What does it mean when one million people are found fit to work?

DWP says almost one million sick found fit to work reports The Huffington Post:

A third (32%) of all new claimants for employment and support allowance (ESA) were assessed as being fit to work and capable of employment between October 2008 and March 2013 - totalling 980,400 people, the Department for Work and Pensions (DWP) said.

We've now had five years of reporting the numbers of people turned down for ESA as some kind of success story; they're getting disabled people back into work. A third of those who claimed ESA are being found fit to work. Welfare Reform is justified!

Those turned down for Employment and Support Allowance are not necessarily making false claims. They may be fit to work but have not understood the rules, or they may be unable to work but have struggled to fill in the form in such a way that conveys this. Some of those turned down may have had a good case for appeal (40% of appeals are successful), but couldn't face the ordeal. The fact that this complex and mixed group number a million people (or strictly speaking, a million claims) seems unremarkable.

The criteria for Employment and Support Allowance are much stricter than those of Incapacity Benefit, the process takes many more months, with many people either dying, getting better or giving up before a decision is made and some claimants' benefit is stopped after the first year if they have savings or a working partner. Despite this, there were still 2.49 million people on ESA and other incapacity-type benefits in 2013, against the 2.6 million on incapacity benefits in 2008.

Reform to this benefit, at massive cost to government, a very great deal of  personal stress, heartache and hardship for disabled people and their families, as well as a media-driven regression in social attitudes towards disabled people, has only succeeded in reducing the numbers on this kind of benefit by 110,000 people or a little over 4%.

This is what has been achieved since October 2008; there are a little over four percent fewer people on ESA and related benefits than before. It is unclear whether or not the incapacity bill - either in terms of benefits or the cost of assessing for and administering benefits -  has been reduced. A stable 40% of appeals against ESA decisions are successful. Fraud levels (around 0.3%  for incapacity benefits) remain stable.

Meanwhile, the vast majority of those found "fit to work" will have simply moved onto other kinds of benefits such as Job Seeker's Allowance. Disabled people who are fit to work remain unlikely to actually get work, largely due to discrimination.

32 deaths a week.

I haven't been able to write here for a while. After the Welfare Reform Bill came into law it has all felt a bit pointless. I felt helpless, that all was lost.

Whether or not that is the case remains to be seen, but I've been prompted back into action after seeing this story: 32 die a week after failing test for new incapacity benefit.

32 people every week.

We've used the Freedom of Information Act to discover that, between January and August last year, 1,100 claimants died after they were put in the "work-related activity group".

This group - which accounted for 21% of all claimants at the last count - get a lower rate of benefit for one year and are expected to go out and find work. [...]

We don't know how many people died after being found "fit to work", the third group, as that information was "not available".

But we have also found that 1,600 people died before their assessment had been completed.

Go and read the whole thing, and kick up a fuss, put this to the top of everybody's agenda. It can't go on.

What's Wrong with Personal Independence Payments?

I put this together in my snail-like manner over Christmas, together with two other posts about the Welfare Reform Bill which is going to the vote in the House of Lords in the next few weeks. I mean these posts to be a basic primer for anyone who doesn't know what's going on with disability benefits in the UK. Tomorrow, Kaliya, Sue and others are publishing their research project on the way the government has handled the abolition of Disability Living Allowance, so it seemed a good moment to post my little summary.

Personal Independence Payments are set to replace Disability Living Allowance, a UK state benefit awarded to disabled people who need help getting around or looking after themselves. This benefit has nothing to do with whether or not someone is in work, and is not means-tested in any way. The current criteria are very strict, fraud is estimated at under 0.5% and legitimate claimants frequently have to go through a demoralising appeals process in order to get the benefit. Despite the public shock at Sue's recent rejection, I don't think I know anyone with a subjective condition (one dominated by pain, fatigue, weakness or mental symptoms) who has not been turned down at least once. In fifteen years, I have been turned down twice, appealing successfully both times.

The Government have made it clear that they wish to reduce the DLA caseload by 20%  in order to save money. There is no evidence, not a scrap, that anyone claiming DLA has more money than they need - check out the Where's the Benefit? Podcast for some examples of what this money is currently spent on. The Government have also frequently muddled the issues of Disability Living Allowance and incapacity-type benefits, speaking as if reducing the numbers on DLA equates with getting more disabled people into work. On the contrary, DLA is an essential benefit which enables many disabled people to stay in work.

The criteria for Personal Independence Payments [pdf] are not yet set in stone, but they are stricter than the already very narrow DLA criteria and there are some things which are quite clear. In May, Lisa read the draft criteria and found that she, as someone with congenital impairments and chronic illnesses which stop her working, walking more than a few steps and put her at ongoing risk of broken bones (she has broken her back rolling over in her sleep), would be entitled to nothing.

 The most significant changes are:

•  Someone who is able to propel their own wheelchair will be treated as if they have no trouble getting around at all, as if anywhere they might work, live in, shop or visit and any vehicles they travel in will be completely accessible. This is an absolute disaster for manual wheelchair-users.

• The need for ongoing supervision is not mentioned in the PIP draft criteria. Currently, DLA is awarded to people who need a great deal of supervision at home (e.g. to be around if they fit, fall or faint in dangerous cirumstances, to make sure they don't harm themselves or wander off etc). Quite obviously, if people don't have the supervision they need, they are going to run into serious trouble.

DLA is a gateway benefit. For example, if you are in receipt of the middle or higher rare Care Component of DLA, then a partner, friend or family member who is unable to work full time because of their caring responsibilities may be able to claim Carer's Allowance.  Receiving some rates of DLA can mean being exempt from VAT when you buy essential equipment.  If you are in receipt of the higher rate Mobility Component of DLA, you are automatically eligible for a Blue Badge. You can also use your benefit to rent a suitable adapted car through the Motobility Scheme (nobody gets a free car!).

