We spend ourselves

She left school aged 15, and went to work in the mill, just like everyone else did. She was unhappy there, nervous, uncomfortable, and her mother took up the habit of walking her there, and being there in the evening to walk her home. Then she did not want to go, and eventually stayed at home. When I met her, she was in her mid fifties, still living with her mother. She had been getting benefits as unfit to work, but the system had stopped them, so I had to prove she was entitled. She was like her mother- both the same height, around 5′, medium build in proportion, but as if the flower, never fertilised, had wilted and dried rather than become a seed pod. She was still an adolescent, looked after by her mother.

We established that she was entitled to benefit, and after the tribunal hearing I caught the eye of the presenting officer for the DSS, one of those who acted as if it were her own money that would be paid to the claimant- but the woman had touched her heart. I said to her, “You’re glad that she got the benefit too, aren’t you?” and she nodded.

(I will add- “Not trusting herself to speak”. She said nothing. It is an assumption, pushing my observation into the realms of imagination, but one the fiction writer feels justified in, telling this story which is part fact. It rings true to me. Did the steely presenting officer’s eye gleam slightly, was it moist, or is that a trick of memory in the service of my fiction? Heightened reality, just slightly heightened-

We spend ourselves, says the stern moralist in me. The claimant had not, but guarded herself in her bower, and therefore stopped growing. It was an existence, just stopping at home. She was unrealised, possibly because the society was such poor soil, with mill work the only work.

Every day I feel the lack of my testicles, and resent it, for what it bars to me, that way of relating to another, and I am alone. The fat person might know he cannot run for a bus, his joints will be damaged by his weight, it would be better in some ways if he were lighter, and he is doing all he can to be in the world. Losing weight is another’s priority, however rational-seeming, and not his. My testicles were the price I paid for self-acceptance at the time, and keeping them would have been harder. I had them removed, and my depression lifted.

I hide myself in my bower, except when I go to London, or the Labour party. Or these daily cries for help to the ether. We spend ourselves out in the world, joints ruined by weight, testicles sacrificed to Womanhood, and even hidden away the days tick by and I have had more than half of mine. I spent as I had to, to achieve what I needed. Society was such poor soil for me. My writing may have value, an easy grace sweated over, generous, expansive and an invitation to question.

The best writers change how we think and see, and Siri Hustvedt’s essays in “A woman looking at men looking at women” challenge me. She dances around the truth, making connections and seeing from different angles, as scientist and artist for she is both. She has an exercise for the patients in the locked ward- write “I remember” then keep writing; what you write may surprise you.

Hustvedt: writing blocks are symptoms. Why have I shut out the truth?
Inactivity is a symptom. Why have I shut out the truth?
Can writing help?

Out in the world I suffered and spent myself, and now at home, in my bower, I suffer and spend myself. The consolations may not be enough. I am glad that I see things, glad that I write and speak the truth. Though I have just remembered the presenting officer’s eye glinted or gleamed, or not, in another case: that of a woman of limited intelligence, who could not calculate how many bank notes to hand over for her shopping, so trusted the checkout woman to tell her, yet who lived independently, married and brought up a daughter, who had not realised she had ceased being entitled to carer’s allowance for that daughter and might have had to repay an overpayment: a woman I admired, for achieving so much despite her difficulties, and possibly the presenting officer did too. I had sympathy for all of the claimants, but the presenting officers’ sympathy was rare.

Fear and dependence

To the jobcentre.

-How are you?
-Sort of alright, more or less, I say. This is not good enough. Sally is so clucking motherly.
-Better than last time?
Well. I can’t pay my gas bill, I have this that and the other problem, so I say no. Though all must be on an improving trajectory, I shall be fit and well and working soon, and so she cannot really accept that answer, I am not budging from it.

-Do you know why you’re here today?
Because I am to be referred to a welfare-to-work programme. I say I am in the Work Related Activity Group and the person I saw last time referred me to another scheme for more intensive help to get work. So I am here for that.

“I referred you-”

I hated being there anyway. I had no pleasant anticipation of the “help” I might receive: unpaid work experience in a supermarket, perhaps, with sanctions if I refused. And I thought this interview was the start of it, so much so that I did not recognise Sally when I saw her. I was mortified. Not because she reacts badly, but because I am kicking myself. Not because I want to be polite to this person but because I fear not to. My inner policeman is out, cudgelling me for making such a mistake which could hurt me so badly even if Sally does not show that.

