Disability Arts Cymru

Emergency on Planet Earth #21

I WILL WRITE A NUMBER OF EMERGENCY ON PLANET EARTH BLOGS THROUGHOUT THE TORY SPONSORED CORONAVIRUS CRISIS.

 What follows is a random collection of thoughts from a human being trapped in 21st Century British society. 

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To be honest, I am not sure where to start. There is so much going on, and I have a few potential projects to begin, but not enough support to do everything that I want at this present time.

You would have thought that with everyone on lockdown,  I would be able to make the most of not having to attend appointments or meetings. It is true that this has saved me plenty of time, but unfortunately this has been filled by having to step up to my responsibilities as an employer. I have long been a supporter of independent living for disabled people, so I am not complaining about these duties, but it can be frustrating when dealing with employees who are not team-players. As always, I am looking for new members of staff, but trying to find new blood in the current climate of fear is nigh on impossible. 

I recently watched the film, ‘Crip Camp’ on Netflix. This wonderfully empowering film focuses on Camp Jened – a summer camp for teenagers with disabilities – and the crusade for disability rights that was fostered in this environment.

I thoroughly recommend this film to anyone, whether you are disabled or not. It just shows what is possible if people stand together with a common goal in mind. People should be watching this right now and thinking about how they can help shape the future. There is no doubt that when this Coronavirus crisis is over, we will all be faced with a ‘new normal’, so this is our opportunity to  stand up for what we believe in…

Unfortunately, many people don’t have this thirst for change inside their lackadaisical bodies, but I hope that I am proved wrong.

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One project that I am hoping to start at the end of August is to relive the 1983/84 football season. I could do this via YouTube videos, football programmes, Panini stickers and submerging myself in the news, fashion, food and music of this era. You may be wondering why I would bother to do such a thing, I think it was Xmas 1984 that my Gran gave me a VHS video that I watched religiously throughout my formative years: Race for the Championship 1983/84. It is a fantastic watch, presented by Brian Moore and featuring footballers such as Ian Rush, Kevin Keegan and Eric Gates.

The point is, that I really enjoyed this era in football, as opposed to the dire entertainment that is on offer nowadays. Players receive ridiculous salaries and only the middle classes can afford to regularly attend games.

I need to do a lot of research over the coming months, and I plan on keeping everyone up to date with how my season is going, once it starts in late August. I will also be using the programmes I collect, to create material for the collages that I plan on creating.

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I have tried my hand at Zoom meetings this week. Unfortunately, I find it inaccessible due to my poor hearing. I rely on a Palantypist to allow me access to the words of others. It is very frustrating to be a disabled activist, without a voice, while others contribute freely with impressive looking headphones and accompanying microphones.

All that is left for me to do is poke fun at some of the weird places that people place their cameras. Why on Earth people want to show off their disastrous interior design tastes and skills, is beyond me.  I may not have been able to contribute much to the meetings I have attended, but at least I can take pride in my domestic decor.

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I have put myself forward to become a trustee of Disability Arts Cymru, after being asked to do so. It is an exciting opportunity, and I look forward to discovering if my application has been successful, next month.

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This week, I have been mostly listening to REM.

I love this video, especially the ending when the residents of the bar are mouthing the lyrics of the song. This put me in mind of ‘All Together Now’ by The Farm. I wonder if Michael Stipe or another band member had seen this video and thought, that would be a good idea for them to use.

Anyway, here is my latest earworm:

If any of these videos that I share suddenly refuse to play, please let me know, as I always try to keep this blog as neat and functional as possible. Many thanks.

From Wikipedia:

R.E.M. was an American rock band from Athens, Georgia, formed in 1980 by drummer Bill Berry, guitarist Peter Buck, bassist Mike Mills, and lead vocalist Michael Stipe. Additionally, many liner notes from the band’s albums list attorney Bertis Downs and manager Jefferson Holt as non-musical members. One of the first alternative rock bands, R.E.M. was noted for Buck’s ringing, arpeggiated guitar style, Stipe’s distinctive vocal quality, unique stage presence and obscure lyrics, Mills’s melodic basslines and backing vocals, and Berry’s tight, economical drumming, and backing vocals of his own. In the early 1990s, other alternative rock acts such as Nirvana and Pavement viewed R.E.M. as a pioneer of the genre. After Berry left the band in 1997, through some changes in musical style to include electronic music and pop rock sounds, the band continued its career in the 2000s with mixed critical and commercial success. The band broke up amicably in 2011 with members devoting time on solo projects despite having sold more than 85 million records worldwide and becoming one of the world’s best-selling music artists.

