People Like Me #badd2011

Please click the "CC" button at the bottom right of the frame for subtitles / captions.

This is my vlog for Blogging Against Disablism Day 2011. It's not terribly articulate but I was rather tired and nervous.

Filmed and edited by Stephen.

*That* Wedding

We're constantly being told that us benefit scroungers are a waste of money. Iain Duncan Smith, the minister responsible for these things, said:

“In prosperous times, this dependency culture would be unsustainable. Today it is a national crisis.”

From The Telegraph

I am forced to live off the state due to illness. My weekly income is £67 a week short of the amount recommended by the Joseph Rowntree Foundation for a minimum standard of living. I am apparently "unsustainable" at best, responsible for a national crisis at worst. (Love how it's not the bankers that crashed the global economy, oh no. It's me and my sickly ilk.)

By "reforming" (read: demolishing) the welfare state the government aim to save £18bn over four years. I know they're staggering the cuts so the fourth year will be more austere than the first, but for the sake of making the maths easier (because I'm a mathematical dunce) lets say they're planning to save £4.5bn a year.

The Windsor family don't live on next to nothing, they have millions of taxpayers money. The same taxpayers that begrudge me having the little bit of money that's not enough for a minimum quality of life. The Windsor family live in palaces, I live in a council flat that's not accessible enough to really meet my needs but if I move my tenancy will be insecure. There's no such insecurity around the Windsor family's multiple residences. The Windsors have staff waiting on them to meet their every whim while disabled people who aren't incontinent are being told to use incontinence pads because they're not allowed the care hours to safely use a commode.

The Windsors and I both depend on the state for our income. Why is there such a discrepancy in the amounts and qualities of life? Yesterday Morrissey quite appropriately pointed out that the royals are basically benefit scroungers too.

Which brings me to today. The Prime Minister declared today a bank holiday to commemorate two people tying the knot. The cost of that holiday to the economy? An estimated £2.9bn. Policing the event cost an estimated £20m (partly because the police were on double time due to the bank holiday).

So in one day the government has blown at least £2.92bn on 2 people getting married. That's well over half of what they want to save in a year by slashing benefits. In fact, when you bear in mind that the first year of benefits cuts is the least brutal of the lot, that £2.92bn is probably around the mark of what they're hoping to save this year.

And Iain Duncan Smith says we're in a "national crisis"...

Edited to add David's comment in response to this post because he put it so much better than me:

It isn't about whether we're Royalists or Republicans, it isn't about whether it should or should not have been a Bank Holiday, it's about the government saying that we have a critical need to make savings in every area possible (except where it might inconvenience their friends' profit margins), a need that is so critical it justifies their assault on disability benefits, yet simultaneously having the fiscal fluidity to throw away the taxes on £2.9Bn. It's about whether we have a debt crisis, or whether the Tories say we have a debt crisis, which are not at all the same thing.

An exercise in losing DLA

This news story scares me. That the story will continue to provoke vigilantism towards us scares me.

The case itself I'm kinda "meh" about. We know that it's impossible to create a fraud-free welfare state. The DWP acknowledge that DLA has a fraud rate of 0.5% (see page 8 of this DWP report) so that means that one in every 200 claimants is a fake and this woman was seemingly that one in 200. It's worth noting that DLA has the second lowest fraud rate of all benefits, the only benefit with a lower fraud rate is the old age pension.

It's the news story that bothers me, the implication that if you can exercise that you're not really disabled.

On days when I'm well enough I swim and go to the gym. Exercise is important for everyone because it improves your energy levels, helps you sleep better and the endorphins are excellent for your mental health. And energy, sleep and sanity are all areas in which I have plenty of room for improvement.

But on top of that I have my impairment-related need to exercise. Osteogenesis imperfecta causes poor muscle tone so by default I'm a weakling. The stronger my muscles are the better able they are to compensate for my crappy tendons and ligaments. So stronger muscles means less joint pain. And then there's the fact that my bones already break easily and immobility has been proven to reduce bone density further. So by going to the gym I'm doing the NHS a favour by reducing my likelihood of breaking bones thus saving their resources to treat me.

Surveillance footage released by the DWP showed the mother of two using the treadmill for 55 minutes at the Spindles gym at Liverpool's Adelphi Hotel.

She was also seen using the free weights, resistance machines and the swimming pool.

OK, I can't use a treadmill. I can barely walk on a solid floor. I can't walk on moving vehicles like trains, I just fall down. Attempting to use a treadmill would be a fast track ticket to A&E. But I do use free weights, resistance machines and I swim. This story is going to make my fellow gym-goers think I'm a fraud.

There's a mass cultural perception that wheelchair users are all paraplegics. I remember once in my stand up comedy days I crossed my legs in the middle of my set. This prompted a heckler to shout "faker! You moved your legs!" (It was actually a good thing. I took him down so brutally that I got the audience totally on my side and had a great gig.) I can't use any gym machines that involve standing up like a treadmill or those things that emulate the actions of stair climbing or roller-blading; but I can and do use machines that work the legs like a recumbent exercise bike and a rowing machine. It would be very easy for someone to make a mental note of my name by glancing at the hosptial-esque paper wrist band they make you wear in the gym (to prove that your membership covered that session and you're not someone who's just wandered in). Then with my name they could phone the DWP's fraud hotline or The Sun's "shop a scrounger" line and accuse me of being a faker because they saw me peddling an exercise bike.

Then there's swimming. As a teenager I swam a lot. I did briefly make it into the GB Paralympic team (for a week and it all ended in tears). I may no longer have the fitness to swim like the clappers but the skill level still resides so I'm a faster swimmer than your average non-disabled person.

I gave up on public swimming sessions because they're so awful. You get people doing doggy paddle in the fast lane. You get people walking up and down the fast lane. You get men with long arms and no lane etiquette swimming butterfly down the middle of the fast lane with no concern for who they smack around which really isn't a good idea when you've got brittle bones. So I joined a masters team (masters = swimming for over 25s) so I can swim in safety because there's a coach overseeing the session to police the lane etiquette. And being coached has the added bonus that you can't just stand at the end of the pool dawdling, you really get some work done.

The other swimmers in the club all seem to be good people and I'm not worried they'll accuse me of being a fraud to the DWP. But at that leisure centre there are 2 pools next to each other separated by windows. Someone in the public session in the adjacent pool could easily see me swimming, get huffy about the fact that the fat disabled dwarf is faster than they are, follow me out to my car and phone the DWP to say "I think the woman who drives AB34 EFG is a faker." The DWP could then check my reg plate against the DVLA's records and track me down.

Getting the exercise I need to keep my skeleton in the shape it's in and not have it get worse already worries me. This story makes exercise that much more scary. Would the BBC really rather I just sit on the sofa and do nothing on the days when I am well enough to function?

