Wrexham

Wrexham DPAC #TrashTheTories

So its time for the final push. I will be going around the local village later to post Trash The Tories leaflets that I have left over from my protest in Wrexham town centre yesterday. GE17 has been an exciting time that has seen me invest a lot of money in DPAC materials – such as a banner and leaflets – and make many friends as we fight for a change of government. The campaign has allowed me to engage with the local community, meet comedy icon Steve Coogan and flood social media with #TrashTheTories literature.

All this has been done in the name of Wrexham DPAC which I hope will continue to grow and prosper long into the future, whatever the result on Thursday. I’m sorry to have to rush this blog entry but there is still time to convince people to #TrashTheTories and #VoteLabour.

Here are some of my highlights-

 

 

 

 

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.

 

The 20 Tour: Signed Stoke City shirt

I was delighted to receive a signed Stoke City shirt in the post this morning. This is my first piece of memorabilia that I have collected for my tour of Premier League football grounds in support of Level Playing Field.

The shirt was kindly donated by former Wrexham AFC goalkeeper and current Stoke City coach Eddie Niedzwiecki. I really appreciate his support and I am looking forward to collecting more such items from the country’s biggest clubs to auction when my journey around England and Wales (providing Swansea City survive) comes to an end.

I am currently working on a JustGiving page, but I am not sure when to launch it. The sooner the better I suppose…

 

Job Opportunity

I am excelling with my current care team, but more cover is needed for this small and friendly team.

Drop me a line via the Contact page, Facebook or Twitter. Good luck.

***

Female Personal Assistant (Sex Discrimination Act Section 7 (2) (b) (ii) applies, Wrexham (0103)
Rate of Pay: Weekdays £7.56 per hour – Weekend Enhanced £10.04
Weekly Hours: TBC


About the employer:

This post is to support a sociable 40-year-old man living in the Wrexham area. He is wheelchair-bound and lives with Fredrichs Ataxia. Subsequently he requires support to remain independent. An intelligent Author and disabled activist with a good sense of humour, he remains ambitious and adventurous. He enjoys company and likes to go out socialising.


Summary of duties:

To provide support to access various social and recreational activities. You must therefore have a clean driving license.You will need to support with his personal care, including toileting, washing, dressing and preparing meals. He is a very creative individual and requires support to develop his ideas.

Support with gardening and household tasks.

The post will include 5.6 weeks paid annual leave (pro-rata)

Police records check funded by the employer will be required.


The person they are looking for:

The ideal person will have a good sense of humour and should also display plenty of energy, initiative and enthusiasm. In addition, applicants should be patient and trustworthy with a flexible and empathic attitude.A positive attitude and clear understanding of confidentiality is essential. Promoting the independence of the client will be the main focus for any support.

You must be reliable, friendly and punctual.


Times Required:

A variety of hours are available to cover Mornings, Evenings and Weekends. To be discussed at interview.

Holiday and Sickness Cover is also available.

Hustings arranged for the benefit of the disabled community in Wrexham

After a lot of communication via Facebook and Twitter with local candidates for the forthcoming Welsh Assembly elections, Sheila Meadows OBE and I have organised a hustings for recipients of the Welsh Independent Living Grant to listen to the prospective party plans for independent living and help them decide who to vote for on May the 5th.

Below I have copied the flyer that Sheila and I wrote that is to be emailed to those affected in Wrexham and Clwyd South. We are hoping that the meeting will be well attended as we have had confirmation that a number of prominent local politicians will be attending. Those that have been invited include Carrie Harper and Mabon Ap Gwynfor of Plaid Cymru, Alan Butterworth and Duncan Rees of the Green Party, Lesley Griffiths and Ken Skates of the Labour Party and Andrew Atkinson of the Welsh Conservatives.

The flyer reads as follows:

Future of WILG (Previously ILF)

 

Independent living is at risk for disabled people across Wales. In the run up to the May 2016 Assembly elections we have managed to arrange a meeting with local candidates about how they, and their party, plan to support disabled people if elected. 

Meeting to be held at:

Maesgwyn Community Centre

Lilac Way, Wrexham,

LL11 2BB 

Monday 25 April – 1:30-3:00pm

 

The Welsh Independent Living Grant (WILG) will remain in place until March 2017. A total of £27 million will continue to be transferred from the Westminster Government to Wales until 2020. How this sum of money will be administered is anyone’s guess. Should Wales establish their own Welsh Independent Living Fund to provide long-term security? Perhaps you accept the funding should come via the Local Authority but require assurances over ring-fencing? Whatever your standpoint, this is our chance to meet, discuss the issues and question the politicians that will influence our lives over the next political term. Don’t miss your opportunity to be heard…

If you have a question that you want to put to the candidates, or for us to feed back to the Welsh government, email your questions to either Sheila Meadows (sheilamdow@aol.com) or Nathan Lee Davies (nathandavies01@hotmail.com).

We look forward to seeing you all on 25 April at Maesgwyn Community Centre.

Open Letter to Welsh Assembly Candidates for Wrexham

I have spent the morning writing to all the candidates in the Wrexham area for the forthcoming Welsh Assembly elections in order to invite them to take part in a hustings that I am hoping to organise for recipients of WILG.

I will publish any replies I receive and keep you up to date with my progress.

***

Dear Candidate

I am writing to give you the opportunity to be involved in a hustings that I am organising – along with Sheila Meadows OBE – to clarify your position on the future of independent living for disabled people in Wales. Alternatively, I wonder if you are holding any cross party meetings or hustings that WILG recipients could attend to ask questions and gain information.

As a former recipient of ILF, I now rely on the Welsh Independent Living Grant (WILG) to pay for my care team. Future arrangements past March 2017 are clouded in doubt and uncertainty with disabled people facing a bleak future. It is laughable to think that I am one of the lucky ones as in 2010 the ILF was closed to new recipients. Will you, and your party, be prepared to fight for independent living for all?

We are hoping to hire Maesgwyn Community Centre as a venue for this proposed hustings and I believe this will present you with an excellent opportunity to address concerned members of the electorate and reassure them about what you would do to protect and enhance their rights.

In 2013 there were 111 claimants of ILF in Wrexham. We can assume that the numbers receiving WILG are similar and if we include family members and those employed and reliant on such funds then this translates to a large proportion of the eligible voting community. I would argue that this therefore gives you a valuable chance to prove your worth to the local community.

Many thanks for your time and I look forward to hearing from you soon.

Yours sincerely

Nathan Lee Davies

Positions Vacant

PERSONAL ASSISTANT WREXHAM

Required for a 39 year old man, to provide support to remain independent with tasks such as personal care, shopping and preparing meals. A friendly, approachable person who is patient, trustworthy and reliable. Must have full, clean driving license 34.5 hours p/week – Basic rate £7.26 p/h, Enhanced rate is £9.45 p/h . Could be split between 2-3 Personal Assistants. The post will include 5.6 weeks paid annual leave (pro-rata) Training will be available. For full job details and to apply, click here.

Closing date: 22nd March 2016