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Four Fingers & Thirteen Toes moved to a new home in November 2015.

August 8, 2016

Dear fans of Four Fingers & Thirteen Toes.

Please note that the Blog has now been moved to the following website:-

http://www.rms-consultancy.co.uk/blog/

It continues to be informative, entertaining and a continuation of my book. Please take the opportunity to read any posts you may have missed.

Don’t forget to make a note of its new home.

Cheers.

Rosie

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FOUR FINGERS AND THIRTEEN TOES – Time for a Festive Grumble – Before going off for a Jive

December 15, 2014
Stephen as a Storm Trooper!

Stephen as a Storm Trooper!

Here we are, less than 2 weeks before the “big day” and instead of sipping mulled wine whilst giving orders to my little elf (otherwise known as Stephen) who should have been busily wrapping parcels, we embarked on a rather hectic visit to London; I then had preliminary rehearsals for a variety show, in which I’m performing; and, added to that I have been trying to complete a commissioned painting in time to be delivered as a Christmas present!

However, all of this palled into insignificance by the latest debacle against Disabled People as reported in the media last week.  Three senior Court of Appeal judges – Lady Justice Arden, Lord Justice Lewison and Lord Justice Underhill, overturned a landmark court ruling from September 2014, making it a breach of the Equality Act 2010, for bus drivers to refuse to insist that a mother with a pushchair should leave the designated wheelchair space to make way for a wheelchair user.

The ruling overturned an award to Doug Paulley, a disabled man, of £5,500 damages after he was unable to board a bus because the designated wheelchair space was already occupied by a pram.  It seems the bus driver had asked the child’s mother to make space for the wheelchair user.  She refused.  Apparently, the buggie did not fold down and she wanted to avoid waking her sleeping child.

We are now faced with a situation where the very equalities legislation that was designed to provide Disabled People with a level playing field, has, in this instance, demoted us to the status of second-class citizens.

The implications of the above appeal ruling, is likely to have the effect of dissuading wheelchair users from using public transport, for fear of being left sitting at bus stops for hours on end.

This is already the situation for many wheelchair users trying to use public transport; but now that these incredibly educated judges have effectively stated that mothers with buggies or prams can take precedence over wheelchair users in terms of occupying the designated wheelchair space.  This, sadly, makes a mockery of our disability legislation.

In the United States, the Americans with Disabilities Act 1990 is much stronger than our initial 1995 Disability Discrimination Act, and in most parts of America it has been enforced with vigour. Personally, unless I was absolutely desperate, I would not even bother to wait at a bus stop in the UK for a bus with a vacant designated wheelchair space to take me to my destination.

However, on two previous occasions, Stephen, myself and James have travelled the length and breadth of New York on buses. This might potentially have been a logistical nightmare for two wheelchair users, and a young fit son.  However, fear not, it does not matter where a wheelchair user is in the queue, New Yorkers encourage you to go to the front; and when the bus pulls up, the driver allows alighting passengers off.  The difference between the UK and America is obvious at this point.   Before any embarking passengers are allowed to get onto the bus, the driver will personally assist the wheelchair user to their designated space, strap you into position within an inch of your life, and then allow the other passengers on. If there is somebody standing, a suitcase, shopping bags, buggies and or prams with or without babies in the designated wheelchair space, they will be moved. Nobody argues with the driver!

Whilst on the subject of transport, I have constantly found it difficult to find reliable taxi drivers that you can trust to turn up as and when you want them (at whatever time of the day or night), with vehicles in which you can travel safely.

There was one exception here in Cardiff.  One wonderful taxi driver that I did come to know and trust with my life, he was the kindest driver I have ever met.  I would travel with him on a regular basis (sometimes into the early hours after a night out with my girlfriends) – and he never let me down.  Sadly, Howard passed away over two years ago, and I have not used a taxi since.

On the railways, I can apparently travel from Cardiff Central to London and remain in my wheelchair, in whatever class carriage I choose. However, spontaneity is out of the question … I have to book one of the very precious designated wheelchair spaces three days in advance, and ensure that a message has been forwarded to all stationmasters along the route, in particular to the station at which I need help to get off the train.  Consequently, the last time I travelled on a train in the UK was the early 1980s, and in the salubrious surroundings of the guards van.  Four years ago however, without hindrance or prior arrangement I travelled the trains and subway in New York.

You will have by now gathered that I firmly believe we need enforceable legislation here in the UK, which has real bite!

As for airline travel – don’t get me started.  All I will say is that the amount of support you receive will vary from airport to airport and from airline to airline.  It is equally frustrating and costly and you are constantly worried about your wheelchair being damaged. Reassurance can make or break an aeroplane journey and, having been unfortunate enough to have both manual and powered chairs damaged in transit, I can tell you that airlines and baggage handlers could do with some disability awareness and equality training – not from some non-disabled person pretending to “come fly with me” – but from real people with real experiences.

I, and many other Disability Rights Campaigners, have fought for years for equality for Disabled People. We were part way there when the Disability Discrimination Act 1995 was passed. Flawed as it was, at least we had some kind of legal clout, despite the fact that the word “reasonable” was peppered throughout the legislation.  The problem with “reasonable” is that it is very subjective, and differs from person to person.  However, at least with the legislation, we were able to open up dialogue and help many organisations introduce best practice to their service provision and business operations.

The disability rights campaign was the last of the civil rights movements – Gender and Race has long been legislated upon.  We were still in our infancy when the Government, in its infinite wisdom, decided to amalgamate all equality issues into one single piece of legislation – the Equality Act 2010.  Many equality campaigners (including me) predicted that this would be the demise of disability rights. Indeed the baby has been thrown out with the bathwater and disability rights have fallen to the bottom of the equality agenda.

Hate crime towards disabled people has increased; essential disability benefits have been cut; essential practical support enabling disabled people to work and or be educated have been slashed; and vital positive legislative rulings enabling disabled people to move forward, have been overturned on the whim of non-disabled legal personnel devoid of common sense.

So, whilst I am having a good moan, I would like to take a swipe at those companies out there who make a lot of money on the back of the situation in which disabled people find themselves. I’m specifically talking about the companies who provide essential equipment for disabled people, particularly electric powered wheelchairs.

I’d like to tell you about a dream I had the other night.  In the dream I was being taught to dance the jive – specifically the Jive(R) in a Sunrise Medical wheelchair.  Curious? Well read on.

I have used electric powered wheelchairs since I was about nine years old, and Steve has used a powered chair for nearly ten years. Up until now I have always been an advocate of Sunrise Medical powered chairs.  My first was the innovative manual to powered F15, followed by two consecutive F55’s which were strong and robust.