Next year will the DWP be reviewing the entire Paralympic team using the television footage as "evidence" that the athletes are too fit to be disabled?

Edit 4/5/11: My gym-going days may soon be over anyway. I just found out that from July my gym fees as a disabled person using my local authority gym will go up by roughly 2000%. That's neither a typo or hyperbole, I didn't mean 200%, no. The London Borough of Camden are putting gym fees for a disabled person up to just under £10 a month from the previous level of circa £6 a year.

Blogging Against Disablism Day

It's the Sixth Annual Blogging Against Disablism Day on Sunday (see here), and we're operating in a target-rich environment given the way the government and Civil Service are behaving at the moment. Several of us here at WTB are hoping to have pieces ready for the day - I'm just lying down to write mine - but BADD is open to participation from all and, like I said, it's a sadly target-rich environment right now. Contributions don't have to be about the political environment, they can be about the way disablism strikes you in your daily life, but the more who contribute, the more we can get the message out that Disablism, whether political or personal, is simply not acceptable. So if you're a blogger, not even necessarily a disabled blogger, and you have seen the disablism out there, then I urge you to consider joining in.

Labour: Still in Denial

I’ve been struck by several related issues over the past week.

First David Cameron launches a hate-filled attack on disabled benefit claimants – the Prime Minister of the country openly advocating bigotry on national news – and the best Labour can manage is Stephen Timms, Shadow Minister for Employment, wetly agreeing with him that maybe people whose disabilities leave them subject to addictions or obesity don’t deserve benefits. I’m sorry, did I hear that right, a Labour politician endorsing deliberate and calculated advocacy of discrimination against disabled people by the Con-Dem Prime Minister, discrimination that will inevitably spill over to affect all disabled people, obese or not, benefit claimant or not, in direct contravention of the Equality Act and the UN Convention on the Rights of Disabled People? So you would assume there would be a double outcry from Labour, Ed Milliband staking Cameron through the heart for his bigotry at Prime Minister’s Questions while Timms is rapidly stripped of the Whip and expelled from the Party. But no, nothing.

Now Neil Coyle, Labour councillor and Policy Director of the Disability Alliance, has published a piece at Left Foot Forward, which, while pointing out deliberate distortions in DWP press releases, goes out of its way to endorse ESA, and therefore the WCA, as responsible Labour policies working for the betterment of disabled people. I’m sorry, I must have missed the moment I slipped into an alternate reality….

It’s truly sad to see Labour still claiming that ESA was a positive move for disabled people, whereas the truth is that they, not the Con-Dems, designed the ESA system to deliberately distort the assessment process and force genuinely disabled people out of the disability benefits system and onto the harsher, uncaring, disability-hostile JSA — been there, done that, had to complain to ministerial level just to get JCP to acknowledge my disability. Talk to individual disabled people and they will tell you of their genuine fear of ESA and describe the horrific abuse of the WCA system by ATOS and their tame quacks.

This isn’t a new Con-Dem plot, it is the system working as Labour designed it. Deliberate demonisation of disabled benefit claimants by DWP press-releases coordinating hate-ridden tabloid vitriol didn’t start under the Con-Dems, these press releases have been happening for several years now and disabled people were expressing their concern while Labour were still in power. The farcical plans for WCA and DLA assessments based on an access-all-areas imaginary wheelchair (yes, really!) aren’t something the Con-Dems dreamed up since coming into office, this is another Labour policy idea they are implementing to the detriment of disabled people. And while individual disabled people are banding together in groups like DPAC, Broken of Britain and WTB to fight for their right to be treated as equals and for the system to recognise and cater for the reality of their disabilities, Ed Milliband sits on his hands and does nothing for us beyond occasionally quietly admitting that he agrees with Con-Dem policy on the matter — the betrayal of disabled people by Labour is absolute.

If the Policy Director of the Disability Alliance truly believes that ESA is a positive step for disabled people then it is time for him to resign, because he has forsaken any claim to understanding how disabled people are being affected, to believing in ‘Nothing For Us, Without Us’ and has betrayed the confidence of disabled people in his ability to place their needs above party-political allegiance, and the same can be said for Labour as a whole.

Where is the party that is supposed to stand for everyman, to fight for real equality, to ensure a system that is fair for all regardless of class, creed, colour or disability? Is it sleeping, licking its wounds, is it sacrificing us for the electoral expediency of a good headline about people suffering under the Con-Dems, or is the unpalatable truth that Labour is just as actively disablist as the Con-Dems?

Abandoned Claims

Originally posted at This Is My Blog in response to a Daily Mail article. Unfortunately, today, the Telegraph and the BBC got in on the act...

Woke up this morning to see that a certain right-wing rag has surpassed itself in the propaganda it chooses to spout about ESA.

I'm not going to link to it because it will only upset me and every reader.

The headline asserted that 75% of those who claim ESA are found "fit to work".

This was then broken down that 75% of those who claim ESA were either found "fit to work" or abandoned their claims before testing was complete. It proposed that the abandonment of a claim meant that the claimant was clearly "trying it on".

Legitimate reasons why an ESA claim may be started and then abandoned:

• The claimant dies.


• The claimant gets better, be it a miracle or a new treatment or being bumped up the waiting list for surgery or getting private treatment.


• The claimant, having lost their job, is offered support and a place to stay by their parents or their children. They decide to abandon their claim and re-start it once their move is complete.


• The claimant looks at the highly personal questions on the form and says "you know what, I'll never be this desperate for money, prostitution is less demeaning."


• The claimant wins an insurance or compensation payout that enables them to survive without benefits.


• Due to their condition, the claimant is unable to understand the importance of filling in the form or unable to remember that the form needs doing.


• Due to their condition, the claimant is unable to fill out the forms - perhaps they have a brain injury or learning disability and cannot read and/or write, perhaps they have issues with their hands and cannot physically hold a pen, perhaps they have a mental health condition that causes panic attacks every time they approach the form.


• Due to their condition, the claimant is unable to access support to fill in the forms - for instance they are unable to go out, they do not yet have formal Social Services support, and their CAB is overstretched with permanently engaged phone lines (I have personal experience of urgently needing to get to the CAB but having to wait until support is available).


• The claimant completed the form, but due to their condition, they are unable to travel to and from the medical examination centre alone, and they are unable to secure help and/or funding to allow them to attend. Because their level of impairment does not exist until ATOS say it does, this is not a valid excuse for non-attendance. (I had this issue with my DLA a few years ago).


• The claimant is sitting at home with the heating off, desperately waiting to hear back from the DWP about their claim, which the DWP has lost.

