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Austerity xmas

It’s freezing cold here at the moment and I’ve been in bed for the past week recovering from an activity last Saturday that drained me. Whilst sitting here twiddling my thumbs I thought I’d do a bit of the old writing and let you know what’s going down for me right now.

Firstly I’ll tell you I’m feeling a little bit furious, a little bit sad, a lot tired and incredibly deterrmined.  This festive period is being defined by a new challenge in my life and that is to take on the current British government (not literally but you’ll see what I mean soon). I try not to be political on here but I will make no bones about my disgust and distaste for the current lot of clowns in Parliament.

I have watched from the sidelines for the past few years as more and more sick and disabled people have been thrown into extreme poverty and some have even died or taken their own lives (according to CAS this number is in the tens of thousands, yes you heard that right) due to Social Security reform in the name of austerity.  NHS Digital also report that in 2016 rates of self harm and attempted suicides for ESA claimants had risen by 43%.

I was watching knowing that eventually they would come for me.

When the brown envelope (brown envelope-itis is becoming a thing) dropped through my door I had to take a deep breath and centre myself before I opened it, I knew it was my turn on the merry-go-round. I filled in the form for PIP which is in itself a bit of an ordeal. Having to relive everything that has happened and  putting into black and white how different things are for you triggers stuff. All that stuff you’ve gone through and endured comes bouncing back up and straight out of your eyeballs.

Once this was done it was a question of waiting for the assessment. Ah the asssessment! Where one of the evil twins (ATOS or Capita, urgh!) send round a ‘health professional’ to ask questions, observe you and push for concrete answers to extremely abstract concepts – they also make you touch your toes (despite the assessor telling me that this part of the assessment wasn’t relevant to my condition she made me do it anyway then used it against me in her report). The assessment is not fit for purpose, it doesn’t factor in invisible disabilities. Yes I can touch my toes but I can’t get out of bed to do it!

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After waiting a few weeks for the outcome then being refused any sort of financial assistance I had a meltdown, a proper meltdown. It dredged up those feelings of hopelessness and uselessness as well as having thoughts  of suicide. Once the despair abated, then came the anger and determination, I was not going to take this lying down (well maybe I’d be lying down but I’d fight). So I researched the appeals process and began the frustratingly slow meander through the highways and byways of the Social Security system. I requested a copy of the assessment report (you can do this, it’s your right to know what was said) and it was like reading about a different person.

Now I’m not saying that an outsourced agency like Capita will lie about people, ah…. ok… yes that’s exactly what I’m saying. I’m also aware the staff get bonuses for every person they throw off benefits, sort of like a cruelty pay rise. The report could have won the Booker Prize for Fiction. It was full of contradictions and things I didn’t say as well as omitting things I DID say. I was also deemed not disabled due to being intelligent and aware of my condition, I MEAN, GIVE ME A BREAK that is the most outdated and Victorian attitude about the disabled I’ve ever come across. This idea that being disabled equates to some Quasimodo-like existence where we are not articulate and smart and funny. We’re either ‘inspirational’ people who beat the odds to win medals and row the Atlantic single handed or we are dribbling no hopers. There is no middle ground. Society wants you to be one or the other, no shades of grey. Heaven forbid you’re disabled and dare to scuttle out from your cave and try to have fun and enjoy your life.

So we are now locked in a festive waiting game. No decisions, no supplementary payments, no hope until after Xmas. As a knock on effect of PIP refusal Mr Braingirl has also had his Carers Allowance stopped so we are truly on our arses right now. BUT they will not beat us. I want to see this through, it will take all my energy and all my courage but we will go to court and have our say. If we fail, we will try again. I’m a working class Northerner which means I’m genetically predisposed to rolling my sleeves up and taking on the powers that be.

This is the thing with ‘austerity’, the rich and powerful have all they could want but they want even more and not only that, they want to stop you from having any too. They are creating a culture of ‘unworthy poor’ where having less is some kind of disease and something to scorn. They are deciding who to throw crumbs to but making them somehow ‘other’ in the process. Ably assisted by a media who help deflect your anger from where it should really be directed and instead make you angry at refugees, the sick, the disabled, the poor, the young and the vulnerable. Your brother or sister who is struggling and trying to access a lifeline that was created to help when circumstances beyond their control affects their life. This degrading and dehumanising system that is now in place was unfortunately voted for by the public, a section of the public who think society exists solely for themselves, the ‘I’m alright Jacks’ the ones who have lost compassion somewhere and forget that we are one, that we work together. The public who don’t really believe that this is happpening.

