Mad World

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.