reading in the slightest.

Furthermore to the bleak outlook peddled by the news media, I have also been disturbed by the accounts of sheer terror, despair and helplessness as shown on mental health websites and personal blogs. I recently read an account written by a woman who is so traumatised by the thought of losing her benefits and therefore her home, that she has stated she will end her life should it happen. (See here, but I will warn you, it is harrowing reading). I was so shocked and appalled that I posted the link to my Facebook in the hope that maybe someone would share my feelings.

Unfortunately, the first response I got was from a friend of a friend, and here it is: “Sorry to play the Devils Advocate but this is Darwins Law at work. It may not be pretty but it is true. In times of hardship the strong will prosper and the weak....”

The ellipses are used to avoid stating what he obviously meant: that the “weak” will die as a result of what.s happening, and this is the only way things could be. Happily, he did not go unchallenged and I was reminded of why he is only a friend of a friend (and enjoyed some very pleasing daydreams of him turning up at a Changes meeting and being pelted with coffee mugs and goal books).

I couldn.t avoid thinking about the incident, however, and how many people perceive those with mental health difficulties. I know how hard it is to live in battle with your own mind, but what makes it so much harder is the lack of understanding from others: the "pull your socks up" attitude, the discomfort, neglect and even scorn that comes from others after mentioning you live with a mental health problem. This all leads to a massive amount of misunderstanding which penetrates our society from the low level insults from someone you don‟t know, to the people at the top who make the decisions about how you live your life. If we do not challenge those who see us as “weak” or “scrounging”, then we risk the attitude continuing to the point where lives will be lost through ignorance.

It is frightening to contemplate what will happen in the next year, but there is hope. The backlash against the decisions has already been enormous. You can see its progress by following these blogs: Where‟s the Benefit?, The Broken of Britain, the superbly named Benefit Scrounging Scum and One Month Before Heartbreak, a response to the proposed consultation about DLA reform which is happening on the 14th February. The collected voices are heartening to read: there is a lot of anger, passion and well-reasoned arguments. The feeling is this: If the people at the top were counting on people being too “weak” to fight back, they're in for a surprise.

This article originally appeared in the Changes Bristol newsletter and is reposted with permission

The Cutting Edge

2011-01-22T09:00:00.002Z

Yesterday, I added a few comments to this Guardian article. This morning, I tweeted the link to that article, and Keris Stainton retweeted it and blogged about it too.

As far as the proposed cuts to DLA are concerned, I am largely an ostrich. I don’t get DLA. I did once try to apply for it, out of desperation and panic, and I’m apparently in the system to have my claim reconsidered on appeal, although I’ve not heard – from either the Benefits Agency or the Welfare Rights worker who is supporting me – for some time. The truth is that, when the appeal date does finally come through, I may decide to cancel it. Such is my present intention, but I am acceding to my husband’s request that we wait and see how I am at that point.

Because, slowly but surely, things are getting worse for me, and it is impacting upon his ability to work and earn enough to support us all. But I have talked to people who have been through this process and I know how humiliating and ghastly it is. Even with support, I am not sure that I can face it. I’m not sure I can talk openly to hostile strangers about the sometimes degrading, always distressing, things I have to go through.

My doctor believes I should receive DLA. So does my occupational therapist. So does my support worker (Welfare Rights is a subdivision of Social Services). I don’t believe it – not because I can’t accept that I am disabled enough to need practical help, but because I have read many stories of people far, far worse off than I am, and I simply cannot see, even though I clearly do fall within the criteria for the receipt of DLA, how I could possibly accept it when those others are denied it.

Read the One Month Before Heartbreak website and you will quickly see what I mean.

I can’t solve the dilemma in my heart and mind, so I stick my head in the sand. Truthfully, I am hoping that, by some miracle, I will start to earn enough money for us to manage without it, so that I can avoid the issue completely.

Because, let’s say I do get awarded DLA… I would feel obliged to send it back in protest – at the pending cuts; at the whole governmental attitude to disabled people; at the injustice of the entire welfare system. But how could I do that to my husband? He works so hard every single day and then has to come home and pick up the pieces of the things I haven’t been able to do; he has to care for me and our children when I am not well enough to care for myself.

It’s just not something I want to think about.

But then there’s the whole ‘experience’ of living on/with benefits. I used to get incapacity benefit. I decided to go back to work, even though I was technically too ill to do so, and it proved disastrous. But it taught me what I can do – work freelance from home – and I am still willing to do that even now. I don’t usually describe myself as brave, but it has taken courage and determination to persist through all of this. And yet the Daily Mail saw fit to portray me as a wilful scrounger; a leech; a criminal.

Which is how so many disabled people are portrayed these days. Never mind the fact that, even if they wanted to work, the playing field is not level and there is little support available to them to get and keep a job.

If I were to receive DLA, I’d be forever looking over my shoulder. I don’t, for example, customarily go anywhere alone. The last time I tried to travel further than my home town was over six months ago and it was such a distressing experience that I swore I would never do it again. But there are a few places where I feel safe, because I know the staff and where the toilets (to hide in) are. Would I feel that I have to check that I’m not observed before going to one of these places without my usual assistance (in the form of one of my older children)?

Yes.

Yes, I would. That’s how I felt when receiving incapacity benefit. Because people assume that the tiniest fragment of normality means that your life is normal. And then they judge you. Or they try and report you.

My life is not normal. I wish it were. But you can’t necessarily see that if you should happen to bump into me, one daughter or the other hovering close by.

To a certain extent, my children are my carers – even, for God’s sake – my eight-year-old son. Their lives are not normal either. We are trying to survive, not to live an extravagant or pampered existence. I would rather have support in finding work than DLA, but things are as they are and the stark fact is that no-one wants to employ an incapacitated homeworker when they can have a fully-functional office worker instead. Even if the homeworker is more talented/dedicated/hardworking/focussed etc etc etc. (Yes, I’m making an assumption here, I know, but forgive me the frustration that has lead to it.)

I wrote yesterday that I feel as if the government is merely reflecting public enmity and disgust towards the disabled. I would like to apologise to all the lovely people who support me every day for that remark because, speaking in anger, I failed to be specific enough in making it. I should have recognised that there are many, many people who do not read the Daily Mail and who are sympathetic and concerned and justly horrified by what’s going on. But I do stand by the essence of my comment – which is that our current society tends to want to believe that all disabled people are scroungers who deserve to have the pathetically threadbare rug of support that is available to them dragged out from under their feet. Or is that just an illusion created by the vindictive, ill-informed, often illiterate commenters on the Daily Mail’s website?

No, the DLA cuts will not affect me. But the government’s attack on the less wealthy and fortunate – the removal of EMA; the rise in tuition fees; the benefits cuts; the restriction of child benefit – these things all tell me that as a woman; as a mother; as a low-earner; as a person with disabilities; I am inconsequential, unimportant, insignificant.

But I am not. And if I feel disturbed and victimised and frustrated and infuriated – and I do! – then God alone knows how it must feel to those without all the blessings that I have. My heart in particular goes out to Riven, the mother who has been forced into contemplating the unthinkable.

So, please… Tweet this post – or another of the links above. Add your thoughts to the Guardian article. Email David Cameron (camerond@parliament.uk – or – privateoffice@no10.x.gsi.gov.uk) with your opinion. Whatever you do, please just do something.

Originally posted here

DLA Reform

2011-01-21T17:00:00.000Z

My son Theo is 6. He had meningitis at four months and was left with complex special needs. He will never be independent and needs 24 hour care. I have given up my career to be his main carer and although I manage to teach yoga for a couple of hours a week I have realized that I will never have a "proper job" again. I have to be available at short notice at all times in case Theo has a fit or is ill and has to come home from school. I have 12 hours of care a week but if my carers or their children are ill I still have to step into the breach. We have been waiting for over a year for the promised overnight respite (one night a month) and we rarely have an unbroken nights sleep. After six years of unrelenting care we are breaking, just like Riven Vincent, we cannot go on like this. If they take way or reduce our DLA (which we only got after a long fight) we will struggle to pay the bills. I know that we are not the worst off by far, at least we have managed to stay together so far and my husband still has a job. We are trying our hardest and I am so angry at this Government and David Cameron in particular for abandoning us. He should at least have more compassion.

Matched Funding

2011-01-21T15:00:00.000Z

Yes, those two words rear their ugly head. For those who don't know exactly what it means basically it's a situation where the local authorities will provide money for an activity so long as that amount is matched by other parties (such as charities etc).

I went to a meeting at the local mental health unit on Friday about a music group. There is a small local studio and they run courses on music production and such like. Now we have knowledge of this studio as Jr attended a short course there last year and I can say, hand on heart, that all the people involved at the studio could not possibly have done a better job of making nervous people comfortable and happy. Frankly the care and love these 'amateurs' showed puts many people who actually work in mental health to shame but that's another issue.

So the situation is this – there is funding for a 6-8 week course if matching funding for another similar period can be arranged. This involves the people wanting to do the course applying for various funding and waiting to see what happens, all for a few extra weeks. Whilst there will no doubt be learning through this process the people involved are naturally wary of what they will have to do and rather frightened of getting it wrong. All this stress for 8 weeks extra.

We're not talking about a lot of money here (£100-£150 pw all in) and I think it would be fantastic if this group could be turned into a permanent thing as it will be of major help to all involved, so here is my idea...

Do you know anyone involved with music or anything related who might like to fund the group? I know times are very hard and there's not really much on offer in return regarding advertising or anything as the conditions of the people involved mean it would be rather private. I'm not to proud to beg for these guys and that is basically what this post is. Surely someone, somewhere would be willing and able to help these youngsters for such a comparatively paltry sum that could make such a difference. This is completely legitimate, and the group is being set up with the assistance of the local mental health unit and will be arranged in a legal and proper way. I'm no accountant but surely someone could do it in a 'tax efficient' way, at least you'd know that every penny was being used for a good cause. Or if anyone has any ideas of groups that might be approachable regarding this please make a comment to let me know.

Any help at all with this would be incredibly appreciated and make a genuine difference to some of the most vulnerable members of our society.

xxx

originally posted here

Unacceptable Changes

2011-01-21T13:00:00.000Z

Dear Sir / Madam,
I write both as a carer and a sufferer in my own right. I will explain about my boyfriend's case first. His name is Justin and he has epilepsy, asthma, eczema and pancreatitis. In October 2010 the DLA team decided that he was no longer eligable for the middle rate care and lower rate mobility benefit he had been getting for years even though there had not been a change in his conditions and that it would be stopped in December 2010 (just before xmas, brilliant). So we had to appeal.
We explained that Justin's fits (he has gran mal and simple partial seizures) come on without warning and that he loses his memory for anything up to an hour afterwards. Because of this he has to have constant supervision as what could happen if he was on his own when he had a seizure doesn't bear thinking about. An example of what happens after one of his simple partial seizures happened when we went to Wellsbourne market a few months ago. It is a very large market and we had got to the end (which took just over an hour), on the way round Justin bought several items of clothing, he had a simple partial seizure and got very scared and disorientated, then lost his memory. He forgot everything he had bought and didnt know where he was or remember how he even got there! He had lost about 2 hours worth of memory in about 15 minutes! Just imagine what that would have been like if he would have been on his own!
Sometimes he even forgets where he lives!
Just because he doesnt go to his doctor after every fit they told the DLA that his seizures were controlled by his medication which is rubbish because he has gran mal seizures roughly every month and simple partial seizures every 3 or 4 days. He is seeing a neurology consultant who ordered MRI and EEG scans for Justin and also is changing his medication because he is still fitting and also because the Epilim he has been on for years can cause pancreatitis and he wasnt informed of this. Even though it didnt cause it in Justin's case, it surely couldnt have been helping being on medication that could make the condition worse?
Anyway, we asked that the DLA team contact his consultant to confirm what we had told them and they sent a form to him in early november 2010. Because his consultant didnt send the form straight back to them they made a decision without it and said that Justin could have lower rate care and no mobility, again they said that his fits were controlled by medication, that he could reasonably prevent any danger to himself and that he only needed an hour's assistance a day and none at night! So, we have to appeal yet again for the consultants form to be taken into consideration! Total lunacy!
If his benefits are totally stopped that would have devastating effects on us as I would no longer be able to be his carer and I would have to claim Jobseekers allowance as I am only allowed on his Income Support claim if I continue to be his carer!
And then we come to my plight. I suffer from M.E., depression and anxiety. I was claiming Incapacity Beneifit but some months ago it was decided that I no longer qualified for it after an interview that I had with regards to my benefit. Because I went to the interview smartly dressed, on my own and could interact with the interviewer it all went against me and it deemed me exempt from entitlement. All because I didnt play up my illness and I was having a better day. Surely these people know that the conditions vary from day to day, if not hour to hour?! I appealed, it was rejected. The stress was too much for me (as it makes my conditions worse) so I gave up on going to tribunal. So, to round it up, if I can no longer financially be Justin's carer I can not stay on his claim and I can not go back on Incapacity benefit, which only leaves Jobseekers allowance. That would mean that I would have to give up being Justin's carer as I would have to get a job, but we would not be able to pay for another carer so where would that leave Justin?
Just because of fraudulent claimers, the likes of Justin, myself and other innocent people with disabilities have to suffer with stupid decisions made by DLA decision makers.
STOP IT NOW!!!!!!!!!!!! PLEASE!!!!!!!!!!!!!!!!