However, the problem comes when you want to replace a well worn F55, and find that this trusted product is no longer manufactured.  For some unearthly reason, the alternatives on offer are named after a variety of Latin dances … Salsa, Jive, Hula, Rumba … You get the drift!  Conversely, I suppose that a Sunrise wheelchair called Foxtrot, Waltz or American Smooth, just doesn’t send the right product advertising messages for a go-getting corporation that services a world-wide market in powered chairs.

Unfortunately, our chosen alternative to the sturdy and reliable F55 proved rather less than a racy and raunchy Latin dance, but more a clumpy mobility version of Ann Widdecombe and John Sergeant combined.

I could go on forever telling you our saga of such a dreadful product – but Steve is still wrapping presents, and the X Factor is blaring away in the background – so I will simply say that after more than six months of aggravation; an engineer bordering on moving in (as he spent more time in our house than he did at his own); a rather fraught visit to the Sunrise manufacturing hub in the West Midlands (where we discovered that patience and understanding are left firmly locked in the time clock, when the Sunrise shop floor workers clock on); Senior  company management  demonstrating a complete disregard for Sunrise customers, (to the extent that even when they are presented with irrefutable evidence of a product so wanting in quality) that they did not have the decency to acknowledge receipt of email communication.  Maybe they should revisit their professed “Corporate Responsibility” as it is so eloquently quoted on the Sunrise website…

“At Sunrise Medical, we’re not only focused on improving people’s lives, but also the way we do business. Whether it’s being respectful of our environment, contributing to the communities in which we operate in or empowering our employees to think and act in a responsible way – managing our business in a responsible way is important to everyone at Sunrise Medical.”

Steve’s chair was returned, as not fit for purpose.  Fortunately, his saviour came in the form of a Meyra iChair MC3, from our trusted regular wheelchair maintenance company – Hereford Mobility Centre – who supplied a rather nifty black and white version which we have nick-named the “Storm Trooper”.  So, to lighten this blog, I am posting a picture of Steve, in his own inimitable way, modelling his very own little Storm Trooping wheelchair.

For me, I am still plodding on with my JiveR.  Currently I have had the controller and tyres replaced, had to have the arms on the chair fabricated in a stronger fashion, and even then, we have resorted to duct tape to keep a number of nuts and bolts in place!  The only reason I am putting up with this is that I am not particularly disposed to the idea of sitting in a Storm Trooper – Princess Leia I am not!

It still seems that even in these supposed enlightened times, particularly in terms of the provision of goods and services for Disabled People, society generally, providers of goods and services, and the Government are doing a disservice to Disabled People. I can put it no clearer than just to say … “two steps forward and five steps back”.

Yet again disabled people will need to rise up and fight for our rights.  We need separate, clear and enforceable Disability Equality Legislation.

Phew … Rant over.   So all I need to do now is wish you a very happy and peaceful Christmas holiday, and to everyone – regardless of gender, race, religion or disability – I hope you have a New Year that brings empowerment and success in equal measures.

FOUR FINGERS AND THIRTEEN TOES – HOW DO YOU MAKE A “MOUNT’N” MOVE?

July 9, 2014

MONTAGE OF MOUNT'N MOVER IMAGES copy copy

Firstly, welcome to another Four Fingers Blog.  I am sorry for the “blip” in broadcasts, but there has been so much occupying my time over the last few months that the Blog has taken a bit of a back seat.  However, over the next couple of months, I shall update you on the various happenings in the Moriarty-Simmonds household, but for the time being, I thought I would start with a little conundrum about Muhammad and the Mountain.

 

Overcoming obstacles is the stuff of being a disabled person, and so when the mountain seems ever harder to climb, we look at ways of moving the mountain a little closer which, for most of us, means we can look at ways of making life easier in all kinds of different ways.

 

In my case, the imposing mountain was finding it impossible to hold things and quite hard to bend forward to draw, use the iPad, read and to take photographs.  So, I set about doing some internet research on products which were available that might allow me to overcome the mountainous problem of stiff bones for, what seems these days, to be almost all of the time.

 

In our house, Steve has a knack of finding almost anything on line.  His theory is that you ask Google a question (other search engines are available!) in very specific terms, and it usually comes up with the right answer.  I have to confess, it doesn’t always work for me, but in this instance, after months of researching, one day, ‘voila’ it did!

 

Mount’n Mover by BlueSky Designs seemed to be the answer to my prayers. Technically very clever, but also very simple to use.

 

As you know from previous Blogs, I have a clever engineer friend, who has made many useful items for me – one of which – was an electronic camera mount that worked from the battery power of my electric powered wheelchair. 

 

Some of you may also know that late last year, Steve and I acquired new wheelchairs, and without saying too much, quality and durability were not high on the agenda for the design team that manufactured the latest wave of power chairs for the Sunrise Medical stable.  Needless to say, I shall tell you more about our wheelchair experiences in due course, but for the time being it is suffice to say that it would have been almost impossible to transfer my electronic camera system to my new chair, and so a less complex gadget had to be found.  The Mount’n Mover system seemed to be the ideal solution.

 

If we experienced poor customer service with our wheelchairs, my faith in human nature was restored with the management at BlueSky Design – Dianne G.  Having told her what I was after, she rose to the challenge of tailoring the product for my requirements with enthusiasm.  Initially I was looking for a camera mount to attach to my wheelchair, but I got equally excited as the more I researched the product, the more uses I could find for it!  The UK distributors are Leckey.  Based in Northern Ireland, Leckey and their mainland team worked with BlueSky, to get the assessment done, to confirm what I needed. Then we organised a delivery date, which would have put our wheelchair manufacturers to shame. I said I wanted to have the product in time for our holidays, and true to their word thanks to Stephen K., it arrived well before our week away, and  ready for my “newest best friend” Graham B., to come and fit the bracket to my chair and give me some basic training on how the whole thing operated. Regular readers won’t be surprised to hear that I am the first person in the UK to take delivery of this system!

 

One of the things the Mount’n Mover does is give you back some of the spontaneity that life as a disabled person doesn’t always allow.  As an example, taking a photograph is relatively simple task … You see an image, you whip out the camera, take aim and shoot.  With me, it was, a major operation – get out the camera, assemble the electronic system, attach it to the wheelchair, mount the camera onto the electronic system, and by the time all that had been done, the magic of the moment had passed before I had even got my eye to the viewfinder!

 

However, with the Mount’n Mover, simplicity is the key.  A single pole is attached to the wheelchair, with a fairly robust bracket.  At the top of the pole an adjustable arm is attached, at the end of this there is a mounting device onto which all the attachments clip in a matter of seconds.  And so, with a little help from Steve, James or anyone else for that matter; I can manage a multitude of tasks with the minimum of fuss.