It is an imbalance of power between us; yet it is all in me, my worry, fear, embarrassment, judgment of self that is cudgelling me. Could I just not care? My own reaction is the only thing I might control, but having made the mistake I make myself less able to respond to what comes next, because I am dwelling on it.

I thought this was the start of the HELP programme, but it is not. Actually, I have to turn up for the referral to be completed, Sally does not know why. I suggest it is to avoid people being referred and not turning up after being on the programme, after their appointments being paid for, because this is contracted out. Had I not attended today, I would have been sanctioned. If I do not attend when summoned again, I will be sanctioned. That is a cut in benefit, perhaps 40%. She phones up the service provider, because she likes to speak to someone, but they tell her just to complete the referral screen on her computer, so she does that.

At the supermarket, a woman commiserates with me, having to cycle home four miles. It’s not that far, I say- “But so much time when you have so much to do!” she says. Well, it is a way of getting slightly breathless. Better to cycle home than to have to drive to a gym later.

Narratives II

Overheard in the café-bar: “Twenty percent of them never return their assessment forms.” She is talking of ESA, the benefit paid to some people who are completely incapable of work. Why would that be? I thought, because they have no trust in the system, and they don’t think they will get the benefit, so they don’t want the humiliation.

But someone less bleeding-heart liberal than I might say, because they were chancing it, and knew they would be found out. Jenny said, because they are incapable of completing the form.

I feel my explanation is more plausible. If you were a chancer, you would fill in the form, knowing that you could get the benefit until you got a decision refusing it. However, some might get the form, still need to send in sicknotes from their doctor, and the doctor refuses the sicknote.

Some say they did not receive it, though this is rarely accepted as the post is thought to be reliable. You need some explanation- “My toddler stole mail and hid it behind the settee” might work. They might be trying to delay the refusal by delaying the medical examination, but that has not worked at least since 1992, when failure to return the form was legislated to be grounds for refusing or withdrawing the benefit. So they are not the most offensive chancers, who “work the system”.

Of course different people will fail to return the form for different reasons. They find no motivation to return it, or they are too chaotic to see it as an obligation. But the explanation that they don’t trust the system leapt to my mind. I don’t know, but the narrative fits the vandalising, authoritarian Tories destroying all safety nets and all social services for the vulnerable. Then later I thought of the other explanations, which would fit a Right-wing narrative of a culture of dependency and people falsely pretending to be disabled.

Possibly research could not find out the real reasons. If asked why s/he did not return the form, people might say a reason which appeared to them to be rationalisable, rather than the real reason. They might not admit the real reason to themselves. You could find out what sort of conditions these people had, and ask them their general opinions of the benefits system.

The narrative does not relate to reality, but provides a comforting understanding of benefit claimants. Believing one of those narratives, you would be reassured that your understanding of the world is the correct one. The fact does not confirm your prejudices, really, but you use it for that purpose nonetheless.

It was a shock, though, to hear them talk of ESA like decision makers might, especially after I had discussed my own claim in such detail with Jenny. I am feeling paranoid now.

Are you a criminal?

Are you a liar? Can you prove you are not?

I have claimed free prescriptions for as long as I have been entitled. Now, I find leaflets on the counter at the pharmacist, so I take one.

Claiming free prescriptions?

If you claim free NHS prescriptions that you’re not entitled to, you could be facing a penalty charge of up to £100 – as well as the original prescription charge(s). An additional charge of up to £50 may apply if you do not pay within the required timescale.

This is the first thing in the leaflet, repeated inside. I feel insulted and victimised. I claim honestly. Why accuse me of theft without evidence? Because no-one claiming benefits can be trusted.

If you’re sure that the NHS covers the cost of your prescriptions, please show proof of your entitlement to the pharmacy or practice staff before signing the patient declaration.

This has been Government policy since at least 2014, but pharmacists objected. This move to make pharmacists police the Government’s unfair charging system is totally unacceptable to us. Our job is to put the needs of vulnerable people first and make sure they get the care they need. Unfortunately, the presence of the threatening leaflet may indicate a change. Pharmacists may have an incentive, now.

Over a billion prescriptions are dispensed each month in England, rising from 725m in July 2007. 90% are free. The current charge is £8.40. It was £8.05 in 2014. £150m a year would then be 18.6m fraudulent prescription claims out of ten billion (I get 26 prescriptions a year). That is a tiny percentage. Compare tax avoiders.

The NHS Counter Fraud service assumes guilt until proof of innocence. Members of the public should phone if they think anything is amiss. It investigates professionals as well as patients claiming free prescriptions, and habitually exaggerates their crimes: Ipaishe Charuma took a mental health nursing diploma, and then earned £51,000 as a nurse. Had her work been substandard, she would have been sacked earlier, yet their site claims those earnings as the proceeds of fraud. Her fraud concerned false claims about her immigration status, and not her qualifications.