The Blue Badge and Motobility Schemes subsidise disabled car-use for a very good reason. While many non-disabled people regard their cars and car use as essential, people with mobility impairments have absolutely no choice about needing to use a car, needing to park in busy or expensive car parks or directly outside the place they're going to, including their own homes.  Often we don't have any choice about the type of car we need, because we need adaptions or we need a large enough vehicle to carry paraphernalia like wheelchairs, scooters and so on. Many wheelchair-users will lose this help altogether.

These changes are going to lead to  

1. A major increase in unemployment among disabled people. 

Public Transport is not wheelchair accessible and even when it is, wheelchair-users frequently face discrimination. The move to PIP will mean that some employed wheelchair-users will lose their means of getting into work, if they are no longer eligible for the Motobility scheme and can't otherwise afford to run a car or take taxis everyday. Wheelchair-using job-seekers will have their chances of employment reduced even further, because they may not be able to travel further than they can roll.  Given that, as Emma points out, even our streets and pavements aren't yet fully wheelchair accessible, this may not be very far at all.

The changes to the Care Component will also effect people's ability to work in less obvious ways.


2. A major increase in hospital admissions, medical emergencies and preventable deaths among disabled people.

Last month, Lisa wrote a powerful post about the new PIP, describing how she wouldn't survive without the help she currently gets, and if she did, her quality of life would be so poor that it would not be worth going on with. If disabled people don't get the help we need to pay for support, appropriate equipment, transport and so on, then depending on our cirucmstances and personal priorities, then we will be forced to

•  Do much less. Go out less, have less social contact, quit our jobs, get less exercise, shop less, cook less, maybe eat less and certainly wash less. None of this is good for our physical or mental health. Our worlds will shrink and our health, happiness and life expectancy will adjust accordingly. 

or

• Try to manage without the appropriate support, equipment and so on. This could mean attempting to push beyond our limitations, until our bodies or minds give up and things start falling off. Where there is a need for supervision, managing without supervision is likely to prove extremely dangerous. The physical isolation involved in losing our cars or money to get around is far more dangerous because we are disabled. 

People spend their DLA on a whole variety of different things, as you can hear in the Where's the Benefit? Podcast. Some of those items are about quality of life, such as being able to leave the house, see friends and family and so on. But most of these things are about survival; eating, basic hygiene, getting appropriate rest and sleep, taking medication, attending medical appointments and so on.

Without this help, people will get sick, people will get hurt and some people will die.
  


3. A major increase in the social segregation of disabled people. 

Sometimes people remark that there seem to be far more visably disabled people about these days; wheelchair and scooter users, people with white canes or assistance dogs, people walking with sticks or crutches. And you know what? This is almost certainly true.

Some of us could only have survived infancy in the last three or four decades. Some of us wouldn't survive even day to day life without modern medicine. However, a huge number of us would have lived, but would have never been able to leave the house even twenty or thirty years ago. And then, even if we did, there would have been not much to do and not many places we could go.

As Mary says, disabled people are not dead. Most of us are capable of living full and enjoyable lives, if we get the help and accommodation we need. DLA has played an important part in that.

Disability Living Allowance has been a huge part of increasing equality for disabled people.  It has been our means of working around the problems of a disabling world, our means of, at least partially leveling the playing field and doing it ourselves - not relying on charities or government organisations to determine exactly what we need in the way of transport or help at home. Personal Independence Payments threaten this for a great number of people.

Repeat

(Originally posted at This Is My Blog.)

I know this is ground we've covered before, but a look at today's front pages makes it necessary to go over it again.

In the UK, we have a welfare system. The disability benefit side of it has been being overhauled for the last few years. Labour started it, the Coalition are continuing it, they're using the same company (Atos) to execute it and the same advisor (Lord Freud) to justify it. This is not a party-political issue - red, blue or yellow, to borrow a phrase, they're all in it together.

In summary:

• If you have a doctor's note stating that you are unable to work because of illness, injury or impairment, you apply for Employment Support Allowance (ESA). For the first 13 weeks of your claim you are paid the "assessment phase" rate of up to £67.50 per week.


• If the assessment classifies you as entirely unable to work, and unlikely to ever be able to work, for instance because you are bedbound and terminally ill with a life expectancy of less than a year, you are granted unconditional ESA at the "support" rate of up to £99.85 per week.


• If the assessment decides that, although your disabilities are substantial, you would be able to do *some* work at *some* point in the future with the right conditions/support/equipment/adjustments, then you are awarded ESA at the "work-related activity" rate of up to £94.25 per week. To continue to receive this you must attend regular work-related activities.


• If the assessment determines that your NHS-diagnosed conditions are not severe enough to substantially impair your ability to work in an office environment, or that you would only require minor adjustments, you are deemed "fit to work". You don't get ESA at all, and are placed on Job Seekers Allowance (JSA) which is a smaller amount of money with much higher conditionality attached. If you are fortunate, there may be a note on your jobseeking file excusing you from mandatory application for specific jobs that would aggravate or be incompatible with your condition (for instance someone with speech and hearing difficulties may be "fit to work" but excused from mandatory application for call-centre jobs).

Leaving aside all the arguments about whether the system is fair, how their fitness-to-work tests relate to what is required to perform a job in the real world, and so on... the Department for Work and Pensions released these statistics yesterday, about ESA applicants over the last two years:

• 7% were incapable of any work (Support group)


• 17% were able to do some sort of work given the correct support (Work-related activity group)


• 39% were deemed to be fit for work and were moved onto jobseeker's allowance


• 36% dropped out of the application process


• 1% of applications were still in progress

Today, the Express have taken these numbers and decided that 1% (still in assessment phase) plus 7% (Support group ESA) plus 17% (WRA group ESA) equals 25% of applicants approved to receive some form of ESA. So far, so true. However, their headline screams that therefore the remaining 75% - those moved onto JSA, and those who drop out of the system entirely - are "faking".