Sue's Story

2011-01-21T11:00:00.001Z

My daughter and I are in receipt of DLA and without it I despair of the future. Dramatic words maybe, but DLA has given me back some quality of life and enabled me to do the best I can in bringing up my child. I have a long term chronic health condition which fluctuates daily. I went to university, obtained professional qualifications as I had a life plan. Unfortunately life had other plans for me! I have tried to work on and off and indeed have good references re my ability, BUT I am regularly unable to be in work because of bad health, with regular hospital admissions. I have tried working P/T but am unreliable due to my unpredictable condition and the stress of all this impacted on my mental health as well. My late partner died from diabetes, leaving me to bring up our 8yr old daughter on my own. I made the difficult decision to live on benefits supplemented with my DLA. My daughter was later diagnosed with diabetes and our world crumbled. We were scared of the future, but she was also awarded DLA and at least financially we were better prepared. DLA has enabled us to have a quality of life rather than struggling on basic benefits. I can use my DLA award to pay for alternative treatments, use a car, pay for a special diet,adapt my home,rest whilst she is at school,support her in her homework.. support her in becoming a future, employable citizen......In short it has allowed us to bear the extra costs of living with disabilities

Since this reforms were announced I have had little sleep worrying about the future, worrying how I will manage, worrying how I will find work with my employment record, how I will stay out of hospital without my special diet and supportive treatments, will I have to go through more medicals to prove I am entitled, how the new medicals test someone with a fluctuating health condition and wondering why I have to go through this all again. I have been in receipt of DLA for 16yrs, reapplying every 5 yrs, been reinterviewed under Labour's Benefit Integrirty Review programme, ben examined by a DLA doctor, been finally awarded it indefinitely 7yrs ago and now having to go through it all again. I understand we all have to shoulder the burden of these cuts, but to live in poverty and fear feels to hard a burden,

Disability... or advantage?

2011-01-21T09:00:00.001Z

I have just read a comment, stunning in its insensitivity, ignorance and insult, that was posted on another blog. The blog owner, who also found it offensive, has removed it, but I read it in email.

The comment essentially asserted that disabled people are – to an employer (a publisher, in fact) at least – a potential embarrassment, and should stand aside and allow those capable of doing all aspects of a job without difficulty to go ahead and do so. The writer recognised the harshness of his own words, but declared that they simply reflected the way things are and decreed that for a disabled person to ignore these facts of life was essentially selfish.

Ah. So those of us less able than most are not to be admired for striving to overcome our incapacities? No. We should be ashamed for being audacious enough to try and compete with the healthy and/or able-bodied. How dare we? Do we not realise the injustice we inflict on those who are fully capable by being determined enough to try and earn a living? We should not exert ourselves so.

You know, I’m rather proud of my extensive vocabulary. But the words most pertinent in response to comments like this really aren’t ones I care to use in public. Thus limited, I will nevertheless essay a coherent reply. Given that the original blog post in question pertained to publishing and to aspiring authors, and seeing as writing is indeed what I – disgracefully disabled though I might be – do, I shall use that same context. But please note that my view is actually wider than that.

I do not usually use the word ‘disabled’ to describe myself. Yes, my health problems reduce my capability, my quality of life and, to a lesser degree, my mobility. But, given that I am so much luckier than many people I know, I don’t feel that the word applies to me. I prefer to consider myself incapacitated or, perhaps, limited. Still, technically, I am disabled – I am not as able as is normal for a person of my age and sex. The Disability Discrimination Act’s definition of disability can be seen here.

There was a prolonged period in my life when I was not able to work. It was a very difficult time and, coming out of it, I discovered that having a job made all the difference; that work improved my self-esteem and gave me an incentive to cope that I had not previously had. Since then, I have been determined to carve a career for myself despite everything and have worked incredibly hard to do so. Incredibly hard.

I’ve not been entirely successful, and there have been times when I’ve wanted to give up. Aware of my limitations, I’ve not sought to undertake anything I know I can’t manage (some readers may recall my struggle to decide whether to try and apply for jobs outside of my home and the decision my husband and I came to that I should not, as to do so would have been unfair both to me and to any employer). I’ve not baulked at doing work for which I am over-qualified; I’ve not been dishonest with any potential employer or client about my abilities.

And through it all – whilst pitching for writing work, applying for community management jobs, doing some PA tasks, exploring any and all avenues of alternative employment (through Remploy and Leonard Cheshire and other charities who support the disabled) – I’ve carried on writing my fiction. I’ve set myself deadlines and, by-and-large, stuck to them, working, at times, at an insane pace, simply because I’ve committed myself to doing so. I’ve ignored the fact that I don’t get paid for all the effort that I put in, and carried on regardless. I’ve tried and tried and tried again, learning so much along the way about publishing and writing. Although I’ve wanted to, I have never given up – demonstrating, some might say, ridiculous perserverence, even in times when I’ve been unable to believe in myself any longer and have operated on instinct rather than in faith.

All writers have to do this, don’t they? But for me, it is harder than it is for many. For me, getting up in the morning is hard, let alone managing to take care of my children, just about keep on top of the laundry, and prevent the state of the house degenerating from merely untidy to genuinely filthy! Not only that, but the loss of my income as a result of my illness means that my husband is not usually here to help me – he’ll be working Sunday this week as well as Saturday; he rarely gets in before seven in the evening and often comes home much later – because he is working as hard as he can to support us.

So how does all this answer Mr Unpleasant’s comments about how I should let the able-bodied and fully capable take the shots at the publishing deal I want so badly?

Simples! What I’ve experienced gives me an advantage.

I’m accustomed to having to work harder than most to prove myself. I am used to dealing with prejudice and overcoming it. My experiences in life so far have given me a determination that is as invisible as the health problems that incapacitate me, and equally a part of my day-to-day life. I’m aware of my limitations (many people are not because they have never been tested) and I know how to work around them. I can communicate in many forms – not only do I acquit myself well face-to-face, but I know the art of email (and believe me, good email communication IS an art form) and I’m even au fait with radio broadcasting, having worked with a local radio station over the last couple of years, providing them with live comment on parenting and other issues with which I am familiar.

All of these attributes are ones that have developed as a direct result of my disability.

Any publisher who takes me on may find themselves having to work with me to pace any in-person publicity efforts, yes. I can’t deny that. But, in return, they’ll get an author who isn’t fazed at working the online angle; who doesn’t get overly nervous before a radio interview; who works bloody, bloody hard and never, ever lets people down. An author who won’t give in or give up because she’s ill or in pain; who doesn’t judge and isn’t afraid to be different or interesting. They’ll get an author whose life experiences are wide and varied; who is a wife, a mother, a fighter and, yes, a disabled person. An author who is defiant, determined, capable, unstoppable – but also compassionate, understanding, genuine, honest. And, oh yes, insomniac enough to pull rabbits out of hats when it comes to meeting tough deadlines.

I rather think that’s a fair trade.

And then there’s my writing. All the things I’ve experienced, good and bad, influence it – and that can only be for the better, right? The more we learn, even about the dark side of life, the more we can write authoritative, compelling and realistic fiction. I understand a great deal more now than I did when I was well and able. Especially about intolerance, bigotry and discrimination.

Perhaps I ought to have treated the comment I read with appropriate contempt and disdain. It wasn’t worthy of a response but I felt compelled to write one. Disabled people have to live with so much humiliation and prejudice – and if it’s hard for me, then how must it be for someone truly disabled and, say, in a wheelchair? – that allowing another little piece of nastiness to go by unchallenged seemed wrong to me.

People who can’t work and claim benefits are criticised as ‘spongers’ or ‘scroungers’. And yet, when disabled people do try and work, within whatever limits they have, they’re criticised for that, too. This is not the first time I’ve seen it – I recently left a comment on a news item about fighting to build a business given all my circumstances, and a very unkind comment was posted in return. It haunted me for days.

I (we) can’t win!

Except that I intend to. Age and incapacity notwithstanding, I will be published.

Watch me!

Originally posted here

Hiding In Plain Sight

2011-01-20T17:00:00.000Z

I wrote this piece some time ago. Today, I have found the courage to post it:

It’s a strange claim for a size twenty-four woman to make: that I feel invisible.

And yet it’s true.

People see my size, certainly, and often mock me for it. But it’s the things that they don’t see that make me who I truly am.

Should you meet me in the street, you might notice that my hair, although long, is thin and straggly, and that strips of my scalp are visible unless I have had the time to carefully arrange it on my head. It falls out because of profound hypothyroidism.

What you will never see are the tears I shed in the shower as more precious strands come away in my hands and are washed down the drain forever; the tears I cry whilst I try to decide if the time has yet come to shave my head and be done with it.

You might also wonder – were you to meet me – if I might be pregnant. As a result of PCOS, most of my excess weight is disproportionately accumulated on my abdomen, giving that impression. Invisible to the human eye, though, is the deep joy and satisfaction I feel at having defied that particular disease to have no less than four beautiful children, and the silly longing for another that plagues me but can never be fulfilled.

No-one can see my surgical scars; they are always covered by my clothes. But, sometimes, when I am in a lot of pain, my gait alters as I favour my right side where the pain is less. I often wonder if other people notice this; if they laugh to themselves at the fat woman who can’t seem to walk straight, or muse as to whether I’m drunk as I wander round Sainsburys. The damage caused to me during a third bout of major surgery is only visible on a CT scan, but its impact upon my life every day is something that, with varying degrees of success, I feel I must always try to conceal.

But the biggest invisibility of all is my fight to maintain my mental health; a battle which began as I was first prescribed anti-depressants (instead of replacement thyroid hormones) aged only seventeen, and which continued as I struggled with symptoms of post-traumatic stress disorder after the horrific birth of my second child. And all my best efforts failed when, whilst I was pregnant with my fourth child, appalling and unremitting nausea and vertigo provided a continual reminder of the misery of my second pregnancy and the terror with which it ended.

That’s when I had a nervous breakdown – at around seven months pregnant – and when the obstetric team caring for me felt I would be better off if admitted to a psychiatric ward and separated from my three little girls and my husband.

It took the support of a wonderful midwife, a consultant psychiatrist, my fantastic GPs and a community psychiatric nurse to enable me to stay at home and, even so, it was only possible thanks also to the efforts of my father and my mother-in-law to help me.

This aspect of my life is so invisible that I only recently felt able to write the words ‘nervous breakdown’ in an email to a friend whom I have known for over thirty years.

I don’t think of myself as particularly stoic. Far from it – I do a lot of crying and I indulge in the occasional rant. But I don’t usually tell the people around me how ill I’m feeling or how much pain I’m in, because there’s no point. They can’t help me and I don’t want them to feel uncomfortable. But the downside to this camouflage of my situation is that even those closest to me have little inkling of what goes on inside my body and my mind and, consequently, poor understanding of what it is like to live as I must.

Which leads me to imagine – how much do I not know about the struggles others face in their day-to-day lives? What am I missing or failing to notice?

On the occasions when I have tried to explain how it feels to live in this damaged and distorted body, paranoia – that others see me as a hypochondriac; a walking, talking exaggeration – robs me of the right words. Conversely, sometimes the floodgates open, and I suffer excruciating embarrassment at that which I have just recounted. It’s a no-win situation: misconstrued if I tell, disregarded if I do not.

As my various illnesses have progressed, people I once trusted as friends have become dismissive and disdainful, before dropping out of my life entirely. I hesitate to force myself and my woes upon anybody, with the result that I now have just a few reliable friends – most of whom I rarely see – and even to them I remain in some ways invisible.

I hide in plain sight. You can see me, but you cannot see within me. You do not know what effort or courage it has taken me to set foot in the outside world; you cannot discern how I feel. And, in many ways, I’m glad. For if I can disguise the truth of my circumstances so well, then I am succeeding in the only battle that really matters to me – to live the best life I can.

