Stephen's ESA Migration Experience

Several of our friends and contacts are being migrated from Incapacity Benefits to the dreaded Employment & Support Allowance at the moment and a lot of people are anxious. Stephen has been through this and decided to share his experience in case it is helpful for people facing the same process.

 Cross-posted at Single Lens Reflections

Link to the MP3 for download

Transcript:


Form filling is one of the most destructive parts of life as a disabled person. In order to fill in a form properly, you have to look at your life and pour your heart out onto paper, listing all the ways you don't measure up, only for that to be judged by an annonymous force of terror (who probably wears black and cackles all the time). I'm recording this to share my experiences and hopefully to de-mystify the process. Deborah, also known as the Goldfish, helped me with all the stages of my transfer to ESA from Incapacity Benefit, and it is she who has come up with what we think are the four most useful points to pass on to other people. She's cleverer than I, so I'm going along with it all. OK, so starting at the beginning.

The first point is that we were ready for an epic saga with dark nights and long battles. Frankly, I thought ESA would turn into a bureaucratic version of the Lord of the Rings. People are being turned down all the time. When you see this, and people being placed in the Work Group when that's inappropriate, it's hard not to imagine yourself in that position. This is made worse when the condition from which you suffer is one which is invisible or subjective or both. I have ME and this causes me extreme chronic pain, fatigue, neurological symptoms etc. Aside from looking a wreck, there are no tests that can be done to prove or disprove this. And, indeed, there are people with ME who have different, less severe symptoms and whom recover from it in a relatively short space of time. There are many conditions which put people in the same boat.

Meanwhile, because of the particular luxury yacht in which we sail, we are often people who live quietly at home and who only deal with the medical profession when something new or interesting occurs. I saw a pediatrician for many years, but since I turned eighteen, I've had very little to do with doctors at all. As such, I don't have the backup of a team of specialist doctors who understand every aspect of my health, my lifestyle or my abilities (or lack thereof).

So you can see why I was in a bit of a state. But I can tell you now that I was very lucky. I have been placed in the Support Group, and I didn't even have an interview. This was the very best case scenario, and I couldn't have dreamed of it happening. So that's a positive point that others facing this transition should take comfort in; I may be more ill than many people on incapacity benefits, but from past experience and the experiences of others, Deborah and I considered me vulnerable to being turned down and messed about with. Yet none of my fears were realised.

You'd think, then, having been put in the support group without interview, that all the communication I had with ATOS would have been stress free and easy. Alas this was not the case and given that lots of people are worried about the transition, you should be warned about this.

The first telephone communication I had (to change the phone number on which they'd contact me) was very easy and pleasant. The second phone call (to check I knew what was going to happen) was likewise pleasant. However, it was at this point that I raised the issue of face to face assessment. I knew I'd not be able to travel to the assessment venue and so wanted to arrange for a home visit where I could be at my best and have others present to support me (something which I'd had previously). I was told that this would be no problem and that I should just write on my form that this would be necessary and they'd take it from there. So the form came and we took our time. It was posted off and seemed to take an age to get any response. I began to worry in case it had not got to them. Deborah even phoned to ask if they'd recieved it, but they couldn't tell us anything other than it might take a while.

Finally I heard back from them, but this came in the form of a phone call to arrange a face to face interview despite my having specifically said that this wasn't possible in my form. "Oh, no problem," says the ATOS chap on the phone "You just have to make an appointment for the interview anyway and get your GP to fax a letter in the next few weeks to say you won't be able to make it. Then we can set about making the arrangements for a home visit." As you can imagine, this was rather a shock. It was impossible to arrange an phone appointment with my GP in time, so I had to send a letter asking the doctor to write a letter to ATOS and then fax it to them. Given that my GP only works a few days each week, I had to do this straight away in order for there to be any hope she could do it. I simply wasn't well enough to write a letter that day, so Deborah had to rattle one off there and then, a feat which cost her the rest of the day.