This is simply not true.

The fact that a person has failed to score enough points to get ESA (yes, it really is a points-based computer system) does not mean that they scored no points whatsoever, or even that they're not disabled, just that they're not quite disabled enough to be Officially unfit for work. That's why we have the assessment process! To assess people!

To apply to be assessed is not "faking".

To have a level of impairment that falls just short of the ESA bar is not "faking".

There will also be quite a few applicants who suffered an acute injury or illness (for instance, they were in a car accident) and were advised to apply for ESA as a temporary or worst case scenario - but in the 13-week assessment period, they have recovered well so they have been moved to JSA or have returned to work.

To recover from an illness or injury does not mean that the illness or injury was "faked".

There are also the people who get placed onto Jobseeker's Allowance, and go to appeal, and win. The rate of people winning their appeals is around 40% and this increases to 70% where the appellant has someone to represent them. Regrettably, there are also a number of genuinely disabled people who simply don't have the wherewithal to fight an appeal, and have to attempt to survive without the benefits they need. I myself have been in this situation.

To be too ill to fight is not "faking".

There are people who, during their assessment period, are fortunate to find a suitable job which is prepared to make the necessary adjustments, or who, like myself, have enough personal support around them to enable them to be self-employed.

To return to the taxpaying workforce is not "faking".

A very few people will be fortunate enough to have other resources to fall back on. Perhaps an insurance payout of some kind, or a lottery win, or the sale of assets, will save them from the indignity of having to complete a process that treats them as the worst kind of fraudster from beginning to end.

To have alternative resources is not "faking".

Most significantly, there are those who die before the assessment phase is complete.

To die of a condition is perhaps the strongest possible indicator that the condition was not "faked".


I'd provide more concrete statistics, but we don't have them. Once you leave ESA, you're not monitored. We don't know how many of these people have got jobs, have died, have killed themselves, have left the country... no one cares. The Express just goes ahead and calls them all "fakers".

The worst kind of postcode lottery

The DWP published a press release yesterday, reinforcing the status of benefit claimants as primarily suspected criminals. Titled Cheats warned of benefit fraud blitz, it describes how claimants who live in "high risk postcodes" will be scrutinised, "regardless of age, gender, ethnic make-up, type of benefit recipient, income, disability breakdown or family status".

The lucky claimants in Birmingham's B44 postcode, the Perry Barr and Kingstanding area, will be the first to receive the Mobile Regional Taskforce. Yet again, benefit claimants are automatically under suspicion, simply because they are unlucky enough to have to rely on government money, and now because they live in certain postcode areas.

It does not explain what makes a particular postcode 'high risk', but I would imagine they are made up of areas which are more deprived, with higher numbers of people already living in poverty. So, the more likely you are to need government support, the more under suspicion you are?

Benefit claimants are not criminals! While finding people who are committing fraud on a huge scale is clearly important, this move just reinforces the propaganda coming freely from the government and certain parts of the media that we are all ripping off 'the taxpayer' and need hunting down and prosecuting. It increases people's anger at us, and our fear at our situation, over which we have no control.

(Cross-posted at incurable hippie blog).

Conversations with my cab driver

I'm going to write a big old post about the Hardest Hit march and rally filled with photos in a little while. I got a taxi home from the event and I wanted to share the conversation I had with my cab driver:

1. Before I forget the details.
2. Because I think it deserves its own post separate from the main write-up about the events of the day.

I know some people who take a lot of taxis and always strike up a conversation with the driver. I rarely take taxis because I can't afford them. And even when I do I don't tend to talk to the driver because I'm awful at striking up conversations with strangers.

But today I overheard the driver talking on the phone in which he said "I didn't see any demonstration. I don't know what they were demonstrating about..."

So once he got off the phone I explained that the demonstration had been a bit earlier but it was over now and the roads had all reopened. And that it was a protest against the cuts to disability benefits.

"But if you get, say, £100 a week, they're not gonna cut that down to £70 though, are they?"

I explained that actually the planned cuts were much more brutal than that. He still didn't seem to quite accept when I explained just how cruelly disabled people were being treated. He just couldn't comprehend that our government could really do that to disabled people.

"Now, you see, the trouble is is all these fakers."

I tried to tell him that the official fraud rate for IB is around 1% (see page 8 of this DWP report), but on this he just wouldn't believe me. He insisted that there are fraudulent IB claimants everywhere.

I tried to explain that most people have a story of the time they met a faker. The government acknowledges that one in every 100 IB claimants is a fraud. But those other 99 are people he's less likely to meet. The other 99 will include people who are housebound or can't afford to go out and take taxis. The 1% who are fakers might be more visible than the 99% of genuine claimants, but that doesn't mean that they account for any more than 1%. He refused to accept this.

"But why do you believe that it's only 1%?"

The conversation got quite difficult for me here because he made it out to be a matter of religious-type belief. I tried to explain that the 1% figure are the government's official statistics but he wouldn't concede they were "right", he was only willing to accept that I believed them, but he chose to believe the tabloid-ised stats.

"I mean people in wheelchairs and that are obviously genuine, but I think a lot are fakers."

This turned out to be a simple claim to refute when he revealed that he had spondylosis and he found even walking short distances to be painful. He was perfectly willing to accept that some people have conditions that you can't see because he has one himself. I think his statement purely came from repeating sentiments he'd read in the tabloids but had never really thought much about.

But this did lead on to:

"Well I work and pay taxes so I don't see why I should be paying for benefits for people who could work."

We were stopped at some traffic lights about 100 metres from the end of my journey so sadly I didn't have time to address the "well I'm disabled and I work so why can't other people?" subtextual element to the question.