R.E.M. released its first single, “Radio Free Europe“, in 1981 on the independent record label Hib-Tone. It was followed by the Chronic Town EP in 1982, the band’s first release on I.R.S. Records. In 1983, the group released its critically acclaimed debut album, Murmur, and built its reputation over the next few years through subsequent releases each year from 1984 to 1988: ReckoningFables of the ReconstructionLifes Rich PageantDocument and Green, including an intermittent b-side compilation Dead Letter Office. With constant touring, and the support of college radio, following years of underground success, R.E.M. achieved a mainstream hit with the 1987 single “The One I Love“. The group signed to Warner Bros. Records in 1988, and began to espouse political and environmental concerns while playing large arenas worldwide.

R.E.M.’s most commercially successful albums, Out of Time (1991) and Automatic for the People (1992), brought it to the vanguard of alternative rock just as it was becoming mainstream. Out of Time received seven nominations at the 34th Annual Grammy Awards, and lead single “Losing My Religion“, was R.E.M.’s highest-charting and best-selling hit. R.E.M.’s 1994 album Monster continued its run of success. The band began its first tour in six years to support the album; the tour was marred by medical emergencies suffered by three of the band members. In 1996, R.E.M. re-signed with Warner Bros. for a reported US$80 million, at the time the most expensive recording contract in history. The tour however was productive and the band recorded the following album mostly on soundchecks. The resulting record, New Adventures in Hi-Fi (1996) is hailed as the band’s last great album and members’ favourite one, growing in cult status in the years following its release. Berry left the band the following year, and Stipe, Buck, and Mills continued as a trio.

After the electronic experimental direction of Up (1998) that was commercially unsuccessful, Reveal (2001) was referred as “a conscious return to their classic sound” which received general acclaim. In 2007, the band was inducted into the Rock and Roll Hall of Fame, in its first year of eligibility. In order to “redeem themselves” after the lukewarm reception of Around the Sun (2004), the band released the well-received albums Accelerate (2008) and Collapse into Now (2011). R.E.M. disbanded amicably in September 2011, with former members having continued with various musical projects, and several live and archival albums have been released.

Disability News Service: Welsh government’s ‘ludicrous’ failure on independent living framework

The following article was taken from the excellent Disability News Service website, written by John Pring.  This blogger takes no credit for the article below:

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The Welsh government has been criticised for a “ludicrous” and “insulting” failure to address the adult social care funding crisis in a new draft framework on independent living.

Action on Disability, its new draft framework and action plan, was put out to consultation this week, and aims to “develop and improve access to help, advice and services for disabled people in Wales”.

The plan will eventually replace the Welsh government’s 2013 framework for action on independent living and follows a series of meetings and engagement events with disabled people, disability organisations and other stakeholders.

The report says that this public engagement process saw concerns raised about “cuts to social care provision” which had led to “lower allocations” of direct payments, leaving disabled people “increasingly isolated, and the impacts to their wellbeing compromised”.

But despite these concerns, the action plan refers only to previous strategies on services for visually-impaired people, Deaf and autistic people and those with learning difficulties, and fails to include any measures to address the cuts to support and the social care funding crisis.

This contrasts with its 2013 framework, which included lengthy sections on access to social care, direct payments and personalised support.

Of 44 actions supposedly aimed at improving the right to independent living in the new action plan, not one of them explicitly addresses the need to improve the overall access to care and support, although it does promise a review of the aids and adaptations system that supports disabled and older people to live independently in their own homes.

Instead, the action plan covers areas including disability employment, higher education – including a planned review of policy on disabled students’ allowance – public appointments, and access to public transport.

There is also no mention of social care in the section describing the Welsh government’s “commitments” on independent living, even though it promises to “work for continuous improvement” on how it fulfils its obligations under the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

The failure of the action plan to suggest any measures to address the funding crisis and cuts to support suggests the Welsh government is in breach of the convention’s article 19, which says that governments signed up to UNCRPD should take “effective and appropriate measures” to enable disabled people to live in the community with “full inclusion and participation”.

There is also no mention in the document of the Independent Living Fund (ILF), and the Welsh government’s decision to close its interim Welsh Independent Living Grant (WILG) scheme, which it has been running as a stopgap with UK government transition funding since ILF closed in June 2015.

Because of the WILG closure, Welsh local authorities will be solely responsible for meeting the support needs of all former ILF-recipients by 31 March 2019.

Nathan Lee Davies (pictured), who is leading the campaign to persuade the Welsh government to overturn its decision to scrap WILG, said the failure to address social care in the action plan was “ludicrous” and “insulting”.

He said: “They seem like a load of ostriches burying their heads in the sand. It’s just really worrying.

“I am disillusioned but far from surprised. It just seems like they are copying what the Tories have done in Westminster, with the same devaluing of disabled people.”

He suggested that the Welsh Labour government had simply published a “flimsy” framework document in order to “placate the UN, and to be able to say, ‘look, we are doing something to support disabled people’”.

