Mold

Not Enough Hours in the Day #SaveWILG

I am sick of this.  It is 2018 and I am still being treated like a second class citizen.  I have a progressive condition of the nervous system which is accelerating at quite a rate, yet I still have the same amount of inadequate care and support hours  that I did in 2010 when I first began independent living.  Life is a struggle at the moment and on top of this stress, I am having to campaign wisely to Save the Welsh Independent Living Grant (WILG) plus lead the protests against the proposed Blue Badge charges in Wrexham town centre.

Furthermore, I have a #SaveWILG art exhibition starting at Theatre Clwyd in Mold on Wednesday 24th January and a community awareness day in Wrexham on Saturday 3rd February.  I am throwing myself into all this work in order to help disabled people live independently throughout Wales because I will always fight for what is right and stand up (!) for what I believe in. Bloody principles…

Having to do this with the extra pressures of time limitations is especially difficult.  How do I get across to you the difficulties of coping alone without the necessary assistance?  Unless you spend some time in my shoes it is difficult for you to comprehend the frustration that I face.  I will try to produce a short explanatory documentary one day, but for the best I come up with in a written timetable of my day.

20.01.18

00:00 – I’ve been in bed for two hours now after having to leave an engagement party, for a close friend, earlier than I would have wished if I could live my life without the shackles of limited care hours provided by Wrexham Social Services. I am writing on my laptop computer, but before my PA left he forgot to plug the computer into the socket.  I have just been told that I have 13 minutes left before the battery drains and the computer shuts down.  This is most annoying as all I need to do is switch the power on at the wall. Of course I cannot reach the plug and cannot call for help as no one is working at this hour.

02:00 –  Woke up needing to pass urine after drinking post 20:00, which is my usual cut-off time for fluids. I have an issue with urgency. When I want to go, I want to go but with me I have to take the time to raise my profiling bed, pull my light cord if it hasn’t fallen out of reach, tried to grab my urinal with spasticated hands and then breathe a sigh of relief. Finally if all goes to plan. Unfortunately, during recent months the plan has been coming together less often. This is not a nice admission for a 40-year-old man to have to make, but I am wanting people to realise the distress and discomfort that disabled people are having to put up with as cruel local authorities focus on budgets and ideological austerity that benefit the few at the expense of the many. Lying in your own piss is not fun and can cause skin irritation not to mention the demoralisation and embarrassment of spending countless hours pickling yourself in urine.

04:00 – I wake up shivering and thinking as it is impossible to find any comfort in a wet mattress. It does not help that I am restricted to one position at night and I cannot turn over unassisted. I decide that I will try to call my 68-year-old Father to ask for his help in changing the bed and restoring some comfort. However, my mobile phone has got wet and will not  function at all. I reach for my landline but my dexterity lets me down again and I drop the phone on the floor. I am now unable to contact anyone and will be forced to remain cold and sore until the morning shift arrives at 9:00.

06:00 – I am squinting at the clock on the other side of the room. I think it is 06:00 – only three hours of discomfort and helplessness left. My legs are aching as they are bent at the knees and I cannot straighten them myself. If only I had the support of a carer. When I asked for 24 hour care recently my social worker laughed at me and said that a lot of people think they are entitled to 24 hour care but no one in Wrexham receives such a package of support. She said she could put my request to panel but that they would almost certainly deny my please. I am not asking for the world. Just the opportunity to live in society on an equal footing to everyone else. I know I am better than the one, but at the same time I know that no one is better than me.

08:00 – The central heating has kicked in and I have just woken up in a sweat. I could do with opening the windows or maybe turning the heating down, but I cant do anything while I am stuck in bed unable to contact anyone.

09:00 – The cavalry has arrived. I immediately get out of bed with assistance and take a shower. This instantly improved my mood and I look forward to the day ahead, although I wish I could wash away the embarrassment as easily. Showering is a two person job and can take up to two hours to perform the whole task from bed to wheelchair including toileting and dressing. At 11:00 I can finally start reclaiming my dignity.

12:00 – After breakfast, the telephone rings. The person on the other end of the phone does not understand my voice as my speech is sometimes slurred due to my progressive disability. My PA is able to communicate for me. This is also the case with writing emails. In 2013, I wrote my first book. Over 500 hundred pages in length and something that I am very proud of, but there is no way I could do this now as writing a simple tweet can take me 30 minutes or more. The frustration is unbearable as my mind is as sharp and alert as ever but my body is keeping it prisoner.