But what I did have time to explain was DLA. I explained that DLA was a benefit that disabled people could get for help with getting around and help with care. And that the benefit wasn't affected by your employment status because if you find a job your need to buy a wheelchair or your need for help getting out of bed in the morning doesn't go away.

I had to explain that the government and the media, in their attempts to whip up hatred towards disabled people, keep claiming that DLA is an "out of work" benefit. So despite what you might read in the papers there are some people who have a job and get benefits, but aren't getting those benefits fraudulently. He seemed to think that, actually, DLA was a really good idea.

Alas my journey ended here. It was quite a shocking conversation for me because it really drove home just much people believe the lies printed in the papers. He seemed like a genuinely nice bloke; I mean he pulled his cab over to pick up a wheelchair user which most cabbies won't so that's a fair indicator of his decentness. But for so long he's been fed these stories that there's a huge problem with people claiming benefits fraudulently that he now believes it and won't accept when just one person points out the facts to him because it's a lone voice in the face of all this propaganda. And so many times he's heard that "the most vulnerable will be protected" that he can't quite grasp that that's not true either.

The fare came to £11.40. He would only let me pay £7.

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).

To err is human...

... but if you do it on DWP forms, you can expect a fine.

A £50 fine, to be precise, although that's just a starting figure. It could be as much as £300.

Apparently the point of this fine is to get claimants to take "responsibility" for their claims, because "I have to fill in this form right or I won't have any money for rent, bills or food" doesn't have enough impact on your life to make you take it seriously. Or something.

Leaving aside the class war bit where a bunch of millionaires (who make plenty of "mistakes" in their own benefit claims and consider £50 to be the cost of lunch) are imposing these fines on DWP claimants who are, for obvious reasons, some of the poorest people in the country for whom £50 is two weeks' groceries or more...

I'm reasonably bright. Not exceptionally so, but I have my selection of higher-tier grade GCSEs including English and Maths, I've been able to read and write since before I started primary school, most of the jobs I've held have had some sort of administrative element. I should be as well-equipped as anyone to fill out those forms correctly, and I have a distinct advantage over many claimants who are less academically inclined.

And I have made errors on my claims.

The first one, was when I first got sick and lost my job. Let's set the scene. I'm in my early twenties. I'm sick, so sick I cannot work, and more or less confined to bed so that I can manage the big bursts of effort needed to go out (I haven't yet been taught about pacing). I don't yet know what's wrong with me, so I'm scared. I have no income and the Jobcentre have given me three forms. The biggest one is for Incapacity Benefit. The next biggest is for Housing and Council Tax Benefit. The smallest - which is still some thirty or forty pages - is for Income Support, which I am told is a "safety net" in case my Incapacity claim is rejected.

Bear in mind the reason for my claim was that I was too sick to work in my mostly office-based job. I had something symptomatically akin to 'flu. I was not in a top form-filling state.

I worked on the forms as best I could. By the time I got to the IS one, time was running out, but I did my best and felt quite proud of myself for finishing it all within the deadline.

My mistake? In the Pensions section. Having ticked that no, I was not in receipt of any pensions, I was told to go to the next section of the form. So I skipped over all the questions about what type of pension do you have to the next section of the form, About Other Benefits. What I missed, was that "War Pensions", although tacked onto the end of "Pensions", was in fact a section in its own right - a one-inch strip with the single question are you in receipt of a War Pension and Yes/No tickboxes. The form was sent back to me, red-penned and with a stern letter of admonishment.

I've also made errors on my DLA forms before now, again usually at the level of missing a tickbox, although thankfully I've always caught them before sending.

The BBC article says:

The proposals also reveal that the government assumes there will be very few appeals against these fines.

Well, yes. If my incorrectly completed form and nasty letter had also included a £50 fine, I certainly wouldn't have had it in me to argue the toss, because I was too sick to do so, and THAT was the reason why I was filling in the forms in the first place.

That's the thing about benefits. You claim them when your life gets to a desperate stage. You're sick, perhaps terminally so. Your spouse has emptied the joint account and run off with So-and-so from Marketing, leaving you with a broken heart, no money and two kids who want to know where Mummy/Daddy's gone. You've finally managed to get up the courage to get out of a violent and abusive relationship even though you took nothing with you other than the clothes you stand up in. At the very least, you've lost your job. You're stressed. You're upset. You're running around trying to improve your situation and get back something which is recognisable as Your Life, whether that means you're attending countless hospital appointments or applying for countless jobs, and on top of this, the Jobcentre have presented you with over a hundred pages of forms to fill in?

And while we're at it, let's not forget the cuts to legal aid and the closures of Citizens' Advice Bureau offices which will make it even harder for people to get help filling in forms or conducting appeals. Nice one, George. Withdraw the support, thereby increasing the rate of mistakes, then charge people for those mistakes on the basis that they'll be unable to argue. It would make a wonderful Dilbert cartoon, if only it weren't targeted at real and vulnerable people at their time of need.

Minor mistakes are inevitable when people in these circumstances are filling in these forms. Fining people who can't afford to pay but aren't in a position to defend themselves, is appalling.

(cross-posted at This Is My Blog)

Hate from the Government, Hate on the Street.

Today I went to an appointment, and afterwards, when I was almost home, a man who was coming from behind me shouted something. I turned to him and laughed and said, "that made me jump", and he yelled it again, but I couldn't work out what he said.

He crossed over the road and yelled the same thing for a third time, and I worked out that he was saying "fucking DLA stick". I said, "I don't know what you mean?" but as I was saying the words I realised that I did. He was implying that, as I walk with a crutch, I was faking a disability to receive benefits.

For the rest of the length of the street, he yelled 'fucking DLA stick' at me again and again. I felt very intimidated and frightened.

And I knew. I knew that it was caused, as well as by a nasty, nasty man, it was also caused by this:



and this:



and this:



and every other story by the government and the media portraying disabled people as lazy (see the photo in that final screenshot!) scroungers.