 

From the little montage of photographs with this Blog, you will see that I can now use all my “smart” gadgets on the go.  I can even paint and sketch without the need to carry a massive easel. 

 

Over the next couple of months, I am doing some painting exhibitions with the MFPA, and in August I am holding a garage exhibition at home.  I am hoping to showcase how easy it is to use the Mount’n Mover during those events.

 

Keep an eye out on Social Media for more information on the exhibitions; but in the meanwhile I hope this Blog has given you an insight into how the Mount doesn’t just come to Muhammad but can even “Mount’n Move” its way to Rosie!

FOUR FINGERS AND THIRTEEN TOES – MORPHING

June 26, 2013

The last couple of months have been rather hectic to say the least, and there has been an awful lot of morphing going on in our house.

It all started with preparations for the Thalidomide Society 50th Anniversary AGM which was held in March, and at which we were able to celebrate the achievements of the Society and look back at a momentous period of time which saw the organisation go from a small group of parents who came together with the aim of supporting each other through our early childhood, into a body that is well able to represent its members at national and international forums concerned with those who have missing limbs due to various conditions. However, at the core of these celebrations was an acknowledgement that the Society’s history is rich with many diverse characters and personalities, that have helped shape what it does today.

The weekend celebrations culminated in a gala dinner-dance (complete with “jivers” sporting missing bits of all descriptions) which was themed as a murder-mystery evening filled with gangsters and molls. Now to convert into a moll, all we girls need is a bit of red lipstick, a string of fake pearls, a rather dubious looking feather for the hair and a dress with a plunging neckline. Fortunately, all of these items I was able to locate without too much difficulty. No comments about the red lippy or the plunging neckline please … we girls of Irish origin do have to keep the Celtic end up! For my dashing son, morphing into anything remotely resembling Michael Corleone didn’t involve too much trouble, but the conundrum facing us was … what we do with a rather portly husband who left dressing up behind when he left the Wendy house in reception class at Primary school. The problem was compounded by the fact that Steve had been asked to take part in the periphery of the murder mystery by posing as the head of a Chicago mafia family, pitting himself head to head with our good friend Eddie Freeman and his family. Undaunted, and determined to do justice to his debut into the world of murder-mystery, we raided the wardrobe and found just the outfit … A dinner suit, which yes, surprise surprise still fitted, a 1930’s style wing-collar dress shirt, a black bow tie (and self tie at that!), a trilby hat and a rather dapper looking buttonhole in the shape of a red rose (get the connection) which we cannibalised from one of my hair scrunchies from way back in the days when I sported outsized hair bands and bobbles. The 1980’s have so much to answer for!

With the whole ensemble being topped off with a silver walking cane, he really did look the part … So much so that if they ever need to digitally re-master the original Godfather, then I have no doubt that we’ll be packing our bags and heading off to Hollywood!

Now, as you know, I’ve done a bit of acting over the last couple of years, but I had no idea I had a challenger for the title of champion thespian in our family. But rise to the challenge Steve really did. His Chicago accent was a combination of New York Bronx and Forrest Gump with a bit of South Wales Valleys mixed in for good measure. He and Eddie made a grand job of running rings around the paid actors, but somehow, I don’t think they will be invited to join the troupe on a permanent basis.

However, at the end of the day, I think we did a good job of “glamming” up and it was fun, flamboyant and fabulous!

Having found myself in danger of being usurped on the acting front, it was a good job I was able to do a bit of morphing myself, into a student painter with the Mouth and Foot Painting Artists. Since June last year, I have been busying myself and brushing up (excuse the pun!) on my painting skills, and was delighted to have been accepted as a Student of the Organisation, shortly after “Don Simmioni” had made his acting debut. And so between keeping the business ticking along, I now find myself whiling away the hours in front of an easel, from which I have produced a number paintings, with varying degrees of success. However, on the whole, the painting disasters have been far outweighed by the finished pieces which I have been able to submit.

Of course, alongside all of this, has been our need to morph into parents of a nearly adult. And that is not an easy task. How we managed to survive James’s A’ level revision is anyone’s guess, and so to the next morphing episode. Steve has always had a leaning towards being a teacher. I think it may run in the blood, but the law beckoned as a career, and I can’t help thinking that his downfall on the teaching front would have been patience. It may have something to do with taking a horse to water and trying to make it drink, but despite extolling the virtues of revision notes, which would have made the final revision “push” a little bit easier, this worthy suggestion seemed to fall on deaf ears. On a couple of occasions over the last couple of months, I’ve gone out for a pleasant evening with my sisters, only to wonder whether there would be blood on the walls when I returned home. Fortunately, my fears were allayed. Instead I would return home to find a wearisome hubby sitting in front of the telly, with a son who had retired to his room and was engrossed in a Skype conversation with a certain young lady which said conversations (quite understandably) occupy more minutes than Steve has hairs on the top of his head!

It was only the day of the last exam, that I found myself morphing into a blubbering wreck, rather like the one I was fourteen years ago, when we said goodbye to the staff at Acorns Nursery, and Mummy’s “brave little soldier” set off for life in the new world of “big school.” Now Mummy’s boisterous, rowdy, and messy teenager was leaving “big school” and getting ready for the new world of University.

This is where our skills of morphing now have to be imparted into the next generation of Moriarty-Simmonds’. Having secured a part-time job just before Christmas last year, we had hoped that James would have grasped the nettle on budgeting … Wrong! One of the big issues at the moment is fashion, which seems to come at an astronomical price. My most recent duty as the mother of a sixth form school leaver was to spend an afternoon in town, only I must add, to supply the credit card, to buy a new suit for the sixth form prom. The afternoon was great. Rather like old times. We had lunch, mulled over the fun times that flagged up with both of us … For example, the time James and a couple of his school friends were made to sit outside the primary school Headteacher’s office, as they had proudly announced they were going to make a fire by rubbing twigs together – That obviously wasn’t a good idea, but how on earth the playground supervisor thought they were going to morph into the next Bear Grylls, with just a couple of damp twigs from the privet hedge that bordered the playground is beyond me. Then there was the school sports day when James insisted on folding up his clothes before moving onto the next stage of the obstacle race, only to trundle over the finish line, about 10 minutes after the winner, wearing the biggest and broadest smile you could ever wish to see. This was topped off with a reminisce about the primary school proms, which were about as tuneful as the Worzels and the Wombles put together.

How Steve (and his Mum for that matter) weren’t ejected from the concerts is a mystery to this day, for laughing uncontrollably at the string section of the orchestra which sounded more like a collection of alleycats on a promise!

