Vox Political

The Dreams In Which I’m Dying…

The following blog includes songs by Gary Jules (Mad World) and John Farnham (You’re the Voice). I am not claiming any artistic influence on these songs at all.

I was watching Murder Made Me Famous on the Really Channel at some godforsaken hour last week as I tried to keep my eyes open and delay the uncomfortable hours that were sure to follow.

This particular episode concerned the crimes of Reverend Jim Jones –  an American religious cult leader who, along with his inner circle, initiated a mass suicide and mass murder in JonestownGuyana.

It really is a fascinating tragedy and I encourage everyone to read more about the Peoples Temple as only by learning lessons from the past can we hope to build a brighter future for everyone…

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Things have changed a lot in the past forty years, but I still fear that mass murderers such as Reverend Jim Jones exist, albeit in different forms.

It has been a long weekend full of three draining panic attacks. The lack of support and information from Local Authorities in relation to Welsh Independent Living Grant recipients is really affecting both my mental and physical well-being. Two of the panic attacks were brought on by madly rushing to use the loo as the urge to relieve myself comes on all of a sudden. My body is unable to react quickly enough, so accidents do happen.

I also suffered an attack before going to bed on Friday night, as I can almost predict the hours of discomfort, pain and panic that lie ahead during lonely nights without support. I am a born fighter – and I do not have any plans to slow down – but the pressures being put upon me are becoming increasingly difficult to cope with,  as my progressive disability continues to eat away at my nervous system.

I require 24/7 support NOW if I am to continue living independently and contribute to my local community. This is not something that I want for selfish reasons, but simply something that I NEED.

I found the following article to be very illuminating and it is certainly something that I can relate to. It was written by Mike Sivier from Vox Political and can be read by following this link.

It seems that poor and vulnerable people are still being controlled and manipulated today, in a way that Reverend Jim Jones would be proud of.

Don’t get me wrong, I am proud that the Welsh Government have listened to #SaveWILG campaigners and are now acting accordingly. I have received encouraging emails from ministers and civil servants who are working on implementing a new policy to protect independent living for WILG recipients.

It is not the current Welsh Government that I have a problem with, but the previous neo-liberal regime, whose mistakes I am now paying the price for. Local Authorities also deserve to shoulder some of the blame for refusing to provide adequate support for those that need it, purely for selfish financial reasons.

I hope I am able to go on for many years, but if I were to pass away tomorrow I would guess that someone at some level would say that “lessons need to be learnt”. I am still breathing, so why can’t the relevant action be taken now to improve my quality of life? I understand and am happy that the Welsh Government are doing all they can to push through implementation as quickly as they can, but in the meantime I am going to use the extra money in my Direct Payments account to fund the extra support that I need.

I have since found out that I will be unable to offer a PA anything more than the minimum wage to stay with me overnight due to ludicrous pay rates set by Wrexham County Borough Council. I should be able to pay staff working through the night, the same as I pay a member of the staff throughout the day. How can WCBC justify paying different rates for day and night? It appears as if my next fight for justice has been earmarked.

The book that I am itching to write, along with the work of art that I have conjured in my head will just have to be put on hold again…

All I know is that I am not going to sit in silence or live with fear any longer as I believe  justice is on my side. I can see all the inadequacies of the current chaotic system of social care from my position on the moral high ground and I will continue to keep raising my voice until disabled people, in particular, are able to live on a level playing field with the rest of society.

 

In the Shade

I was recently contacted by a journalist for the Sun newspaper who wanted to speak to me about my Blue Badge campaign after reading the following blog by Vox Political.  I was delighted that my story was taken up by Mike Sivier at one of the leading political blogs, but I was most surprised and conflicted by the subsequent interest of a dubious tabloid title.

After much thought of the pros and cons of associating myself with a Murdoch publication, I wrote the following email to the journalist involved:

Hi,

This is a rather difficult email to write. I do no doubt your journalistic credentials and your ability as a writer for the biggest tabloid in Britain. I would like to thank you for your interest in telling my story and wishing to highlight the issue of disabled parking in council car parks across Britain. The opportunity to have my say in a national newspaper would usually be welcomed, but I possess these annoying things called principles that prevent me from speaking to this particular title.