If it was any other publication (I hesitate to use the term "newspaper") I would be shocked and appalled by the deliberate lies and misinformation being used to attack disabled people. Unfortunately, I'm getting used to it, and so is everyone else, and all these little drops of poison are being allowed to drip on into the public consciousness unchallenged.

A useful comment was also added to the original post, by a commenter called Nemonie:

There is also the fact that if you are on JSA and become ill or need surgery, break your leg etc. So that you are considered not able to look for work they will tell you to open a claim for ESA until you are better, which may only be a few weeks. You can also apply for ESA if you work and get ill but don't get statutory sick pay or have run out of statutory sick pay. Again in this case you may only need to claim for a short time.

Deserving

A lot of hoo-ha in the UK press at the moment about disability benefits. The essence of the story is that the government reckon 80,000 claimants who have what they consider "immoral" illnesses like drug/alcohol dependency or obesity are a justification for their plans to chuck about 570,000 genuine claimants off the disability benefits on which they depend.

According to the BBC article, the Prime Minister's position is thus:

The prime minister denied the government was stigmatising people who were genuinely ill but said the public believed recipients should be "people who are incapacitated through no fault of their own".

No fault of their own, what a strange concept. Does the man intend to start assessing not only the practical limitations of a person's condition, but also the degree of fault involved?

He continues:

"But there are some who are on these benefits who do not deserve them and frankly we are not doing our job looking after taxpayers' money if we do not try and make sure these people go to work."

Benefits are not given based on being deserving. They are given based on need. Going to work or not isn't based on being deserving. It's based on ability. An idiot who drove while high/drunk/ill/tired and smashed up his car and his head so badly that neither will ever function again is probably not considered very "deserving", but his needs will be pretty high and he's unlikely to work again. A young fireman who lost a leg while saving a helpless baby from a burning building is about as deserving as they come, but his needs, while substantial, will be easier to adapt for, and with a relatively small amount of equipment and support the chances are he will be able to do some work.

I wonder... if someone were declared Fit For Work despite a serious health condition, and in the course of making the effort to keep up with the Mandatory Work Related Activity requirement of JSA, their condition permanently worsened to the point where even the DWP and ATOS accept that they are too ill to work - would it be their fault for not saying "I can't do this," and risking having their JSA stopped?

Even taking the sort of example that I think the government mean, it's worrying. Let's imagine, for a moment, that we have a claimant, an alcoholic, and that his alcohol dependency didn't evolve as self-medication for a pre-existing but untreated mental health condition. Let's accept the government assumption that he really did skip gleefully out of the careers office at school saying "I've got a better idea, I'll get pished and the taxpayer will take care of me, bwahahahahaha!" Fixed this in your head? Good.

Now we're twenty years down the line, he has no friends and family left apart from other alcoholics, no work history, very few self-care skills, and all the physical and mental effects of long term alcohol abuse, which if you're not too squeamish you can look up for yourself. There are very few jobs that such a person could do, and even fewer employers who would take such a person on. Then what happens?

Cameron's despicable lie is that his ideal outcome involves people with dependency issues being treated and then helped to find jobs. That will never happen. It is far too expensive, and without wishing to sound defeatist, in many cases it's an impossible outcome.

We could put him into a treatment programme - one that isn't dependent on turning up sober (unlikely), and that won't send him back to his bedsit and alcoholic pals to undo all the work that has been done (so we're looking at an open-ended residential placement - unlikely, and extremely expensive). Then once he's sober, he'll be allowed to access NHS treatment for the underlying mental health conditions that will have developed (unlikely and expensive) and the physical damage as well (amazingly expensive). We'll have to hope that during those years - yes, years - the DWP don't choose him as an easy target and put him under so much pressure that he cracks and starts drinking again. Eventually, after many years of intensive treatment, a lot of money, even more hard work, and a dollop of luck on the side, he might be able to re-enter some sort of employment for a few years until he (a) retires, (b) dies of the irreversible physical damage, or (c) falls off the wagon again.

Cynically speaking, and please don't think I'm advocating this, it is in fact cheaper to allow him to quietly drink himself into an early grave without intervention.

Cameron might talk up "treatment" and "employment" but until we see actions to that effect - boosting rather than cutting the support projects* - what he really means by "getting people off disability benefits," is saving money by consigning them to the lower unemployment benefits.

The benefits system is supposed to be the last safety net. It does not provide a luxury lifestyle, it doesn't try to improve matters, it merely attempts to go towards providing what has been defined as the minimum amount of support necessary for that person to live in conditions that can be considered acceptable for a human being. Reducing that support does not propel people into sustainable jobs, it just makes their lives more difficult and in many cases perpetuates their problems, or in a few very sad cases, hastens their deaths.

*Yes, the article speaks of a £580m investment. However, this is from "private and voluntary organisations", eg not the government, and frankly it's a drop in the ocean compared to the cost of effective long-term treatment and support for that many addicts.

Cross-posted to This Is My Blog.

On being on benefits while fat

[Image is a vintage food advertisement from 1895. There is a drawing of a young woman with package of Loring's Fat-Ten-U food tablets and package of Loring's Corpula, a fat-producing food. The text says, "Get Fat on Lorings Fat-Ten-U and Corpula Foods".]

David Cameron today has said that taxpayers [feel that incapacity benefit] recipients should be "people who are incapacitated through no fault of their own", that is, not those who are ill because of alcohol or drugs, or because they are overweight.

According to these statistics, the number of people who claim disability benefits because they are obese, is 1,830. Compare this to 398,700 who claim for depression. It is hardly a raging epidemic. There may, equally, be other people who claim benefits for a particular impairment, while also being obese, and this is a whole other matter entirely. Yet here we have a new message of hatred from the government.

I am on benefits and I am fat. I am not on benefits because I am fat, but I am on benefits because I am ill, and I am fat because I am ill. This is many layered, but before I was ill, I was slim. Too thin for a good while, in fact.

Then I started taking psychiatric medication. The more common antidepressants didn't affect my weight, but when I started taking neuroleptic medication the weight piled on. At the time, Olanzapine was the 'wonder-drug' of choice by many psychiatrists, and I was put on it at a time when a lot of other mental health service users were. We all gained a significant amount of weight, very quickly.

I'm not on olanzapine any more, but I take other neuroleptics and a newer antidepressant, both of which have the same effect on weight. I have, at times, wondered whether I should come off them, to lose some weight, but I made a choice to do all that I could to prevent big relapses, and stayed on the tablets. Believe me, I would be costing the state a lot more if I came off all my meds and lost some weight, but spiralled into a paranoid psychosis at the same time.

These days I also have the added issue of more limited mobility, which means that I often can't do any kind of exercise. Many disabled people face this same situation, and many disabled people take medications which can cause their weight to rise - not just psychiatric meds, but steroids, certain painkillers and all sorts of others can affect appetite and weight.