I do not need to justify my use of a mobility aid to a complete stranger in the street, never mind one who is flinging abuse at me. The thought that I would carry a big, awkward metal thing around with me at all times in order to claim benefits is just ridiculous. The realisation that this is what some people think, that's frightening.

If anything like this happens to you, remember that it is a disability hate crime. You can report it directly to the police, or through an intermediary such as Stop hate UK.

The war against benefit claimants is, sadly, proving more effective than ever.

(This was cross posted at incurable hippie blog)

Grill Chris Grayling about Benefits!

Well, two days after posting about a chat with one government minister, I get an email promoting another event, this time, Rethink are hosting a webchat with Chris Grayling, Minister of State for Work and Pensions coming in to Rethink’s offices for a Q&A about the Government’s proposed changes to the benefits system.

Rethink’s activists brought about the webchat by campaigning really hard towards the end of last year, so it’s great that they’ve given others who will be affected by these changes, a chance to hold the minister to account. People (like you!) have been sending in their questions for the event, and now we’d like to make sure that as many people hear about the webchat as possible

Here are the details:
Date: Thursday 10th February (tomorrow! (will be today approximately two minutes after I publish this post!)
Time: 11.30am
Location: http://www.rethink.org/talk

Disability Works, Does It?

Companies like A4e, who are paid by the government to get benefit claimants into work, are treated with at best suspicion, and at worst fear and loathing, by many disabled people, especially following TV programmes such as Benefit Busters.

The DWP currently have a shortlist for other companies who are bidding for contracts to carry out government compulsory back-to-work schemes, and worryingly one of the shortlisted companies is the dreaded ATOS, who carry out the ESA medicals, and G4S (formerly Group 4 Security).

However, apparently also on the shortlist, according to benefitsandwork.co.uk, is a consortium consisting of a group of 7 charities, who have called themselves Disability Works UK.

Disability Works UK is a collaboration of national third sector disability organisations including Leonard Cheshire, Mencap, Scope, Mind, Action for Blind People, United Response, Pure Innovations, Advance UK and Pluss.

They boast about their £654.4 million turnover, and cash surplus of £15.6 million, which makes me feel a little queasy. As someone who has donated to more than one of these charities in the past, I will certainly never do so again if that is going to be used in a bid for them to gain their place in what is one of the most oppressive parts of the government's new benefit regime.

For charities and voluntary sector organisations who have done some campaigning against the punitive measures put in place within the benefit system, to now want to play an active part in that system, is disturbing. For them to use money donated by people in good faith as part of that, sickening.

And where does it leave our chances of major disability charities campaigning on our behalf against punitive benefit reforms? If they are hoping to profit from the legislation, I cannot see how we can expect adequate support or representation from them.

If Mind, Scope, Mencap, Leonard Cheshire et al win these contracts, will these charities, who are seen by many as the voice of disabled people, be playing a part in benefit sanctions? Will they be working with ATOS as colleagues? Will we ever trust them again?

(cross posted at incurable hippie blog)

DLA Consultation: The Internet Responds.

Yesterday, we posted Broken of Britain's response to the DLA reform consultation, and today I am going to try to read the government's consultation document itself.

Other disability blogs and websites have already done some great posts on this subject, and I wanted to draw attention to some of what is being said around the interwebz on the reform proposals.

Fighting Monsters writes From DLA to PIP - a consultation begins.

Arbitrary Constant writes DLA Reform Consultation: Great Expectations, Worst Apprehensions.

communitycare.co.uk write DLA claimants to miss out in benefits shake-up.

Disability Alliance write Government announces cuts to disabled people's support as "new test".

Left Foot Forward writes Supporting Disabled People Not Sustainable says Coalition.

Disabled People Against Cuts have a cartoon entitled Don't worry when we want your opinion we'll tell you what it is.

I don't know whether I'll be able to make my way through reading the consultation document myself without breaking things and / or having a complete meltdown, but if I do I will try to summarise it in a blog post when I have.

(cross-posted at incurable hippie blog)

DLA reform proposals: Great Expectations, Worst Apprehensions

Note: This is cross-posted from arbitrary constant

The coalition government today published its consultation on the reform of Disability Living Allowance (DLA). The headline is that DLA is going to be replaced by a "Personal Independence Payment" (PIP) from 2013/14.

DLA has been in the news a considerable amount since the emergency budget in June this year, primarily because it has been the main disability-focused benefit the government has looked to cut. I've blogged quite a lot on the topic: see here, here and all posts here.

As such, today's consultation on the reform of DLA is of huge significance and interest because it provides far more detail and intent of what is planned for DLA. Below, I summarise what I think are the key issues. (Via delicious you can keep track of other reactions via my tag DLAreform.)

1. The foreword states that:

We are committed to a sustainable and fair system that allows people to work when they can and provides unconditional support to those who are unable to work (emphasis added).

The idea that the reformed DLA system provides "unconditional" support is palpably nonsense. Moving from the system (where people can self-assess) to one where the explicit aim of the reform is to reduce the number of recipients and spend by 20% is quite the opposite.

2. These proposed reforms suggests introducing "conditionality" into the system (paragraph 2.35). The idea is that as part of the PIP, recipients will be required to discuss their circumstances with a professional who offers advice and "helps them access specialist support". I'll explore the intention behind this in point 3 below, but introducing conditionality into the DLA process is a huge shift. Whilst there's been some debate about whether conditionality in employment benefits is right or wrong, introducing it in a disability setting - where people have already passed through so many tests based on their often intimate and personal circumstances - will feel to many like they're being kicked when they are down.