This is not something that is occurring in a film, this is real life. YES it is happening, NO it is not made up and it’s killing your fellow human.

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I found my mind in a brown paper bag

I’ve been quiet this October, I had ideas for posts to write but I was moving house and my motivation had gone AWOL again. Initially I wanted to write about the stress of moving house and the flavour given to it by brain injury but something else popped up instead. Inspired partly by a conversation I had on Twitter with a friend and partly by how I’ve been feeling this past month I’ve decided to talk about the ghost like nature of my existence and my invisible disability.

I’ve touched on this before but it became very prominent to me these past few weeks. In all the hubbub of packing and unpacking and the assimilating to my new environment I’ve found myself doing a lot of staring at the walls, this is perfectly normal with brain injury, staring at the walls becomes an Olympic level sport. With the staring though came the ruminating, I realised I was just floating through my days at the moment. The location move means I’ve had to move services so a new keyworker and a new brain injury team have to be put in place, this means I’ve effectively had to start from scratch again. That aside, staring at the walls can bring new insights and feelings. It’s good every now and then to stare at the walls, the brain injury requires it, it gets tired and full and so a good session of wall staring empties and calms the mind. You kind of enjoy these sessions, they are useful and not to be resisted.

It was during one such session of gazing that I started to wind myself up, my mind started to tell me I have no useful purpose in life, that everything is pointless and what quality of life do I have brushing toast crumbs off my dressing gown and worrying all day? I started to buy into that fallacy that being ‘useful’ equates to busyness and having a soul and back breaking job. I’m constantly told on a daily basis that a life on benefits means I’m a strain, a leech, something to be eradicated. Because of course when I filled out my life questionnaire they were the boxes I ticked for my life path. I really wanted to spend my days sad and worried and in pain it’s a right laugh.

My friend on Twitter who has her own battles to fight said it’s like life is on standby during the day, this sums it up nicely for me, you kind of go into pause mode until tea time and then fade back into existence for a few hours until it all starts again the next day.

It also didn’t help me when someone close to me and Mr Braingirl said we ‘don’t live in the real world’ and that blogging isn’t ‘real life’ and ‘why can Lauren do some things but not want to go out for meals?’. Imagine being told after battling for 2 years straight that the outlet you have carved that has some therapeutic value for you isn’t ‘real’. I assure you, this is as real as it gets, I would even argue that my existence has made me butt heads with reality in a way that you will never comprehend. However, this really upset me and made me realise that because I present well ( I speak well, I move around without help) that people just don’t understand my life, they probably never will and it just adds fuel to the current rhetoric that people like me on benefits and disabled are lazy and feckless. Would this person in question have said something like this about a cancer patient or a wheelchair user? I very much doubt it. The thing that annoys me the most is that they have this resource to help them understand me and they wont even look at it.

I struggle every day, I’m not saying this so people will feel sorry for me, I’m saying it because it’s fact. My frontal lobe was damaged which means my mood isn’t regulated, I can burst into tears at any time for no reason, I can have 15 different moods in one day. I wake up in the morning and have no idea how my day is going to go. I’m also fatigued a lot, if I go out for lunch one day and converse in a noisy restaurant I have to spend the next day recovering. My brain injury has made me sensitive to noise, smell, taste and temperature. If there’s too much background noise it fights to process everything and exhausts me, this is why I can’t really socialise anymore. I get hot flashes if there’.s even a slight increase in temperature. NONE of it is fun.

But the majority of people don’t see this, they just see me when I’m on an upswing, when I’m able to have a conversation without getting confused, when I can manage a full day without being distressed and crying and you know what? that suits them because they don’t want to know when the other stuff is happening anyway. It fits into their life better if I’m not a mess. I don’t get to escape those bits though so a little more patience and understanding is always appreciated.