Telling the truth, #ombh

This is a guest post by a friend who would like to remain anonymous, as part of One Month Before Heartbreak

‘Vegetables’ don’t always lie in hospital beds, with tubes and wires wrapped around unconscious shells.

Zombies are shells, in fiction. A mind which loops, locked onto a word or phrase or guttural sound, no cognitive function left, simply passing through the world on some pre-defined path, choice and personality removed, incapable of interaction or conversation.

Some people call it brain fog, I think. I call it zombie mode. It removes the will to move, to speak, almost to breath. It’s like your brain has stuttered, caught running a process and looping, over and over again. If you were ‘switched on’ you’d try and move, try and communicate what was happening, try and ask for help. But there is simply no impetus there to even raise a finger. Stasis. Frozen. Sometimes, movement is fine but cognitive ability is removed. No words come. Only sounds when you are asked if you are okay, as someone notices, work colleague or partner, that something is broken and the record is repeating. But every time, every single time, is a faint little voice, the voice of sanity and reason and correct neurons firing, way in the back of your mind, squawking with fear that this time the lights wont come back on, this time the electicity wont get through, and you will be stuck ‘here’, in a place where communication, physiologogy, neurology are all in shutdown.

It’s like someone hitting the pause button.

Doesn’t happen so often any more. Enough for me to remember. Not enough for my current work colleagues to know, so when they ask, I say ‘yes, I am fine’ and defer the conversation which will undoubtedly cause them to think I am quite quite mad. And yes, there is other damage in that old brain of mine and mad I may be, but I am also many other things, and a hard working, determined, committed, 1 sick day a year, driven, contributing, opinion sharing person who interacts with the world, who has a ridiculous work ethic, is damn well one of them.

Not despite of, but because of.

So when I read that there will be changed to Disability Living Allowance, when I read that this government believes that people are ‘parked’ on benefit, that this government believes everyone has something to give and should be punished for ‘not trying hard enough’, and should attend sessions where solutions to barriers to work will be suggested, excuse me if I get a little irate.

I work as hard as it is possible for me to work without breaking myself. I know my limits, I work around them. I don’t know what’s wrong, only that something is, I don’t know what the triggers are, though I have my suspicions and the people who are supposed to know don’t. I have neatly, carefully, tirelessly planned my life in advance, in minutaei, in entirety, to ensure that should my brain break, I will be safe and I will be okay.

This involves my partner. Now, when we first started seeing each other, there was nothing wrong with me. Okay, so I got a bit up and down occasionally, but there was nothing ‘wrong’ with me. So these days, I figure the broken bit comes with the package. He picks me up from work, he takes me home again, if I break suddenly and badly, he leaves work and come and rescues me from the embarrassment and confusion. He cooks for me, he lifts for me, sometimes when I can’t hold the iron, he irons for me. Our home life is carefully worked out so that I can go to bed when I am tired, which is like switching off a light switch, zero to exhaustion in 10 minutes or less. There is nothing left in places where things can be knocked easily. I drink from plastic cups. Things are adjusted to, and frankly, life I suspect just aint as much fun for my other half some days as it might be for most. But we get along and we get through and do you know why?

He earns a reasonable amount. And so do I. I am on flexible working terms. I have a employee who has tightened sickness absence rules but 1 day a year is nowhere near the limit and is paid for and not punished. I have a line manager who doesn’t know the details but knows enough that if I phone in the morning and say, I need a duvet day, will ask no questions and concede that the occasional day working from home will do no one any harm but will fix many things. I have flexibility and room to move around the obstacles which are occasionally thrown in my way. My partner has a car paid for by his company, I don’t drive, he does it all and frankly some days, it’s just as damn well.

If I couldn’t work because the ‘zombie’ mode kicked in more often, what then? What employer wants someone who can’t communicate and has no cognitive function, no ability to think cohesively enough to string a sentence together, never mind add two numbers together, a pre-requisite for a large number of jobs, lets face it. What happens if I were to visit the doctor and be functioning fine, and then 3 hours later not be?