However I digress, back to the shopping expedition. The suit was bought, and having arrived home, Steve needed a stiff drink when he realised he would have to morph into a male escort to pay the bill. The fashion show commenced, and I looked on with more than a little bit of pride, knowing that the bundle which had brought me so much joy when he was born, was parading before me in a grown up suit, and was about to become an adult, and make his own way in the world.

But of course, before those dizzy heights could be scaled, there was a small matter of mastering the washing machine. And there was only one person who was suitably qualified to impart the virtues of separating whites, blacks and colours. Who I ask was this person? Yes, it was none other than good old Stephen.

However, I have to tell you that before he earned his stripes on the washing front, there were a number of mishaps that have left me emotionally scarred. To explain, I have to take you back to a galaxy far, far away. Well, actually, to a time about 25 years ago. In those days, it is fair to say that Steve’s choice of underwear colour was (shall we say) a little sartorially challenged. To be precise – brown and cream, and purple and white! Now, I shan’t take it any further than that, but needless to say, as soon as I was able, I did all I could to morph him from that strange land of psychedelic underwear. Sadly, it was not before he managed to turn everything in one particular wash a rather fetching shade of pink, including shirt, which, once white, was proudly worn as pink for many months; and believe it or not, there wasn’t a tell-tale blotch in sight.

Fortunately, Steve is a fast learner, and quickly learned the importance of not mixing colours. This art was mastered to such an extent that by the time James got to High School, there was only one kid in the class that stood out on the walk home from school. The 60 degree wash, produced such brilliant results that Steve was moved one day to say how proud he was of James … And of course, you now know that I’m not talking about classroom achievements (although there were many of those that Steve was rightly proud of) but rather how the whiter than white shirt was born as a badge of honour to someone who had learned the hard way that clothes washing is a skill in itself!

So, with two loads of washing successfully completed, and with James having a reasonable degree of competence in the kitchen, the only skill which remains unconquered is the budgeting. I guess the next morphing session will be into that of a financial advisor. Whether Steve will finally learn the art of patience, or if he will simply give up and change the PIN number on the bank account remains to be seen. All I hope is we crack that one before the 15th August when the results come out, and my brave little soldier will trundle … not into the Wendy House, but into the Halls of Residence, with a packet of Persil and the words of his Dad ringing in his ears … “Whites, colours and black”
At that stage, Steve can move onto his next morphing act, which is to conjure up lots of things for me to do from September. After all, there are only so many paintings that you can paint in a month, and, come Fresher’s week, the house will be really quiet, with no one to shout at to turn off the lights, or to remind them to flush the loo, or scream at to get them out of bed.

Ah well, long may this summer holiday last, because even though I think we’ve cracked the morphing from being parents of a child, and then into parents of a teenager, and now into a nearly adult … I’d like to hang onto my “Mumsyness” for just a couple more weeks.

Still I think this quote is a really nice way to end this blog:
“There isn’t a child who hasn’t gone out into the brave new world who eventually doesn’t return to the old homestead carrying a bundle of dirty clothes.” ~ Art Buchwald

Fingers crossed for the 15th August, and for everyone else waiting for exam results this summer. Good luck and God speed – Remember to tell them to separate their washing and don’t, under any circumstance buy purple and white underwear!

FOUR FINGERS AND THIRTEEN TOES – LORD ALF MORRIS – A PASSIONATE CARING MAN WITH A COMMITMENT

August 14, 2012

It was with much sadness that I received news of Lord Morris’ passing through the media today.

I held Lord Morris in very high esteem, and that was in no small part due to his un-erring ability to take time to speak with people whom he felt he could help.  It was in this connection that I developed an even greater respect for a man who was so instrumental in changing the face of the UK in its attitude to disabled people.  He was a true champion for Rights for Disabled People and a staunch supporter of campaigns by Thalidomide impaired people.

Those of you who have read my tribute to Lord Jack Ashley, will know that in 2008, I was commissioned by BBC Radio Wales to present a radio documentary on Thalidomide 50 years on.  As part of the documentary I was keen to speak with Lord Morris, and through his office in the House of Lords, suitable arrangements were made to meet with him.

You may recall I previously spoke of meeting Jack and of our “Abbey Road moment”.  That was in fact the same day as I met with Lord Morris (although we had met on a number of occasions in the early 1990s whilst campaigning for the rights for Disabled People).  However, unlike Lord Ashley, we did not zip around the corridors of power on scooters, but we were taken through those imposing corridors by Lord Morris to a Committee Room, where he gave a passionate interview about his involvement in the Thalidomide story.

Before we got to the Committee Room, we passed many eminent members of both the House of Lords and the House of Commons.  I was struck by the genuine sincerity with which Lord Morris was greeted.  If I were to try and paraphrase this, it would be that he was greeted with the affection afforded to the Headmasterly character “Mr. Chips”. 

Lord Morris was quietly spoken, but commanded an air of authority and respect that is virtually impossible to replicate in today’s political world.

Lord Morris will be remembered as a man of integrity, and man of honour.  Most of all he will be remembered as a man who, despite rising from abject poverty to the rank of Elder Statesman, never forgot his solid northern roots.  It is my genuine belief that his understanding of being “ordinary” allowed so many people to warm to such a fine and dignified man. 

Our current politicians have much to learn from people like Alf Morris, and his passing marks the end of an era – of caring and compassionate parliamentarians – that we should mourn alongside the passing of a fine orator, who was revered and respected for all his good works and commitment to social justice.

FOUR FINGERS AND THIRTEEN TOES – GREASE PAINT AND FEATHERS

May 22, 2012

Lights, camera ACTION … I fell dreamily into the arms of my leading man – Keifer was such a fine actor.  We started to embrace and then …

 

“Morning”.  The bedroom curtains were flung back, and in streamed the sunlight from an unusually sunny morning in Cardiff.  My dream was shattered and I was brought back to earth well and truly by the arrival of Alison my PA.

 

Had I been dreaming?  Well sort of.  The night before was the last night of “Birds” – the production that I and about a dozen other disabled people from South Wales and the West country had been rehearsing for what seemed like an age.

 

My (sort of) leading man was Ben, and I’m sure he would be pleased to be compared with Keifer Sutherland.  And we had kind of fallen into each other’s arms when I had my first stage kiss during one of the scenes in which I was cast as Roxy – a supposedly sexy bailiff from the East End. 

 

Plot lines apart, I had taken my inspiration for my “Roxy” character’s accent from a good friend of mine – who wasn’t really sure what to make of my impersonation of her mother tongue; But, that’s what you get with poetic licence.  Wardrobe was completed with a battered leather jacket, and longish biker-type scarf, which meant I ended up looking like a cross between Biggles and the RAF pilot portrayed by Alexander Armstrong in the BBC’s Armstrong and Miller series.