Of course, the implication was that if I couldn't get my GP to write this letter, I would lose the benefit for failing to attend the interview.

My next communication from ATOS was a confirmation of my appointment at the interview venue. It even included a helpful print off of the public transport journey to the venue (90 minutes including 35 minutes of walking). That didn't help stress levels. The final communication came, however, in the form of a phone call to say that they had recieved a letter from my GP (which I presumed to be the confirmation that I wasn't able to attend the interview, but which turned out to be the original confirmation that the information I provided with my ESA form was correct and that I had ME and was in as decrepit a state as I'd declared). Because of this, they'd decided to move me straight into the Support Group and that was that.

What's the point of this saga? Well, whatever position you're in, you're likely to recieve communications which suggest that no one believes you're ill. To be given a route with 35 minutes walk when I'd written in my form that I couldn't walk more than 20 yards? To seemingly ignore my request for a home visit? It seemed a personal attack. In reality, though, it's just a terribly designed system that treats people as guilty at a base level. 

My final two points are advise with the actual form filling. Firstly, the form isn't helpful. Impairments are broken down into either physical and sensory or intellectual and emotional. There is no real place for the problems surrounding fatigue, cognative dysfunction etc. It is up to you, therefore, to work those issues into the answers you provide in the text boxes. We took a long time formulating answers, and did the whole thing on the computer (finally printing the answers and sticking them in, in a process not disimmilar to a primary school project book. If only we'd been able to use glitter...). Anyway, the point is that we had to be careful to write out these detailed answers so people can understand how damaging these symptoms are and how they render work impossible. We believe that fatigue and cognitive dysfunction is a major incapacitating factor for almost everyone with a chronic condition, be that physical, mental or both. So it's extremely important you not let it get lost out in a form which seems not to have a section for it.

Secondly, the law is very clear that in order to be able to do something, whatever that something may be (walk up stairs, use a telephone, discuss an issue with a stranger, etc), you need to be able to do it "reliably, repeatedly and safely". Can you answer the phone and talk to a stranger? Maybe you can. Can you answer the phone and talk to a stranger several times over, as you might have to if you were working as, say, a receptionist or someone working on a call centre? Well, that's a very different proposition. The form does not even hint at the importance of "reliably, repeatedly and safely" at any point. That means that you have to make it obvious in your answers. I can make a phone call. However, I have to be very careful when I do. I have to set aside energy. I have to limit the time on the phone (or else get a headache and neck/shoulder/arm pain) and if it goes on too long I'm likely to not make much sense. I cannot make several phone calls in any given day, or even any given week. If I had to make a phone call this afternoon, or any afternoon when I've used the day's energy on something else, it could not be done.

You must explain always thinking 'if I were in a job, in what way would this symptom be an issue'.  Spell it out and be brave.

So if you are, or will soon be, dealing with the ESA quest, remember to keep your sword sharp and your shield high. And if possible, keep hope in your heart. I wish I'd tried harder to heed that advice, but luckily I had Deborah to keep me safe and hopeful. But I'm not sharing her.

Heart-Shaped Plectrum

(Click the CC button for Closed Captions).

I wanted to write a blog post about ukuleles, so Stephen and I spoke about what photographs we could take to accompany the post - ukuleles being very beautiful instruments.  This conversation evolved into a great deal of messing about and all of a sudden (many weeks later) we had produced a music video. That's my story and I'm sticking to it.

I'm still going to publish the ukulele post, but for your information, the first ukulele is a concert uke, the second is a soprano we made ourselves in the summer of 2010 from a kit like this and the third is a tenor.

The great picture of the rock-hopper penguins is by Liam Quinn.

Heart-Shaped Ukuelele Plectrums can be bought from this eBay shop.


Stephen says: Love's a funny thing. It can drive you to do all manner of strange things.

 I think the thing about true love, though, is that once you've done that thing (even if it's taken weeks) and you've had time to look back at it and understand the mind-boggling oddness of it all, you still feel proud. It still warms your heart and gives you a sense of completeness.