Originally posted here

Myrtle Maid's OMBH Story

2011-01-20T15:00:00.000Z

Im am registered blind, have a neurological problem and now suffer from anxiety and depression.. I cannot work and even if I were more able I doubt and employer would employ me. Recent reports have suggested that only 27% of employers would take on someone with an impairment and even less those who have been ot of work on disability benefits for several years.

Though Im unable to work through health //disability problems Im also quite likely to be removed from disability benefits because the government " believes " that 20% of those already on disability benefits "could " work.. we are thus being labelled as cheats and scroungers.. odd then that the current government figures on disability benefits are less that 1%.Where will these jobs for those currently on disability benefits who have them removed from them come from?

I am living in fear of my benefits being removed, because I dont know how I could ever get a job and were I required to look for one I wouldnt be able to do the neccessary work required by the job centre of those seeking work and thus would fall foul of jobseekers allowance laws.

I feel now that I am always under suspicion of being a scrounger and that I have to be ready to "explain myself" constantly .. not a nice way to live.

Its not this government tho , the Labour party began this and employed Freud etc to write a report which said many of the things the Tories are not acting on.. It set up an atmosphere where disabled people were seen as "fair game" for blame for the countries financial problems and where increasingly the very small number of those who were cheating the system were made to seem like the majority

I know Ill never again trust politicians as a group to do what is in my best interests and as Im not always able to fight for myself I sincerely hope that those who can will: because if they dont , if articles like this arent written, and people like those who blog frequently and those who blog swarmed this weekend dont, then I hate to think of what will happen to people like me in the future.

How Sick Is Sick Enough?

2011-01-20T13:00:00.002Z

So, the axe is about to fall.

Even this morning, we hear that £1.5 billion will be "saved" from Disability Living Allowance, and we know that Osborne wants to get as many as 1.5 million of the 2.4 million claiming ESA "back to work".

Most people probably don't even know the difference between the two benefits, and often in the media, they are lumped together as "Disability Benefits". ESA (Employment Support Allowance, previously Incapacity benefit) is the payment received when you become unable to work on medical grounds. After a certain length of time, the payment increases slightly as you are considered "long term" sick. DLA (Disability Living Allowance) is a benefit paid on top of ESA and is split into two components, a mobility component for those who's illness or disability compromises their mobility significantly, or a care component for those who are in need of extra care to live their lives. (ie incontinence care, help with washing or dressing etc)

Each benefit requires the claimant to fill in around 40 pages of questions, and each question requires an essay style answer - the unknowing claimant who writes "yes" or "no" or "maybe" will not get a positive outcome. The questions are subtly repeated to dig for anomalies and require the claimant to share information they probably don't share with their own partners.

DLA is incredibly difficult to get and is archaic in it's assessment of need. It is so focussed on "Disability" that it is almost impossible to fill in the forms if you have an "Illness" that equally disrupts you life. Many long term ESA recipients don't even bother applying for DLA (whether they would be entitled to it or not) because they feel it is only for those in wheelchairs or those with an acute physical deformity. There are incredibly strict criteria based on a "points" system (how degrading is that? like Nectar for dysfunction?).

For many years, my condition was considered so serious, that I was largely left alone. For 9 years, I received Incapacity Benefit, and my only input was to fill in the dreaded 40 page form every three years. Some had to fill them in more regularly or attend an "assessment", but some logic in the system somewhere meant that I was not troubled.

Until last year.

Sometime during the summer, a letter fell through my door "inviting" me to an assessment of my condition. When I say "inviting", I of course mean "summoning" - if I didn't call to arrange the appointment within a certain time, my benefits would stop. If I didn't attend the appointment, my benefits would stop.

The letter was astounding from start to finish. I had to bring a passport with me to the "assessment" to prove I was who I said I was, and not some professional malingerer paid to act sick. I had to bring every medication, treatment and apparatus with me that I needed or might need. I phoned the call centre about this - sometimes I need a feeding tube and pump, but they're heavy - did I really need to bring it with me? Sometimes I need opiate injections, but they're not really something one would choose to carry through the back-streets of Brighton. (Unless one wanted to turn a profit!) Yes, I needed to bring everything with me - empty boxes wouldn't do, even if they had my prescription details on them.

The most ironic part of the letter was the "How to get Here" sheet. They had kindly included an itinerary showing me how to get to the appointment that included a 7 minute walk to my local train station, three train journeys and a nineteen minute walk at the other end! I joked with my family that it felt like a 16th Century witch trial - if I could make the journey they suggested, I wasn't sick enough and they would stop my benefits, if I didn't make it, they would stop my benefits anyway for not showing up!!

Well, on the day of the appointment, my Mum drove me to Brighton, my husband took a day off to look after the kids and sick with worry, we found the "assessment centre". It was a grey, bunker of a place, with grills at the windows and grills at the reception desk window. There were two intercoms to get in the door and the carpets were stained. It smelt of urine.

I handed over my passport at the window and was told to take a seat. Perhaps 8 or 9 other people sat around looking miserable and frightened, no-one really spoke. One woman was in a wheelchair very obviously missing a leg, another chap, sitting slightly apart from everyone else had Parkinson's and sat there, shaking uncontrollably. The others, looked like me. You couldn't have immediately known what was wrong with them.

After a long and unexplained wait in the gloomy, urine hole, my name was called and I struggled towards the office with three enormous and very heavy bags and a cool bag containing my immuno-suppressants that need to be kept refrigerated.

At first, the "assessor" was detached, even a little cold. She asked me to show her my medications, and I went about emptying the three carrier bags onto her desk. Drugs for pain, drugs for sickness, drugs for inflammation, drugs for osteoporosis, (caused by a lifetime on steroids) dietary supplements, liquid feed, feeding tubes, syringes, hypodermics, dressings, drugs for acid caused by the other drugs, immuno-suppressants, swabs, all tumbled out onto her desk and her attitude changed dramatically. I'd included some pictures of my poor little body a month or two before just after I'd had surgery. My arms, stomach and legs were literally covered in angry, purple bruises from central lines and incisions and my ribs stood out like the bars on the receptionist's window.

She pretty much told me the "assessment" was over at that point (I wondered why I couldn't have just sent them my repeat prescription sheet.....)

I was still on Incapacity Benefit and being assessed accordingly, but most were there as they were being changed over to the new ESA. My assessor told me it was lucky I was still on Incapacity for the time being, as to qualify for ESA was almost impossible. In her own words, she told me "If you lose one eye they tell you to use the other one, if you lose one leg or one arm they tell you to use the other. It's not until you can't walk move OR see that you qualify."

At this stage, some of you might be thinking "Well, of course I'm sympathetic, but what else can be done? How else do we catch the cheats?"

And that is the point of this post. You will never catch the cheats this way. If you are a cheat, you will pretend and you will be much better at it than someone who is genuinely sick. People like me, spend every waking moment trying to pretend we're not as ill as we really are. Cheats spend every waking moment pretending they are sicker than they really are. In fact I've often thought that the more a claimant minimises their condition, the more entitled they probably are to help. Incapacity Benefit needs proof from your GP, but some GPs know full well that the person in front of them is not really sick, but are too intimidated or disillusioned to say so.

So what is the solution? Surely "assessments" are just designed to deter as many of the genuinely sick as possible? You feel so utterly degraded, despised and worthless at the end of the process, you would do almost anything not to go through it again. It is remarkably convenient as a tool to show rich, healthy, Telegraph readers that governments are tough on the recipients of the tax they manage not to avoid, but I'm convinced it doesn't stop any cheats from getting through. If they make it unbearable enough, some will simply decide to work themselves to death to avoid the crushing horror of lining up to be judged.

Assessment implies doubt, mistrust, guilt, burden. It is entirely unnecessary, merely a contrivance to make governments look "tough on scroungers"

My solution is that if you don't have a consultant, who can confirm that you have a serious condition that has caused you considerable distress over the course of the year, you don't qualify. It surely wouldn't be beyond the combined talents of the NHS IT departments to design a programme allowing consultants to press a button, write a short precis of their patient and submit it to the DSS? Consultants would have access to x-rays, test results, medical history and surgical history. They would not have the same personal link to the patient, allowing abuse and intimidation. Sure, some would still try to cheat the consultants, but a specialist who has devoted his or her life to a particular condition is not to be fooled easily.

The question therefore is do governments want to make things better? Do they want to stop abuse of the system? Do they want to save on the cost of assessing claimants and the vast cost of appeals when the assessor is overzealous or just plain wrong? Do they want to weed out the cheats? Or does it actually suit them to line us all up like the burden they consider us to be and try to deter us from getting any help at all? Do they actually know that cheats in fact make up a very small percentage of claims and that most people are genuinely in need of help.

I'll leave you with this thought. I've tried for years to find out how many people suffer from a chronic illness or disability in the UK and the figure eludes me. However, a quick scan of the web tells me that around 3.7 million people have lung disease, 2.6 million people have diabetes, 180,000 people suffer from bowel disease, 5.4 million people suffer from asthma, 2.6 million live with heart disease, around 300,000 people a year are diagnosed with cancer, 1800 babies a year are born with cerebral palsy, 640,000 people live with schizophrenia, 820,000 live with Alzheimers or dementia, 19,000 receive dialysis for kidney failure, 23,000 are deaf blind, around 40,000 people have suffered a spinal injury and 8,500 people suffer from cystic fibrosis. Whilst only scratching the surface, we're well above 17 million already, yet only 2.4 million people claim ESA. That's at least 14 and a half million people living with a severe illness or disability not claiming anything at all.

Assessments would appear to be a better deterrent than we think wouldn't they? And many, many sick people don't want to be "scroungers" after all.

Originally posted here

Robbsart's Story

2011-01-20T11:00:00.001Z

Warning: This post contains strong language and opinions which represent the views of the individual author

The instance I wish to point out as to the way in which the disabled are fobbed off and treated without much thought as to the consequences of the 'authorities kind words of help & advice', I use that not towards the people that care for me within the NHS as they truly are helpful & I am able to open up completely to them without any hesitation, or maybe another term could be guilt or shame, I don't know.

My little story started off with Twitter when the group Epilepsy Action put forward a plea on this page http://www.epilepsy.org.uk/blog/2010/we-need-ten-minutes-your-time-today it was to ask your MP to support a bill using this guidlines that were supplied by Epilepsy Action:

We’d like everybody with an interest epilepsy in the UK to do the following:

Contact your local MP. You can find out who your MP is, and contact them, through www.writetothem.com
Tell them that there’s going to be a reading of the Ten Minute Rule Bill on Epilepsy and Related Conditions (Education and Health Services) Bill straight after Prime Minister’s Questions on Wednesday 24th November.
Ask them if they are going to be in the House of Commons chamber for Prime Minister’s Questions. If they are, would they stay in the chamber for 10 minutes to support the bill.
Tell them your experiences of epilepsy and epilepsy care. How does epilepsy affect you? How good or bad are the services for epilepsy in your area?

Epilepsy Action also asked if you heard back from your MP then could you tell Epilepsy Action what the response was, I cannot remember if I did or not, admittedly I have short-term memory loss, whether or not that is why I can't remember I don't know. Andrew Robathan replied and said how sad he was for my loss (my wife having died a few months earlier) and how hard it was for myself & my son, he also had the audacity to say how he understood what it was like to suffer from epilepsy as a great friend of his has epilepsy (this is where my writing might turn into a rant so excuse me), which makes me boil up a lot & makes sense as a spoonerised sentence to prove you are not homophobic that goes along the lines, "I'm not homophobic some of my best lesbians are friends."

Grrrrr... Inside I was going, background ammunition was needed to make him understand, a quick bit of research told me he was married with children, to say anything that would upset the innocent is just pure evil, but the ignorant, ahhh. My MP is primarily involved in issues with the defence, he has a military background. I took this & made a simile hoping he'd understand he'd made a total *rs* of himself by saying he understood about being epileptic, I said I understood what it was like to lose your legs in action protection queen and country as I have a friend that was in the army. Same logic, but it was on his field of expertise.

Suffice to say he didn't go but he told me Valerie Vaz did, he also told me I didn't understand the Bill.

I replied to him, unfortunately a bit red misted & I gave him a dressing down, unto which after I felt that he wasn't going to reply and the actual Bill et al had sank out of existence for me as it was a testing time coming and I knew this was so, all was focussed on me and my son.