What happens if the same happens at the DLA assessment? Because if you remove self assessment, then the only alternative is external assessment and that, well that’s going to need someone to spend a week with me, frankly, to have any idea of the ups and the downs, the inhibitors and the chaos. What happens if I am seen functioning fully on Twitter, but the frequent silence and the reason for it is never known, because it is an absence and therefore not on anyones radar? What would happen if I had no partner?

Even now, even with the lights switching off only rarely, I would not dare to drive. I would need to rely on public transport or taxis and they cost extra money. I would need to somehow work out how to tailor a house entirely on my own so that I could move around it safely when ‘not there’. I would need buttons, perhaps, or people to check on me – and in a town where I know no one, well that would cost money too.

Adaptations are easy when they are not needed because you have someone fully functioning present with you to ensure you don’t do something stupid. Ultimately, DLA filled in the gaps. It filled in the gaps for those who couldn’t work because they couldn’t function, whether that was permanent or intermittent. It bought essentials, it proofed living environments to make them less dangerous, it modified cars or went towards normal cars so that a complete absence of awareness did not become something hilarious and shameful on the number 25 bus home. It filled in gaps where shame and embarrassment would otherwise have been, it offered a helping hand to those who were not as lucky as I am and who damn well needed it. It enabled dignity, a basic human right.

And who is qualified, exactly, to put a price on dignity?

Disability is never a choice. I don’t consider myself disabled. But something is broken within me which cannot be fixed so easily and it makes it easier, perhaps, to step just half an inch to the right and see life from the other side of the fence.

But disability is never a choice. It is frustrating, fear inducing, anger sparking hell, no matter what level of disability you deal with.

For a government to infer that life is easy, a walk in the park, is frankly an insult. For a government to assume that everyone has a carer who will pick up the slack for free is an insult. For a government to lack common empathy is an insult. For a government, any government, no matter their parties colours, to cast aspersions on the validity of illness, disease or damage when any sane person would simply need to look once and concede that some assistance would be required, is a waste of resources. How much will reassessment cost? How much will the emotional toll of all this turmoil cost? Who will get missed and fall through the cracks?

If the lights never switched back on, I could not work. No one would employ. I could not work. I believe that because I have no reason given to me by medical professionals, the DLA replacement would not be given to me to assist with paying rent, or bills and that without a partner, my life would be nothing at all because there would be no one there to advocate for me. This is the reality of a world many people live in day to day. I live there hour to hour, sometimes, and please believe me when I say, it is scary in there. But all the more scary, I would imagine, if you were there and perhaps, there was a fire, or some kind of emergency, and you were stuck and no one knew and no one came, because no one saw, and you didn’t have the money available to put any systems in place to mitigate it. All the more scary if there was an empty space where care and love and time should be.

The changes to the DLA system reduce disability and the barriers it causes to black and white, to zeroes and ones. My life is not that simple. So quite what kind of merry hell the system is about to enter, I cannot even contemplate as it tries to slot into boxes disparaties and cross correlate the uncrossable.

My final question is this. If you change a system to make savings, you have to be absolutely 100% sure that you have run risk analysis and prediction software which tells you whether the cost of implementing the new approach will not wipe out any savings made by removing people from receipt of benefits, thus increasing the saving. We’re not talking about initial set up costs here, we’re talking about repeat costs of assessment and re-assessment, paying for thousands of hours of expensive qualified medical professionals time. For the foreseeable future. Over and over again. On the same people. Who’s initial prognosis might be ‘you’re never going to get better, if you’re lucky you’ll stay the same, and if you’re unlucky you might get worse still’.

What a pointless exercise of dehumanisation.


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Man of letters & numbers; also occasionally of action. Husband to NTW. Dad of three. Friendly geek.

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