Image

© Phil Cope

 Roxy & ‘Shagger’ performing a Mating Dance!  In the Birds.

Now, if you’re confused, just think what it must have been like for our audience, some of whom had apparently read the original version of the Aristophanes Birds for their literature studies at school and University … Our version bore only a fleeting resemblance to the original, and had been cleverly crafted by writer and Director Cheryl Martin to reflect the desire by so many of us present-day earthlings, to find a better place to live.

 

For quite a while last year, I had a yearning to do something a bit different, and so I took my life in my hands (well actually my little pandies) and went for an audition with the Unusual Stage School in Cardiff for this production.  On the basis that the last time I had done any acting was a couple of years ago, when I played ‘Delilah The Flesh Eating Lesbian Bandit Queen’ in Kate O’Reilly’s “D” Monologues, and before that, when I was in school – a VERY long time ago, I really didn’t hold out much hope.  But, as I’m always up for a challenge, I set about putting a piece together to perform at the audition.  

 

Having mulled over what to do, I eventually compiled a montage of scenes from My Fair Lady, and amazed even myself as to how good I was at Professor Higgins and Colonel Pickering.  The over-the-counter hormone tablets obviously had the desired effect on my otherwise feminine voice!  I did consider mixing it up even more and pitting Eliza Doolittle up against Maria Von Trapp and producing a sketch where the Flower Girl met the Nun on the White Cliffs of Dover, but decided enough was enough.  That would have been too much for even the most hardened Director and her production colleagues to cope with.

 

To my surprise I got the call and commenced my mythical journey with a wonderful group of actors and entourage of a production team, who I am now proud to call my friends.

 

We started with a couple of workshops, and were eventually cast into our parts.

 

I am guessing that I got Roxy because of my Eliza Doolittle impersonation at the audition, but it may equally have been because I’m a mouthy old so-and-so, who just happens to love watching Eastenders.  Perfect casting.  But it wasn’t to stop there.  I was also cast for Cassandra – a self made internet Billionaire.  Apparently Cassandra was to be a no-nonsense type of character, used to getting her own way … Not like me at all!  

Image

Dai, Penguin & Cassandra getting annoyed with the birds! In the Birds. 

But the piece de resistance was to be me as a bird in the chorus.  A Flamingo no less.  Pink (yes, well I’m usually flushed after a glass or two of wine), Graceful (I’ll leave you to decide on that one) and somewhat Flamboyant (Oh, alright then … yes that’s me).

 

Now this costume was magnificent (designed by Steve Denton and made by Bryony-Ruth Tofton).  It entailed layers of pink chiffon with abundant pink feathers.  A pink flamingo hat on top of my head and the longest pink and black false eyelashes you have ever seen in your life!  When it all came together I looked like a cross between Queen Victoria, Barbara Cartland and a Pantomime Dame!

 

Months of preparation, learning lines, and practicing squawking like birds would soon pay off.  But, at what cost?  My family life turned into one long round of learning how to call one of my fellow actors “Shagger” in the most provocative manner possible, given the limitations that present themselves in using an electric powered wheelchair in the confined space of a stage.  But you’ll be pleased to know I mastered that.  You know what they say … Once a flirt!

 

However, learning lines was a whole new experience.  Picture prompts could be found on the bathroom mirror – even my PA’s knew Roxy and Shagger had a “history” on earth-land.  Scripts littered the house, but patience was soon to be tested when I got Steve to play “Shagger” in bed … Did he ruffle my feathers? Well actually No … I was far too concerned with being a thespian to think about anything else!

 

Apart from wearing a blingy dress topped off with a posh scarf, adding a sophisticated silver streak to my hair and an extra layer of red lipstick – I had to wear glasses.  These were large round Harry Potter looking glasses.   With the heat of the lights and much effort getting in and out of costumes, my body temperature went up to boiling point.  Consequently the glasses steamed up and had to be removed by the make-up girls each evening for the finale, so that I could see where I was going and not kill any of the audience!  In the process of getting as far as the performances, James was thoroughly sick of having a penguin to tea, and as for Welcoming anyone to Our World (our chorus for the show), I think both my boys would have happily sent me there, closed the door and thrown away the key!

 

The day of our first performance dawned.  Dress rehearsals done and dusted, costume changes in place, and staging all set.  We were told that we had to be ready, dressed and made-up by no later than 7pm – in time for curtain-up at 8pm. 

 

Steve came to help me with final preparations, and just as we were wrestling with the pink-feathered-flamingo-dress, whilst Steve was joking about the length of time we had been in there, and that others would be thinking we were undertaking ‘the mile-high’ in the accessible loo, my mobile went off … Funny how you can never find your mobile when it rings at the most inopportune of moments.  Seconds later Steve’s mobile went off … Sara our Assistant Director was worried that no-one had seen Roxy for a while – was she OK – Would they need to draft in Shirley Carter from Eastenders as Roxy had seemingly been abducted by aliens.  NO, they wouldn’t, but why can’t a Diva adjust her undergarments in peace?  I bet Amanda Holden didn’t get bothered by the Britain’s Got Talent production crew when she was in the loo last week!

 

But, I suppose it’s all in a day’s work for us theatrical types!

 

You’ll be pleased to know I managed to escape the loo, didn’t get to do the mile high, and remembered all my lines – I think.  I got my first stage “snog” and managed just about hang onto my dignity; looking like a pink version of Queen Victoria in my flamingo outfit … I was definitely amused!

Image

Ben & Rosie dressed as ‘Shagger’ & Flamingo! In the Birds.

But most of all, I had a great time.  Huge thanks to everyone involved in the ‘Birds’ production at the Sherman Theatr Cymru.  The Directors, Managers, Make-up Artists, Costume Makers and Designers, Lighting, Musicians, PAs and all the crew were phenomenal, patient and gifted.  Everyone in the Unusual Stage School is so talented and I have learnt numerous skills from this experience.

I was honoured and touched that so many of my family and friends turned out to support me and the rest of the cast.  Some even travelled from Swindon, Bristol and Oxford just to spend an hour in mythical Cloud Cuckoo Land.

 

I can tell you it was more than a bit strange returning to my day job after all the hype and exhilaration of the production.  I had the pleasure of working with some very talented performers, and am grateful for that opportunity.

 

I’m not entirely sure if I’ll ever be cast as Queen Victoria – pink or otherwise – I’ll leave matriarchal monarchs to Dames Judi Dench and Helen Mirren.  However, you never know … I might just be king for a day!