I do not feel that the newspaper in question is very sympathetic to the struggles of disabled people and your readership most certainly is not. It would therefore seem most unusual for you to support my anti-austerity campaign against a Conservative/Independent council.

Living in North Wales, I enjoy frequent day trips to Liverpool and feel I must show camaraderie with the City’s residents who boycott this newspaper. I will remain silent as a mark of respect to the 96 people who lost their lives at Hillsborough and their families.

Thank you for the opportunity and I hope you can understand and respect my decision. Let me take this chance to wish you all the best in the future.

Nathan Lee Davies
Disabled Activist and Author

Not Enough Hours in the Day #SaveWILG

I am sick of this.  It is 2018 and I am still being treated like a second class citizen.  I have a progressive condition of the nervous system which is accelerating at quite a rate, yet I still have the same amount of inadequate care and support hours  that I did in 2010 when I first began independent living.  Life is a struggle at the moment and on top of this stress, I am having to campaign wisely to Save the Welsh Independent Living Grant (WILG) plus lead the protests against the proposed Blue Badge charges in Wrexham town centre.

Furthermore, I have a #SaveWILG art exhibition starting at Theatre Clwyd in Mold on Wednesday 24th January and a community awareness day in Wrexham on Saturday 3rd February.  I am throwing myself into all this work in order to help disabled people live independently throughout Wales because I will always fight for what is right and stand up (!) for what I believe in. Bloody principles…

Having to do this with the extra pressures of time limitations is especially difficult.  How do I get across to you the difficulties of coping alone without the necessary assistance?  Unless you spend some time in my shoes it is difficult for you to comprehend the frustration that I face.  I will try to produce a short explanatory documentary one day, but for the best I come up with in a written timetable of my day.

20.01.18

00:00 – I’ve been in bed for two hours now after having to leave an engagement party, for a close friend, earlier than I would have wished if I could live my life without the shackles of limited care hours provided by Wrexham Social Services. I am writing on my laptop computer, but before my PA left he forgot to plug the computer into the socket.  I have just been told that I have 13 minutes left before the battery drains and the computer shuts down.  This is most annoying as all I need to do is switch the power on at the wall. Of course I cannot reach the plug and cannot call for help as no one is working at this hour.

02:00 –  Woke up needing to pass urine after drinking post 20:00, which is my usual cut-off time for fluids. I have an issue with urgency. When I want to go, I want to go but with me I have to take the time to raise my profiling bed, pull my light cord if it hasn’t fallen out of reach, tried to grab my urinal with spasticated hands and then breathe a sigh of relief. Finally if all goes to plan. Unfortunately, during recent months the plan has been coming together less often. This is not a nice admission for a 40-year-old man to have to make, but I am wanting people to realise the distress and discomfort that disabled people are having to put up with as cruel local authorities focus on budgets and ideological austerity that benefit the few at the expense of the many. Lying in your own piss is not fun and can cause skin irritation not to mention the demoralisation and embarrassment of spending countless hours pickling yourself in urine.

04:00 – I wake up shivering and thinking as it is impossible to find any comfort in a wet mattress. It does not help that I am restricted to one position at night and I cannot turn over unassisted. I decide that I will try to call my 68-year-old Father to ask for his help in changing the bed and restoring some comfort. However, my mobile phone has got wet and will not  function at all. I reach for my landline but my dexterity lets me down again and I drop the phone on the floor. I am now unable to contact anyone and will be forced to remain cold and sore until the morning shift arrives at 9:00.

06:00 – I am squinting at the clock on the other side of the room. I think it is 06:00 – only three hours of discomfort and helplessness left. My legs are aching as they are bent at the knees and I cannot straighten them myself. If only I had the support of a carer. When I asked for 24 hour care recently my social worker laughed at me and said that a lot of people think they are entitled to 24 hour care but no one in Wrexham receives such a package of support. She said she could put my request to panel but that they would almost certainly deny my please. I am not asking for the world. Just the opportunity to live in society on an equal footing to everyone else. I know I am better than the one, but at the same time I know that no one is better than me.

08:00 – The central heating has kicked in and I have just woken up in a sweat. I could do with opening the windows or maybe turning the heating down, but I cant do anything while I am stuck in bed unable to contact anyone.