And if I can't stand up for long enough to cook, or manage to chop vegetables or stand near the stove, then I also can't eat well. If I can't go out to buy fresh food, or can't carry anything home, it is virtually impossible to eat a healthy, balanced diet.

Now, I don't have a problem with what my weight is. It is how it is, I don't hate it, it's just life. I don't claim benefits because of my weight, but if I wasn't ill or disabled I probably would weigh less. However, I am, and it's a small price to pay for relative mental stability (very relative!).

But because of Cameron today, as well as benefit claimants being written off as lazy, scroungers, liars, exaggeraters and malingerers, the Daily Mail readers of the world will be happy to assume that every overweight person on benefits is on benefits because they are overweight.

I don't have a problem with those who are, by the way, but there are many fat disabled people, just like there are many fat non-disabled people. But those who are believing the hype now have an extra line of attack against the country's benefit recipients. An extra line of abuse for us to receive.

(The image is in the public domain, and was made available by Chuck Coker. This blog post is cross-posted at incurable hippie blog).

Now Even the BBC is Jumping on the Crip-Bashing Bandwagon

It's bad enough when the Tory Rags lay into us after the latest crip-hating press release from the DWP, but in this article even the BBC seems to be jumping on the bandwagon. Oh, there are a few quotes from charities saying it just isn't good enough, but when someone sets out to deliberately villify people for being disabled, then the BBC is required by its Public Sector Equality Duty to challenge that argument, not repeat it. Even, perhaps especially, when the person setting out to villify disabled people is the Prime Minister.

I've commented on the article itself (comments section at the bottom of the page) saying:

"I am appalled by the tone of this story, which doesn't just pander to, but actively participates in the deliberate demonisation of disabled benefit claimants, in direct contravention to the BBC's Public Sector Equality Duty. I will be following this comment with a formal complaint. As a disabled person with a complex spinal problem I feel directly attacked by this article. I am not a benefit claimant through choice, I spent four years fighting a discriminatory employer to remain in work. My situation has deteriorated to the point even the new system recognises that I am currently unable to work, but the government persists in demonising all disabled benefit claimants. It is bad enough that I find myself attacked on a daily basis in the Tory rags, but to now find that I am being attacked by the BBC is beyond the pale."

I've also filed a formal complaint about the article on the BBC's complaints page:

"Deliberate demonisation of disabled benefit claimants

The article is an uncritical parroting of a DWP press release intended to stigmatise disabled benefit claimants in order to increase public support for changes to the benefit system. The reality for disabled people is a rapidly increasing climate of fear in which, benefit claimants or not, we face attacks in the press and abuse and even physical attack in the street. Under the Public Sector Equality Duty the BBC is required to take action to promote the equality of disabled people, this article instead sets us up as a target for abuse.

I fought for four years against a discriminatory employer to avoid being made redundant because of my disability. I have made every effort possible to remain in work and now to find work, but the reality is that my disability is worsening, not improving and even the new system accepts that I am currently not able to work. Yet I find myself being attacked at every turn by the DWP's campaign and its sycophantic press. My own disability is a complex spinal problem that limits every aspect of my life, yet the DWP reduces that to 'back problems' and a nudge-nudge, wink-wink implication that I'm just swinging the lead, because 'everyone knows' back problems aren't serious. Just because 'everyone knows it' doesn't make it true and the BBC is mandated by its Public Sector Equality Duty to actively challenge the casual discrimination against disabled people implicit in attitudes of this kind.

And what applies to one disability applies to all, and the BBC's acquiescence in the DWP's deliberate disablism is implicit in the article's outright attack on claimants with addictions or obesity. Despite their misuse as diagnostic labels by DWP, addiction and obesity to the degree of being unfit for work are almost universally symptoms of wider psychological or physiological disorders, for instance Prader-Willi Syndrome. To attack a benefit claimant for being addicted or obese is to attack them for being disabled, which is disability related harassment in contravention of the Equality Act. To participate in that harassment calls the legality of the report into direct question and in my opinion the BBC is not simply failing to meet its legal obligation under its Public Sector Equality Duty but actively participating in a hate crime.

It doesn't matter if the Prime Minister is the one to say it, any statement leading to a disabled person feeling harassed or intimidated is disability related harassment and as a disabled person I find his statements offensive and intimidatory and I view the BBC's unquestioned repetition of them in precisely the same light.

My fears and the perception of being attacked by government and media at every step are not simply my own, they are echoed by the vast majority of disabled people I know. We find ourselves increasingly living in a climate of fear engendered by a deliberate demonisation of disabled people by government and DWP and their allies in the right-wing tabloids intended to allow them to gut support for disabled people while convincing the non-disabled population we are nothing but feckless parasites. I and others have been harassed on the street by complete strangers with no idea if we are benefit claimants, simply that we dare to be disabled in public is enough to trigger their xenophobic hatred and abusive claims that we are benefit frauds and faking our disabilities. It is the BBC's responsibility to highlight this behaviour as unacceptable, not serve as its cheerleader. I have given up hope of being treated as an equal in the Tory rags, but I had expected better of the BBC."

I expect they'll just try to write it off, saying that quoting a charity or two gives the article balance, but we all know that isn't the impression casual readers will get, and the difference between the BBC and the Tory Rags is that the BBC is subject to the Public Sector Equality Duty and expected to take a stand against disablism. Or at least that is the way it is supposed to be, sadly the reality now appears to be something else entirely.

If anyone wants to join me in complaining about the article, please feel free to use any or all of the words above.

Picnic and Party Against Atos - part 2

Benefit Claimants Fight Back have announced the details for their next protest against Atos:

As part of the National Week of Action Against Atos Origin, beginning on Monday 9th May, a second Party and Picnic against Atos will take place on the 9th May from 2pm at their Head Office in Triton square, near Euston.

Bring music, drums, banners, placards, food to share and brighten up the faceless corporate wasteland that is home to poverty pimps Atos Origin Ltd.

Musicians, poets, orators, ranters, shouters, all benefit claimants and supporters welcome. Please help spread the word, invite your friends and let's make this the biggest stand against poverty pimps Atos Origin so far.

Triton Square is on the North side of Euston Road, a minute or so from Warren Street tube and less than five minutes from Euston/Euston Square or Great Portland Street tube stations.

The Facebook event page is here. For more details of other events happening around the country Claimants Fight Back have details here.

I went to the last protest in Triton Square. It's actually a great and accessible place for a protest. There’s shelter if it rains or is too sunny, there’s things to sit on and there’s a couple of cafés a few yards away for acquiring refreshments and using their loos.

Hope to see you there.