He said that ministers – by closing the WILG – were “washing their hands” of responsibility for social care and handing it to local councils, which could not afford to meet their responsibilities promised under the Social Services and Well-being (Wales) Act 2014, which Davies said should be renamed the Pie in the Sky Act.

Responding to criticisms of the document, a Welsh government official said: “Our ‘Action on Disability: the Right to Independent Living’ framework is a high-level plan covering a wide range of issues in line with our national strategy, Prosperity for All.

“A number of the actions in this draft action plan relate to social care; nevertheless we are open to suggestions on how the plan could be strengthened.

“We encourage everyone to contribute to the consultation – which we launched this week – to influence our future work to support disabled people as best we can.”

Davies has contrasted the actions of the Welsh Labour government with those of the UK Labour party, whose leader, Jeremy Corbyn, has publicly supported his campaign to save the WILG, as did members of Welsh Labour at their annual conference earlier this year.

Davies is determined to persuade the Welsh government to keep the current system, which allows former ILF-recipients some security by receiving funding from three different “pots”: WILG, local authorities and their own personal contributions.

He said that this “tripartite” system had provided the support he needed that led to him being recognised with an honorary degree by Wrexham Glyndwr University for his services to disability rights.

He has also been involved with Wrexham football club, Disabled People Against Cuts, and the Care and Social Services Inspectorate Wales, as well as writing a new book, and running his campaign and a blog.

He also worked with Disability Arts Cymru on a #SaveWILG exhibition of visual art and poetry earlier this year.

Davies is now waiting to hear what will happen to his support package when WILG closes.

List Poem: Living with Ataxia

Disability Arts Cymru have introduced me to the amazing Sophie McKeand – the gifted writer, poet, performer who is the current Young People’s Laureate Wales April 2016 – 2018, winner of the Out Spoken award for Innovation in Poetry 2015 and longlisted for the Poetry Society’s National Poetry Competition in 2014.

Writing about the incredible collection of poetry, Rebel Sun, by McKeand, Martha Sprackland [me neither] says:

“This is mythological, musical poetry that not only crosses borders but seems to dismantle them entirely, collapsing time and space, transfiguring and prefiguring the world we live in.”

I have a signed copy and can confirm the books brilliance.

Anyway, Sophie is an admirer of my Tanka work and has encouraged me to try different poetic forms such as the List Poem below. I was fortunate enough to perform a list poem alongside Sophie at the #SaveWILG community awareness day at Set the Bar in February.

This was a resounding success and gave me the belief in my talent that I needed. It also led to further ideas for more poems such as the one written below. Maybe I can perform this in future with Sophie as I think we made a good pairing. Sophie is an esteemed poet in her own right so she probably doesn’t want me hanging around like a bad smell, but I think that I should maybe be looking for a person to complete my double act. I need an Ant for my Dec.

Anyway, here is my latest list poem:

Introduction: Music of this type will be created and performed as a backdrop to the introduction phase of the poem. This will be narrated by a third party.  

Friedreich’s ataxia is an autosomal recessive inherited disease that causes progressive damage to the nervous system. It manifests in initial symptoms of poor coordination such as gait disturbance; it can also lead to scoliosis, heart disease and diabetes, but does not affect cognitive function. The disease is progressive, and ultimately a wheelchair is required for mobility. Its incidence in the general population is roughly 1 in 50,000.

The ataxia of Friedreich’s ataxia results from the degeneration of nervous tissue in the spinal cord, in particular sensory neurons essential (through connections with the cerebellum) for directing muscle movement of the arms and legs. The spinal cord becomes thinner and nerve cells lose some of their myelin sheath (the insulating covering on some nerve cells that helps conduct nerve impulses).

The condition is named after the German physician Nikolaus Friedreich, who first described it in the 1860s.[1]

Symptoms typically begin sometime between the ages of 5 to 15 years, but in Late Onset FA may occur in the 20s or 30s. Symptoms include any combination, but not necessarily all, of the following:

It presents before 22 years of age with progressive staggering or stumbling gait and frequent falling. Lower extremities are more severely involved. The symptoms are slow and progressive. Long-term observation shows that many patients reach a plateau in symptoms in the patient’s early adulthood. On average, after 10–15 years with the disease, patients are usually wheelchair bound and require assistance with all activities of daily living.[3] 

[The lines in italics throughout the poem are to be spoken by different people dressed in appropriate clothing and illuminated on a dark stage by a spot light]

Living with Ataxia

Is a struggle

Living with Ataxia

Sounds muffled and unclear

Living with Ataxia

Smells of wet denim and shame

Living with Ataxia

Tastes of bitterness

Living with Ataxia

Feels brittle

Living with Ataxia

Wibble wobble, wibble wobble jelly on a plate

Living with Ataxia

Effects everyone around you

Living with Ataxia

Leaves you wondering what might have been

Living with Ataxia

Demands formidable mental strength

Living with Ataxia

Beats being programmed by The Man From Auntie 

Living with Ataxia

Could be the best thing that ever happened [discounting Maggie’s demise]