By 2018 there will be a database for pharmacists to check entitlement.

Bodyache

The symptoms described were simple, aches and pains constantly all over the body restricting all movement and requiring frequent attention throughout the day. This made the woman- it was always a woman- unable to work, so entitled to incapacity benefit or income support, and because she needed care entitled to disability living allowance.

I can’t remember how many of them got the benefit. We chucked them at the tribunal, in the hope that some would stick. Many had Dr D. for a GP. He saw anyone who dropped in, rather than giving appointments, and disappointed his more articulate patients: one said to me, “He had his prescription pad out before I sat down”. He would for our standard fee of £50 write that his patient could not walk fifty yards, could not stand for ten minutes, needed help up from a chair, etc, but give no details of why beyond a bare diagnosis which was often merely “bodyache”, and so though we argued “The GP knows his patient far better than someone who examines her for the first time, for ten minutes” the evidence was of little value.

One ritual I saw over and over was the child or child-in-law encouraging the woman as she painstakingly traced out BIBI or BEGUM on the consent form, so we could write to the GP. Sometimes, organisations would insist on original consent forms rather than photocopies, so this had to happen more than once. It is lawful for the relative to support the wrist, but no further up the hand.

I have no idea how much the woman actually did, at home with family, or whether she actually had the care they claimed.

And yet I am happy with my role representing these women, for it was my role to translate what they said into legally effectual claims and appeals and place the available evidence before the tribunal or decision maker. If they had lost recently, I would refuse to appeal again, as I would judge that the likelihood of success was so low that it was not worth my time, but I felt all were entitled to one try, and after a year, perhaps a second. I have no particular record of the proportion of Dr D. bodyache cases who won, but some did.

And I am happy that they would get benefits. “Bodyache” sometimes seemed quite hopeless to me, at least possibly a psychosomatic expression of misery and despair which enabled the person to retreat to her home, stare at the walls, and be looked after. I have no idea of the family life of my clients, who were all individuals, who may have presented a face to me, the careful account of help needed known to mean entitlement to money. I feel few were simple frauds, though; they were doing what they could to better their situation, in the way that they saw.

Margaretta Angelica Peale, Still life with watermelon and peaches

Beating the Government

The Bedroom Tax. What did you argue? He argued that the “spare bedroom” was nothing of the kind, that it was a room to store his own equipment which he needed because of his disability. That a room is just a room, not a “bedroom” or “living room”; that it may be a store room. It had never been used as a bedroom, because even though he lived in a Housing Association house, he had paid for the extension himself. The council had opposed the appeal, yet when he went before the tribunal judge, the lawyer took on board everything he said.

Then the Government had wanted to appeal, to add itself as a party to the proceedings, to get the detailed reasons for the judgment, and there had been some delay in implementing it; they had decided in the event not to appeal, and he was disappointed because had he won in the upper tribunal he would have set a precedent.

As he tells me, his passion about the case begins to show. His voice gets harder, he speaks more quickly, he will brook no disagreement. It is time to go into Meeting.

The one who introduced me, said Abigail is also a lawyer.
-Solicitor?
-Yes, a very long time ago.
He had trained as a barrister.
And immediately my shame had started up. With all the advantages I have had, look where I am now! I am without my wig, because I have cycled here, am overheated, and the heating is on. I cannot bear to put on my jeans and am self-conscious in my shorts. I wished she had not said.

And I feel so vulnerable, and threatened.

A friend has made me a necklace, of chunky Unakite beads, said to bring grounding, gentleness and calm, and to balance emotions with spirituality. It is pretty, but at the centre is a disc, three circles of tiny hearts. At this I feel intense emotion. Really intense- what happened? I think-

she recognised, valued and celebrated my Softness, and my Softness answered, which is joyous; and I fear that softness and vulnerability because I need to be harder,

and as we leave I start to babble, because I have to justify myself- I have played my cards as best I could, we all have good and bad luck, character, choices- I have not “ended up” like this because there is always possibility- phrases I have come up with, trying to reassure myself

it is alright, really
I am alright, really

I honestly did not think until later- a barrister, pleading his own housing benefit case? I had said, “I can sort of understand prejudice against immigrants, or sexual minorities, but prejudice against disabled people, I just can’t get my head around that.”

