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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Sleeping.

Now, I love sleep. Sleeping is ace. I never used to like it. It was a distasteful but necessary waste of time; a way of getting from one day to another. It meant missing out on things I wanted to do, like read, or now and again when I was very low it was an unwanted, terrible thing that made the next day arrive sooner. If I didn’t sleep, tomorrow wouldn’t happen – a charm that never quite worked.

That was before. Now, sweet, uninterrupted sleep and I miss each other terribly. The problem with problems is that they can affect everything; every single aspect of your life. My problem, in the nicest possible way, is my husband, S. Or to be more accurate, the help that he is not getting. But more of that later, and not in this post.

Last night started well. We went to bed at a reasonable-ish time, listened to the radio and fell asleep with some cats on top of us, lulling us with their familiar, hot-water-bottle weights. There is the by-now-usual routine of waking up every time I roll over, aches and pains, which is frequently. But the latest pattern repeats itself as I waken at 4:30 AM to the snarling sounds of sleep apnoea. This is annoying but OK. He has a long-awaited ENT appointment next week. I nudge him, say “S, snoring…” and he groans out a “Sorry” and rolls over. Rinse and repeat.  I try to drift off, but I can’t swallow. Ugh. Dry mouth. A side-effect of my new anti-depressants. I suck a sweet and try again. But every time I try, my heart races. I combat it as best I can with pillow rearranging and slow, deep, even breathing but it runs away with me and as soon as I stop the intervention I panic. Time for another sweet. The rustling wakes S up and he says in despairing solemnity, “I’m going to sleep on the sofa; I’m sick of waking you up.” My protestations that it should be me, I’m the one who should move are ignored and he disappears.

Still no sleep! More panic, a spot of gentle thrashing and considering in a wry and forcibly objective way my current feeling of hopelessness in the future, and in the end the only thing for it is the radio. Might as well keep myself occupied and soothed rather than frustrated and lost. I briefly consider Radio 3, but I can’t listen in a panic as it sends me skywards. Instead I plump for the World Service, and after about an hour, not long after Radio 4 starts up again, I’m out. Consequently our curtains, lazy layabouts that we are, remain closed until 11AM. This is about the fourth or fifth time in the last week, with us taking turns on the sofa. I try to beat him to it, but it doesn’t always work.

I support my husband, who until last year was on Incapacity Benefit. He has crushed vertebrae, suffers from moderate to severe depression and is partially sighted. He lives in chronic pain and has memory and concentration problems due to a brain tumour that was removed some years ago. He is now on no money at all after a tribunal decision that we are fighting.  I gave up my nursing degree and now work part time, in part due to anxiety and depression that are linked to S’s condition.

The problems with sleep deprivation are well-documented. It can lead to obesity and illness as well as problems with focus and concentration, and can have a detrimental effect on mental health.

Thank you, ATOS.

We do not sleep well.