That said, if you haven't yet made your peace with the infinite, then I suggest you think twice before pressing play.

So, I hope that whoever you are, and whatever it is that you love (a special person, pet, food-stuff, view, group of people, artwork etc), that you spend the day cuddled up with a comfortable... comforting... sense of the oddness of all things and the truly humanising effect of affection.

Mad, Bad & Dangerous to Say

For the most part, it is very easy to avoid disability-related slurs in British English. Nobody ever needs to say spaz, cripple, retard, mong etc.. People are clumsier with other language such as wheelchair-bound (outside an S & M context) or saying able-bodied when they mean non-disabled, but there are few excuses for the words that really sting.

In American English, things get a little trickier when you want discuss the common and unrelated matter of stupidity. Psychologists ruined several serviceable words for foolishness by categorising people with intellectual impairments (including categories of people to be forcibly sterilised) as dull, moron, idiot, even stupid itself*. The FWD (feminists with disabilities) blog did a number of Ableist Word Profiles which discussed some of this language. 

In British English, foolishness or stupidity is all about behaviour and to my educated by not infallible knowledge, stupid people have always done stupid things, regardless of their IQ. When it came to not looking after people with intellectual impairment, we used imbecile a fair amount, but otherwise stuck to pleasant euphemisms such as feebled-minded, half-witted, backward and as one friend was cast in his youth, educationally subnormal. Special needs, basically.

There is, however, a problem with the language of mental health and the language of - I struggle to come up with a neutral term for the thing - outlandish irrational behaviour? For now, let's pencil in craziness. I feel this shouldn't be any problem for me - I have plenty of experience of mental ill health, I studied psychology and am acutely aware of the way diagnostic labels take on a cultural meaning which may have little bearing on what it's like to live with any given condition. As a disability activist, I'm also aware that people with mental illness are among the most vulnerable disabled people, not least because they're often left outside discussions of disability. I feel I should be able to talk about the world without any fear of using problematic language, but I'm not sure I can.

Yet this other thing is something we do have to describe. It's usually in the negative, although my choise of craziness is frequently used to describe positive exuberance or else a kind of higgledy-pigglediness; crazy in love, football-crazy, crazy paving, crazy quilting, crazy golf, crazy discounts in our mid-winter sale, “Oh we're never going to survive unless we go a little crazy”, etc.. People describe themselves as crazy when they mean quirky, fun-loving, impulsive and a bit annoying (well, maybe they don't mean annoying, but people who describe themselves as crazy often are). There are companies with crazy in the title, which just isn't the case for most slurs around mental illness – you could have a shop called the Crazy Pet Store, but the Psycho Pet Store? Not so much. Although I'd totally shop for a hamster there!

Usually when we reach for words to describe craziness, we're wanting to describe something which is not only bad but baffling in its wrongness, an extreme behaviour which defies all logic, common sense and decency. As well as a strong cultural tendency to explain heinous crimes in terms of mental illness, to tidy away messy and monstrous behaviour with neat labels and expert speculation, we reach for words which condemn in tone as well as vaguely-pathological definition; psychopath, psycho, sociopath, unhinged, deranged, maniac, mental etc.. Words which reference mental illness but get mixed in with evil, monster, freak. When we mix up the words, we mix up the ideas and leave people with mental ill health extremely vulnerable to fear and hate.

The opposite of craziness is also something we need to describe. When I talk about my experience of Post Traumatic Stress Disorder, I have to phrase it in terms of the jolt I received when I became sane. This sanity does not equate to mental health – clearly not, given that it co-incided with a psychological disorder – but only after I escaped and began to value myself, did the full horror of my violent marriage catch up with me. Even while I felt very sorry for my ex, my brain began to respond to thoughts of him, let alone contact with him, with abject terror, flashbacks and panic attacks. And although those things were disproportionate – I was perfectly safe by then, after all – it is completely sane to be terrified of someone who has frequently assaulted you and felt justified in their actions.