He said, people think you’re worthless, they can look down on you. And Hindus judge you on how you must have been bad in some fictional past life in their own heads. How horrible, to see this wonderful man, and judge him on the one thing he can’t do!

Millais, Portia- Kate Dolan

Cycling

The Pashley bicycles are beautiful. They have been made in Oxfordshire since the 1920s, and these ones are a rich, mauvy-pink with painted metal chain guards, Hawker-Siddeley (or whatever it is) three speed hub gears, and a wicker basket on the front, fastened with leather straps. The large bell looks traditional, but when I ping it it goes DING DONG and all the people in the street would think their doorbell had gone. Oh Wow.

-What do you think of that?
-It’s so heavy, so old-fashioned.
-But very beautiful.

She tells me her husband has a Pashley Guv’nor, and people get together for rides in Edwardian gear, tweeds, plus-fours, moustaches. As long as it isn’t your only bicycle, she said.

Terry tells me in Friedman-John I could cycle everywhere on red paths, no need to go on the road ever again. As I pushed the bike to the cycle shop, a woman stopped me to say how much she had enjoyed cycling past the lakes on the old railway line to Waterford. Actually, though others don’t like cycling on roads, I don’t mind- that guy pulling out noticed me this morning just in time, and most drivers are courteous. The other guy who, rather than pulling into his side of the road, pulled out past the parked car driving straight at me forcing me to brake hard at the bottom of the dip was unusual, and the guy who would have broken my humerus had I been bent over with it stuck out was far closer than most people.

It would not only be my only bicycle, it would be my only mode of transport, and I don’t have five hundred quid for that. Or for a helmet like that one, which just perplexed me.

Oh, and when I am accelerating down hill I hate it when they pass me then brake for the chicane, but it does not matter nearly as much now I have better brakes; and I was feeling really good sitting up, higher than the drivers, in the sunshine. Ruler of all I survey…

A pity the road surfaces are so badly worn, with pot holes, that you really need a mountain bike. So I have a mountain bike. I will get my cadence faster, so cycle more efficiently. I have been reading about the problem of weighing down the pedal on the up-stroke, putting weight early enough on the down stroke, and how to flex the ankles.

Half the people who were on Disability Living Allowance and have been reassessed for its replacement, Personal Independence Payment, get nothing. This is not because they were not disabled, but because the test is designed to pay the benefit to far fewer people, in far more restricted circumstances. Some very poor people are having their income cut by around £100 a week.

Eckersberg, View of the Church of San Lorenzo fuori le Mura

Rage II

Just one way the Government destroys savings, and drives people to food banks…

We do not have a benefit for people unfit for work. We have a benefit for people who score fifteen points on a very restrictive test, which may not include some registered blind, or even people incapable of living without a carer. So people unfit for work get refused ESA.

They go to the jobcentre, and are asked what kind of work they are looking for. If they know the game, they can say that there must be work they can find, and they will do anything they are qualified for, but they cannot walk 200m or stand for more than half an hour (which would have qualified them under the old Incapacity Benefit test, but scores no points now). They have to look for work, and will likely be sanctioned, but will get something.

But some say they are not fit for work, but cannot get ESA. They are then refused any income at all, because to qualify for JSA you have to be “actively seeking work”. They are sent back for another ESA medical, which may be delayed for weeks, and which they will likely fail. No-one has to tell them how the system works. This is how the system works, to pay people with no money nothing, so their debts will mount, and they may lose their homes.

S said she saw someone like this when she went to her ESA medical, and I feel impotent rage and hatred. She knows this, but I feel the need to explain it again. Such anger!

I wonder if my “thinking emotionally” is the effect of my powerlessness. The person with power makes a decision emotionally, then rationalises it, and has the power to put it into effect. I, having little power, go along with that, until I can go along with it no more, and have an emotional irruption. He then can show that his rationalisation, being “rational”, is superior to my emotional thinking. All I can do then is sulk, or fail to co-operate.

Not understanding my phone- why would the screen go blank, while I am phoning?- I failed to ring off, and have used seven hours out of five hundred minutes on one phone call. I am glad I found this before going to bed, or I would have had a large bill. I thought again of those people fruitlessly claiming ESA and cried a little over it.

It is my own powerlessness at which I rage.

I have chosen these Degas bathers because they look like still lives- especially the first, with that table slashing through the picture, and the jugs and brush which might appear in any other nature morte.

