Entitlement – an ugly word?

So, I can’t sleep. I got two hours in total before I woke up, twitching, jerking and irritable. Cats cleaning themselves really loudly. My husband breathing, that sort of thing.

I tried to stop my heart racing and myself from entering a full-blown panic by asking S to turn on the radio (it’s on his side of the bed), as the World Service, our usual station at home, is usually employed at a lower volume than normal in such instances. Then breathing exercises, then cuddling that beautiful, damnable noisy cat until his tail twitched. No can do. So, back to something I’ve been mulling over for a day or so.

I mentioned in my last post that S was entitled to his money. Someone I once knew vehemently disagreed with this a few days ago. She was aggrieved that I considered him entitled; that ours was a something-for-nothing culture; that we should go and live somewhere else to see how things truly are, like they did. This came as if from nowhere and I was truly shocked at her venom.

So, entitlement is a loaded, ugly word it seems. The search engine of your choice confirms it to be a guarantee of rights under law as well as in the more pejorative sense, that these things are felt to be deserved. But can it not be that if you live in a country where these benefits and rights are established and for whatever reason you are not recieving those benefits, that you deserve – or are entitled – to them? Should S accept that as he is not getting any money at all, he is not entitled to it?

I do know S deserves these things, and I shall attempt to unravel why through legislation. I promise not to use the European Human Rights Act. I’m sure this would be roundly and soundly laughed at.

S could be getting an award! In the Welfare Reform Act (2012) the money gained through a person recieving Universal Credit is described as both an entitlement and a award. Award; I rather like that. It has less of a negative connotation and more of a beneficial one. Interestingly, disability and incapacity payments (or Employment Support Allowance as now is) are not mentioned here. It is not a part of Universal Credit. You can laugh here if you like. So theoretically and as per the law, does this mean that healthy people capable of work are entitled to their award from the State and that the ill and disabled are not? If so, what does this say about our society, that those least able to find and carry out work needn’t get anything at all? This is all rather puzzling.

However, there is a draft item of legislation, the Employment and Support Allowance Regulations (2013) which is now a statutory instrument. Although it is not as immediately noticeable as in the previous document, that magic word is used in relation to ESA. (Part 2, 6.2.a; (i)-(iv)). Entitlement to ESA; it actually exists! And yes, Part 3 – Conditions of Entitlement. Here we are; I’ve sold the cow and I’ll be damned if one of those magic beans hasn’t started to grow.

(Here though is where I’m going to have to admit that although I did well in the Law and Ethics module in my (paused) nursing degree, I am not immensely practised in decoding employment and support law, and am absolutely no expert. But principle established, I think?)

It’s Part 4 where things get a little easier to understand. It’s about limited capability for work. It mentions the descriptors for claimants and the 15-point system that is applied by the assessors. Part 4 seeks to establish

whether a claimant’s capability for work is limited by the claimant’s physical or mental condition and, if it is, whether the limitation is such that it is not reasonable to require the claimant to work is to be determined on the basis of a limited capability for work assessment of the claimant in accordance with this Part. 15(1)

This directly applies to S’s situation. This is the statutory law under which S is entitled to a state benefit.

Of course, being enshrined in law does not make anything a worthy or good, or even a desirable thing. I suppose in this case it depends on the extremity of your political viewpoint. But at least it does show that yes, providing he meets the criteria, S deserves – under law – this benefit. He may have failed the initial assessment, the appeal, a tribunal which was found to have so many holes in it that it could call itself a colander. (That’s the post I’m petrified to write, and is the reason why we are both quite so anxious about the forthcoming rerun). But he is entitled – that pesky word again – to his appeals, too.

Any country where a legal judgement is made and appeals cannot be lodged – isn’t that an injustice? And that is A Bad Thing. So why on earth should he not exercise that right? Otherwise, we would be one of those countries where things really are real, where injustices happen, and we’re no longer in our safe little corner of the developed world. Because any system where appeals are unable to be lodged when failures are seen are, well, just as flawed as those countries without those laws at all, and it is as likely that injustices will flourish.

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The ATOS assessment.

So, now, to get back to S. This is what happened at the ATOS assessment in August 2012, in his own words.

I was driven to the assessment centre which was badly signposted at the back of a local government building, almost like they wanted to hide it. I eventually got inside and hobbled to the desk, paperwork in hand. They kept me standing for ten minutes or so whilst they loudly talked about their weekends and made coffee in the back room. Eventually someone came out to see me, and after looking at all the documentation, told me to go and wait to be seen.

The bland waiting-room had plenty of uncomfortable seats in it, and none that I could see had arm rests. After a sweaty, anxious and painful wait, sitting and standing as my spine dictated, I was ushered into an office/consultation room. I was greeted by the “health care professional,” a large jovial man with quite heavily accented English, who tried to put me at ease (off my guard). He explained that he would assess me and give me a physical examination.

He asked a lot of questions, most of which I now realise were somewhat leading. He didn’t enquire about my eyesight, didn’t even get a test chart out. The physical consisted of lifting my hand to shoulder level, and my legs to whatever height I could manage without pain (not far).
I was up and down like a yoyo as I couldnt sit for very long, and still can’t without an unpleasant level of pain.