Although legally, sanity and insanity have specific definitions which refer to one's state of mind, none of these relate directly to mental health. For example, most people with even severe mental illnesses can vote, sign legal documents, and indeed, be held culpable for any criminal acts they commit – even if they have had their freedom taken away for safety reasons (psychiatric patients can be denied all these rights and responsibilities, but it's not a default thing). It's very rare indeed that people with chronic mental ill health slip over to being insane. Insanity is about losing touch of the fundamentals, particularly right and wrong.

There are lots of criminal acts which suggest insanity but, like the vast majority of crimes, are committed by people who have no diagnosable mental health condition. So for example, there's a very great deal of debate about the sanity of the Norwegian mass-murderer whose name I refuse to remember. The question of whether he was sane when he murdered seventy-seven people seems separate from the question of whether he had a mental illness.

Yet as I see it – and I'd really love to be corrected on this – the common usage of our language doesn't truly differentiate. Crazy is still a word which has great significance for many people with mental ill health, who have been dismissed, feared and attacked as crazy. As well as the impulsive fun-loving “crazy”, some people with mental illness identify themselves as crazy, as others identify themselves as mad. Sanity is still talked about very much in relation to mental health.

So where are the words we can use which don't muddle the medical with the non-medical?

(By the way, I don't mean to suggest that disabled people only have to worry about disability-related slurs. I don't think any of us think of a fool meaning someone with intellectual impairments, but recently this word was shaved onto the back of an unsuspecting man's head. I strongly dislike the word stupid because for years it was used to berate me for my poor co-ordination and cognitive dysfunction. Stupidity is a thing, but I do hate to hear anybody called it. Disabled people are called plenty of nasty names which have nothing to do with us.)

* Happily, the pain-stakingly categorical language of the mostly American psychologists and eugenicists did lead to Aldous Huxley coming up with classes of supposedly inferior people such as the “Epsilon Minus Semi-Moron” in Brave New World, which does roll off the tongue rather nicely when dealing with unco-operative broadband providers. Not really – as I recall, the Epsilon Minus Semi-Morons were very good at their jobs! No, really, of course, I don't call people names. Much.

Let The Right One In / Let Me In

Let the Right One In (2008) was the best horror movie of the last decade. It manages depths of character and visual beauty that few films rival, let alone films within a genre dominated by archetypes and little more than padding between the shocks and thrills. You know sometimes you connect with a film on a romantic level? Well, I did. It comes very close to perfect. Stephen reviewed the film as an adaptation of the original book last year.

You can guess how I felt about the news that they were making an American version. But it was being directed by Matt Reeves, who made the excellent Cloverfield, and the buzz about the remake was that it wasn't quite as awful as it could be. So we had to take a look.

I didn't decide to write a review in which I slate one film for being a pale imitation of another. I decided to write a review because in many ways, everything that's wrong with the American remake Let Me In (2010) demonstrates what is so right about Let The Right One In.

Both films are about a twelve year old boy, who meets a new neighbour of the same age, who turns out to be a vampire and helps him stand up to his bullies. Between them, these two films showcase four excellent child actors, who all did brilliantly with what they had to work with. None of those kids can be faulted. Some other things can be.

Let The Right One In is a brilliant study in how to paint character with very few brush-strokes. We understand the protagonist Oscar, we understand his relationship with his parents – including his love for them and his profound sense of betrayal by them, without more than a few glimpses into his back story. We understand his helplessness against his bullies and the raw impotent rage this draws from him. We know something of Eli's relationship with the man who goes out to murder for her, although there is ambiguity here. We know that he adores her and is not a natural killer - he's a bumbler. The American version was far more efficient, creepy and altogether less likely.