3. Throughout the reform consultation there are references and suggestions that DLA should no longer cover the sorts of support it used to, to take account of the fact that aids, adaptations and equipment are now more part of the general landscape. So, where the mobility test used to be based on ability to walk, the mobility test will now be based on being able to get around - and if there's a wheelchair involved, that will suffice.

The question of how that wheelchair has been paid for - private money, health money, social care money - appears not to matter, which is obviously wrong. If an individual has paid for it, then they clearly had a mobility need. If the NHS or a Council has paid for it, then they obviously thought there was a mobility need. Though it seems innocuous, the intention of the conditionality above will actually require a potential recipient of DLA to explore what "specialist support" is avaliable apart from DLA. By introducing this, and the very narrow focus on what support is in place at the time of assessment, the impression is created that, so long as the need isn't met by the DLA budget, it doesn't matter where it's met from. What wider impact this will have on NHS and social care spending is currently unknown, but I'll bet they won't be pleased by this subtle but important chance.

4. The idea that DLA itself is a barrier for disabled people into employment (para 1.19) just isn't credible. Indeed, the DWP's own evidence (pdf) suggests otherwise. Even if we take this assertion at face value, I'm already hearing of restrictions of what Access to Work will and won't fund to enabled disabled people into employment. Thus, with the government also seeking to reduce what proportion of DLA is spent on aids, equipment etc., these two changes combined means the government significantly risks undermining its own policy of supporting people back into work.

5. The reform paper paints a very confused picture on costs and numbers. It states that over 3m people receive DLA - of which 1.8m are of working age (16-64) - with total spend this year being "forecast as £12bn". But the Dilnot Commission, based in the Department of Health, says that DLA for 16-64 year olds costs £5.487bn (in 2009/10). Furthermore, the DWP's own figures said that DLA cost £6.2bn in 2009/10. In the emergency budget, the government said they would save £1bn (or 20%) of the DLA budget, suggesting they were using the £5.487bn figure. If that's right, why quote the £12bn figure? (Quite aside from this, the government fails to mention that Attendance Allowance currently costs £7.505bn. More on that another time.)

6. A massive change - different to anything we've heard before - is that the DLA reforms are to extend beyond working age to cover children and those over 65 (paras 0.3, 1.14 and throughout). I don't recall the government saying that the DLA cuts will affect this group of 1.2m people, in either the CSR or the Budget. If this is true, the impacts will be huge (and go some way to explaining why the £12bn figure above is included.)

7. There is a mixed picture on the role of self-assessment. The government appears not to trust people applying for DLA under the current system, but thinks that self-review under the new one is fine (para 2.32). If self-assessment in social care, with its considerably larger budget, is acceptable (under the banner of personalisation), then why isn't it acceptable for DLA assessments?

8. In paragraph 1.10, the reform consultation states that "measuring each individual's expenditure would be administratively complex and expensive". And yet they think that checking everyone's needs won't be.

9. Paragraph 2.4 notes that the PIP will require a "new, fairer, objective assessment, which will allow [the government] to identify those who face the greatest need, in a more consistent and transparent manner". Transparency is, of course, to be welcomed. I will therefore look forward to full details of the contract between ATOS - who carry out the medical assessments for DLA on behalf of DWP - and the DWP, along with all its financial information, performance information and details of targets etc.

10. Paragraphs 2.33 and 2.34 talk about the "penalties" that will be put in place for individuals who don't report changes in their circumstances. It's a shame the report didn't take the opportunity to note that the fraud rate for DLA is 0.5% - a rate significantly lower than Income Support (2.9% fraud rate), Incapacity Benefit (1%) and Jobseekers Allowance (2.8%). Indeed, it's lower than the office error rate for the DWP, which stands at 0.6% (data: Benefit Scrounding Scum).

It's only fair to note that there are some good points in the reform paper:

1. Paragraph 2.18 talks about bringing the definition of those who could potentially get DLA into line with the legal definition of disability. This makes sense.

2. Maintaining DLA as a non means-tested, non-taxable, non-NI contributions dependent benefit is right, as is recognising its role as a passport to many other publicly-funded services.

3. Looking to align assessments across benefits, health and social care, and sharing information (with permission) across professionals about those assessments, could be a big win, for both individuals going through the process and to streamline administration (para 0.11). In its Right to Control work (on which I've written a series of posts) the government is developing an infrastructure that could enable this to happen.

4. Throughout this document, the government has finally and explicitly acknowledged that DLA is "not an income-replacement benefit for those who are out of work due to disability" (para 1.1). It's just a shame that the government did so much to encourage the perception of disability as an out-of-work benefit.

Overall, I'm afraid to say there is a lot for disabled people to be worried about in these proposals. There is no getting away from the fact the government has decided it wants to spend less on DLA and is justifying where it is going to draw the line to save the 20% they're looking for.

The most superficial of all the proposals is renaming what has become the potent "Disability Living Allowance" and replacing it with a "Personal Independence Payment", which has the unfortunate acronym PIP, which puts me in mind of Great Expectations.

The problem being, of course, that the government's reforms aren't something that disabled people can think of in terms of hope and promise. Instead, the reforms confirm the very Worst Apprehensions that we held over these reforms.

Cold Weather Payments

For those readers on qualifying benefits, you can check whether or not you are yet eligible for any Cold Weather Payments on this direct gov website.

Payments are made when the average temperature for where you live is recorded as, or forecast to be, zero degrees Celsius or below over seven consecutive days.

Also from direct.gov, who qualifies for Cold Weather Payments:

If you are in receipt of Pension Credit, Income Support, Income-based Jobseeker's Allowance or Income-related Employment and Support Allowance (ESA), you may also be able to get Cold Weather Payments.

You get £25 for each seven day period of very cold weather between 1 November and 31 March and it is paid automatically, you do not need to apply for it.

So, if you want to check whether you are due to receive one, you can do so here.

Cross-posted at incurable hippie blog.