Amateur Atos Assessors

Please note that this post isn't meant to be a dig at any of the individual people I've had this conversation with, it's a comment on the social situation when everybody feels the conversation is appropriate. So if you know me IRL and have had this conversation with me: I'm not being mean about you personally; I promise.

I've had a bit of a weird weekend. Quite impressively my health held up for 3 consecutive days; usually a sure fire way to guarantee to be ill on any particular day is to make plans to do something. I've had a lovely time, I've hung out with old friends, met some excellent new people, and consumed more cream cakes than I can count.

The weird bit about the weekend was the number of people that called me "intelligent". It's a little bit weird because I'm really not that smart. I think I just talk a lot and with that many words coming out some of them are bound to be a bit clever; and people remember the smart stuff and not "I just spilt orange juice down my own back." (A tip for the hypermobiles: Just because you're flexible enough to pick up the glass of orange juice on the shelf behind you without turning round to look at it doesn't mean it's a good idea.)

The other weird thing about being repeatedly called "intelligent" this weekend is that in daily life I constantly have it implied that I'm not at all. I'm not talking about that common stereotype that people with physical impairments must also have a cognitive impairment, I'm talking about something much more specific than that: I'm talking about the people that keep suggesting ideas for how I might be able to manage to work, as if I'm so stupid that I haven't thought through even the most glaringly obvious of options.

As I've mentioned before, I used to be a stand-up comic. Three and a half years ago - figuring my health problems were only temporary and that shortly down the line there'd be some treatment for me - I made the decision to quit before I pissed off every promoter in the country. On average I'm too ill to function around 2 days every fortnight, which would result in me having to cancel a hell of a lot of gigs at the last minute. It doesn't matter if you have a legitimate medical reason for dropping out; if you put a promoter in a tight spot by leaving them with a gap in their bill they're going to deem you "unreliable" and never book you again. And they'll probably bad mouth you to every promoter they meet.

So figuring my health was just a temporary glitch I made the decision to quit before I alienated all promoters, with the hopes that when I got better I'd be able to return and have people willing to book me. Except I haven't got better so if I were to return now I'd very swiftly find myself unbookable.

But people seem to think I'm an idiot who hasn't thought about (and doesn't think daily about) this and they come out with lines like "but surely you could just book a few gigs here and there?" (I refer you to my statement in my opening paragraph about how making plans is basically an illness guarantor.)

I also get people who seem to think that quitting stand up was a crisis of confidence, or at least that's what I derive from the statement "you should go back to it! You're really funny!"

The next question again assumes I'm stupid; the next question is always, always, "well why don't you write?"

"Because editors expect you to be able to meet deadlines..."

"Oh, yeah. I hadn't thought of that."

So do these people really, honestly, think that I'm smart enough to write but too stupid for the idea of writing for a living to have occurred to me? Or is there something else going on? I think it's the latter.

The current government and media campaign to demonise those claiming benefits seems to have turned everyone into an amateur Atos assessor. The "they're all fakers" propaganda is so pervasive that even people who'd like to think of themselves as left of centre (and, you know, not a cunt) feel qualified to make judgements on a person's fitness to manage to work because they're constantly being told that everyone can manage some kind of work if they really try.

These are people who (I hope!) don't deliberately and consciously think "Lisa's not really ill, she's just lazy," but because of the daily news stories and government briefings about how we're all skivers find themselves thinking it subconsciously. And this rhetoric is so dominant that a couple of months ago I was having a conversation with one of the most leftie and politically aware people in the country who said "now, Incapacity Benefit. That's the one with the huge fraud problem, right?" Despite the fact that the official fraud rate for IB is around 1% (see page 8 of this DWP report). That's just how ubiquitous the bullshit is.

Having to deal with actual Atos assessors is stressful and worrying enough without our friends and acquaintances thinking that they have the right to judge our fitness for work and make assessments about the kind of work we could be doing. Just because you read in the Daily Mail that we're all fakers doesn't mean it's true...

Disability Campaigners are fighting for all

It might sometimes seem as though disability campaigners are asking you to take an awful lot on trust.

We tell you that we are not opposed to all welfare reform, yet only write about the parts we disagree with. We point out that genuine support to find rewarding employment would be welcomed, but ask you to believe us when we say that it is the system put in place that fails us - and you.

You watch TV programmes and read newspaper reports that claim virtually all on sickness benefits are "scroungers" or "skivers", yet we keep pointing out that in fact fraud is the lowest of all social security benefits at just 0.5%. Perhaps we should spend a little more time acknowledging that many people on sickness or disability benefits would like to work and would welcome the chance to try.

If you happen to be aligned to a Conservative viewpoint, it's hard to continually hear that a policy is not only chaotic and mis-informed, but potentially dangerous and cruel. As a Labour leftie, I know all too well how frustrating it is when you have the best of intentions in government, but face a constant wall of opposition. If you believe passionately that work is the best medicine, it's hard to hear that for some, that just isn't the case.

Nonetheless, when something is wrong, it's wrong.

Employment Support Allowance (ESA, the replacement for Incapacity Benefit) was wrong when Labour introduced it and it's just as wrong today. It was based on flawed assumptions and spurious research. In 13 years, it was the first thing I openly opposed my own party over. It was clear that it would cause great suffering and injustice and I simply could not let it go unchecked.

Worst of all it might just sound like self interest : "Don't cut our benefits, don't make us pay."

Some ask how I (and my campaigning colleagues at The Broken of Britain) manage to write so passionately or find time to research our work, yet don't take a "real" job. Well this is why.

We are making ourselves (more) ill. We are pushing ourselves too far. Daily, we take on too much and fight too hard. Yet at some point a kind of fatalistic "nothing left to lose" attitude crept over us. We don't have wealthy supporters or powerful voices to fight our cause. If someone wants an "expert" for a radio show or newspaper column, it has to be us. There is no-one else. If someone wants an article within the hour on a particularly pernicious benefit story, we have to write it. There is no-one else.

But we're doing it for you too.

Sickness or disability can happen to anyone at any time. You might think that you would cope, work on through, but we who have been there know that sometimes there comes a time when you simply can't. We know that life can change in a heartbeat. That cancer or car accidents, disease or despair can strike anyone at any time - from the CEO who has a breakdown that he thought could never happen to him to the student diagnosed with leukaemia.

We know that skis can come lose or motorbikes can spin into ditches, crushing our hopes for the future as surely as our limbs. We know that defective genes or delinquent organs can lurk as surely in a lawyer as a clerk.

And we know, through terrible experience that when, God forbid, the lottery of life comes calling, you have a right to dignity. Not wealth or special favours, just a little basic provision and a knowledge that we live in a society that won't let you fall.