Well imagine my surprise, well don't because it was more of a about blinking flip time I'd forgotten about this, when I got a photocopy of a letter addressed to Andrew Robathan MP from Paul Burstow MP Minister of State for Care Services (oh, short term memory comes from dyslexia which makes Paul Burstow's position read as Minister for State Circus)

10 Paragraphs

(1) Thanking my MP for correspondence about epilepsy.

(2) Apologies for me having epilepsy, that makes it better? And the difficulties it causes my 'family' and son, who is named as my whole family in correspondence, first hint of not reading the correspondence. Sorry to read of my wifes death, actually could have helped there by putting more than 1% cancer research money into the 5th highest killer in cancer, my wife & I thought she'd be dead 2 Months after diagnosis of pancreatic cancer, but we were so happy that we got 10 months. All she wanted to do was see her 'baby' turn 16, she 8 weeks before his 16th birthday. This is valid, Dept of Health made one woman in particular feel like she has (and still has) a yoke of lead around her neck because she was the one that was given the test 'results' to tell my wife that they were negative. If terminal cancer is negative then I feel that the Care Services need a lot of cash injections. He also understands that I am going through a difficult and painful time and I do accept he condolences as I hope he does mine, as to understand this time his wife/partner must be dead too.

(3) This is word for word as this is the only piece of correspondence pertaining to the original correspondence, not enough reading methinks.

I would like to assure Mr Smith that the Government is committed to improving services for people with epilepsy. I note his interest in the Epilepsy and Related Conditions (education and Health Services) Bill and as he points out it is due to have its second reading on 4 March 2011.

It is not a lot in the scheme of things. Committed to the point of not going to these meetings and saying it doesn't matter yet as this is a meeting to see if there will be a meeting later on, so why have the preliminary? Oh and punctuation, its should have an apostrophe as it is in the belonging to sense.

(4) Mr Smith (me under false name protect innocent etc) may be interested to know, NICE published guidance on clinical and cost effectiveness on new pills to help us all. IN 2004? I KNOW I WAS ONE OF THOSE TAKING THE THINGS AND HAVE SINCE BEEN TOOK OFF THESE MONEY SAVING NEW DRUGS!!!!! NEW SEVEN YEARS AGO! Does a new born baby go to junior school? According to Paul Burstow MP Minister of State for Care Services it would seem in his clock would say yes, reverse dog years?

(5) NICE published guidelines in 2004, help raise treatment, care and support. Website address.

(6) NSF I have found pledges it focuses on improving standard and quality of services for people with neurological conditions (here's something NOBODY has ever told me) and pledges that everyone with a long-term condition will be offered a personalised care plan. I have got this bloody condition for the rest of my life and my neurologist has told me so I believe the official term is chronic-epilepsy, it doesn't matter as I used to have grande mal, fits, epi's, but now the 'name' is tonic clonic. It's long term and I should have died on my 24th birthday after having a fit and going through my mum's front door in the middle of the day. The ambulance man told her I should've died with lacerations all over my head & blood from the bottom the stairs all the way to the bathroom. It shook my mum up especially when my cheek was numb, she told me to get my finger out of my head, big gash no nerve endings, but I'm not dead and the only way I know 100% that I have had a fit my own personal care plan is if I have bit my tongue ragged.

(7) Here we have notes on GPs getting £££ for caring for patients, under QOF guidelines it appears. Since being diagnosed 36yrs ago was seen by one GP and that was the one that referred me to my first neurologist. This is sending out lots of mixed messages to me and I am finding them hard to filter and get into my fingers to type.

(8) I apologise about my language here, but this is the clincher, the actual beast within the photocopy that tells me it is the unfortunate employees of these fuck-witted, shit eating, bastard self defecating, Cameron/Clegg cocksucking fucking insensitive air biscuit collectors.

It tells me about high quality information from NHS Choices, published in NHS Guide To Epilepsy.

It provides a guide with comprehensive info about symptoms, diagnosis, treatment, living with epilepsy, managing epilepsy during pregnancy & videos of people who live with epilepsy. Now the only one there that doesn't apply to me is the epilepsy during pregnancy. These are just more bits of the promoting, feel good, appeasing the fools that think they can get us to change our mind by writing to us replies I get upset by. Here comes a good one that defies all logic and I refuse to let certain people read this letter. It's the last sentence in this paragraph and I'll write it as it is here.

It also includes information on the risks associated with sudden unexpected death in epilepsy, and includes a link to the Epilepsy Action website, which has more detailed information.

There is a risk with death? Maybe Paul Burstow the 'Care' MP should have 'spoken' to Andrew Robathan the 'Defence' MP as he has some experience regarding the risks associated with death. However the information is obviously not for me as the death would be mine so he is expecting me to pass it on to a 16yr old boy who has just lost his mother. Unexpected death? WTF? So there is an expected death, thank crikey. It is also nice to know that the CARE Minister is pointing me into the direction of a government supported....Oh it's a charity...

He is the most evil thoughtless thing as there has not been any reading of the correspondences, or any read through the reply with any thought as to it going to an individual so much a league table.

(9) NHS Choices + QOF = statistics about the performances of NHS. That is all

(10) I may be interested to know the MRC is involved in several projects involving epilepsy, if I want to find out more. No I wanted to find out more of what you skimmed over in the 3rd paragraph. Basically if the voter wants to pursue it further the voter must do this then correspondence can resume. That's how it makes me feel and that is bad 'customer relations'.

Finally I hope this reply is helpful, polite and acceptable.

Then his signature, his name in bold letters.

But underneath yet another kick in the nuts

Approved by the Minister and signed electronically in his absence to avoid delay

He had time to approve it but not sign it how does this work, I am asking does the Minister actually read/dictate/listen to these letters?

If so then I'd start fawning to the max

no respec' to the Burstow

@robbsart

Romi and Sam

2011-01-20T09:00:00.001Z

I am a disabled single mum living in Essex. My son is 14 and acts as my carer. I have epileptic seizures which cannot be controlled by medication, and I can have upto 8 in a day. I also suffer from anxiety attacks, high blood pressure, depression and PTSD resulting from being assaulted when I was 18. To add to this last week 3 masses were discovered in my bowel one the size of a grapefruit, another a satsuma and the smallest a walnut! Apart from this sounding like a great fruity concoction in my belly the truth is that he pain is so bad that I am doubled up barely able to move. Because of my seizure coming so frequently and my only having awareness of their oncoming about 30% of the time unsurprisingly I have also developed agrophobia, mainly due to the chaos I can cause having seizures in public.

The DLA that I get helps me take taxi's to and from medical appointments and also occassional visits to my son's school and family, it has helped put safety glass in the doors and rails on my bathroom walls. It enables me pay for a carer when my son goes out for a well earned break and when he is at school. It also helps towards the gas and electric as I am home 24/7 and use alot.

To be honest I think that without we would be hungry, cold and unsafe. I would probably have to go into some kind of sheltered accommodation and my son into some type of care, which would devestate both of us and probably cost alot more than my DLA.

As it is my 14 tear old son acts as a lifeline and I carry a huge amount of guilt at robbing him of big chunks of his childhood. He is there when I wash and tries to fend off well meaning people phoning ambulances if we venture out, not always easy!! My DLA was stopped compleately about 18 months ago when they reassessed me, it was terrible I had to wait months to attend an appeal tribunal about 30 miles away. Eventually it was reinstated but I had some money taken off as they reduced my level of care needs and that had a big impact.

A YOUNG CARERS LIFE AGE 14

My mum is ill, she falls over,alot! When I started school I was really very surprised that my friends did not have incredible collapsing mothers. Anyway now I am a teenager and I do shopping, washing, cleaning, sit with my mum whilst she baths and often clean her and the floor if she has an "accident" during a fit. It's not strange to me because life has been like this since I was little. I don't have a brand new mobile, Xbox, designer trainers or any of the stuff my mates take for granted and at times I have been bullied at school for being different. I love my mum and I want her to be safe. When she's worried about stuff she gets iller and I get distracted at school and my grades drop. If we have to loose more money then I think things will get even tougher. The last time they came to the house they came whilst I was at school, I didn't get the chance to explain how ill mummy really is. I think they did it on purpose. I would like some extra help really so I can start to go and see my mates and even spend time with my girlfriend.

Head In The Sand

2011-01-19T17:00:00.000Z

I am lucky enough to have an MP that is very communicative. He not only responds quickly to letters, but he also treats email as real communication, and *gasp* even responds to constituents on Twitter. When my wife was being kept from working by an inexplicably delayed CRB check, he intervened and the certificate was here within two days.

Unfortunately the luck ends there. He seems to be blind to any evidence of what the governments ruthless cuts will do to people. This conversation followed my suggestion that he read the One Month Before Heartbreak blog which is full of real people writing about how the the proposed changes to the benefit system will affect them. Full text after the screenshots.

The full text of that conversation

My original tweet: I urge @peterjluff – and everyone else – to look at http://j.mp/gQRnKz where there are stories of many people that will suffer due to cuts.

I was retweeted (message passed on to followers) by Nemesis Republic:
RT @latentexistence: I urge @peterjluff – and everyone else – to look at http://j.mp/gQRnKz stories of many peoplewill suffer due to cuts

Peter Luff replied to her:
@PeterJLuff: @NemesisRepublic But the alternative (letting country continue slide to bankruptcy with biggest deficit of any major country) is much worse

Apricot muffins commented:
@PeterJLuff I find this statement reprehensible. The disabled among us deserve every protection their country can give them, deficit or not

Which led to this response by Peter Luff:
@apricotmuffins And they will get that protection; what I find reprehensible are the scare stories
And there you have it. Talking about real disabled people in fear for their incomes, their care, their wheelchairs, is a scare story. Talking about our defecit, which isn’t anywhere near the problem that we have been told it is, is not.

In case you thought this is misinterpreting his views, here is another example.

The text of that:
Me: @PeterJLuff I’m afraid I just see savage cuts that are hurting the poor and vulnerable. Where is the social responsibility?

Peter Luff: @latentexistence Well I guess I won’t persuade you, but I see something completely different, with the vulnerable protected.

Originally posted here

One Month Before Heartbreak - Iris Running

2011-01-19T15:00:00.001Z

I became aware of this blogtoday. In one month the government's consultation on DLA (disability living allowance) is due to end. Many people have contributed stories about how their DLA has made their lives liveable, in some way. This is mine. It's not as dramatic as some people's, I don't receive very much in the great scheme of things, but this small amount keeps me safe.

I have a mental health condition diagnosed as Borderline Personality Disorder. The diagnosis is largely irrelevant; it is characterised by anxiety and depression and I have suffered from those as long as I can remember. Day-to-day, the following things cause me problems:

I self-harm when I am left alone, in a variety of ways,
Emotional fatigue causes me to have difficulty concentrating for long periods of time,
Anxiety sometimes prevents me from leaving the house on time (or at all), and sometimes I need to get the bus for a short distance to compensate for time or get off a busy street,
I forget to eat, my lack of concentration and low motivation means that I can't cook for myself unsupervised,
I forget to take my medication, or take it without food so that it makes me ill,
I don't sleep well; right now I haven't had more than two nights uninterrupted sleep (5 hours or more) in a single week since I started monitoring it in July.

In practice, this means that whilst I am studying (which I am now) I have to live in College and my food is provided usually by the in-house catering. If I can't eat in (if I forget to sign in for meals) I have to buy microwave meals (if I can leave the house to go shopping) or go without. I am lucky that living in College I have a timetable that I can follow and the routine helps me to remember things like eating and taking my medication. If it weren't for my DLA I wouldn't be able to afford this.

I also need to buy a lot of first-aid kit for self-care. My DLA pays for what I need over-the-counter and allows me to pre-pay for my prescriptions so that I can afford what I need on the NHS. DLA does not entitle anyone to free prescriptions so the rate I receive has to cover my medication.

When I leave university, I will continue to need this money to pay for food, and I will need to employ someone to check in on me and make sure I am eating and taking my medication. If - as I anticipate - I start intensive psychological therapies in the months after I leave university, I will also need this small income to supplement my wages as this will compromise my working hours and limit the type of work I can do.

All of that on less than £50 per week.

In a nutshell, my DLA keeps me productive. It kept me in work when I had a crisis in the middle of 2010, saving the government a lot of money in Statutory Sick Pay / Incapacity Benefit / Housing Benefit / etc., and it will enable me to go back to work when my course is over. As someone with a 'hidden' disability, unrelated to mobility, I would probably be one of the 20% who are suddenly ineligible for DLA and if that happens, I honestly don't know what I'll do.