Round-Up Post

There are plenty of must-read articles and blog posts which I haven't had the time or the spoons to cover. All of the following are well worth a look.

• Scope are running a survey about the real costs of being disabled, which you can fill in here.
  
• "On the Shoulders of the Vulnerable", an article from Morning Star with information about ATOS and how ESA medicals are failing disabled people, especially those of us with mental health problems.
  
• A Guardian article, Housing Benefit Cuts: What's the Real Truth?
  
• Laurie Penny in the New Statesman writes Strictly Come Scrounging, Anyone?, about The X Factor vision of society [which] blames the poor for their predicament.
  
• Hopi Sen and Left Futures point out the contradiction in David Cameron criticising those claiming over £20,000 in housing benefits, compared to his own expenses claims for his second home.
  
• Crisis, a national charity for single homeless people, have created a comprehensive, myth-busting press release full of information on how the government are 'peddling myths' to sell the Housing Benefit cuts.
  
• Lenin's Tomb deconstructs a Daily Mail article decrying 75% of Incapacity Benefit claimants as 'fit to work'.
  
• The same article is looked at on This Is My Blog, who looks in depth at 'abandoned claims' and why they might really happen.
  
• Susannah posts a plea for help, describing how the removal of the Mobility Component of DLA from people in residential care will directly affect her brother.
  

'Not Really Disabled'

This is a guest post by pinkpjs

Since May one of the most successful things to be achieved by the
condems seems to be the legitimisation of scapegoating and targeting
of disabled people so wiping away years of struggle for equality and
social justice by disabled people and effectively taking us back to
some very dark days when we are perceived not as human beings but as
'useless eaters' only this time we are undeserving liars and cheats as
well.

The extent of this was made more apparent to me two days after
listening in disbelief to the cheers greeting Osbourne's shock and awe
attack on services and benefits that we depend on for our health and
wellbeing.

As part of my job I had to attend a meeting with a manager working with
the DWP who told me that their role was to support disabled people to
receive benefits they are entitled to.

I asked them about the changes to DLA in particular and the impact of
people in residential care and was shocked to be told that 'they don't
really need the mobility allowance as most of them rarely go out except
to medical appointments and then the staff are more than happy to take
them, so it is only fair that they shouldn't get this'.

Then, the response to my question about any other changes to DLA which
the condems have hinted at, was 'well, we all know that many people
currently getting this really aren't disabled and shouldn't be getting
it'.

I was left quite speechless at the blatant way this manager in their
professional capacity expressed their opinions which I'm assuming are
not based on fact but on propaganda, especially as this leads me to
believe this could effectively mean that clients will not get benefits
they are entitled to.

Also, they do not know me and do not know that I have a hidden mental
health impairment and have had years of struggle to both get and keep
jobs and receive DLA which they presumably think I am not entitled to
but which actually supports and enables me to work.

They also do not know that I have been in a residential treatment unit
and depended on the mobility component of DLA in order to maintain
contact with my family and especially my children and my friends which
was vital to my recovery and to mine and my children's right to family
life, especially as I was 50 miles away from my home.

They did not know that I have many disabled friends who would see their
attitudes as deeply disciminating and offensive.

And now Labour have stated they support the condems over this I feel
that politicians think it is fair to deny disabled people hope.

Another Video Against Disability Benefit Cuts

Following this video, I was inspired to make a video too. I didn't want to post it here until I had a transcript, but that's not been forthcoming so far, so for now, here's the video.

If anybody would like to transcribe it for us, that would be great. Alternatively I will try to get one done. So apologies to those for whom this is not yet accessible. Transcript now added below the video.



[The last few days I've watched the videos from BendyGirl at Benefit Scrounging Scum, and I loved them, I thought they were brilliant. But I never thought it was something I could do, until in her second video she pointed out how important it is for everyone to speak out.

Like many, many people I am frightened by the proposed changes, the cuts, to disability benefits, and what's going to happen to services and the third sector.

The thought of withdrawing mobility rate... the thought of withdrawing the mobility section of DLA for people in care homes is disgusting. The thought that just because somebody was living in a care home, they no longer need to go anywhere, they no longer need mobility equipment, is just obscene.

The changes in housing benefit rules so that people under 35 in private rented accommodation can't get full housing benefit if they live on their own is disgusting.

And limiting ESA to one year, when so many people were fighting against the very principle of ESA at all, and now to have to change that fight to at least, it was perhaps better than nothing, and if people are going to be put on it because they are considered fit to work, even though we know that many, many people who are not fit for work are being put on ESA, the fact that that's now limited to one year, and nobody seems to know what would happen after that.

When we are in a recession, and people – everybody who isn't working is finding it difficult to find jobs, and the strange assumption that the few jobs that there are will go to disabled people, is just not unfortunately how this society works. Disablism means that disabled people are discriminated against every day, and that includes the disabled person who is well enough to work can find it more difficult to find that job because employers are frightened, or don't want to make changes, or don't know what it means.

I'm frightened. And I'm also, like many other people, very confused. I watched the budget on Wednesday, and I was thankfully using twitter at the same time because there were many aspects that I didn't understand, or that I thought I must have misheard. And that there was a group of us all watching and using twitter at the same time made it more accessible to me, I guess.

But there are many unanswered questions. I've heard of people ringing the DWP to say, 'What's this about ESA being stopped after a year?' and the DWP not being able to answer, because they don't know.

The Housing Benefit cuts, I've heard so many different stories about who it's being cut for. So it's not just that the changes are frightening, it's that they're very unclear, and people don't know where they stand.

When I first became ill and went on benefits, I just got Income Support, and it was a horrible time. With paying part of my rent out of that, and with making debt repayments out of that, I had £15 a week for food, and electricity, and transport. For months I lived on... I used to buy these tins of Irish Stew from Kwik Save, and they were disgusting, but they were really cheap, and I figured it was as close to a balanced diet as I could get because it had meat and potatoes in it. And for months, every day, I had one meal a day, and that consisted of Kwik Save Irish Stew and as much bread as I could eat. Every day. For months. I couldn't afford sanitary towels, I couldn't afford shampoo.