So, we have to fight. We have to be controversial. We have to grab your attention. We have to find ways to have our voices heard by a media and political class who largely don't want to know. But I just wanted you to know that we're fighting for you too.

Ignorance

On Thursday afternoon I attended a protest outside my local Jobcentre as part of the National Day of Protest against Benefit Cuts.
The local paper came along and took a photograph of us, and gave a write up the following day.

These are 2 of the comments from the article:

I'm by no means an expert in MS, but if this woman can stand around waving a placard or march around Poole Quay, why can't she find a job doing something less physical in an office or something?
seems to me she's illustrating the point of the benefit cuts perfectly well!

If they are all on Incap Benefit, when was the last time they used a JOBCENTRE for the purpose it was created( to find a job). They may have a disability, but they should not be work shy. MS does not mean you can't work, it means you have restrictions which you have to overcome.

I was appalled, but not surprised, by the level of ignorance these two people display.
If they don't know anything about it, how can they feel they can judge? Are they happy for people to judge them? I suspect not.

This is just a snapshot of what anyone with a disability has to deal with. It's what has led many of us to feel afraid and paranoid all the time. Every time I set foot outside the door I wonder if someone is judging me, watching and waiting to call the DWP.
Because they don't feel what I feel. I they can't feel my legs shake underneath me. They can't feel the screaming pain that shoots through my head if I strain too much. They don't feel the extreme tiredness that comes after doing something.
They see one thing - a perfectly normal person.

This is what it's like to have an invisible disease. Constant judgement and fear and a feeling of having to justify yourself all the time.

Because of course attending a protest for 2 hours is the same as going to work.
Because of course having MS is the same for everyone.
And of course all restrictions can be overcome.

So to these two people - and everyone else who feels and thinks like them - I say this:
If you know of a company who will employ me for a few hours a week, who doesn't mind when I come in or how long I come in for, who doesn't mind how many things I drop, or mistakes I make, please let me know. I'd love to meet them.

Cross posted at Rage against the Coalition

The WCA: Sick Joke, or National Disgrace?

The migration from Incapacity Benefit to ESA is now underway, a migration the Con-Dems and the rabid press trumpet as a step towards getting all those indolent fraudsters on disability benefits into work. If only anything of that was true. The truth is a system that has been deliberately designed to fail a significant proportion of clearly disabled people and assessment criteria that have already been identified as unacceptable by the independent assessor. Then that system, with its built-in failures, is handed over to the contractor ATOS Origin to operate, and they set out to deliberately overstress it in order to process as many people as possible, in as little time as possible, and at as low a cost as possible, all in the name of the Great God Profit; no matter the inadequacy of the process delivered, no matter the huge percentage of claims overturned at appeal, no matter a failure rate that would be unacceptable in any other industry. And then there are the medics who conduct their inadequate assessments, happily claiming they don’t need to meet their normal standards of care, because they aren’t acting as doctors or whatever – um, isn’t that the very reason ATOS crossed your palm with 30 pieces of silver?

I'm that rare bird, the ESA claimant who actually passed the WCA without needing to appeal, in theory I have no axe to grind from having an application refused. However the process fell so far short of an acceptable level of competence that I have to stand my ground alongside those unjustly failed by the system.

I became unemployed just after ESA and the WCA were introduced, but initially elected to claim JSA, in large part because of the stories already coming out about the way the WCA system was failing disabled people. With an Employment Tribunal claim to manage I just didn’t have the energy available to fight for ESA if necessary. But ESA wasn’t that easy to avoid and it rapidly became clear (contrary to Professor Harrington’s complacent assurances in his review of the WCA) that JCP were utterly incapable of dealing with someone who was either disabled or highly qualified, and god help you if you were both. In fact the only way they could deal with me was by ignoring both qualifications and disability. That sad tale I’ve already described, but the end result was a complaint to ministerial level, abject apologies from JCP, and a request that I transfer onto ESA.

As an ESA claimant I was first expected to fill in the 28 page ESA50 form. The unavailability of an electronic version of this form from 2008 until the new version rolled out a few days ago speaks to an utter institutional contempt within DWP for disabled people and their needs. The paper form is not simply inaccessible to people with visual impairments, but also to anyone, like me, who is unable to write comfortably or legibly as a result of their disability. Equally the space provided in the form is utterly inadequate for anyone, again like me, who needs to discuss several decades of experience of a complex disability. And while someone could potentially fill it in for me, there are details of how my disability affects me that I’m not even comfortable discussing with my specialists, never mind anyone else.

My first WCA assessment was scheduled for May 6^th, 2010 at the local ATOS Assessment Centre, and what an ill-omened day that turned out to be! The building is located in the centre of town and has no on-site disabled parking, so is utterly unfit for purpose before you even get to the door. There is a public disabled car park some 150m away, but that regularly requires a wait of over 30 minutes to find a space in it and like many disabled people I cannot walk even 50m without experiencing significant pain. The next nearest disabled parking is 350m away. If you can manage to get to the building, then access at the door is via intercom, so how someone deaf and/or without speech is supposed to manage is a mystery. The DDA and the Equality Act both require service providers to make provisions based on the likely needs of their clientele, so a building whose entire clientele is disabled should make a significantly greater degree of access provision than most, yet ATOS continue to operate centres, and even open new ones, that fail to meet even the most basic standards of accessibility.

I had informed ATOS in advance via the ESA50 form that I would require adjustable seating because of the difficulty in sitting that results from my disability, which is in fact the core of my problems regarding working, so pretty much fundamental to the whole assessment process. None had been provided. The tattily-dressed individual who checked my ID led me into a waiting room filled with cheap, non-adjustable seating completely inappropriate to the needs of a client population containing a high proportion of people with musculo-skeletal and pain and fatigue based disorders. Within seconds of trying the seating I had realised that I was completely unable to sit on it in any comfort, only by rolling sideways onto my hip was I able to tolerate it at all. By the time I was called through, something over 10 minutes later (despite apparently being the only client in the building), I was in considerable distress, which only deepened when I reached the examination room and found that the seating there was actually worse. It was at this point that I discovered the tattily-dressed individual was actually the doctor who was supposed to assess me, not the caretaker as I had first assumed. I pointed out that I had told ATOS I needed an adjustable seat and his reaction was ‘Oh, you’ll just have to book another appointment’. He then admitted that this was not the first time this problem had occurred, that they had asked for adjustable seating to be supplied and that they had been told by their regional management to ‘make do with what you have’. In my opinion this is a clear indication of an active contempt by ATOS management for both their client population and for the reasonable adjustment provisions of the Disability Discrimination Act and now the Equality Act.