09:00 – The cavalry has arrived. I immediately get out of bed with assistance and take a shower. This instantly improved my mood and I look forward to the day ahead, although I wish I could wash away the embarrassment as easily. Showering is a two person job and can take up to two hours to perform the whole task from bed to wheelchair including toileting and dressing. At 11:00 I can finally start reclaiming my dignity.

12:00 – After breakfast, the telephone rings. The person on the other end of the phone does not understand my voice as my speech is sometimes slurred due to my progressive disability. My PA is able to communicate for me. This is also the case with writing emails. In 2013, I wrote my first book. Over 500 hundred pages in length and something that I am very proud of, but there is no way I could do this now as writing a simple tweet can take me 30 minutes or more. The frustration is unbearable as my mind is as sharp and alert as ever but my body is keeping it prisoner.

13:00 – My PA is due to leave in 1 hour, so I am rushing through my emails trying to make sure everything is done in time as I will be left alone until 19:00. I am concentrating on emails though I am conscious that the ironing pile is building up and the floors could do with mopping. On week days, I have to fit in these emails around housework, appointments and meetings. There really is not enough hours in the day, thanks to Wrexham council…

15:00 – I have now been on my own for over an hour so I have already missed a telephone call and dropped a bottle of water on the kitchen floor where it will have to stay until 19:00. A delivery driver has just knocked on the door to deliver a parcel. This was rather embarrassing for me as usual because when my PA leaves me at 14:00, he or she has to leave my jeans undone so I can reach the crown jewels when I need to use the toilet. This is just another example of the lack of dignity I have to endure when I am left alone.

16:00 – I am rather peckish. I have plenty of food in the cupboards but I cannot reach the snacks that I crave. Even if I could, I would be unable to open the packaging due to my lack of dexterity. I suppose this stops me from becoming a fat bastard. Every cloud…

18:00 – I have just spotted some mail that I must have received earlier, but I cannot open it until later when a PA arrives. They will also have to mop the bathroom floor as I accidentally spilt some urine. My urinal tends to fill up between 14:00 and 19:00 making it heavy and difficult to handle. There are also a couple of books littering the living room floor as my dexterity will not allow me to flick through the pages of a book.

19:00 – The TV goes on and I watch soap operas about people having worse lives than me. This makes me feel semi normal for a minute until they start going on about family. I have a strong and supportive family through biology but I have not built one of my own. I subject myself to emotional turmoil and beat myself up for not achieving more with my life. This simple fact is that there is not enough hours in my day thanks to the irresponsible fascists promoting ideological austerity at Wrexham council. For example, there was recently a job opportunity for a Disability Liaison Officer at Wrexham AFC – that was built for me. I would have been perfect for this position, but could not apply as I simply cannot dedicate enough time to the club that I love, especially when I am alone without support between 14:00 and 19:00. It has also been suggested by my local MP that I should run for election to the local council. This would be one way of changing things and I would relish the challenge, but it is something that I cannot even entertain due to my lack of care and support. This clearly goes against everything set out in the Social Services and Well-being Act as I cannot begin to achieve my goals and aspirations, but the council cannot give a flying fuck about this and would undoubtedly breathe a sigh of relief at the news that I will not be running for public office.

21:00 – Coronation Street is over for another night. My friends were going out to celebrate someone’s birthday tonight. I was invited but as my friends met at 18:00 I could not join them. Another missed opportunity. I just have time to fire off a few emails, take my medication and brush my teeth before it is time to get entangled in my sling and hoisted into my half empty bed like a good little boy.

23:00 – Each night I take my laptop computer to bed in the hope that I will receive some exciting emails. Unfortunately, this is rarely the case unless you count the latest ramblings from Vox Political or Squawkbox. The difficulty is that when I am in bed I have to be in the right position to type. I often slip down the bed and end up in an impossible position. There have been times where I have had to call my Dad to help me save my laptop from falling on the floor, because it has slipped out my grasp and I cannot recover it safely. I usually stay up until 1:00 trying to type or watching TV as I struggle to sleep comfortably for reasons that I have outlined above. If More4 start showing repeats of Father Ted then I know it is getting late and time for sleep. I will venture into the land of nod just as soon as Dougal and Ted perform My Lovely Horse.