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.

 

Two-Horse Race

According to Wikipedia, Tanka (短歌, “short poem”) is a genre of classical Japanese poetry and one of the major genres of Japanese literature.

A Tanka consists of 5 lines and 31 syllables. Each line has a set number of syllables see below:

Line 1 – 5 syllables
Line 2 – 7 syllables
Line 3 – 5 syllables
Line 4 – 7 syllables
Line 5 – 7 syllables

This is my 92nd poem of 2017 and I am well on my way to putting together a collection of poems to reflect the struggles of disabled people in 21st century Britain. I would like to publish these poems in a book to be released in 2018, and I am close to finding a team of illustrators to help me add images to my words and create the type of book that I envisage.  I am speaking with students from Glyndwr University who are interested in collaborating with me on this exciting project.  More details when available.

The following poem was written at 04:30 on my mobile phone as I could not sleep after watching too many political debates on late night television and panicking over the future we face if politics does not take a swing to the left.  This is not just about me or the disabled community but society in general…

This is not a game

It’s more important than that

Hashtag Vote Labour

United, we stand proudly

Divided, the Tories win

Vote Labour to uphold the rights of disabled people – our letter to the Guardian

Politics and Insights

The following letter was published in the Guardian today, which was written and signed by a group of academics, professionals, campaigners and grassroots activists who work together cooperatively. We collaborate to achieve our mutual aims of a progressive, civilised, just and safe society for all. We hope to achieve this by ensuring we all live in an inclusive society that meets its human rights obligations for all social groups.

I am very proud to be among them. 

westminster-20121020-00081Many disabled people see Labour’s policies as a lifeline, say the 30 signatories to this letter. 

For chronically ill and disabled people, recent years have been a disaster. The UN recently found “reliable evidence that the threshold of grave or systematic violations of the rights of persons with disabilities has been met” (Report, 8 November 2016).

We have been forced through a work capability assessment that the government’s own expert adviser described…

View original post 396 more words

Theresa May euphemizes savage cuts to PIP when confronted by an angry disabled person demanding democratic accountability

Politics and Insights

Theresa MayThe prime minister has been avoiding confrontation with real citizens and voters so far, and has simply concerned herself with a series of stage-managed media appearances featuring Conservative supporters.

However, Theresa May faced a series of difficult questions after she was confronted by a furious voter over cuts to disability benefits while she was campaigning in Abingdon, Oxfordshire.

Cathy, who has learning difficulties, challenged the Prime Minister over Conservative cuts, which meant she lost her carer. She also asked about how others had been affected as the Disability Living Allowance (DLA) is replaced by the new cost cutting Personal Independence Payment (PIP). 

In the footage captured byChannel 5 News, the voter demanded a return of DLA payments, explaining that she couldn’t survive on the PIP scheme that has replaced it. 

Suprisingly, The Express also ran the story, although it was interesting to note the language use and interpretation to describe…

View original post 1,331 more words

Modern Love

According to Wikipedia, Tanka (短歌, “short poem”) is a genre of classical Japanese poetry and one of the major genres of Japanese literature.

A Tanka consists of 5 lines and 31 syllables. Each line has a set number of syllables see below:

Line 1 – 5 syllables
Line 2 – 7 syllables
Line 3 – 5 syllables
Line 4 – 7 syllables
Line 5 – 7 syllables

This is my 89th poem of 2017 and I am well on my way to putting together a collection of poems to reflect the struggles of disabled people in 21st century Britain. I would like to publish these poems in a book to be released in 2018, but I need an illustrator to help me add images to my words and create the type of book that I envisage. If you are a budding artist, or know of one, then please do get in touch.

Memories confined

Preserved in digital

It’s all I have left

Six minutes twenty seconds

Of lurid squelching noises

 

Pipe Dreams

Haiku is a genre of classical Japanese poetry and one of the major genres of Japanese literature. A Haiku consists of 3 lines and 17 syllables. Each line has a set number of syllables see below:

Line 1 – 5 syllables
Line 2 – 7 syllables
Line 3 – 5 syllables

This is my 3rd Haiku poem of 2017 and – along with the 87 Tanka’s I have written so far – I am well on my way to putting together a collection of poems to reflect the struggles of disabled people in 21st century Britain. I would like to publish these poems in a book to be released in 2018, but I need an illustrator to help me add images to my words and create the type of book that I envisage. If you are a budding artist, or know of one, then please do get in touch.

I am pretty nervous about trying this new form of poetry as I am not sure if my version fits with all the rules of traditional Haiku. I have given it a go anyway, even though I was originally writing a Tanka. After writing the third line I realised that anything else would detract from the message that I was trying to convey. After watching John Cooper Clarke on 8 out of 10 Cats Does Countdown, I am also tempted to experiment with other forms of poetry.

Anyway, here is my latest effort:

In reality

I didn’t have a hope in hell

But I kept trying

Best Laid Plans

According to Wikipedia, Tanka (短歌, “short poem”) is a genre of classical Japanese poetry and one of the major genres of Japanese literature.

A Tanka consists of 5 lines and 31 syllables. Each line has a set number of syllables see below:

Line 1 – 5 syllables
Line 2 – 7 syllables
Line 3 – 5 syllables
Line 4 – 7 syllables
Line 5 – 7 syllables

This is my 89th poem of 2017 and I am well on my way to putting together a collection of poems to reflect the struggles of disabled people in 21st century Britain. I would like to publish these poems in a book to be released in 2018, but I need an illustrator to help me add images to my words and create the type of book that I envisage. If you are a budding artist, or know of one, then please do get in touch.

 Time is running out

Ambitions are put on hold

Frustration building

The hunt for equality 

Join the back of the queue spaz