13:00 – My PA is due to leave in 1 hour, so I am rushing through my emails trying to make sure everything is done in time as I will be left alone until 19:00. I am concentrating on emails though I am conscious that the ironing pile is building up and the floors could do with mopping. On week days, I have to fit in these emails around housework, appointments and meetings. There really is not enough hours in the day, thanks to Wrexham council…

15:00 – I have now been on my own for over an hour so I have already missed a telephone call and dropped a bottle of water on the kitchen floor where it will have to stay until 19:00. A delivery driver has just knocked on the door to deliver a parcel. This was rather embarrassing for me as usual because when my PA leaves me at 14:00, he or she has to leave my jeans undone so I can reach the crown jewels when I need to use the toilet. This is just another example of the lack of dignity I have to endure when I am left alone.

16:00 – I am rather peckish. I have plenty of food in the cupboards but I cannot reach the snacks that I crave. Even if I could, I would be unable to open the packaging due to my lack of dexterity. I suppose this stops me from becoming a fat bastard. Every cloud…

18:00 – I have just spotted some mail that I must have received earlier, but I cannot open it until later when a PA arrives. They will also have to mop the bathroom floor as I accidentally spilt some urine. My urinal tends to fill up between 14:00 and 19:00 making it heavy and difficult to handle. There are also a couple of books littering the living room floor as my dexterity will not allow me to flick through the pages of a book.

19:00 – The TV goes on and I watch soap operas about people having worse lives than me. This makes me feel semi normal for a minute until they start going on about family. I have a strong and supportive family through biology but I have not built one of my own. I subject myself to emotional turmoil and beat myself up for not achieving more with my life. This simple fact is that there is not enough hours in my day thanks to the irresponsible fascists promoting ideological austerity at Wrexham council. For example, there was recently a job opportunity for a Disability Liaison Officer at Wrexham AFC – that was built for me. I would have been perfect for this position, but could not apply as I simply cannot dedicate enough time to the club that I love, especially when I am alone without support between 14:00 and 19:00. It has also been suggested by my local MP that I should run for election to the local council. This would be one way of changing things and I would relish the challenge, but it is something that I cannot even entertain due to my lack of care and support. This clearly goes against everything set out in the Social Services and Well-being Act as I cannot begin to achieve my goals and aspirations, but the council cannot give a flying fuck about this and would undoubtedly breathe a sigh of relief at the news that I will not be running for public office.

21:00 – Coronation Street is over for another night. My friends were going out to celebrate someone’s birthday tonight. I was invited but as my friends met at 18:00 I could not join them. Another missed opportunity. I just have time to fire off a few emails, take my medication and brush my teeth before it is time to get entangled in my sling and hoisted into my half empty bed like a good little boy.

23:00 – Each night I take my laptop computer to bed in the hope that I will receive some exciting emails. Unfortunately, this is rarely the case unless you count the latest ramblings from Vox Political or Squawkbox. The difficulty is that when I am in bed I have to be in the right position to type. I often slip down the bed and end up in an impossible position. There have been times where I have had to call my Dad to help me save my laptop from falling on the floor, because it has slipped out my grasp and I cannot recover it safely. I usually stay up until 1:00 trying to type or watching TV as I struggle to sleep comfortably for reasons that I have outlined above. If More4 start showing repeats of Father Ted then I know it is getting late and time for sleep. I will venture into the land of nod just as soon as Dougal and Ted perform My Lovely Horse.

 

 

Falling Apart at the Seams

 Loads of things to let you know, but so little time.

First of all a little self promotion, as the following paragraph is from Ian Lucas MP’s monthly CLP report:

I have been working alongside Nathan Davies, a party member here in Wrexham, over the changes the Government has made to the Independent Living Fund. The debate included MPs from Northern Ireland, Scotland, and England as well as Welsh Labour colleagues Susan Elan Jones and Jessica Morden, and it was notable that each part of England criticised the changes the UK Government has made to the administration of the successor to ILF. I was able to pay tribute to the work Nathan has been doing – and to highlight his front page appearance in the Leader that morning. I was not particularly impressed with the Minister’s response, although I will take her up on her offer to meet to discuss my concerns. 

