Every Silver Lining has a Cloud

YouTube Videos

Way back in 2013 I found a time to create a few YouTube videos that I would like to share with you now.

This was before I began my activism work when I could find time to express myself in whatever way I wanted. One of these videos is a promotional film for Every Silver Lining has a Cloud (enjoy the tension before the music starts) as the other two are just a combination of songs and artists that I like.

As a technophobe, I am proud that I have managed to create these videos. They are nothing to write home about, but the fact that I put them together with a bit of determination showed me that anything was possible and that if I could do this then other things were within my grasp and nothing is impossible.

Who knows? maybe, if this #SaveWILG campaign ever ends I will get another chance to make a YouTube video. I wouldn’t hold my breath but in the meantime enjoy these videos.

 

 

What Do I Do Now?

These are very frustrating times for me as I struggle to come to terms with the fact that I have become a writer who can no longer write.

Friedreich’s Ataxia has robbed me of many functions that most of us take for granted, but the deterioration of my dexterity and inability to type freely is the most heart breaking aspect of my progressive condition. I have tried voice recognition technology and Eyegaze systems, but found annoying time consuming glitches with both of these potential solutions that deem them unworkable.

My Occupational Therapist is trying hard to find a solution to this problem, but she can’t perform miracles and keeps hitting the same brick wall that has been impossible for me to hurdle since publishing Every Silver Lining has a Cloud in 2013.

A few weeks ago she came up with a great idea when in discussion with the company Remap – who are specialists in coming up with new technologies to help disabled people live independent lives – she was advised to encourage me to be featured in the next series of The Big Life Fix with Simon Reeve. This programme brings together some of the brightest brains in Britain to try and solve problems that are affecting the lives of individuals and communities across the country.

This just shows the scale of the problem that I face – it needs a specialist team of inventors to conjure up a bespoke design to suit my individual needs. Nevertheless, I decided this was to good an opportunity to miss and with the help of my PA’s I wrote the following application:

 
I would like to register my interest in being featured in the next series of the Big Life Fix with Simon Reeve. 

I am a 40 year-old male who lives in Wrexham, north Wales with a progressive genetic disease known as Friedreich’s Ataxia.  I use a wheelchair for mobility purposes and I am an author and disability activist. 

My condition has deteriorated quickly since I published my first book in 2013.  I would like to write another book but I am having trouble with my dexterity and find it difficult to write.  it can take me up to 15 minutes to write a simple Tweet.  It is very frustrating to feel trapped in your own body. 

I have to rely on my PA support to help me type lengthy emails such as this by dictating my thoughts.  This is the best solution I can find at the moment as I have tried Voice Recognition Technology, but as my voice changes throughout the day – becoming increasingly slurred as I get tired – the programme does not recognise my voice.  I have also tried Eyegaze Technology but found problems when trying to use this software.  I found that I would be quicker trying to write by myself and also had problems with the light reflecting off my glasses. 

This is a scary time for me as I currently receive 86.5 hours of care and support per week but in these times of austerity this is likely to come under pressure following the recent announcement that the Welsh Independent Living Grant (WILG) is due to close in April 2019.  For further details about this please see the link below:

http://www.bbc.co.uk/news/uk-wales-politics-38385381?SThisFB

Subsequently, my support is under threat at the time when my progressive condition means that I need more assistance.  At the moment I am left alone between 14:00 and 19:00 which is  extremely frustrating.  Not only am I unable to type but I am also unable to communicate on the telephone due to my poor hearing and slurred speech.  I am also unable to go out of the house during these periods as I find it impossible to use the toilet on my own or access my wallet. 

I could dictate much more, but I feel you now have a basic understanding of the problems that I face every single day as I struggle to fulfil my potential and live life as I choose.

I watched the first series of the Big Life Fix and was very impressed.  It would be a dream come true to appear on the programme and for the team of inventors to help find a life changing solution to my specific needs by tailoring technology to suit me in a world where technology seems to be hindering and not helping me – for example I can not use touch screen technology due to my dexterity. 

I look forward to hearing from you soon. 

Many thanks

Nathan Lee Davies

After composing this email I was fairly confident that I would receive a positive response and daydreamed about appearing on national TV, forgetting that I am a left wing activist with a vocal dislike of the BBC and status quo in general. Subsequently, it can be no real surprise that I received the following email yesterday afternoon:

Hi there,

Thank you so much for applying for this series of BBC Two’s Big Life Fix.