 

But every cloud has a silver lining.  I don’t have a PA tomorrow, so watch out Keifer. Now, where were we? 

 

Oh yes, the embrace … And CUT … Damn, on the cutting room floor again, but not before I manage to get another blog in the Can!

 

Exit stage left and curtains down.

 

PS – Would I do it again?  Yes, in a heartbeat!

FOUR FINGERS AND THIRTEEN TOES – WHAT’S IN A NAME?

March 5, 2012

Over the half term holiday, Steve and I took a short break to London.  We used a hotel at which we have previously stayed, and in the hope that I could sweet talk the manager into finding a room for us to book when we (fortunately) travel up to see the Olympics.

“Mr. Pessimistic” said I had no chance, but worry not, the name Rosaleen Moriarty-Simmonds is enough to strike fear into the soul of even the most hardened of hotel managers!

So having had a really good Valentine’s meal, not to mention polishing off an appropriate bottle of pink bubbly stuff, I set about my task.

Down to the front desk …. “Allo Madam” … Oh how my heart melted, a Frenchman on Valentine’s day!  I felt fleetingly guilty for leaving Steve to settle the restaurant bill with a rather burly female restaurant manager of Eastern European origin; But, I must confess the emphasis on “fleetingly” as I can’t remember the last time I was in company of a real Frenchman.  With all the charisma that I could muster, I put my chair into riser mode, and inwardly chuckled at the look of amazement on his face, as I appear Goddess-like from the other side of the reception desk.

First things first, I introduced myself.  “Ah Madam” you are of Irish Origin.  “Qui” I replied, and we proceeded to make small talk about how awful it was for so many Irish Rugby fans to have travelled to Paris for the game that never was.

I ascertained that the Manager’s name was Jean-Claude (commonly known, as I discovered during our stay, as “JC”).  I garbled out my request.  I really didn’t think a woman of a certain maturity of age could still be so struck by the French accent, but there you are.  JC reassured me that if I called at the desk in the morning, he would be pleased to help in whatever way he could “Until the morning – Merci” was my reply, and with all the grace of a deflating hot air balloon I returned to ground level, and back to Steve.  Between getting to our room and drifting off to sleep, I had composed a chanson d’amour especially for JC, the lyrics of which will remain firmly in my subconscious!

True to his word, JC did indeed do all he could to help, and managed to persuade the computer system to let him book a room for our Olympic stay.  So, for the time being “Au revoir JC” … Or certainly until our next visit.

The point of the little deviation in this blog is to show just how we react to names.  Would we have taken the Duchess of Cambridge quite so readily to our hearts if she had been called Lilly.  Somehow, “Wills and Lills” doesn’t have quite the same appeal on the tea-towel! What if the Duchess of Cornwall was not Camilla, but rather Cilla … “Charles and Cilla” sounds more like a couple who should occupy one the famous houses on Coronation Street.  But fortunately for our future monarchs the issue of a troublesome name has eluded them.

Most names are capable of change – usually shortened, Ed, Bob, Fred, Andy … the list is endless, and the minute you read those names, you will instantly be able to put a (Thalidomide) face to those names.  Shortening names is OK if you get it right.  For years, I have variously been called Ros, Roz and Rosalind … until I put my foot down – well, in the metaphoric sense.  Now, I am contentedly called Rose or Rosie, or by my correct title of Rosaleen (pronounced Rose-a-leen).  A couple of years ago, Steve had a song written for our wedding anniversary.  From what I can gather, he had more than a little difficulty explaining to the lyricist and the singer how to pronounce my name in the song. Fortunately, in the final product, they got it right, and (as I lean over the bucket!) I can still hear the dulcet tones of the Cornish folk singer telling me how wonderful I am … Ah!

How we are addressed defines who we are.  In a recent report on Dignity in Care for Older People, certain recommendations were made to avoid the use of patronising names for older people. One description which is hoped will be outlawed, is the use of the term “Old Dear”.   I can interject here and tell you that one of my current PA’s used to help an older lady.  She always referred to her as the “old dear” and for the two years that my PA worked for me and this older lady, I never got to find out what her real name was.  I am still trying to educate this particular PA on the use of politically correct language.  Only time will tell if I succeed.  *_*

However, some terms of endearment are can be quite hilarious.  Take for example, the checkout girls at our local supermarket.  I nearly laughed my socks off the other day when, having just bought some petrol, we drove up to the kiosk and the lady behind the glass quaintly referred to Steve as “babe”.  I gather he has a maenad of female followers dotted around the supermarket from the bread section to the flower stall, not to mention the filling station.  All I can say is “Should have gone to SpecSavers”.

Like us, I am sure you have pet names for the members of your household.  I am Oshie (as my sister Denise couldn’t pronounce Rosie, when she was younger); Steve is Tug (a derivative from thug, when he had a short haircut); James is Dopey (need I say more!).  My Dad progressed from plain-old Dad, to Pappy (when he became a Grandfather) and sometimes to Raggy (I think it has something to do with his working clothes!).  My beloved maternal grandmother (to whom I refer in my book) was known as “Queenie” as she never left the house without a string of pearls, rather like the Queen Mother. 

I shan’t even bother you with the pet names that James uses for his Mum and Dad.  Just think cattle – female and male, and you’ll get the drift.  But where those particular terms of endearment came from, I have absolutely no idea.

Names, used in whatever way, can help to form a view of a person or product.  Whenever I venture to have a manicure, I count my lucky stars when I come out the other end with all digits intact.  After all, a book entitled “Three and a Half Fingers and Thirteen Toes” just doesn’t have the same ring as Four Fingers and Thirteen Toes!  Heaven only knows what would happen if I ventured to have a pedicure.  “Four Fingers and 9.75 Toes” would, most definitely fail to ignite the imagination.  Moreover, where would Amazon place it their category list … Maybe under “Contortion Made Simple” or “One Good Reason Not to have a Pedicure”.  Thank goodness I’ll never have to worry about that little problem … I’m not sure if I could cope with a rewrite!

When I googled the meaning of the name Rosaleen, I was surprised to find a conflict between its origins.  I had always thought it had its origins firmly rooted in Irish culture.  Rosaleen is considered as an allegory for the Irish nation communicating a message through a symbolic figure.  It became more widely used following the translation of the Gaelic name Róisín in the James Clarence Mangan poem “Dark Rosaleen”. 

However, a further search shows the name Rosaleen also has a German origin.  How strange therefore, given the whole crux of my story started in Germany, and is inextricably linked to Ireland, that my Mum decided to give me such a unique name.  It was not chosen for any educated or intellectual reasons, but, as my Mum explained to the Doctor who delivered me, she chose it as a “pretty name” – and indeed it is.