There are very few films that really invoke how it is to be a pubescent child (or at least, the kind of child I was). The intrigues and frustrations of that age, where your own fantasies have taken the place of second-hand make-believe and the world grows a little darker and richer for it. At twelve years old, we knew what we have largely forgotten since; There are dangerous people in the world and some of them are children.

In Let The Right One In, the bullies are sadists, monstrous: ordinary kids. It doesn't matter to us or Oscar what made them that way – unlike his American counterpart, Oscar never needs to ask if there is evil in the world because he encounters it every day. In Let Me In, the bullies talk too much.  Their greater size and strength, together with their preoccupation with masculinity – constantly taunting that their victim is a little girl - make them pathetic rather than menacing. As a viewer, I'm well aware that I am grown up and could shrink them down to size with a few cutting words. I'd also ask their victim what was so wrong with being a little girl? 

But then, apparently, femininity sucks in 1983 America. The boy's father informs him that his mother is sick and has funny ideas about things. We see no evidence of this so I'm not sure if we're supposed to believe it – we never see the boy's mother's face, and we're not given any clue as to how he feels about her either way, just that he can't turn to her in his struggle against the bullies. We know she's religious – perhaps from that we're supposed to assume that she's an intolerable harridan? Elsewhere, we're treated to the horror movie convention that if you've seen a woman's breast, she's thereafter fated to die a horrible death without getting a single line of dialogue. 

All ambiguity around gender and sexuality has been painstakingly removed by the American film-makers. Yes, this is a hobby-horse of mine, but it matters! It's hard to tell ninety minute stories which reflect the full range of gender and sexual variation, but with ambiguity, you feel like you might be being represented in there somewhere.

Twelve year old sexuality is almost always ambiguous. You're twelve! Your own body becomes mysterious to you, let alone other people and their bodies. In Hollywood, this isn't allowed to be the case. On the one hand, they weren't comfortable, as the Swedes were, for the camera to linger on a half-naked twelve year old, because you know, that would be weird – you can only show naked people that the viewer is allowed to lust after! But then, moments after we've first met the boy, we see him using his telescope to spy on his neighbours' making love. So we can see the naked breast of Sexy-Bound-To-Die-Now-Lady. So we can see the boy is normal, because he infringes upon the privacy of people with breasts.

Whereas when, in Let The Right One In, the beautiful androgynous Eli asked Oscar if he'd still like her if she wasn't a girl, we sense the question has two meanings: What if Eli was not human? What if Eli had a different gender?

Later, we see a fleeting glimpse of a genital scar on Eli. The American vampire is unambiguously feminine. She's blonde, conventionally pretty and romantic and never even bedraggled. When she attacks someone, her face changes shape, in true Buffy tradition, because you can't have pretty girls do monstrous things whilst still looking like a pretty girl.

Finally, Let The Right One In is such a beautiful film. You can smell the fresh snow and taste the cold night air, feel all the textures as well as the warm breath and cold touch of the characters. The Scandavians know how to film snow. Snow and Fairisle jumpers. There are long periods and big wide shots of stillness or relative stillness, but never any drag. Although there is blood, gore and pretty awful (as in both severe and ropey) burns injuries, these moments are chosen and handled carefully. The climax of the film is horrific, shocking and wonderful and involves bright lights and very little blood indeed.

The Americans decided to represent the early 80s by making the whole world a little bit dingy. Despite the snow, there was more a sense of damp than the dry cold of the Swedish film. They did some things very well – in particular, there was a new scene with a fabulous tracking shot, with a camera mounted inside a car as it crashes and rolls down a hill. They did however enter the running for my new film award category "Most superfluous use of CGI in a scene that might have been scary otherwise" when they decided that a small child clinging to a grown man as she sucks the blood out of his throat just isn't scary enough. And although there was much similarity to the original film's climax, they reduced the light, added gore and (literally) threw in a severed head.

I can't discourage anyone (except those who just don't like scary films at all) from watching either movie. The trouble is that of its genre, Let Me In isn't a bad film by any stretch of the imagination.  It's just that it's an Americanised, simplified and straightened-out version of an absolute masterpiece. 