I returned home having wasted my time and experienced major amounts of pain as a result. This pain then served to trigger a massive flare-up in my condition and I spent the following week on the floor of my bathroom as I was wracked by one muscle-spasm after another, not knowing even what day it was. I eventually managed to get to my GP, who doubled the strength of my opiate painkillers, which brought the flare-up under control, but at the cost of my wandering around in a daze for several months with no energy or volition. The loss of control in this kind of flare-up is extremely distressing both physically and mentally and I was completely unable to deal with mail during this period, simply the thought of a letter from ATOS or DWP being sufficient to send my pain levels sky-rocketing. Ultimately it took me six months to completely catch up with my mail, at which point I discovered a letter from ATOS dated a week after my initial WCA date and calling me for another WCA a few days later, which needless to say I had not attended, being barely conscious at the time.

So, knowing that I had a major problem with their centre environment, having failed to provide a requested reasonable adjustment, and having visibly caused me considerable distress, ATOS didn’t even think it was worth ringing me to ensure that my appointment was rearranged for a convenient time and to assure me that the needed reasonable adjustment would be there this time. Their response was actually worse than this, but it would be several months before I realised quite how bad.

In late-August I received a letter from DWP stating that my ESA payments had been stopped, from the week before my initial appointment, owing to my failure to attend the WCA. I called the office the letter had originated with and the person I spoke to was perhaps the only DWP employee ever to have impressed me with competence and common sense. She immediately accepted my inability to attend a WCA I was not aware of and noted that ATOS had made no mention of their failure to provide a required reasonable adjustment, but had simply stated that I had not completed the initial WCA. When ATOS set out to deliberately portray their own error as a failing by the victim of that error, and a failing with fiscal consequences, then there is no way to interpret their actions as anything less than actively and deliberately dishonest.

Thanks to an unusual outbreak of common sense at DWP, my claim was eventually reinstated and a further WCA was arranged for mid-October, again at the local assessment centre. This time I was met at the door with an adjustable chair. Unfortunately I could not even raise the seat of the chair to an appropriate level and at five feet eight I am not exactly tall, nor did the seat angle adjust, the only hope I have of a usable position if the seat isn’t high enough. Again I was reduced to rolling sideways onto my hip. This time the delay was not 10 minutes, it was something over 45 minutes. By the time I was called through (with the receptionist bringing the useless adjustable seat through after me) I was physically shaking. It was a different doctor to my first appointment, but again he was scruffily dressed in a tatty anorak. It is impossible to conclude that this reflects anything other than a profound lack of respect for their clientele on the part of ATOS medical staff.

My pain-management consultant has told me that is almost impossible to get doctors who are not specialists in pain-management to comprehend just how disabling pain is, and I was therefore concerned about how much of a background the assessor had in chronic-pain based disabilities, unfortunately his manner instantly convinced me that any question would be interpreted negatively and I did not feel able to make my point. As the session started I rapidly became aware that I was in so much pain that I was not answering effectively and was making a case for myself that was not as strong as it should have been. It also became rapidly apparent that the doctor was profoundly irritated by my refusal to give yes or no answers. He may have found it irritating, but any understanding of my condition required that he listen to the details and I would not be swayed on this, though undoubtedly many people who are less able to express themselves will have been browbeaten into less than complete answers by his manner. It was also extremely apparent that he was reading from a computer-based script, his eyes fixed on the screen, and less than pleased with answers that did not fit the format its questions mandated. As a result of this there was an almost complete refusal to make eye contact, destroying any sense that he was truly engaging with me.

More disturbingly, he chose to take umbrage at certain of my points. I do not expect automatic complete agreement, but I do not expect to be told that I am wrong to have tried to search out information on the assessment process, particularly when his subsequent conduct proved the correctness of that information, nor do I expect to be criticised for the way I have described the effects of my disability on my walking, particularly when later events demonstrated that I was being absolutely accurate.

Some 20-odd minutes into the assessment I reached my limits on my pain tolerance, either I had to stand, or vomit. I spent the rest of the assessment balanced on one leg and crutches and it was only at this point, a cynic would say at the point he started to fear being found negligent in my treatment, that the doctor finally broke script and started to treat me as an individual. He asked several times whether I was able to continue, but by that point I just wanted the WCA over with, I certainly wasn’t about to put myself through the process for a third time. He completed the physical part of the assessment, but even then he criticised me for being unable to bend my leg so he could tap my knee with his hammer. Locking my leg extended is something my disability does when my pain levels are extremely high, I have no conscious control of it and I don’t expect anyone, certainly not a doctor acting in a medical capacity, to criticise me for it.

WCA thankfully over, I made it back to my car on one leg, and, even though it is a bare 5 minutes from the assessment centre to my house, my pain levels were so high, never mind the opiate painkillers, never mind the TENS machine, that I had to give serious thought to pulling over on the way home. I spent the rest of the day in bed, the first hour physically shaking.

In late-November I finally received the notification that I had been placed into the Work Related Activities Group, which is where I believe I should be, together with back-payment of all the ESA payments I had been due since May, but the process had taken 10 months and caused me a considerable amount of pain and physical distress, actually worsening my disability. The treatment I received has convinced me that ATOS have a complete and utter contempt for the needs of their clients that adds up to institutional disability discrimination and that their medical assessors are happily compliant in this. Sadly DWP is little better, my experience has been that the system only works when you complain.

I have a skill set that should make me an asset, I am making every effort I can to maximise my potential for employment, but to date the organs of state that are supposed to support me in this actually seem to be working against me. And at the start of the 2012 financial year, no matter that my disability is worsening, no matter the efforts I am making to find work, the 12 month limitation of eligibility for contributions-based ESA will kick in and cut my benefits to nothing.

So that’s my experience of WCA and ATOS, contempt for disabled people that amounts to deliberate abuse. They damned near turned me into one of those statistics for withdrawn or failed claims that Nick Clegg loves to claim are evidence of fraudulent intent, rather than what they really are, evidence of a system that is failing those who need it most. I got through the system because I’m too bloody-minded to give in when people erect barriers in front of me and because I’m too articulate and persistent to easily dismiss; but many people aren’t as bloody-minded, aren’t as articulate, aren’t as persistent and the system will be far more of a nightmare for them than it was for me. The system should assess you fairly whoever you are, at the moment it isn’t even doing that for the people it passes. The phrase ‘a national disgrace’ is often over-used, but it was never more appropriate than when describing ATOS and the WCA.

And lest we forget, this isn’t simply Con-Dem policy, but a policy that began under Labour and which Ed Milliband continues to support.

Catch 22

It being the end of the financial year, my bank invited me in last week in order to discuss my savings and investments. So I struggled in and explained that, despite the savings I racked up during a couple of decades of work, not to mention my redundancy payment, I am currently receiving ESA, which doesn’t cover all of my outgoings, and as it is Contributions Related ESA, at the start of the next financial year it will drop to nothing, so I really need to optimise my savings and investments.