I didn't know about other benefits. And someone told me about DLA and I applied for it, and I eventually got it, and it was one of the key... it was key for me, it was vital. Because my health was bad enough anyway, it was vital for me because I could afford to eat more than Irish Stew. I could afford to go to places on the bus. And I'm talking medical appointments. Before that I was missing medical appointments because I couldn't afford to get there. I could get taxis. I could get ready meals when I wasn't well enough to cook.

Getting DLA literally changed everything for me. And makes, still makes, such a difference. It means that I can afford the extra things I need because I'm disabled. Like taxis. Like ready meals when I can't cook. Like mobility aids, and other aids I use. DLA, along with everything, is being threatened. With ATOS taking over the medicals. And after what they've done with the ESA medicals that's frightening, and many people who need DLA are going to lose it.

Everything that is happening since the new government came in is frightening to disabled people. And I'm not a Labour supporter. I know that various important Labour politicians have come out and said that they would be doing what the Conservatives are doing with regard to disability benefits. So I'm not falling into the trap of saying, 'the coalition government is awful, Labour is the answer', because they are... although they are fighting some aspects of the budget, they are supporting the disability benefit cuts.

I feel like I'm being punished for being disabled. The press and the government are doing a really good job at the moment of whipping up hatred, whipping up this image of disabled people being scroungers, of disabled people not really being disabled, and being workshy and lazy. The government and certain parts of the press are promoting this strongly and I can feel, in the atmosphere, that this is affecting people's views. And with the further cuts, this gets worse and worse.

What depresses me is not my illness. What depresses me is not my impairment. What depresses me is how I am treated because of it. That's what makes everything so much harder. We do need to speak out. Because disabled people are being scapegoated and it's horrible. And for non-disabled people, you don't know what's round the corner. I became disabled. Many people become disabled. It could be you in a few years, with no care packages, with no benefits, with no support. With people thinking... with people thinking you're lazy or can't be bothered, or exaggerating. Nobody's immune from disability. And there are some people in the government, the Prime Minister included, who really should know that through their own lives. I am so... I'm frightened, and I want to give a message of hope, but at the moment it's hard to find one.

So I'll agree with BendyGirl that the hope... maybe we have to get hope from each other... from knowing it's not just us, it's not just me that's frightened, it's not just me that's confused, who doesn't know what's happening and what's going to happen.

We're all in this together.]

An Easy Way to Email your MP to Protest Benefit Cuts.

Scope are running a campaign to email your MP to ask them to take action immediately to oppose the cuts to the public services and benefits that many disabled people in the UK use and rely on.

All you have to do is fill in your contact details, then your MP's email address is automatically found and you can read and alter the proposed message before you confirm that you would like it to be sent.

So, email your MP to protest the proposed cuts here.

Cross-posted at incurable hippie blog.

Q.61 Please tell us anything else you think we should know about your (DLA) claim

This is the actual answer provided on my current application for Disability Living Allowance for Q.61 Please tell us anything else you think we should know about your claim. This post should be read in conjunction with the part answer to Q.31 Do you need someone with you to guide or supervise you when walking outdoors in unfamiliar places in the blog Helping Hands, and the blog Page 18, Other Information IB50 form.

I was diagnosed with Ehlers Danlos Syndrome in 2004 after many years of being fobbed off and dismissed by medical professionals. After so long living with increased disability without knowing the reasons why I was relieved just to get an answer. Perhaps naively I hoped that diagnosis would be the first step towards getting better and regaining the many things I'd lost, friends, relationships, career and family. 

Day to day my life just is what it is, constant pain, dislocating joints, medications, falls, choking, incontinence, mobility equipment and many other indignities are always there but things I deliberately choose not to consider. I make jokes out of difficult situations, give mumbled half answers when people ask how I am, or just insist I'm fine even when it is patently obvious to everyone that I am anything but. I do this because to focus on the difficult things would make me incredibly depressed and to be blunt, I have enough problems already. Depression would just tip me over the edge. So instead I slap a smile on my face, no matter how hard or horrible the day. I smile because otherwise I'd cry and that just gives me a headache. I choose to be happy by focusing on how fortunate I am to have a roof over my head, to be able to see the sun shine, and to live in a country which still, just about, believes that looking after those who are more vulnerable is a collective responsibility. 

Filling out these forms has been a depressing and traumatic process for me. What I expected to be a straightforward task of explaining my disability has actually been a complex and difficult confrontation of the issues I face but choose not to think about on a day to day basis. Not only does it hurt my hands, but it breaks my heart to type the words I avoid saying out loud. That for the past six years I have fought every day; to gain an understanding of my condition, to take the correct medications, to eat the right food, to do the endless, painful, frustrating and incredibly boring physiotherapy exercises, to accept having to use a wheelchair, to learn to accept that the physical pain which is my constant companion will never go away, and will instead be joined by the emotional pain of a million tiny losses. 

It has taken me weeks to fill out this form as every time I try to answer a question I give up. How can I explain what it's like to have forgotten how not being in pain feels? That even the smallest movement can cause one or more joints to dislocate. What it's like to try and do even the simplest tasks with joints that won't hold themselves together, let alone do anything of practical value. When I dislocate my knee just rolling over in bed it's easy to swear a bit and refuse to think about the white hot pain, or subsequent tears, or the shoulder that's dislocated trying to relocate the knee, but that filling that information out on a form defeats me. All those individual dislocations and consequent lost opportunities I ignore in favour of those created, but to see them in glaring detail, not just once but the 53 different ways required by an official form is too much for me to bear.