Originally posted here

One Small Voice

2011-01-19T13:00:00.001Z

Introduction

This article is my contribution to OMBH (One Month Before Heartbreak), organised by The Broken of Britain.

I’ve said it before and I’ll say it again: I’m not an eloquent writer nor am I particularly good with words. I write as I think and speak.

Right now I’m angry. Very angry. Bloody angry in fact.

I’ve never been politically savvy. Nor do I understand the intricacies of national economics or finance. But, I do know the difference between right and wrong and there is something very wrong happening in our society right now.

The unkindest cut of all

The government are proposing some really horrendous financial cuts as part of the recent CSR (Comprehensive Spending Review). Tuition fees, scientific research, libraries and much more.

They are being particularly savage with the disabled. One of the most sickening is the decision to stop the higher rate of the mobility component of DLA (Disability Living Allowance). The cut affects those in residential care.

Recipients use this allowance in several ways. For example:

To buy themselves a motorised scooter.
To lease a Motability car.
In some places, residents pool their benefits to fund adapted minibuses.

In all of these examples their is one common denominator: the allowance gives the person freedom. Freedom to move around the establishment. Freedom to leave the establishment. Freedom.

The proposed withdrawal of this allowance is going to deny an awful lot of people this freedom.

It’s inhuman, inhumane, callous, immoral, unethical and downright criminal. Millions of men, women and children have died over the years to ensure a fair and just society. This isn’t fair and it certainly isn’t just.

Mr Cameron, Mr Osborne and Pinnochio, err, sorry. I mean, of course, Mr Clegg; Pinnochio is a fairytale puppet with no strings whose nose grows every time he tells a lie. Where was I?

Oh yes. Mr Cameron, Mr Osborne and Mr Clegg are intending to deprive the most vulnerable of our society their basic rights as an individual. They are also intent on dismantling our welfare system piece by piece.

Have all those lives really been lost in vain?

The government is taking savage action against those who most need our protection. I wish they would be more diligent in recovering taxes from those individuals and companies who owe millions and, in some cases, billions of pounds.

Like many others I’m disgusted at these proposed cuts. Our government are beneath contempt for even suggesting the measures.

That’s it. Finish. End.

Just one person’s thoughts.

One small voice.

But, it’s one small voice that is joining hundreds, thousands of other voices.

Keep writing and keep protesting because now, we’re SHOUTING.

Originally posted here

On Disability And DLA

2011-01-19T11:00:00.000Z

Before you read my post, I want you to read this.

Back? Okay.

I am disabled. I have always had some form of disability. I was born autistic, with difficulties in communication and interacting with the world, a world that’s not really designed for people who think and see things like I do. I developed mental health problems when I was about 12. When I was 18, I had my first stay in a psychiatric ward. While there, I was told I should claim DLA, as my mental health problems were so severe I needed a lot of help just to live. I was one of the lucky ones- I applied and was awarded Higher Care and Lower Mobility on my first try. This means that the assessors agreed that I needed a lot of help during the day, at night, and when I went out.

When I say I was lucky, I mean it. Getting that rate of DLA meant I was automatically considered too ill to work, which meant that I could claim Income Support for incapacity purposes (I was ineligible for Incapacity Benefit as it was then because I’d not made any national insurance contributions) without having to go for medicals. Getting it on my first try meant I didn’t have to try and navigate the appeals system, which I was too ill to try and do. It meant that my partner could claim Carer’s Allowance, which meant he didn’t have to try and work and look after me full time.

The money from DLA pays for me to live as normal a life as possible. The mobility component pays most of the cost of my husband’s travel pass, as I cannot travel independently. The care component has paid for my wheelchair, for other items to help me with my disability. It has paid for ready meals and takeaways so when I was living alone I was able to eat everyday. It has paid for extra clothing when I’ve had weight gain due to medication. It paid for a clothes dryer which meant until my recent relapse, I could still do the washing. It pays for my internet connection so even when I’ve been very ill, I’ve been able to communicate. It pays for my travel costs to attend a college 20 miles away, one where I get specialist support that has enabled me to continue with my education. It has also enabled me to have enough money to pay for my interests, which went a long way in helping me come out of my nearly 12 year long depression.

In addition, Income Support is a passport benefit. It means that my council tax and rent are paid for me (I’m on Local Housing Allowance, which enables me to live in my flat). It pays for my prescriptions, which while I was trying out lots of different medications to try and help me would have been very expensive. The main thing though is that while I am ill, I don’t have to think about working, and nor does the person looking after me (a full time job that currently involves 6+ hours of travelling four days a week, on top of everything else).

I was hoping that once my mental health improved, I would no longer need DLA at the rate I was getting it. I will probably always be eligible for and need some DLA- even when completely well, my communication difficulties and lack of safety while outside caused by being autistic would mean I’d always need some support. Unfortunately, after getting the flu in August 2009 I continued to be physically ill, and I was diagnosed with M.E. a few months ago. The caring duties of my husband now include pushing me to college (as I am unable to walk for more than a minute, or self propel my wheelchair for much longer), physically helping me with tasks such as washing and dressing, making sure I eat even when I feel too ill to do so, and taking over all household tasks as I’m physically unable to do. I also need near constant companionship, because although I’m no longer depressed my brain is still quite capable of turning into a scared, shaky rat thinking that everything is out to get me and I need reassurance that it isn’t the case.

Do I want to work? Yes, very much so. I still look at job adverts in areas that I would be good at, if only I were well enough. I imagine applying for those jobs, being able to earn a wage, to stop being reliant on other people. I dream of being able to walk into an office, being able to manage a full workday, being productive. That’s all not possible at the moment. I manage college part time with frequent rest breaks and with an appalling attendance record. My lecturers are understanding if I cannot get into college that week- an employer wouldn’t be. I also have to rely on support staff while in college to push me to my lessons, to take me to get my lunch, to help me get to the toilet. The reason I continue to go to college is to get me the qualifications I need to eventually be able to work in an area that interests me, as most jobs for those without qualifications aren’t suitable due to things that go with being autistic, such as being sensitive to noise.

Take away my DLA, and I will no longer be able to attend college, or to buy the extra items that being disabled I need, including things like my wheelchair. Take away my Income Support, and I will no longer be able to live in my flat, to take my medication, to eat, to manage anything. I’ll be homeless while unable to walk, while unable to communicate effectively, while unable to care for myself. Force my husband to work, and my illness will get worse (as it did while he was ill). I’ve not been suicidal now for several months, but being dead is probably preferable than trying to live without the support, both financial and practical, that I currently get.

I apologise for the muddled-upness of this blog post. I used all my writing spoons on my exam on Thursday.

For Johan’s blog post on this subject, please see Why We Can’t Grin and Bear It Anymore.

For other blog posts in this blog swarm, please see One Month Before Heartbreak.

Please feel free to link and share this blog post. I’m releasing it under an Attribution-Share Alike licence.

Originally posted here

DLA, Danni And Me - By Vicki Biggs

2011-01-19T09:00:00.008Z

In 2008 I moved in with my close friend Danni Brennand. Between us we had diagnoses of myalgic encephalomyelitis (Danni), Asperger’s Syndrome (the pair of us), severe dyspraxia (me), and acute mental illness (Danni). I was fresh out of university and she had just escaped from a supported living unit for people with severe mental health problems, where she had lived for a year. Before that she had been stuck in a psychiatric hospital, as she had nowhere else to go. Together we decided that we would have our own flat, supporting each other with the things we found difficult.

At night before Danni went to bed I would sit with her to try and calm her anxiety. At that time she was feeling actively suicidal and struggling to cope with a combination of insomnia, exhaustion, and the inevitable nightmares that descended on her when sleep did come. She needed someone there with her. When she enrolled in a full-time life skills programme at a specialist unit, I travelled with her to be sure that she got there safely, as she found my presence reassuring and I was able to keep her safe when she had panic attacks.

I was in charge of the household shopping, as Danni’s mobility problems meant that she couldn’t get out of the flat much. She was in charge of organising me. (“Vicky! Remember to…”) She would write out a daily timetable for me on the living room whiteboard. I dealt with any phone calls that were necessary, as Danni can’t use the phone. Danni organised all the bills and calculated the household budget, as my short-term memory problems make it impossible for me to manage my own money.

I cooked for us two or three times a week. Danni was too ill to stand at the stove, but she has better than safety awareness than I have. “Vicky?” she called in cautiously one day. “Is the flat meant to be full of smoke?” With her to open jars and tins for me, to make sure I switched the oven off, to stop me if I did anything too hazardous, and to check the expiry dates on food (once I made a stir-fry with rotten vegetables, dreamily handing a plate of stinking green-yellowish gunge to Danni without registering anything unusual) we remained reasonably well fed. We did rely heavily on ready-prepared foods, as my co-ordination and memory skills mean that daily cooking is not practical – it’s much more time-consuming than it would be for someone without my conditions, and I have a very limited repertoire of meals that I can make. I have specialist kitchen equipment that makes things a bit easier, and with Danni’s support my skills began to improve.

Sometimes our problems areas clashed. In March 2009 Danni had to go into hospital in a hurry. I visited her every day, and every day she asked me to bring in some clean knickers. That request was repeated with increasing desperation as the week went on, but the knickers themselves never materialised.

“Danni, I’ve been organising some support for when you come out. I’ve contacted social services about our – “

“Have you brought me my knickers?!”

“N – no, but I have brought you this statue of Our Lady of Mount Carmel to keep by your bedside, look.”

Despite these minor hiccups, we worked well together as a team. Two disabled women enabling one another to live independently. My old neurologist told my parents that independent living was something I could never manage. She was wrong.

Disability Living Allowance (both Danni and I receive it) helped us more than I can ever say. It’s not a fantastic amount of money: contrary to the myths that abound in the Daily Mail comments section, you can’t use it to go cruising in the Bahamas. But you can use it to buy the squeezy Branston pickle bottles that you can actually open, as opposed to the cheaper jars that you can’t. If your disability means that you can’t drive, you can use DLA to pay for taxis home from work when you finish at 10:30pm and the buses have stopped running. (Yes, I had a job – we disabled types quite often have jobs, you know.) You can use it to pay for all the things you lose as a result of your memory impairments and all the things you break as a result of your physical co-ordination problems. DLA is too small a sum to cover all of this, of course, but it does help a lot. And if you ever have to take a week’s unpaid leave from work because one of your closest friends has had an emergency admission to hospital and you need to be there for her, you can rest assured that you’ve got enough to pay the bills.

And the government ought to be resting assured that it won’t have to foot a care home bill or even fund a support worker, as the two of you are doing such a good job of looking after yourselves. But it isn’t. It’s trying to take away the small allowance that the pair of you use to live independently together. Meanwhile, the Prime Minister is outlining his vision for a ‘Big Society’ where everybody steps in generously to help one another, as though this is some radical new concept that is at odds with the benefit system.

It’s hardly radical. As a member of the disabled community, I have been privileged to meet many generous-hearted people who are going out of their way to assist one another. Some live in mutually supportive arrangements such as the one I had with Danni. Others spend a lot of their time raising money for disability charities or advocating on behalf of disabled friends who struggle to get their needs met. Now that DLA and other benefits are under threat, I have been moved to tears (literally) by the number of disabled people who have stepped forward to offer money and other forms of practical support to those in the community who lose benefits that they will struggle to cope without. And the funny thing is that none of these people are fabulously rich. If anything, they’re quite hard up. But that doesn’t stop them caring. Go here and see for yourself:http://philgroom.wordpress.com/2011/01/16/5-quid-for-life-in-search-of-a-campaign-name/

Meanwhile, the politicians who support the benefit reforms seem intent on portraying them as workshy cheats. They may deny it, but when they devote such relentless energy to ‘reforming’ a benefit that is already notoriously difficult to claim and has only a 0.5% fraud rate, you have to wonder what their motivation is. In declaring that they plan to cut down DLA claims by 25%, they aren’t thinking about the people who make up that figure at all. If they do think of us at all, perhaps they just see easy targets. Clearly they haven’t met Danni when she is in a bad mood.

The purpose of One Month Before Heartbreak is to illustrate that the figures have faces. If you are affected by DLA reform, or benefit changes more generally, please write about it. Submit it to the government’s consultation. Make it public. Share your strength.

I think that is what the focus should be here – strength. I could have written about so many other things, including the huge difficulty I had in claiming DLA in the first place; how awkward the system is for people with my problems to understand, let alone navigate successfully; the lies and bad treatment I got from the DWP; the intimidating nature of the medical assessment process; and the effect this had on my health. I didn’t. I wrote about me and my good friend, because ultimately this is what matters the most – the people involved.