He quizzed me on my family and hobbies, which I talked about to him. When I dropped my meds on the floor he didn’t even try to assist, just looked at me like a bug as I shuffled them to a place where I could reach them with my feet, and sort of kick them along until I could half-crouch and scrabble for them. This all seemed to satisfy him and he ushered me out.

When I got the results back, I was stunned. Apparently I have a great social life, enjoy wearing armour, running about, archery and so on. I “claimed to have vison in only one eye.” How the hell would he know? Did he have ct scanning vision? Because he sure as hell didn’t test me.

Also, “Can touch forefinger and thumb on both hands.” Weird that. I dont have an index finger on my left hand. The whole thing was riddled with inaccuracies and downright lies.

Family tensions.

Today, back to the present. This is an example of the stress the ATOS situation causes. Between me and him, who are as loyal as penguins, and between us and my parents.

I drove all three of us over to my mum and dad’s as there’s a goth weekend nearby; a chance to catch up with my folks, old friends and have a mini-holiday at the same time. Fantastic! Unfortunately, I’m still getting used to my new lot of anti-depressants, which didn’t exactly help the situation. My mum knew that I am on ADs and had been finding things very tough lately. I had opened up to her and told her I couldn’t cope very well of late. My parents had helped me out with money to bridge the gap as I pay the lion’s share of the household bills. I know how incredibly lucky we are to have that help from them,from S’s parents and from some wonderful, wonderful friends.

Everything was going well until we came back to my parents (who were out) at 5ish, to find that one of the electric rings was still on from lunchtime. I had asked S if it was off and he had replied in the affirmative. I was angry but didn’t realise how much. Of course, I realise that it was from using an unfamiliar cooker with knobs that weren’t clearly marked. His reduced vision meant he didn’t notice. It wasn’t until he’d made me a cup of loose leaf tea while I was putting away the dishes that I exploded. He’d put about half an ounce in there instead of a pinch, and it was undrinkable.

Out it all came. I don’t think I’ve spoken to him so harshly since we first moved in together fifteen years ago. I just couldn’t stop it coming out. How he couldn’t do anything right; how he couldn’t bring any money in and he was reliant on me and my parents; even how he couldn’t get home without me driving him. It was full of belittlement and frustration and rage, and I watched the scene in horror as the ugly words tumbled out of my mouth. He was incredibly hurt, then enormously angry, and took himself off downstairs. I had devastated him, and me…an hour or two later, I apologised, he let me, we hugged and made up, and I carried on saying sorry into the next day. I’m really lucky to have such an amazingly understanding man and at times I really don’t deserve him.

The next day I was still smarting, and S was still grave. My mum picked up on the atmosphere and when I went to our room she followed me. Her conversation began with

“I know, I know…I understand everything. Have you thought about divorce?”

I was utterly shocked. She told me I needed a break, that I should move back home for an indefinite time, enroll at the local uni and finish my course there. That she would help me. I never should have moved so far away from home and she rued the day I moved to our town. That “even the mentally handicapped can stack shelves in a supermarket for a few hours a day.” She had never approved of S and I fussed after him and my stepdaughter “like a mother hen.” That they weren’t my responsibility and definitely weren’t hers to help support [we would probably be homeless and definitely up to our scalps in debt otherwise]. Some of what she said I agreed with. Her money was there as a short-term measure, as I was fragile and had been working all the hours I felt I could. The visit on my own we’d talked about at first, and a break might get me more focused on the work. So I agreed to it.

And then, and then…I thought about the words. They stung. We are a family. We have a home and it is not where my mum and dad live any more. She had not asked me how things were, but asked closed questions all the way. And all this…new stuff that had surfaced. They get on well. She even laughs girlishly when he is around and S loves spending time with her. She supported me, and him, all the way through his op, so I thought…or was it just me she was supporting? I knew she had doubts about him at first – I was 18, he was unemployed at the time, and had a young daughter – but I thought he had proved himself to her over the years. Seventeen of them, almost to the day. And to imply he was lazy..? She knew his problems. She reads the papers and listens to the news, and knows the situation with ATOS, with the system. She knows about the many who have not got their Incapacity Benefit or DLA and have died shortly after, either from their illnesses or by their own hand. Plus she had insulted all my choices.

After she went, S came downstairs. I told him what had been said. It floored him. We formed a plan of action. When she returned, I told her that thanks but no thanks, please keep your money. We will make it without any help. She replied with “You will never manage on your own…”

Red rag to a bull, that was. I was furious. I am independent, was brought up to be. I hate relying on others and I did my level best to remain so until we could do so no more.

After a while we talked and we understood each other a little more. I will still get some help from them. She now knows that if you aren’t eligible for a benefit, you aren’t eligible for support to get into work either. That his back is too damaged to do manual work, and that had been recognised by the tribunal, as had the depression. His eyesight had not, so he did not get a positive result. That she really didn’t know or understand everything. “But you don’t talk to me…” Mum, I do, but the depression and the situation means I just can’t keep going over it lots of times without it severely affecting me. That and the previous tablet turned me into a zombie unable to say much in the way of anything meaningful.

I trusted my mum implicitly to know what to do. But because I opened up to her, this happened. Things will never return to how they were. My family is here. We are a unit, all three of us together. That is at least one positive thing. We are us.