Degas, woman sponging her back

On the sick

Imagine a person who at their work station has a completely free choice to stand, sit or alternate between the two. When standing, they are free to move around. Yet they cannot remain at that work station for more than an hour without having to move away from it, to avoid significant discomfort or exhaustion. Imagine also that that person is both deaf and blind, so that they have difficulty understanding a simple message from a stranger, though that stranger tries to convey it by showing the person 16 point print, or a message typed in braille, or by using verbal means such as hearing or lip-reading. It is hard to imagine what job that person could do. Yet if that person did not score any other points on the “limited capacity for work” assessment, they would be refused ESA, which is allegedly the benefit for people unfit for work. Instead, they would have to sign on every two weeks, look for work, and receive a much lower rate of benefit.

Even if they are also at risk of voiding of the bladder or extensive evacuation of the bowel such as to require cleaning and a change in clothing if not able to reach a toilet quickly, they would have to participate in “work-related activity” in order to get benefit.

So when the Government estimates that the number of people on ESA fell by 20,000 between March and August, and by 67,000 since August 2011, this is not because of any improvement in condition, but the application of a test unrelated to capacity for work, designed to pay the benefit only to a very few.

The test is administered in an incompetent and draconian manner.

2,380 people died within 14 days of being found “fit for work” and not entitled to ESA, between December 2011 and February 2014. See this pdf. Found in The Guardian.

I am fascinated to see that the Ministry of Justice publishes Gender Recognition Certificate statistics with its benefits tribunal stats, in this pdf. 93 GRCs were granted in the second quarter of 2015 (73% were M-F). There were 13,502 appeals of ESA decisions in April to June 2015, and 58% of those appeals going to a hearing were granted. The mean time for these appeals to take, not including “Mandatory Reconsideration”, the internal DWP process an appellant must go through before appealing, was 19 weeks.

While appealing, a claimant must claim JSA, which involves signing on every two weeks and actively seeking work, after the ESA (Repeat Assessment and Pending Appeal Awards)(Amendment) Regulations 2015. These also abolish the rule that the DWP will accept a sick note from a GP six months after a finding that the claimant was not entitled to ESA. Now, after a finding of non-entitlement, a claimant must prove they have a significant worsening or a new medical condition making them unfit, however long after the finding the new claim is made.

Meanwhile, GPs are less likely to issue sick notes, believing that the routine involved in working is good for the mental health of their patients. It would be, if suitable work were available. Going through the claims and appeals process is very bad for mental health.

I am half sick of shadows, said the Lady of Shalott.

Waterhouse, Shalott

Fit for work?

The Limited Capacity for Work test assesses whether a claimant is entitled to “Employment and Support Allowance”, the benefit paid to some people who are most clearly unfit for work. Should the State support those who are unfit for work? Yes- but Great Britain does not. People fall through the cracks designed for that purpose, and some of them die as a result.

This is because the test is so restrictive. You need fifteen points to qualify for benefit. Someone who requires a wheelchair will not get any points at all for that if they can self-propel the wheelchair two hundred metres over flat ground without severe discomfort or repeatedly stopping.

Someone who is profoundly deaf will not because of that score any points, if they can understand a simple message by reading it.

Someone who is registered blind who can use a guide dog on familiar routes, but not unfamiliar routes, only scores nine points for this. That is not enough to get the benefit. Where it says a guide dog “could reasonably be used” this may include where a guide dog is unavailable.

On mental health, someone who not only Cannot cope with minor unplanned change (such as the timing of an appointment on the day it is due to occur), to the extent that overall, day-to-day life is made significantly more difficult but also Engagement in social contact with someone unfamiliar to the claimant is not possible for the majority of the time due to difficulty relating to others or significant distress experienced by the claimant only scores twelve points, insufficient to get the benefit. Clearly people incapable of looking after themselves are found fit for work.

The test is restrictive. However severe your disability, if it does not fit under one of these headings it will score no points.

The concept of a three tier scheme is a good one. There are people with such great difficulties in working that they are not forced to look for work, though they are offered help to look for work. Most of those who score fifteen points on this test are considered fit for some work, and are sanctioned if they do not co-operate with seeking work. However far too many people- profoundly deaf, registered blind, confined to a wheelchair or incapable of living independently because of mental health problems- are put on jobseeker’s allowance, and subject to the full range of sanctions. Their money will be stopped if they do not apply for enough jobs. They have to sign on every two weeks.

Given that people are under pressure to find work even if they score fifteen points on this test, the test should be more generous. However, it is being continually tightened: it was not so restricted when introduced by the Labour government in 2008. The result is that it kills people. How many sanctions kill is unknown. One food bank trust alone gave out 913,138 parcels in one year. Here are some every-day horror stories.