Originally posted here

A Good Day for One Month Before Heartbreak!

2011-01-18T22:27:00.000Z

(this is a sticky post, new posts will appear below this)

Today has been amazing for support for One Month Before Heartbreak.

Sue Marsh (Diary of a Benefit Scrounger) wrote a piece for The Guardian which appeared in Comment is Free. We've been mentioned by The Guardian several times but getting a piece in Comment is Free is huge. Amplify the eloquent voices of the disabled protesters is Sue's piece and it's really good. It contains many links to specific posts on the One Month Before Heartbreak blog. Also that article has received well over a hundred comments and although I've not read them all there has been some good discussion and support there.

Kaliya Franklin (known by most people as Bendy Girl from Benefit Scounging Scum) was just on Talk Radio Europe talking about One Month Before Heartbreak, The Broken of Britain and the DLA cuts. I listened to that interview and she did a very good job of getting our points and concerns across. Talk Radio Europe have promised us their ongoing support for which we thank them!

The petition to end DLA reform continues to gain signatures..

Most importantly, the National Assembley for Wales has stepped up to oppose DLA reform

Oh, and the new Broken of Britain logo and twibbon were revealed

There are a couple of other "in the pipeline" things which maybe happening but it can definitely be said that it's been a good day for The Broken of Britain / One Month Before Heartbreak teams. Not bad for a bunch of disorganised, tired and overwhelmed disabled people - most of whom have never actually met!

Thank you so much for all your support and please keep sending your stories. We've only achieved what we have because of all of you.

Cuts, Intersectionality, Disability

2011-01-18T17:00:00.003Z

I've just started tweeting as Orpheus Uncut. I'm a youth
worker/educator and disability arts facilitator, with hidden
disabilities and mental health problems of my own, for which I have
never attempted to claim DLA, although I had DSA as a student, because
the extra hidden costs that I face in my life have never been
acknowledged by DLA.

I'm angry about disability cuts for the same reason that I'm angry
about education cuts, for the same reason I'm angry about arts cuts -
because they disempower the already powerless.

Education cuts are aimed primarily at subjects like history,
literature, philosophy: the subjects which allow people to develop the
thinking and communication tools to express their oppression; the
subjects out of which queer studies, feminism, and disability studies
have grown as academic discourse, being discussed in language which it
is harder for the powerful/conservative to dismiss.

I work with young people with profound and multiple learning
disabilities. These teenagers often have no formal ommunication skills
at all. Their most basic needs are extremely easy to ignore; their
more profound needs are exceptionally easy to dismiss. Needs such as
acknowledgement of shared humanity. Such as opportunity to succeed and
excell and be seen as succeeding and excelling by those around them.
Such as the opportunity to rebel, to express anger and have that anger
acknowledged and taken into consideration.

Even if we meet the basic medical needs of these young peoplem, even
if they have enough to live, and survive, even if they have food and
heat and clothes, we are failing them if we give them nothing to live
for, to strive for, to look forward to. In the same way as we are
failing other young people if we keep them in school until they are
eighteen and then deny them access to university or worthwhile
employment.

It is more difficult and expensive for these kids to access arts,
communication, protest than their non-disabled peers. One young man I
work with needs support with him at all times to make sure his
colostomy bag does not break while he participates in music and dance.
I am trying to find some neat phrase to express the fact that this is
close to a literal choice for him between art and excrement; I cannot
quite find the right comparison or metaphor to express what I want.

And it's about that inability to express. Not only is the government
not listening to its people, but it is cutting of the means for people
to learn to communicate in ways which it might find easier or more
acceptable to listen to. It is denying disabled people enough money to
live on, leaving people without the means, financial or emotional, to
participate in the struggle to improve accessibility. It is denying
the creative outlets which turn impotent rage into powerful art. And
it is kicking out the ladder for those who wish to learn to express
themselves in academic discourse; to argue with the powerful in their
own language.

Solidarity is a simple sentiment to start with - my struggle is your
struggle, and it's about the right to be heard. But it quickly gets
into complex issues of intersectionality and I've spent this whole
essay so far trying to avoid the word kyriarchy even though it means
what I want to say. And... I don't think I can express that clearly in
fewer words, and I'm scared the language I'm using sounds elitist and
offputting, and I'm not sure it's quite what you wanted as a piece of
writing. But... it's what I think needs saying.

This Is Not A Lifestyle Choice! Do NOT Treat It That Way...

2011-01-18T15:00:00.004Z

Every time I hear the media or the general public refer to people who claim benefits as "scroungers", their ignorance and lack of empathy saddens me. To me, being in receipt of benefits is most definitely not a lifestyle choice and this is why...

My name is Denise Stephens, I'm 32 years old, I live in London and I happen to have a highly active form of relapsing remitting multiple sclerosis (MS). After numerous years of unexplained symptoms, I was finally diagnosed in 2003, at the age of 24, and my life changed forever.

My life prior to MS was relatively average, I worked hard to gain ten GCSEs, four A-levels and secure a place at the University of Manchester to read Chemistry. Three years of blood, sweat and tears later, I was the proud owner of a first class honours degree. Some might say that the world was my oyster...

Having been fascinated by the world of forensic science since college, I set out to pursue a career in this highly competitive field. I was lucky enough to secure a position as a forensic toxicologist, working for a well known London University. Just over two years later I was offered a position with another organisation, where I would train as a court reporting officer. Little did I know that all of my dreams; independence, career, lifestyle, long-term relationship and so many more, would all be lost within a five year period.

At the beginning of 2004 my health took a turn for the worse, I had a disabling series of relapses which left me barely able to walk, manipulate objects with my hands or see out of my right eye. While my friends were focusing on climbing the career ladder and going out clubbing, I was finding it difficult to do even the most mundane of things, such as hold a knife and fork to feed myself. To say my self-esteem took a battering is an understatement.

Time went by and I was gradually able to build myself back up, with the help and support of physiotherapists, occupational therapists and other health care professionals. But this isn't the end of the story, the following years were divided between periods of illness, hospital admissions and rehabilitation.

I was forced to give up my career, which badly knocked my confidence. I come from a background with a strong work ethic, so without a job I felt worthless. I desperately wanted to return to work, if not my original career, something else even. I'd always worked throughout my education; paper round, shop assistant, waitress, bar work and administration, no job was below me. If only my health would allow me to do any of one of these things, I would have done it.

I reluctantly applied for benefits and slowly felt my independence, and self-worth slip away, only to be replaced by the feeling of isolation and loss. Nobody would be interested in speaking to me, what was I supposed to say when people ask "what do you do?"

I desperately tried to return to work, but attempts were either, at best, short lived due to a deterioration in health and hospital admission or, at worst, a complete and utter false start.

Despite having a first class degree at a red brick university, it appeared that I was unemployable. Looking for part-time work to meet my needs, was easier said than done. I would apply for general administration positions that required GCSE grades and despite the two ticks disability symbol, previous admin experience and a first class degree would receive no offer of an interview. I repeatedly visited the Jobcentre Plus for advice and was told to dumb down my CV. This definitely wasn't what I envisaged when studying so hard for my degree.

Being stuck at home with little to occupy my mind was slowly driving me up the wall, so I decided to go back to university. I was extremely frank about my condition and what it meant I could and couldn't do, but when push came to shove I received very little support, being told that the disability advisors were far too busy dealing with the undergraduates to be able to help. Yet again within a few weeks, I'd had another relapse and was back in hospital.

After years of what felt like hitting my head against a brick wall, the number of hospital admissions well into double figures and deteriorating health, I finally gave up trying to fit into the employment "norm". I just didn't and couldn't fit in and reasonable adjustments were rarely seen as important or necessary.

Slowly the Denise Stephens I and others knew disappeared, I felt useless and lost without the sense of purpose that comes from having a focus in life. Compounded by this, as well as mounting financial pressures which made me feel like a burden, my long-term relationship broke down and I became homeless. Not quite the stuff that fairy tales are made of...

So why am I telling you all of this, I hear you ask?!? Well, it's in the hope that you'll realise that no-one is guaranteed an easy and straightforward life. Health is something that many of us take for granted, but when it's gone there's little that can be done about it. There is no cure for MS, there is no walking away from this and I will have to manage my condition the best I can from day-to-day for the rest of my life. I did not ask to have my world turned upside down, it just happened as it could to anyone else. I did everything that society expected of me; studied, worked, paid my taxes, but now I feel like I'm a second class citizen because I have to claim benefits as my health doesn't allow me to hold down a typical 9 'til 5 job.

The proposed cuts to disability related benefits and services, feels like yet another kick in the teeth for those whose health and disability has already affected their lives and aspirations immeasurably. To carry out these cuts is irresponsible, as they will destroy the very support framework designed to keep the most vulnerable people in society safe and well, contrary to promises made by the government.

This is NOT a lifestyle choice! Do not treat it that way...

Originally posted here

Anne Novis MBE : A Push Too Far

2011-01-18T13:00:00.012Z

Anne Novis was awarded an MBE in the Queens New Years Honours in recognition of her dedicated work and ‘Services to disabled people’.

She writes:

I am a disability activist, you know one of those people who will complain, (how dare I?), when facing discrimination, challenge inequality wherever I find it and advocate for other disabled people.
Oh one of those you might say, YES! one of those who believes in the human rights of every single person, those ‘rights’ so many take for granted as they have not had them taken away yet.
I have fought, yes fought, for nearly twenty years for disabled people to be believed about their experiences of targeted hostility, harassment and abuse, hate crime and for an appropriate response from society.

Within all this I also fight for myself as a wheelchair user who needs care to live independently.
One of those who relies on benefits to live, to carry on having a family life, to practise my faith and be safe.

Oh I hear it already I am ‘burden on society’, ‘work shy’, a ‘fraudster’ and should have been ‘killed at birth’, I have actually been told this when attacked on a local high street and read it every day in the media .

I would love to get paid for the volunteering I do, for the contribution I have made to this society, for caring for my children and 23 foster kids, for advocating and counselling, advising and supporting other disabled people.

But hey I am part of the Big Society, one of those who does all this for free, you know like David Cameron wants you all to do now.

I am qualified up to my eyeballs, have attempted to get paid work many times often just a couple of hours here and there as that’s all I can commit to due to my body not being as active as my mind.
Most employers don’t want those who are sick, disabled a burden, work shy and fraudsters to work for them you know?

Now I face cuts in my personal care, the ILF which funds half my care package is scrapped and I will only get 5 more years of such support, that’s if I still qualify of course.

To qualify for ILF you must be on the high rate care component of DLA and need more then £340 plus pounds worth of care from your local authority.

But DLA is to be scrapped too , the local authority has no money and will be implementing increased charges for care and cuts in care as soon as possible.

I will be reassessed for the Severe Disability Allowance I get and probably have this taken away and be put on Job Seekers Allowance, after all I should be in paid work you know.

It does not matter about my health issues, regardless I must be in paid WORK!

Yet if I lose my care I cannot function, get up, get dressed, shop, socialise, practice my faith, in fact do nothing let alone be in paid work in some sort of ideal world where priority is given to sick and disabled people to get into work first before all those others sacked, made redundant, not sick, more experienced employees out there seeking work too.

I may get a basic income but I will have to jump through hoops, attend interviews, training and more and if I don’t ? Well I will be punished of course, the finance will be lessoned and eventually stopped.

Yet if I have no care support I cannot get up, dressed, eat, go out, and attend interviews or training.
But that does not matter I should make more effort as I am work shy, a fraudster and a burden on the state and ‘unsustainable’ as government ministers keep telling me.

So how will I survive? I will not.

But that’s ok too as then there will be less disabled people and we will save the government some money and all these incentives will have been shown to work as I, and so many others, will not exist.
And if we do mange to ‘exist’ it will be in residential care, or in bedsits, living on the scraps of funding society can ‘afford’ or deem reasonable for us to live on, we will return to begging on the streets then everyone will be happier as I will not be a ‘burden’ or a ‘fraudster’.

Yet once upon a time I had a dream, to own a home, have a career, travel and enjoy my retirement.
I was in paid work, as was my partner, we contributed to society by it’s current definition.
But oops! One day my body gave out, my back ripped apart and I entered the world of spinal injury, discrimination, inequality and prejudice.

Overnight I was unable to move from a bed, lost my work, my foster children, my partner and myself.
I did not choose this,it happened to me, as so many illnesses and accidents do.
One day you may find you or a member of your family becomes sick or injured, be born too early or face being different.