Roisin Dubh (pronounced; row sheen dove) means Little Dark Rose or Dark Rosaleen in Gaelic. It’s a traditional Irish poem turned song, that dates back to the 16th century and is one of Ireland’s most famous political songs. In a time where the Irish were not allowed to sing proud songs about their country, many songs arose that seemed to be about women or other subject matters, but were really a pseudonym for Ireland herself.  Thus the name ‘Dark Rosaleen’ is Ireland.

In honour of St. Patrick’s Day, only a couple of weeks away, and in honour of my Irish roots and family, here are the words of ‘Dark Rosaleen’.

Dark Rosaleen

By

James Clarence Mangan

O MY Dark Rosaleen,
Do not sigh, do not weep!
The priests are on the ocean green,
They march along the deep.
There’s wine from the royal Pope,
Upon the ocean green;
And Spanish ale shall give you hope,
My Dark Rosaleen!
My own Rosaleen!
Shall glad your heart, shall give you hope,
Shall give you health, and help, and hope,
My Dark Rosaleen!

Over hills, and thro’ dales,
Have I roam’d for your sake;
All yesterday I sail’d with sails
On river and on lake.
The Erne, at its highest flood,
I dash’d across unseen,
For there was lightning in my blood,
My Dark Rosaleen!
My own Rosaleen!
O, there was lightning in my blood,
Red lightning lighten’d thro’ my blood.
My Dark Rosaleen!

All day long, in unrest,
To and fro, do I move.
The very soul within my breast
Is wasted for you, love!
The heart in my bosom faints
To think of you, my Queen,
My life of life, my saint of saints,
My Dark Rosaleen!
My own Rosaleen!
To hear your sweet and sad complaints,
My life, my love, my saint of saints,
My Dark Rosaleen!

Woe and pain, pain and woe,
Are my lot, night and noon,
To see your bright face clouded so,
Like to the mournful moon.
But yet will I rear your throne
Again in golden sheen;
‘Tis you shall reign, shall reign alone,
My Dark Rosaleen!

My own Rosaleen!
‘Tis you shall have the golden throne,
‘Tis you shall reign, and reign alone,
My Dark Rosaleen!
Over dews, over sands,
Will I fly, for your weal:
Your holy delicate white hands
Shall girdle me with steel.
At home, in your emerald bowers,
From morning’s dawn till e’en,
You’ll pray for me, my flower of flowers,
My Dark Rosaleen!

This blog has been an interesting voyage, which started as a humorous look at names and how they shape characters.  Ironically, and almost by default, I have discovered that all the attributes which come with my names seem to fit my personality and life story perfectly.

So, whilst I am happy to be called Rosie, Rose, or anything else that might seem appropriate! I am Rosaleen through and through, and can’t thank my Mum enough for giving me my name.  It might not figure in the top 100 list of babies names, but if it is symbolic of triumph over adversity and matches my personality, then I’m happy with that.

Four Fingers & Thirteen Toes – The Euthanasia Debate

June 14, 2011

The whole debate about Euthanasia and Assisted Suicide is very topical at the moment.  Even though the subject deviates from many of the topics I generally talk about in my blog, I feel nevertheless that it is still very important.  Also, I discussed the very issue only last month on my radio programme ‘Telling It As It Is’ on Able Radio.

It is a very deep and emotional subject, and many people feel that it is one that they would rather avoid.  Others have firm views on either side of the spectrum.  So, please find below the complete transcript from that particular radio programme, where you can find out what my views on Euthanasia and Assisted Suicide are.

You can listen to this programme again, this Thursday evening (16th June) at 8:00 p.m. on www.ableradio.com  

**********

Welcome to ‘Telling It As It Is’ with me Rosie Moriarty-Simmonds. 

In this programme I will be deviating from our usual format, and dedicating the whole programme to discussing the very topical but contentious issue of ‘Legalising Euthanasia’, Also, called Assisted Dying, Assisted Suicide and Physician-Assisted Suicide’.

As someone who supports the ‘Right to Live’, I have been struggling to remain impartial and balanced in my quest to gather information, and  interpret the arguments, both for and against Euthanasia and Assisted Suicide.

I will try to be as informative and honest as I can :-

  • What are euthanasia and Assisted Suicide? And what is the current situation? – RMS
  • What are the main arguments for euthanasia? – RMS
  • The main arguments against legalising euthanasiaRMS
  • Comments from our listeners – RMS & MJ
  • Has my view changed?- RMS

What are euthanasia and Assisted Suicide?

Euthanasia can be defined as ‘by act or omission, the intentional killing of a person whose life is felt not to be worth living’.

Others say, euthanasia is the “intentional killing of another person at his/her request for compassionate motives.”

Euthanasia can be:

Voluntary – where a competent person requests it

Involuntary – where a competent person is not consulted.  The person wants to live but is killed anyway – Do Not Resuscitate Orders by Doctors on medical notes, without consulting people or having any idea of their true quality of life.

Non-voluntary – where the person cannot make a decision or cannot make their wishes known – in a coma, a very young baby, person is senile, has learning difficulties etc.

Euthanasia is usually carried out by a doctor administering lethal drugs, for example, by injection.

Physician-assisted suicide (PAS) is where a doctor prescribes lethal drugs, for the patient to take himself.

In other words, the physician supplies the patient with the means to end his or her life, but does not carry out the actual killing.

Both euthanasia and assisted suicide are currently illegal in Britain.

Yet, proponents of euthanasia want to replace the comprehensive (and independent) House of Lords report that accompanied Lord Joffe’s euthanasia bills in 2005, with a new report compiled by the recently launched “Commission on Assisted Dying.” 

This inquiry into the issue of assisted suicide, which is not a formal remit from government, was launched with funding from the author Sir Terry Pratchett, who was diagnosed with a form of Alzheimer’s in 2008.

He is to appear in a BBC documentary about assisted suicide this summer.  And says, “I believe everybody possessed of a debilitating and incurable disease should be allowed to pick the hour of their death.”

The same programme will also feature footage of a man with motor neurone disease travelling to the Swiss euthanasia clinic Dignitas and will show him dying on screen.

The ‘Commission on Assisted Dying’, Chaired by Lord Falconer, is expected to deliver its recommendations to MPs over a change in the law this autumn.

But its findings are already a done deal.  Lord Falconer is a well-known advocate of euthanasia, who has already tried to introduce it into legislation in the Lords. 

At the last count, nine of the 12 “Commission” members are on record as supporting some change in the law to allow some form of euthanasia in the UK, (the remaining three are best described as neutral-to-wobbly, so there are no actual opponents of a change in the law here).

