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.

 

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4 comments

  1. Words fail me in a different way, Nathan. Your post makes me sad and angry in equal measure. That email reply is a typical brush-off (publishers, agents and the media are only interested in what they perceive as SAFE, unchallenging material). I wonder if there is a way, perhaps via Glyndwr Uni, of contacting the company, Remap, directly??? Perhaps send this post directly to Liz Lefroy and ask if she has any ideas…she gets your blog but I know she receives a lot of stuff and sometimes things slip by. I will refer her to it as well. I hope you can find some way of continuing to write whatever happens.

  2. Dear Nathan,
    The flippant tone of the bbc response suggests you applied for a makeover show rather than for the chance to have enabling equipment designed for you.
    I wonder how the OT and Remap feel about your rejection? Can they can do what the programme makers would have done? What sort of help would they need?
    Prof Vic Grout at Glyndwr (computers) might be able to help – he goes to Momentum meetings – I wonder if he has any contacts with this kind of expertise?
    Would you like a Change.org or 38degrees petition organising to get the bbc to review their assessment procedures?
    I’m going to write to the bbc to tell them that disability should not be subjected to game show ‘winners/losers’ tactics.
    Best wishes Nathan.

  3. Thanks Ted and Georgina – I am in a catch 22 situation as I have lots to complain to the BBC about but not enough hours of support to write about them. I am busy at the moment with all this general election stuff and my head is in a spin. The OT came today along with someone from the assistive technology centre in Cardiff but yet again they had no equipment to make life easier for me. It is horrible when these so called experts look at you struggling without a clue of how to help. I defiantly need a bespoke solution, But in the meantime I will write to Liz Lefroy and Vic Grant when I find the time. The OT was very disappointed with the BBCs response and is going to write to the production company. All this makes the forthcoming election even more terrifying as unless Corbyn wins, I – and countless other disabled people – will never get the help, support and funding that we so desperately need.

  4. Hi Nathan – I’ve read this and I’m going to reply to you privately by email. The BBC has missed an excellent opportunity which would improve their ratings. You are TV gold, quite apart from any moral issues involved. See you soon, Liz

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