Living with Ataxia

“He’s just lazy and clumsy”

Living with Ataxia

Means wanting what you can’t have

Living with Ataxia

Forbids carnal delights

Living with Ataxia

Limits your liberty

Living with Ataxia

Allows your imagination to run rampant

Living with Ataxia

Prevents the attainment of Aquarian ambitions

Living with Ataxia

“Trampoline legs”

Living with Ataxia

Colours your life

Living with Ataxia

Black, dark grey or midnight blue

Living with Ataxia

Is not all bad [he lied]

Living with Ataxia

Results in a dark sense of humour

Living with Ataxia

Is no laughing matter

Living with Ataxia

“Sorry sir, I forgot my kit”

Living with Ataxia

Adds fuck all

Living with Ataxia

Subtracts hope

Living with Ataxia

Divides friends and family

Living with Ataxia

Multiplies hurdles

Living with Ataxia

“Maybe it’s a trapped nerve”

Living with Ataxia

Confuses small minds

Living with Ataxia

Frustrates 

Living with Ataxia

Embarrasses

Living with Ataxia

Teaches you virtues, such as “Good things come to those who wait”

Living with Ataxia

Makes you wonder who the fuck wrote virtues?

Living with Ataxia

“Have you got a licence for that?”

Living with Ataxia

Highlights injustice

Living with Ataxia

Illustrates that beauty isn’t only skin deep [thank God]

Living with Ataxia

Condemns you to a life less ordinary

Living with Ataxia

Contradicts

Living with Ataxia

Imposes barriers around ghostly souls

Living with Ataxia

“Sorry, only genetically perfect people can donate sperm”

Living with Ataxia

Did I mention it’s a struggle?

Living with Ataxia

Underlines inequality

Living with Ataxia

Objectifies the body

Living with Ataxia

Mystifies my mixed up mind

Living with Ataxia

Disqualifies true contenders to the crown

Living with Ataxia

“I charge by the hour hun

Living with Ataxia

Locks lively minds in dying bodies

Living with Ataxia

Mangles the idea of perfection

Living with Ataxia

Twists the spine

Living with Ataxia

Causes caustic sorrow

Living with Ataxia

“Fill your pockets chaps. These disabled freaks are easy targets”

Living with Ataxia

Suffocates the soul

Living with Ataxia

Haunts empty shells

Living with Ataxia

Implodes

Living with Ataxia

Crushes everything that’s precious

Living with Ataxia

Guess what? It’s a fucking struggle

#SaveWILG Art Exhibition

The #SaveWILG art exhibition took place at Theatr Clwyd in Mold between January 24th and February 12th. I have included photographs of the art below although these pictures do not give the overall effect of the exhibition, as the Gallery space we were provided with includes large windows which caused sunlight to reflect on the framed artwork. This made capturing perfect photos very difficult.

I also include a YouTube video that illustrates the wealth of support that we received for our postcard campaign. This was shown on a large screen in the Gallery.

Following a conversation with Ted Eames, I have approached Lesley Griffiths, AM for Wrexham, to ask if she could arrange for the exhibition to be shown in the Senedd. She agreed in principle and I hope we can come to some arrangement quickly as time is of the essence.

Overall, the exhibition at Theatr Clwyd was a great success. Thanks are due to Disability Arts Cymru – especially Lowri-Mair Owen – Theatr Clwyd and everyone who visited the show. In particular, I want to thank Julie Rogers-Owen and Heather Wilson for their outstanding contributions in helping me create such a production. The input of David Nulty, Amy Lockhurst, Sophie Morris, Ted Eames, Grace Currie, Sophia Leadill and Georgina Gittins was also crucial to the success of this project.

 

 

 

 

 

 

 

 

YouTube Link – SaveWILG Film

Obviously these photographs do not do our exhibition any credit at all, but I have included them to give you a taste of what we have achieved. I am very proud of the exhibition and hope we can show it to all Assembly Members in the Senedd to help educate and inform them about the importance of maintaining WILG in the first place, before establishing a fairer system that will enable all disabled people to benefit from the right to independent living.

I have not added the artist names alongside these photographs as I would encourage you to try to attend this exhibition wherever it may appear next to get a full flavour of what has been achieved. Thanks to Julie Rogers-Owen for providing the photographs used above.

Switch Off Your TV Set

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

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 24th at 3pm in the Education Gallery at Theatr Clwyd in Mold, north Wales. It will continue until February 12th. 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. Everyone is welcome to the official media launch of the event on February 2nd at 3pm at Theatr Clwyd.

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

Locked in struggle

While you mindless idiots

Feed on distractions

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