The Welfare Reform Bill: What's wrong with time-limiting contributory ESA?

Another summarising primer on these issues for people who aren't necessarily aware of what's going on with UK disability benefits. If you know all about this already, click here for what we need to do about it today.

There are a few reasons why ESA has not become a national scandal, and one of those is that it sounds complicated. But it is vitally important, if you live in the UK it effects you and I am to try to keep this simple, so please bear with me.

Employment Support Allowance is replacing all the old incapacity benefits. It is awarded to people who are considered unable to work due to illness, injury or disability. There are various different levels of benefit, depending on one's level of impairment and National Insurance contributions.

The most serious issue about ESA in the Welfare Reform bill is that for most people on the benefit, there will be a time-limit of one year. These are people who

• (a) are considered unable to work but not considered incapable of work-related activity (people in the "Work Group"). Most people on ESA fall into this category, and it includes people with all manner of severe, chronic and even life-threatening conditions.

• (b) have paid enough National Insurance to be put on the "Contributory" rate. So all of these people have either worked and paid taxes for many years or else became disabled at a very young age. Most people who become incapacitated for work do so in middle-age, so most people on ESA, as with the old Incapacity Benefit, had worked for most of their lives up until that point. 

After a year, all a person's benefit will be means-tested. This means, if they have a working partner or any savings, then they will not have any income of their own. Those disabled people affected by this change were informed last April, before any parliamentary votes on the matter, that they would lose their benefit after one year. This is going to start effecting people's lives in three months time.

There are four very serious problems with this proposal

1. Hardship

Wealthier people, whose partners have well-paid jobs are unlikely to experience real hardship. Single people without savings will not become much poorer. However, the Disability Alliance calculates that on average, a person on this benefit will lose £50 per week. Many people will lose closer to £100.

A partner's income begins to effect benefits at £7500 a year - that's about a twenty-four hour working week at minimum wage. That's still a rather poor household, who cannot afford to lose a penny.

Benefits for people out of work due to ill health have always been higher than unemployment benefit because

• (a) Disabled people have very limited opportunities to improve their situation, which is likely to be longer-term or lifelong - the government's own statistic is that 94% of the ESA "Work" group will not be in work by the end of their first year.
• (b) Disabled life is more expensive. We have fewer opportunities to live frugally, such as turning down the thermostat, washing ourselves, our clothes and bed linen less often, cooking from scratch, selling the car etc.. Meanwhile, partner's of disabled people often can't afford to take on extra hours or a second job, even if they are not an official "carer". 

Often, people dismiss arguments about hardship on the grounds that poor people get “their rent paid” and all sorts of other goodies. First off, if you don't qualify for a means-tested benefit, you don't automatically qualify for Local Housing Allowance, Council Tax Benefit, Free Prescriptions and so on. Not all poor people rent - they may have a nearly-paid mortgage at the point the main breadwinner gets sick. And these days, social housing is extremely hard come by and Local Housing Allowance isn't stretching to cover many private rents, especially not accessible accommodation. When the cuts kick in, there will be a shortfall of £150 a month between the cheapest place I could physically live in my area and the amount of Local Housing Allowance I would be eligible for.

2. Hopelessness


Becoming incapacitated for work involves many losses and a loss of income, together with a more frugal lifestyle is inevitable. Nobody asks that those unable to work should be paid anything like what a person could earn in work.

However, some disabled people have savings or money they've inherited.  People affected by the time-limit will face the prospect of having to live off this money, which either they or someone else had worked hard for, resisting all the temptations they might have spent it on.

There has always been some irony in the disincentives to save money for people who might end up on means-tested benefits, but for disabled people, who crucially, have no other means of improving their situation, this seems particularly unfair. Especially, when the three most common scenarios for a disabled person with savings would be either

• (a) They worked very hard for many years and lived very frugally until they became disabled or
• (b) Because of their care needs, they were unable to move out their parents' home, so had low living expenses and chose not to squander their low incomes or
• (c) Someone else, feeling that the disabled person's future looked bleak, gave or left them a lump sum towards their future security and independence.