What I wasn’t expecting to be told in reply was 'Sorry, the FSA won't let us give you financial advice if you have outgoings exceeding earnings.’ So, the government is going to force, by its own estimates, 300,000 contributions-based ESA claimants to live on their savings as of next April, but won't, for that very same reason, allow the banks to give them financial advice on how to maximize the income from those same savings.

I seem to have wandered into Joseph Heller’s ‘Catch 22’….

Red Tape Challenge

The government is currently running a "Red Tape Challenge" to "fight back and cut red tape."

On the about page of the "challenge" it says:

Good regulation is a good thing. It protects consumers, employees and the environment, it helps build a more fair society and can even save lives. But over the years, regulations – and the inspections and bureaucracy that go with them – have piled up and up. This has hurt business, doing real damage to our economy.

Yes. It's rules that ruined the economy, not this government's friends the bankers. Oh no. Not at all.

The ConDems - you know, the ones that want us off benefits and working - are consulting on whether or not to scrap the Equality Act 2010 as part of the "challenge"; the act that's vital to disabled people securing work.

Unsurprisingly the consultation has brought out the inner Daily Mail reader in most of the respondents so far. These people seem to think that the act is all about "positive discrimination" and don't seem to understand that the act protects men as well as women, straight people as well as gay people, and white people as well as non-white people. But I suppose that's the kind of misunderstanding people would get from reading right-wing rags.

There have been a few people standing up for equality, but sadly not nearly enough. Not that consultation really makes much of a difference, the government will still do exactly what they want just like with DLA reform, but I think us pro-equality, anti-discrimination types need to make our voices heard.

It is truly farcical that they think more disabled people will suddenly find jobs without anti-discrimination laws. Already the employment rates of disabled people are around 48%, compared with around 78% of non-disabled people (sure, some of that's to do with illness and inability to work, but discrimination in the job market is also a massive factor). The gap in the rate of employment between disabled and non-disabled people has shrunk since 2002 when it was 36% to the rate of around 29% in 2010. You can be sure that that's a direct result of the DDA getting stronger. (Stats from the ODI.)

Consulting on binning the Equality Act isn't the only thing being consulted on that may affect us. Every few weeks they're looking at a different sector and considering the regulations specific to that area. Currently they're consulting on the retail sector. From 23rd June to 6th July they're consulting on regulations around social care; when you can be sure that the rules that protect us from abusive carers and so forth (at least the ones that have been previously caught) will be threatened with those red tape snipping scissors.

ESA and the Work Capability Assessment

Today marks the day when the government's scheme to transfer all existing Incapacity Benefit claimants onto Employment and Support Allowance begins.
One and half million people will get their letters calling them into Atos offices for the Work Capability Assessment - the test designed to assess whether someone is genuinely in need of support or if they are fit for work.

Employment Minister Chris Grayling has said that genuine claimants have nothing to fear, that the only people who need to worry are the fakers who just prefer a life on benefits to one of work.

He's wrong. The fakers have nothing to fear; they have options. They are able to go out and work or comply with the regulations to claim Jobseekers Allowance. It's the genuine who are afraid because they have no options. If they could work they would do. No-one wants to be ill. No-one puts up with the 'scrounger' label or the suspicious looks if they don't have to.

Everyone who claims any of the disability benefits know about the WCA. Those on IB or in the work related activity group of ESA have been terrified of it for months. And rightly so - it's a terrible assessment that even the government's own advisory board as well as the man who designed it, have said is not fit for purpose.
They've heard the stories about those who've been denied benefit despite their illnesses. They've read the story of Paul Reekie, who committed suicide when his benefits were stopped.
Now they wait to see how their own claims will turn out.

I've been through two WCAs myself. The first was when I came down with my symptoms of MS, though I didn't have a formal diagnosis at that point. I was summoned to the Atos centre, waiting for what seemed an interminable amount of time, then was called in to see the doctor.
I was scared to start with and my fears were not allayed by he fact that I couldn't understand a word of what the doctor - from Eastern Europe - was saying. Nor could she understand me. She put me through a series of tests, none of which I could do, then sent me on way. The whole thing took maybe 15 minutes at most.

The following week I received the report she had sent to the DWP. I was shocked at what she had written - it was lies from top to bottom. Every test she had done she'd put me as passed even though I hadn't. She had omitted things I had told her and gone against everything that had happened in that room.
In short, she said there was nothing wrong with me.
This was despite being barely able to walk, being unable to feel my pelvic muscles which led to lots of bathroom visits and being so tired I could barely think straight. I couldn't bend down, I couldn't kneel down, I certainly couldn't touch my toes.

I sent the form, along with detailed rebuttals of everything that was wrong, off to the DWP. The following day I received a letter saying I wasn't entitled to benefits because I was fit for work. I then had to ring them up and tell them I'd appealed at which point they said my benefit would be continued until the appeal was heard. I was on tenterhooks, worrying over what would happen about it, if they would listen to me or uphold the Atos doctor's decision.

The next letter I received was one telling me the appeal had been successful and my benefit would continue. I can't tell you how relieved I was.

Last year I underwent the WCA again when I left hospital following my formal diagnosis with MS.
I received a letter from Atos telling me to call and make an appointment - if I didn't, one would be made for me. So I rang and spoke to a very bored and slightly dismissive man who gave me an appointment who gave me an appointment for a date that they decided.
When I arrived, I was shown into the waiting room by a security guard, and greeted by a receptionist who looked at me like I was something foul on the bottom of her shoe.
I waited for about half an hour, all the while getting more and more uncomfortable as I felt the judging stares coming from the staff. If anything is designed to put you off it's that. So far, it was worse than my previous experience.

When I was finally called in I met a very nice lady doctor who seemed to understand about MS. She didn't attempt to make me do anything she knew I couldn't and was very reassuring. Very different from the first assessment so I had hopes that it would be ok.
Well, she didn't lie. But that's about it. Despite having shown some knowledge of MS she placed me in the work related activity group, meaning that with the right support I could work.
Because of course the right support will mean that I no longer struggle to get dressed in the mornings. Or take a shower. Or cook meals. Or walk anywhere. Or need to rest after putting a load of washing on. Or want to cry when the pain in my head gets too bad. And it will get better because of course MS is curable.

I didn't have the strength or the energy to try and appeal though. Not to mention I was scared that they might stop it completely. So I left it as it was. I see an advisor every few weeks, meaning a taxi journey to the jobcentre where I wince with pain as I struggle with the sensory overload of neon lights and too many people.

And in the summer I get to go through it all over again.

Now then Mr Grayling, are you still going to tell me I have nothing to worry about?

Cross posted at Rage against the Coalition