Now I face increased poverty, for no matter what you think disabled people on benefits are not rich, I face medical tests (many of them) by unqualified people who will decide whether I am too ill/disabled or not to be in paid work.

I face serious cuts in my care package, lose the five personal assistants I employ to help me, lose my wheelchair adapted car, lose DLA which was meant to help with some of the extra costs of being a disabled person.

Once I fail the ESA medical, which most do, I will become one of the invisible disabled, those not on anyone’s radar. I will face sanctions for not complying with job seeking requirement’s and lose even more of the pittance I am meant to survive on.

I will lose myself again.

Not due to an injury that was no ones fault but due to a society that is allowing a government to implement the most discriminatory harshest attacks on disabled people this generation has faced.
A society that is allowing those who can fight least to be targeted as the scapegoats for the financial mess they and the succeeding governments got us into.

Yes you, and you and you, all of you who stand by and say nothing or encourage such vicious and undeserving attacks are just as responsible for what is happening.

Those who stand by and allow this are equivalent to those who stood by when disabled people and Jews were targeted by the Nazi’s for annihilation.

Too harsh for you?

Its our lives we are fighting for, our very lives, some have already killed themselves due to what is happening, many more are considering it.

Will you stand by?

Anne Novis

Originally posted here

One Month Before Heartbreak - Having My Cake

2011-01-18T11:00:00.000Z

I received the email about One Month Before Heartbreak on Saturday and it is a campaign that I am very keen to support.

Disability benefit is a much-maligned sector of our society with a variety of colourful stories of cheats and frauds. However, there are a huge number of claimants for whom it is a necessity and who have successfully navigated the fraught waters involved with just successfully completing the form.

And yet, were it not for my friend Benefit Scrounging Scum, I probably would not be aware even be aware of how difficult it actually is to claim these benefits, nor how vital they are for the every day survival of ordinary people, who have had the misfortune to contract a debilitating illness like, for example, Multiple Sclerosis or become wheelchair-bound through an accident.

These are not scroungers or frauds but honest folk, who just want the ability to be warm and fed, whilst they deal with the symptoms and effects of their health problem. At a time when the public purse is feeling the pinch, it is too easy to make cuts in areas where there will be lesser publicity and vocal resistance. Let those economies be made in the salaries of the fatter cats.

Please sign the petition.

Today is Day 2 of One Month Before Heartbreak the blogswarm awareness raising campaign being run by Emma Crees of The Broken Of Britain, supported by CarerWatch and Community Care Magazine. Already over 6500 page views of the OMBH blog, and The Guardian article about DLA cuts was amongst their top 5 blog posts. With just a little more effort we can push this into the consciousness of the mainstream media and get some real attention to the cuts affecting disabled people and carers.
Please, spread the word. Sign the petition. Share OMBH links on facebook, twitter, diggit, stumble etc.
“Alone we whisper. Together We shout”

Originally posted here (warning, not suitable for under 18's)

What DLA Reform Means To Me

2011-01-18T09:00:00.005Z

I suffer from a condition called Reflex Sympathetic Dystrophy or RSD (often called CRPS Type 1) it affects all four of my limbs & across my shoulders.

To explain RSD -A Neurological Condition; it is like the signals in a television or radio where the wires are crossed. Something causes pain but the impulse doesn't go away.Sometimes it can at least partially, sometimes it doesn't at all & the pain can spread.

Someone once described the pain from the condition as though your veins had been injected with lighter fuel and set on fire....that is RSD.

RSD affects your skin,tissues,tendons,bones, and your vascular system.

The pain is unrelenting and even a puff of air or the brush of a feather can cause pain. You spend most of the day in searing pain, the only time I'm not is when I take a sleeping tablet at night!

When I found that the condition might allow me to claim DLA (Disability Living Allowance) I wasn't sure if I would be successful with my claim as it is a notoriously hard to be successful with a DLA claim.

I was therefore delighted to be awarded DLA although for the first year I had the feeling that someone was going to turn up and ask for the money to be returned.

This was because I wasn't used to getting help with my condition and had coped with several years before I rang the Council for help. Even though my condition has worsened and will probably continue to do so over time, as there is no cure.

When everything hurts you need all the help you can get, but I didnt want to lose my independence.

Without the DLA I wouldn't be able to pay for the carer that is essential to my day to day living and additional aids that I need to help my mobility would be too expensive and out of my financial reach.

Public transport is not an option for me due to the vibration from the trains and buses and the risk of being knocked by crowds etc ---DLA provides the essential option for taxi service to allow me to have a degree of mobility.

DLA pays for me to travel to a local Wildlife centre to go Bird watching. It has meant the world to me, I love to go when I am able. I have met new friends & I can feel safe there.

Mostly the DLA has given me the opportunity to live a more independent life.without it I couldn't have gone out I dont honestly know how I would have coped.

Disabled & Sick People who relied on that allowance are now in danger of losing it !

The Coalition are now trying to reform DLA. This isn't to help "simplify" it or to "make sure that it reaches the people that need it the most".

Neither will happen, this is basically just abolishing the Allowance & replace it with PIP (Personal Independence Payment ).

Getting this depends on passing regular medicals & as DLA is a passport to other allowances those are likely to be withdrawn as well.

DLA wasn't easy to get, but you could get other assistance. Without it there is no safety net for us.

The Government seems to suggest that DLA encouraged you NOT to work, in fact , if you were able to work it ENCOURAGED & SUPPORTED you.

One thing it DIDN'T, though was it DIDN'T PUSH or FRIGHTEN you into work if you weren't fit.

The Clue to what DLA was for is in the name:

It is a "Living" Allowance, in two components, Care & Mobility. If either of these are lost , in many cases PIP will become an Allowance for "Dying"!

I am in a better position than some, because I have my Partner; but I have always been honest in my forms but the past several months I feel frightened most of the time.

We will all fight this,though, we are many, we are together!

Do not stay inside your world look around you. Anyone can be touched by Illness or Disability, please do not let this happen.

We voted too.

We did not vote for this.

Wendy

In Which I Talk About Something Really Important (For Once)...

2011-01-17T11:30:00.000Z

The Broken of Britain - The Disabled Peoples’ Campaign – has invited people to take part in a Blogswarm. It’s a month before the consultation on proposed changes to the Disability Living Allowance ends on 14 February.

You may be wondering what all this has to do with you. You’re not disabled. No one in your family is disabled. You have no disabled friends or acquaintances.

But you are angry about your kids’ university fees. Furious about the changes to Housing Benefit. Depressed about rising prices. Teed off about a million and one inconveniences that make your life more stressful and less full of savour.

So why should you be at all bothered by some obscure consultation exercise on a bit of the welfare state that you never even knew existed. Try starting here in The Guardian from last week.

This piece and the growing noise around the #ombh hashtag on Twitter should wake all of us up. Here is a group of our fellow citizens telling us they believe the help they need to live will be taken from them.
By the way that’s ‘need to live’ in the sense of necessary for survival not in the sense of ‘how will I pay my cleaner without the child benefit?’

Maybe I am a relic and hopelessly old-fashioned but I was taught that any society claiming the status of being civilised needed to pass a series of tests. The chief of these being how it treated its most vulnerable members. Whatever The Big Society or The Good Society mean surely one thing each must stand for is a regard for the interests of those whose voices get hard to hear. They are drowned out by ill-informed prattle in the hunt for votes or pursuit of circulation and ratings.

Judging by some of the stories about the high-life of our disabled fellow citizens it’s a wonder there isn’t a black market in causing injuries sufficient to qualify for the munificent DLA.

I know it’s unusual in this era of principle (not evidence) based policy making but I have profound respect for and pay attention to the opinion of experts.

Here we have a community of experts – and who is more expert than those living with these challenges every day and every night – telling their fellow citizens that the proposed changes to DLA will ruin lives.
I don’t think it’s a political point to say that we should park our own concerns just for a little while and listen to what our fellow citizens are telling us.

We just might learn something important.

Originally posted here

Am I Now To Be Punished?

2011-01-17T10:37:00.000Z

I’m a high level paraplegic as a result of a spinal cord injury as a young teenager. I’m a wheelchair user in receipt of the mobility aspect of the DLA, which I use to finance my car through Motability. I’ve always aimed high and have tried to live as full a life as possible, regardless of my disability, returning to school, going to university and subsequently working full time. All this has been made possible by the face that I am in possession of an adapted, reliable car from Motability to get myself around.

Due to my disability I am unable to use public transport; I don’t have the necessary strength or balance to board buses, tubes & trains independently, nor propel my chair around London streets. Obviously I don’t only use my car to travel to and from work; I drive to the supermarket for food, the pharmacy for medical supplies, hospital appointments, physiotherapy, exercise, social events, cinema, theatre and other professional engagements throughout the country.

The Motability scheme provides me with greater independence than anything else, without it I wouldn’t be able to afford to own a car and the costs associated with it (road tax, insurance, AA membership, MOTs and other maintenance costs). Consequently I wouldn’t have been able to attend university nor have a job so would be forced to stay at home and claim benefits. Who does that benefit exactly? If disabled people like me can’t work, the government doesn’t receive our taxes, we can’t contribute to society and we becoming an ever increasing burden. Isn’t that a huge step backwards?

I have always tried to inspire other young disabled people to have greater confidence and to strive towards their ambitions; I’ve always assumed it is better for disabled people to try and aim high and not let others place a ceiling over their aspirations. Am I now to be punished for aspiring to be successful, for trying to be as independent as possible, will it result in me losing the benefit that merely puts me closer to equal footing with my able bodied counterparts?

There are certain unavoidable costs associated with disability, I take them on board and I have always tried to make my life appear easier than it is, I don’t want to complain and constantly remind myself of things that aren’t easy, I prefer to get on and try to be resourceful and adaptable when faced with challenging situations.

I realise I’m very fortunate in my current situation, I don’t live in a care home but people who do and lose this benefit will be incredibly restricted, again it would be a massive step backwards, harking back to coach trips for disabled people to get out en masse for an hour rather than use their own DLA to make journeys with greater independence.

Disability Living Allowance is not relied upon by “scroungers”, it’s relied upon by people who really need it to improve the quality of their life; the number of fraudulent claimants is incredibly low compared to other benefit claimants. The expense of reviewing every person in receipt of DLA and rebranding it PIP will be huge, and the long term cuts really shan’t make the significant difference to the economy that the Government is forecasting.

What is most frustrating is that the people making these decisions appear to have little or no experience in living with a disability or it’s impact on one’s life, and worse still, they appear not to care.

Sent in via email

2011-01-17T09:00:00.000Z

Since Friday I have been trying to find the time and energy to write a post to contribute to the blogswarm event One Month Before Heartbreak. I doubt, at this stage, my writing will be anything ground-breaking, but I could not let this event go by without drawing attention to it.

I am not disabled, however I have plenty of first-hand experience to tell you that any of the blog posts you may read as part of this event are not unusual.

I had planned to write about the worrying trend I see in the public attitude to disability here in the UK. I have plenty to say about the increasing boldness of our media and politicians to talk about those claiming disability benefits as a burden on the public purse. I would probably have veered into the territory of writing about the misinformation that is out there about the nature of disability benefits and the dreadful language that is so casually used. And if I’d got started on the charity model of disability benefit provision that is increasingly talked of, or how the ‘most vulnerable’ will be protected, or the expectation that disabled people should be grateful and humble about any help they receive . . .well, I might never have stopped.

But it’s been a tough old week. I’ve been helping a loved one get through a current dignity-stripping DLA nightmare and it has taken its toll on me too. If the blogswarm had happened at another time perhaps you would have had more eloquence from me. I have already read enough posts tonight to know that anything I was going to write has already been covered wonderfully by others.

These events are unbelievably valuable. The ‘Blogging Against Disablism’ days have raised my consciousness an enormous amount. If you can find the time, please click on a few links in the Master List http://onemonthbeforeheartbreak.blogspot.com/p/master-links-list.html and hear some of the voices that we so rarely get to hear.

There are many, many posts worth reading from the personal to the factual; from the angry to the sad.

I will draw attention to this one http://onemonthbeforeheartbreak.blogspot.com/2011/01/welfare-cuts-and-callous-coalition.html as a good factual, journalistic piece.

Also to this one http://diaryofabenefitscrounger.blogspot.com/2011/01/you-will-never-take-away-my-shoes.html as one that made me both smile and cry a little with recognition.

Originally posted here

I Am Used To Shame And Guilt - I Am Disabled

2011-01-17T08:37:00.000Z

Sometime before Christmas I found myself unable to blog.

I hadn't even been blogging for long.