Unfortunately, we will not be progressing further with your application at this stage, but if anything changes then we will of course get back in contact with you.

We would love to keep your details on file here at Studio Lambert so we can get back in contact with you should we come back for another series, or if there are any other shows we make that we think you might be interested in.

If you would like for us to remove your details, please let us know by replying to this email.

Very best wishes,

The Big Life Fix Casting Team.

I am now disappointed and without hope for the future. I will keep plodding on and dictating my words of frustration to my support staff while remembering that there is always someone worse off than me. I will keep fighting and do what I can to rid this land of the Tories and give disadvantaged people such as myself the opportunity to progress and thrive in a more balanced and progressive society.

 

In Response: Leanne Wood AM

I received the second response to my letter to the four main political party leaders in Wales from Leanne Wood AM of Plaid Cymru. I thank her for her reply to my concerns over the future of the Welsh Independent Living Grant (WILG), which I have shared below.

***

Dear Mr Davies,

Thank you for your email dated 30 November regarding Plaid Cymru’s response to the UK Government’s decision to close the Independent Living Fund (ILF). Please accept my apologies for the delay in responding to you.

Our MPs in Westminster have vehemently opposed this move in Westminster.  Our spokesperson on these matters, Hywel Williams MP, is particularly passionate about this issue as his brother benefitted directly from it and was enabled to live independently as a result of the ILF. It is a great shame that once again, the Welsh Government is forced to pick up the pieces in the wake of a UK Government intent on decimating valuable public services.

I also share your concerns about the Welsh Government’s response to the fund’s closure. Plaid Cymru has called for the Welsh Government to follow the example of Scotland and Northern Ireland in establishing its own scheme and this call was mentioned in the media. You can read about it on the disability wales website here. You can also read about this in greater detail, and about our wider approach to welfare support for disabled people, on our website here – although for clarity, this was clearly written before the decision to close the ILF was finalised.  

I hope this assures you of our position.

Warmest wishes,

Leanne Wood

Arweinydd Plaid Cymru ac Aelod Cynulliad Canol De Cymru

Leader of Plaid Cymru and South Wales Central Assembly Member 

 

***

 It’s no wonder I have a crush on Leanne Wood – she seems to genuinely understand the situation.

I am sorely tempted to vote for Plaid Cymru in May 2016 as the inspirational words and leadership of Leanne Wood make me feel safe and optimistic. This is more than I have felt under Welsh Labour in recent years, highlighted by their lack of decisiveness and clarity over the future of WILG. This inaction has left me feeling isolated, alone, let down and disposable as we enter the festive period.

In my book, Every Silver Lining has a Cloud, I describe my homesickness and unhappiness while living in Scotland. Six years after leaving the  Scottish Highlands and I sometimes wish that I still lived there now that the left-wing SNP have established control in Hollyrood and, amongst other refreshing and principled practices, have seamlessly rolled out the Scottish ILF.

I’d love to live in such a fair-minded society but as I’ve no intention of returning North of the Border I can only hope that either Welsh Labour wake from their trance and embrace the politics of their Westminster leader, or Leanne Wood and her Plaid politicians clear the deadwood and set Wales on a similar path to the one being blazed by the SNP in Scotland.

 

Out Now – Every Silver Lining has a Cloud

Available from eBay or Amazon.

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Throughout 2011, Nathan Lee Davies undertook a journey around all 12 Welsh Premier League (WPL) football grounds, but before you screw your nose up and continue your search for a good read elsewhere, you need to know that this is only half the story.

The aforementioned Welshman has managed to fuse facts and figures on the beautiful game, with autobiographical stories full of humour and honesty. Tales of depression, disability and divorce are hilariously combined with trips across the border to foreign lands, bladder bursting recollections from Bangor, memories of rainy days in south Wales and much, much more, as Davies attempts to reconnect with his homeland.

Is there entertainment to be found amongst the WPL amateurs? What does it mean to be Welsh in modern Wales? Will our guide ever have sex again? How many people can one man offend? There’s only one way to get inconclusive answers to all of these questions, plus a few more, so what are you waiting for?

A promotional video for Every Silver Lining has a Cloud can be viewed here.

An unofficial Spotify soundtrack for Every Silver Lining has a Cloud can be found here.

Please note that this book includes EXPLICIT CONTENT and parental guidance is advised.