The following video accompanies this text:

Independent Living Debate with Ian Lucas

I think we have established how brilliant I am, but this awesome individual is also struggling at the moment with the effects of Friedrich’s Ataxia. This cruel disease is progressing quickly and really starting to affect my swallowing and speech. I have particular problems before food as I am regularly coughing and choking uncontrollably on my own saliva as I anticipate my food.

Another problem is with my speech. I am afraid that I am beginning to slur more than I use to and I just cant bear listening to myself on TV or radio as the voice that I hear is not the one that I hear in my head when speaking. I really should do something about both problems, but as I am so busy trying to save WILG, I am letting my health slide.

Earlier this week, I received a phone call from the local hospital asking me to come in for a camera down my throat following discussion with my GP about my difficulties choking. I chose to decline there kind offer as I am so busy with other things and cannot afford to lose my voice or become ill at the moment.

I received a newsletter from Ataxia UK today informing me of a speech and language therapy course that they are running in association with the University of Stirling. The second are all taking place through Skype so they are open to everyone. I really should take part and I would like to if only I had the luxury of time to spend looking after myself. The Tories and Wrexham council are ensuring that this is just not possible at the moment.

1Study Advert, Version 4.0, 05 January 2018

Speech Therapy Treatment Study for Friedreich’s Ataxia

Communication problems are a frequent consequence of ataxia. Many people report a decrease in quality of life as they can impact on our social relationships, employment opportunities, etc. Yet there currently is no effective treatment for speech problems that has been properly evaluated, and there is uncertainty amongst clinicians on how best to support people with ataxia with their communication.

We are looking for participants for a study investigating a new treatment approach for speech problems. There is good evidence that this approach is effective for Parkinson’s Disease and we  want to find out whether it can also help those with ataxia. This study is funded by Ataxia UK and aCHaf and carried out by researchers at Strathclyde University in Glasgow.

The treatment will be administered via Skype in your home and there is no need to attend a clinic. It will run for 8 weeks, with two therapy sessions per week and homework practice for the other days. A typical LSVT therapy session will involve practising a good voice production on a series of long ‘ahhhs’ focusing on controlling the loudness of your voice, as well as the pitch. We will then try and transfer these skills to speaking by reading out individual words and functional phrases, working our way up to longer stretches of speech over the course of therapy. As treatment will be carried out in English, it is important that you have Basic English speaking and reading skills. This protocol of activities will be the same for each session, but the materials will increase in complexity. Homework exercises will follow a similar protocol to the therapy sessions and will take about 30 minutes. Ideally, we would like you to practise at least another four times during the week.

We will measure how much your speech has changed after treatment, and also ask you what youthought of the therapy approach. To do this, we will perform two short assessments before and two after treatment, and also do an interview. This will again be done via Skype. Altogether, the study will take about 6 months.

To be able to take part, you need to fulfil the following criteria:
􀁸 Have a confirmed diagnosis of Friedreich’s Ataxia
􀁸 Experience speech or voice problems
􀁸 Not have any other neurological or speech problems
􀁸 Be aged 16 or over
􀁸 Have access to the necessary technology (good internet connection, access to a computer

that allows you to use Skype and has a functional microphone input)
􀁸 Have Basic English speaking and reading skills

If you are interested in participating, please get in touch with us by phone or email and we will give you more detailed information. Please contact:

Aisling Egan
Speech and Language Therapy Unit
School of Psychological Sciences and Health
Strathclyde University
Tel: 0141 548 4393
Email: aisling.egan@strath.ac.uk

I should probably email Aisling to find out more information.

I cannot end this blog without mentioning the two events that have on this week.  The first of which is a #SaveWILG Art exhibition at Theatr Clwyd in Mold, north Wales. This event runs from January 24th to February 12th and includes art, poetry and pictures from a wide range of disability activists and artists. The official media day for this is on February 2nd. I am very proud of what we have put together in such a short space of time.

A leaflet for the Theatr Clwyd event has also been produced by Heather Wilson.

SaveWILGSideA2

SaveWILGSideB2 copy

Our North-East Wales WLG/M comrades are centrally involved in organising this great event. It will be a fantastic occasion, but we need to get as many people there as possible! This is a day of entertainment and information. There is alcohol, soft drinks and food on sale at the venue and there is full Disabled access and a Disabled toilet.  The least we hope anyone can do is promote this event by sharing the flyer and printing it off and putting around your area, disability groups, CLPs etc etc. Raising awareness of the event is crucial to the campaign’s success!The event is FREE to all. Please do help in any way you can.