3. Pressure on Sick People.

There's no condition in the world, physical, sensory, mental or intellectual, which might benefit from a ticking clock. In fact, I believe the presence of a time limit could be deadly dangerous in two ways:

• (a) An increased risk of suicide. When my physical health has been so bad that I have felt like giving up, I have often found deadlines useful. I have thought, “If it is still like this next month, I will kill myself and it'll all be over and done with.” I have experienced depression at times, but usually such deals have been made on the grounds of being thoroughly fed up. Friends with chronic mental illness have talked about doing the same thing in order to put off that terminal decision, whilst leaving the option open for later. However, I also know people who set a date and then proceeded to make a serious attempt on their lives. And this is when the deadline merely signified, “It's gone on too long now.” rather than, “It's gone on too long and I am about to lose all my income."

Last January, Aliquant wrote this post about how, feeling cornered by the benefits system, suicide seemed quite rational. It's a powerful post because Ali was so articulate; she simply couldn't cope with the risk of more homelessness, further hardship or having to jump through any more hoops. Soon after, 5 Quid for Life was set up, a charity to help people like Ali survive when things go wrong. Since then, the benefits situation has been implicated in at least ten suicides.

• (b) A disincentive to self-management. Looking after your health, when your health is poor, is jolly hard work. Taking unpleasant medication, getting the right amount of exercise, preparing and eating the right food, resting and sleeping when you need to, visiting the appropriate healthcare workers, getting new complications and injuries treated and resisting naughty behaviours that will set you back, can feel like a full-time occupation. If you know that after a year, you're going to lose all income, unless your health significantly deteriorates, then you've got another major disincentive to look after yourself. I don't believe for a minute that anyone would choose to make themselves more ill, to suffer more and to deal with more health-related rigarmorale, even to shorten one's life expectancy. But a system is being created where being a good patient, hard as that is, could actually cost you money. 

I actually find it very distressing when people with far more energy than me fail to look after their health, although looking after is subjective and it is absolutely none of my business anyway. It's probably natural to worry about things that have happened to me happening to other people. However, as some disabled people involved in anti-cuts activism work themselves into the ground and expend twice as much energy in a week than I have in any given year, I am able to reassure myself that, as long as they stay alive, they'll probably wind up too sick to be effected by the time-limit. This situation is all kinds of wrong. There shouldn't be any advantage to getting sicker.


4. Damage Caused to Relationships

Money can't buy you love and poverty doesn't destroy it, but relationships can become a lot tougher when when one partner has literally no income and crucially, no means of bringing in money if they want to. I see three effects of this:

• (a) The time-limit interferes with the future relationships of single disabled people. Lisa has written about how the combination of poverty and disability dramatically reduces one's romantic chances, and the prospect of complete financial dependence will make this worse. Means-tested benefits force claimants to either restrict themselves to very casual and discreet relationships or else to place themselves in complete financial dependence on a partner the moment they begin living together – a moment which is rarely well-defined. 

• (b) The time-limit threatens to undermine existing relationships. Sue has described her fears of becoming a burden on her husband. As Shana Pezaro described, desertion is not an uncommon experience in the face of chronic illness, especially among heterosexual women, and the prospect of total financial dependence will only add to this problem. Some families, especially those with children, may even find that they would be financially better off if they occupied two different households. 

• (c) The time-limit makes disabled men and women, who are already more likely to experience domestic abuse, even more vulnerable. Disabled people are already twice as likely to experience domestic violence. If you have no income at all, then it becomes easy for an abusive partner to completely deny you access to money, to complain about or restrict your expenditure, whether on food or phone calls, bus fare or medicines. It becomes easy for an abuser to tell you what a burden you are, and how you owe them or deserve to be mistreated, when you are both financially and practically dependent on them.   