Surely its easy to write a little sometimes, with a break in between sentences what may even seem a small post. To manage my pain. Its called pacing.

I am fortunate the only benefit I claim is DLA (Disability Living Allowance). My husband works and hard. We have invisible disabilities in our family of four. A husband & son with Epilepsy, dyslexia, dyspraxia. Myself and my daughter ehlers danlos, with the addition of osteoporosis, osteoarthritis, arthritis.......    We live simply on a low income.

I found myself increasingly affected by the media and Government onslaught, regarding the status of my verity & probity. I am honest and so are my family. It is not my fault or my families fault that our genetic pool collectively includes the conditions it does. Does it make me a scrounger?

So somewhere along the line and this is where the writing of the blog became intertwined with a deep seated unhappiness about the treatment of those with disability in the UK. I became unable to write about how living with Ehlers Danlos was affecting me. Until this feeling became overwhelming I had felt liberated that I was able to write here. Perhaps in some small way helping another with this devastating, rare condition to cope a little better? Then little by little my confidence became shattered. Perhaps I am overwhelmed by guilt. I know not what the actual cause of this affliction was, except that it coincided with the assault on the disabled of Britain. Why guilt. I asked myself. It has taken me a long time to even be able to say that. Guilty for my disability?

Ehlers Danlos has a profound, lifelong affect on those who have it. For years I worked and struggled to do so. Eventually it became obvious to all that I am simply not fit to do so. This does not make me a scrounger. This is the truth. So we live together on a low income. My only source of personal money is via DLA. My lifeline. I could talk forever about the why's and wherefore's. Dislocation, subluxation, the fact that much of the money is spent on keeping warm. Is that my crime? Autonomic dysfunction, raynauds, pain..... means that the cold has a profound effect on my wellbeing both emotional and physical. If I get cold my body temperature drops too fast and I become hypothermic. Is that my fault?

An able bodied person could possibly go out for an invigorating run to warm themselves. I smile wryly to myself, the memory of running an obscure one, you see even as a child I couldn't run. What one doesn't know one does not miss. There is more to my condition than getting cold. This is just a small example of the additional expense of my disability. A tiny weeny glimpse into my life. To overheat is pretty devastating also. So the heat and the cold are equal enemies to me. Fans are expensive to run also. So is much of the paraphanalia required living in constant severe pain. I won't bore on that front.   Don't get me wrong, I like the feel of the wind in my hair and the warmth of the sun on my face just as much as the next person. Its the wild variations in blood pressure. The inability to stand on my own two feet literally that interrupt these natural pleasures. Its not just that, knees, ankles, bones in feet, hips, shoulders, wrists, thumbs, fingers, elbows sublux and dislocate with even minor pressure. This is not just a standing thing, turning over in sleep is enough to wake in searing pain. Muscles which have altered collagen stretch then stretch more meaning that with each daily multiple dislocations/subluxes injuries are ongoing and further weaken that which is already weakened. Do you know anyone who dislocates their finger touching the touch sensitive pad on a microwave.

This is just a taste of EDS. A starter. It is a complex, painful condition. It is not something I have made up, although many including myself spend many years being labelled a hypochondriac, until finally a diagnosis is made. If one has the condition severely, one is destined for a life of pain.

Do the government see my pain? When I am forced to take a medical in 2013 when my 'indefinite' award comes under scrutiny. Will I have to endure the humiliation of a medical which will be undertaken by a doctor who in all honesty will have no clue as how to appropriately examine the severely hypermobile patient. Why should they know. When many consultant rheumatologist's shake their heads and wonder why the patient before them is so debilitated. This rare condition also has few specialists who have an innate understanding of the complexities of how it affects each individual with it. This medical examination which I am happy to comply with, I don't have a problem trying to explain to a doctor? who cannot see my altered collagen about the effect it has on my life, my body. I have nothing to hide, nothing. But how much will it cost to essentially go through it all over again? To re-apply for something which I have already been deemed eligible for? Seems nonsense to me.

I am honest, if my condition improved I would let the dwp know. In fact I would let everyone know. This is not a condition where my physical capabilities improve. My world is small enough as it is. To face the scrutiny, the humiliation, all over again. The thought of this is tipping me over into a deeply unhappy place.

Is it not enough that every waking moment I am wracked with pain. I dream pain at least I thought I did. Now I know having communicated through the blogosphere to others with EDS that I am not dreaming pain. I sleep an unrestorative, interrupted sleep IN PAIN.

Until the recent persecution of the disabled began, aged 46 I was beginning to feel that the relatively small amount of money I receive from DLA was something I need not feel guilty about. After all we live do we not in a democracy. I contributed via taxes etc. for a long time. Now overnight apparently I am a scrounger. My debt to society is too great. Perhaps they should put us disabled up against the wall and shoot us. Aiming for the perfect race, perfection. All humans are flawed some more than others. When I gave birth to my daughter all those years ago I didn't know I had EDS, I did not know it was genetic. Should I have denied the world her vibrancy, her very being because she is not genetically perfect.

So just when I was finding that I could reach out via this blog and gain inner strength from other bloggers. I found myself - polaxed. Crippled in another way. Because apparently I am not good enough, to warrant respect. My privacy invaded, my bodily functions, the most intimate of functions shared with strangers, where is the respect there. Shall we look to our sisters who chained themselves to railings to get a vote, to be heard. I thought in part much of our fight had been fought. Equality it is surely some sort of sick joke. To re-apply for DLA or pip will be a humiliating, degrading and depressing process.

I am not against reform, I am not against change. I am however appalled that the very weakest in our society are being bullied so.   I have a message though. Beware be very aware that those that are being picked on here are used to pain. Bring it on. For we are stronger than you think.

A year ago I was awarded an indefinite award of DLA. Previously to that I had been awarded three yearly awards. For the preceding years as the three years ran out. I braced myself (those with EDS may be smiling wryly here at the double entendre) braced myself for the invasion of my privacy, the explanation that yes my husband has to perform intimate caring for me, this I explained in detail and the rest. I will do it all over again. Still thinking that surely it should be enough that my GP could write a letter without actually having to go into intimate detail over and over again. He could outline my condition and the limitations it has on my ability to function independently.    Will this save the government money all the new pip pip pippety pip. I think not. Even changing all the logo's on the websites, the headed paper, the paying the IT consultant's to programme, etc will probably cost more than is saved.

DLA is actually the least fraudulent of all benefits. A tiny minority and surely they must be a little ill to be willing to lie so extensively in order to be in receipt of money which for the truly disabled is in fact a lifeline. Enabling us to have a little self respect.

It seems that now not only do I face life with a disability so crippling I sometimes wonder if I did something bad in a former life to deserve such a thing; I also face the guilt, shame, and relentless invasion of my privacy simply because I was born disabled.

I am not sure how much of what I say makes sense anymore on this blog, which is why comments have been randomly latterly turned off. I have turned them back on but please don't feel obliged to do so. Particularly if you want to stop by to say, if I can type this I don't deserve DLA. In truth, and I don't know why I feel obliged to explain, it has taken me in small chunks over a week. With the additional help of extremely potent pain killers and good pain management techniques. Another example - the need to explain even as I write here, that the disabled of Britain are in fact being targeted in an underhand, unfair and inhumane manner. Its obvious this supposed consultation before the inevitable changes to DLA take place that there is a sinister undercurrent at work that only the history books will unveil. Long after I have left this world.

Others are so much better than I, at campaigning, I doubt very much whether my one small post will change one single thing with regard to DLA. But I am used to shame and guilt. I am disabled.

(By the way I have worked out as I write again a little of why I could not do so, I think I was worried that I was pitied. Along with the government/media induced guilt. For the record, the majority of disabled, sick people understand that pity is futile. I was worried that I was moaning over and over again. Well at least I do it here instead of over and over again at OH! Working out along the way that worrying about what I may write, have written is just me and anxiety. Its like the tv, turn it off or change the channel if its boring, purile crap).

I just read this and although I can't do much of the list of want to's in the linked post it is food for thought and I think I should shed the guilt! Silly me, they cannot steal my dreams, yet... Read & enjoy, ...... http://diaryofabenefitscrounger.blogspot.com/2011/01/you-will-never-take-away-my-shoes.html?spref=tw

Originally posted here

One Month Before Heartbreak Will Continue!

2011-01-17T07:00:00.000Z

When this posts it will be 7 am Monday. As the first One Month Before Heartbreak post when live on this blog at 7 am Friday, this post marks 72 hours of non stop posting, every 30 minutes.

I am completely and utterly blown away by the response we've had to the campaign and how big it's gotten. I couldn't have done it without every single one of the people who have been involved. Thank you doesn't seem like it's enough.

We do have some more submissions which will be posted later. And we don't plan to stop accepting them so please keep sending them to us. That can be done via this e-mail

The pace will slow down because it has too. As I've said before I have a disabled and so do all of my back up team. We've all pushed ourselves this weekend because we believe in this. But now we are all exhausted and need to rest and recover.

In the meantime if you want to help why not e-mail your MP about us?

We have a petition on DLA you can sign

If you want to make a submission to the consultation on DLA, you can do so here

In the coming days I hope to write a thank you post and round up in greater detail. For now can I just say a heartfelt thank you once again and assure you that One Month Before Heartbreak does not end here.

Emma Crees

What Is DLA?

2011-01-17T06:30:00.001Z

Transcript for 'What is Disability Living Allowance' video

2011-01-17T06:30:00.000Z

Text at the beginning reads: "What is Disability Living Allowance (DLA) and who gets it?"

Disability Living Allowance or DLA is a benefit paid to eligible disabled people. It's a cash benefit and it's not means tested and it's not taxable. And the reason that it's not means tested and it's not taxed is because it's a recognition that the costs of disability are fixed. And that whereas you can economise and chose to shop differently or do without to make ends meet when it comes to the costs of disability there is no alternative.

Disability Living Allowance is paid to people under 65 who need help with their personal care or supervision or help with getting around. It's paid in two components. The care component and the mobility component. The care component is paid in three rates. It's lower, middle and higher rate and it's for help or supervision with personal care needs. Now that means things, basic things, like to qualify for lower rate care you have to be unable to prepare a main meal for yourself. Not a ready meal that goes in the microwave but food that goes on the grill or on the hob or in the oven. So you might qualify for that if for example you have very severe arthritis in your hands or your feet and you can't stand to cook or you can't safely transfer a pan or chop anything up.

Middle rate care is paid for people who need more substantial help either during the day or during the night. It might be paid if you need supervision to make sure that you're not putting yourself or other people in danger for example if you have epilepsy and you don't know when you're seizures might occur. You need someone around to ensure your safety at all times. If you have perhaps very severe behavioural or learning problems you might somebody with your during the day time to ensure that you're kept safe.

For the higher rate of the care component you must need help both during the day and the night and that help must be substantial. So you would need help for example going to and from the toilet and help perhaps getting off the toilet. You might need help to turn over in bed at night. Or if you have breathing difficulties somebody there to keep an eye on you.

It is only paid to those with much more severe disabilities. For example if you have a hip replacement and you're fully recovered in six months you wouldn't qualify for disability living allowance. But you would if your hip replacement failed and it left you permanently disabled by it.

The mobility component is paid at two rates, the lower and the higher rate. The lower rate is for people who need somebody with them to ensure their safety or to supervise them when they're outdoors. That might be because they have learning disabilities or challenging behaviour. It may be that they've had an acquired brain injury and they forget their way home all the time.

The higher rate of the mobility component is much more difficult to get. And for that you must be either completely unable to walk or considered to be virtually unable to walk by the reason of your physical disabilities. The care component and the mobility component are paid either seperately or together depending on how the person qualifies.

The mobility component. The higher rate component gives people access to the motability scheme. They can either contract hire or purchase a vehicle of their choice through the scheme. So the money goes straight back into the economy. For some disabled people that will mean purchasing a motability vehicle. But for others it's used to purchase a power wheelchair or scooter. Because those tend to be very expensive and although the NHS provides electric wheelchairs its only if you need to use a wheelchair full time indoors. And they will only be provided with that wheelchair after using a wheelchair indoors for a minimum of 6 months. Now it's obvious to see that a lot of people will fall outside those criteria and won't be eligible for an NHS wheelchair but they might be eligible but they might be eligible for the higher rate mobility component of Disability Living Allowance and so able to use the motability scheme.

Text at end: What is Disability Living Allowance (DLA) and who gets it was produced by Kaliya Franklin of The Broken of Britain.

Further information about DLA is available from DirectGov

Blogs about DLA are collated here

Transcript very kindly provided by Emma