Schedule

 

Invite to #SaveWILG Art Exhibition Launch

All readers of this blog are invited to the official media launch of the #SaveWILG art exhibition on February 2nd at the Education Gallery, Theatr Clwyd in Mold, north Wales.

If the quality of my poetry and art does not persuade you to come then think about the free wine (or other liquid refreshment) that is on offer as we attempt to create a real buzz for the media. A large attendance will also show the invited AM’s and MP’s the strength of feeling and support on this matter as we try to #SaveWILG.

invitation to #SaveWILG art exhibition

invitation to #SaveWILG art exhibition (Welsh version)

SaveWILGSideA2

SaveWILGSideB2 copy

How to Lose Friends and Alienate People

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

Regular readers of this blog will know that I have put together a collection of poems to reflect the struggles of disabled people in 21st century Britain. I will publish these poems in a book to be released in 2018, utilising the team of illustrators I have assembled 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 collaborating with me on this exciting project. Two of the talented artists who have agreed to illustrate my work are Julie Rogers-Owen and Heather Wilson.

As well as the book, we are also planning an exhibition of my poetry in April in addition to the #SaveWILG exhibition – a collection of visual art, poetry and photographs produced by a number of artists across the UK, focusing on independent living as a whole. The exhibition will open on January 17th at 3pm in the Education Gallery at Theatr Clwyd in Mold, north Wales. It will continue until January 29th. Please come to show your support for this campaign and enjoy the powerful and emotive art created by people with passion and determination that are united in the belief that disabled lives matter.

​Both of these events are being organised with the support of Disability Arts Cymru.


Use your silver spoon

To stir up old prejudice

Spread lies and divide

Power and fortune is yours

Eternal damnation waits…

The Independent: Toby Young’s appointment to board of higher education watchdog sparks criticism

You’re Never Going to Keep Me Down

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 150th poem of 2017 and I have now put together a collection of poems to reflect the struggles of disabled people in 21st century Britain. I will publish these poems in a book to be released in 2018, utilising the team of illustrators I have assembled 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 collaborating with me on this exciting project. Two of the talented artists who have agreed to illustrate my work are Julie Rogers-Owen and Heather Wilson.

As well as the book, we are also planning an exhibition of my poetry in April in addition to the #SaveWILG exhibition – a collection of visual art, poetry and photographs produced by a number of artists across the UK, focusing on independent living as a whole. The exhibition will open on January 17th at 3pm in the Education Gallery at Theatr Clwyd in Mold, north Wales. It will continue until January 29th. Please come to show your support for this campaign and enjoy the powerful and emotive art created by people with passion and determination that are united in the belief that disabled lives matter.

​Both of these events are being organised with the support of Disability Arts Cymru.

Looks like you made it

Limping in at the finish

With your pride intact

Battered, betrayed and broken

Set to fight another day

Follow the Script

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 149th 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 collaborating with me on this exciting project. Two of the talented artists who have agreed to illustrate my work are Julie Rogers-Owen and Heather Wilson.

As well as the book, we are also planning an exhibition of my poetry in April in addition to the #SaveWILG exhibition – a collection of visual art, poetry and photographs produced by a number of artists across the UK, focusing on independent living as a whole. The exhibition will open on January 17th at 3pm in the Education Gallery at Theatr Clwyd. It will continue until January 29th. Please come to show your support for this campaign and enjoy the powerful and emotive art created by people with passion and determination that are united in the belief that disabled lives matter.

​Both of these events are being organised with the support of Disability Arts Cymru.

I, Nathan Davies

Can relate to your story

Of pure frustration

Held back by the damn system

Until the end credits roll

Survival of the Richest

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 148th 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 collaborating with me on this exciting project. Two of the talented artists who have agreed to illustrate my work are Julie Rogers-Owen and Heather Wilson.

As well as the book, we are also planning an exhibition of my poetry in April in addition to the #SaveWILG exhibition – a collection of visual art, poetry and photographs produced by a number of artists across the UK, focusing on independent living as a whole. The exhibition will open on January 17th at 3pm in the Education Gallery at Theatr Clwyd. It will continue until January 29th. Please come to show your support for this campaign and enjoy the powerful and emotive art created by people with passion and determination that are united in the belief that disabled lives matter.

​Both of these events are being organised with the support of Disability Arts Cymru.

 

Our society

Full of  wireless fizz, bang, pop

Magical gadgets

That make your lives easier

While strangers sleep on the streets