Unemployed single parents of small children have long had this problematic status, where benefit rules prevent them from having romantic relationships which progress out in the open and at their own natural pace and where the prospect of complete financial dependence can make a person feel as if they are less valuable. This is one of the major reasons that make such families particularly vulnerable to dysfunctional and abusive relationships.


The government's motives for this are deeply cynical.


Years back, when ESA was first discussed by the then Labour Government, the disability blogosphere and messageboards were awash with anxiety about sick people being pressured into work that they just couldn't get. I wrote a post on BBC Ouch! explaining that logically, we had nothing to fear. If Employment Support Allowance was to have a "Work Group", the government simply had to get these people into work. If vast numbers of us were placed in this Work Group, who didn't have a hope of getting a job, we would become bad statistics.

The Conservative Government came up with a way round this, which is to make these people disappear. Anyone on this band of ESA with savings or a working partner will simply disappear after twelve months.  They will not add to the unemployment statistics because they have been declared unfit for work. They will not be claiming any benefit at all.

Here is the link I gave you at the top: This is what we need to do now.


(A draft version of this may have appeared in your feed-reader last night - sorry about that! I was so confident that I couldn't accidentally publish my drafted post in the new style Blogger (as I often did in the old one), but hey, I found a way.)

The Welfare Reform Bill: What's Wrong with Personal Independence Payments?

Edited on Monday 9th January to add a link to the report Responsible Reform [pdf]. Please read it and spread the word.

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 basic primers 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) and to people who need someone with them when out and about. 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.

On Saying Grace

Stephen and I talk a lot about the positive aspects of living with either set of our parents and do our best to either work round or ignore the bad stuff - none of it is forever, after all. We've started to refer to "our town house" (Stephen's folks' place) and "our country residence" (my folks' place), although neither of us goes by Earnest, wherever we are. Quite unexpectedly, apart from the company of Stephen's parents and the poodles, one thing I really love about life at our town house is saying Grace at mealtimes.

Everyone sits down together, the room falls quiet, someone thanks God for the meal and everyone begins to eat at the same time.

Mealtimes are very different at our country estate.  At my folks' house, you're summoned to the table a full ten minutes before being presented with food, then seconds later asked why you haven't started because it's going to get cold, even though nobody else has sat down yet, there are phone-calls and political debates going on and at least one person rollerskating around the dining table, if not an entire conga line. If you're the one to have prepared a meal, then you have to give several verbal warnings that it's almost ready before physically shepherding everyone into place ready to eat it.

It's not that I find the chaos irritating, I just can't cope with the stimulation. My digestive system requires at least some degree of peace and stillness in order to concentrate on the task at hand, let alone what I need to taste and actually enjoy my food.

And I do enjoy my food and am very grateful that I can. These days, I have a healthy appetite and always seem to have lovely tasty and healthy things to eat. I've had periods of my life when, due to all kinds of reasons, food has had little potential beyond fuel. So I'm grateful for my good fortune, that I get to break bread with people I love and everything is all right. And of course, together with music and love-making, food provides a rare opportunity to snatch some sensory delight from a body that rarely musters comfortable.

So Grace works for me and I've been trying to think up a secular version. After one big family Christmas years ago, a cranky aunt complained of Grace, "Typical that they should all thank God, a man, for their dinner, when nobody has a word of thanks for the woman who's been slaving away in the kitchen all morning."

In our families, there are always thanks for whoever cooked, and indeed anyone else who contributed to the meal, but maybe a formalised version of that is the way to go?

Once everyone is settled at the table with food in front of them, one person says, "Thank you to A, who cooked the dinner and B who peeled the sprouts."

and instead of "Amen," the remaining company say, "And thank you, C, for laying the table. "

Something like that. Not, I hasten to add, that my gratitude ends at the people I'm eating with.  All kinds of good fortune conspire to provide me with good food and company in a warm house. But it's a start.