The lobby group Dignity in Dying (formerly the Voluntary Euthanasia Society) is now attempting to build momentum for its next attempt to change the law to allow ‘assisted dying’.

This will not be an easy task. Three attempts to change the law in Britain over the last six years have been singularly unsuccessful resulting in defeats.

Opposition is building all over the world with euthanasia bills being defeated in Canada, Australia, the United States, Israel and France, all in the last twelve months.

What are the main arguments for euthanasia?

There are three main arguments for euthanasia.

  • Ø We want it – the autonomy argument
  • Ø We need it – the compassion argument
  • Ø We can control it – the public policy argument

The debate in the 1990s centred on the compassion argument, but because of cultural changes and success in palliative care, has moved to arguments based on autonomy.

Autonomy means ‘self-determination’ and the language heard now in the euthanasia debate is often that of choice, control, freedoms and rights.

The euthanasia lobby’s push, has moved from euthanasia as a ‘needed response to symptoms’ to euthanasia as ‘an autonomous choice’ by those with, for example, degenerative neurological disease.

Those in favour of euthanasia often state that euthanasia and assisted suicide should be a matter of free choice.

Autonomy is important but we have laws because autonomy is not absolute . We all value living in a free society but also recognise that we are ‘not free’ to do things which threaten the reasonable freedoms of others.

Supporters of the “Right to Die,” or of the concept of “dying with dignity,” would argue in favour of an individual’s right to, maintain the ability to opt for a humane and controlled end to his or her life, when that life is felt to be unbearable due to physical pain.

Physician-assisted suicide and euthanasia are topics that tend to stir up a lot of emotion in the people advocating or opposing them.  The fear of living in unendurable pain, or watching a loved one suffer, is for many an incredibly gripping one.

And of course there have been a number of high profile cases in the past couple of years.  Notably Diane Pretty and Debbie Purdy.

Although Assisted suicide remains a criminal offence in England and Wales, (punishable by up to 14 years in prison);       The Director of Public Prosecutions, Keir Starmer QC, issued new guidelines in 2009.

These guidelines said that, decisions about prosecution would be based on the circumstances of each case, and would focus on the motives of those assisting the suicide.

Debbie Purdy, who has multiple sclerosis, won an historic judgment in the House of Lords, which ruled that she had a right to know if her husband would face prosecution in such circumstances. 

It was ruled that if her husband was judged to have acted with compassion, he would not be prosecuted.

Ms Purdy said: “Two years ago, when we won in the House of Lords I was halfway through preparation to go to Switzerland, because I was losing the use of my arms, and I was terrified of what that would mean for me.

“The thing is I haven’t made up my mind about what I want to do because my life is not unbearable.

“But I would have been dead for two years by now if we hadn’t have won.”

Ms Purdy said following the ruling, she was confident enough to cancel the plans in the knowledge that, her husband would not be held accountable for her death in the future.

British people have travelled with friends or family to the Dignitas clinic in Switzerland, where people suffering from terminal illness can end their lives.   Although police investigated the cases, none were taken to court.

In America, the state of Oregon, legalised physician-assisted suicide in 1998.

In the Netherlands voluntary euthanasia and assisted suicide are still criminal offences, but doctors are exempt from criminal liability in certain circumstances.

Those in favour of euthanasia think that there is no reason why euthanasia can’t be controlled by proper regulation, but even they fear that regulations won’t deal with people who want to implement euthanasia for bad motives.

 

What are the main arguments against legalising euthanasia?

The main reasons given for not legalising euthanasia are that it is:

  • Ø Unnecessary – because alternative treatments exist
  • Ø Dangerous – putting vulnerable people at risk
  • Ø Wrong – contrary to all historical codes of ethics

 Those against ‘assisted dying’ and ‘assisted suicide’, like the campaign group Not Dead Yet UK, an international network of disabled people [with physical and sensory impairments, learning difficulties and mental illness,] are actively opposed to moves to legalise assisted suicide, assisted dying and euthanasia.

Not Dead Yet UK say that cases like that of Debbie Purdy, will have far reaching implications in seeking to invalidate the current law, by highlighting a lack of enforcement and legitimising the status quo of generally not prosecuting those who assist another person to die.

Requests for euthanasia and assisted suicide are extremely rare when people’s physical, social, psychological and spiritual needs, are properly met. 

Anti-euthanasia campaigners within the medical profession, say that… The key priority should be to build on the excellent tradition of palliative care available in this country, and make it more readily accessible to all who need it.

There is a postcode lottery of palliative care in this country.  We should be promoting care rather than killing.

The vast majority of people in the UK, dying from diseases like motor neurone disease, do not want ‘euthanasia’ or ‘assisted suicide’.

The very small numbers of high profile cases of ‘assisted suicide’, which are regularly and repeatedly highlighted in the media, are the well-publicised exceptions to the rule.

The real question therefore is, whether we should change the law for a very small number of people who are strongly determined to end their lives. 

To do so would place the lives of a much larger number of vulnerable people in danger, and mean that pressure, whether real or imagined, is felt by sick, disabled and elderly people to request an early death.

If the law is ever changed to allow so called ‘assisted dying’ it is possible that economic pressure will be brought to bear on people, openly or more likely very subtly, to request early death in order to save money for the use of relatives, society or a health service short of resources.

Killing is very cost effective – it doesn’t cost much for an ampoule or barbiturate. That is why there needs to be promotion of care, not killing, and hold onto laws which protect vulnerable people.

Some disabled people have become increasingly anxious about the dangers associated with the call for ‘assisted dying’ to be legalised in the UK. 

The idea that disabled people, including those who do not have long to live, are “better off dead” is not new. 

It is believed that individual disabled people’s suicidal cries for help come from a lack of proper practical, emotional and medical support needed to live dignified lives, rather than from the ‘suffering’ they experience as a result of a medical condition. 

Such loss of hope – which forces some to see death as their only option – is easily misinterpreted in a society that continues to see and treat disabled people as second class citizens. 

Over the last 10 years there have been 134 British cases of ‘assisted suicide’ at the Swiss Dignitas suicide apartment. 

Eight of these have been referred to the Director of Public Prosecutions, for a decision as to whether a prosecution is needed in the public interest. 

They include the case of Daniel James, paralysed from the neck down after a rugby accident, who travelled to Switzerland only 18 months after his injuries were sustained.

In that case the Director of Public Prosecutions, took the view that it would be totally wrong to prosecute his mother, who had been punished enough by her experience.

She had tried everything in her power to stop him seeking ‘assisted suicide’ and is still haunted every day by eventually relenting and accompanying him to Dignitas.

The problem here is that his severe impairment was seen as the rationale for his desire for an assisted suicide.

For Daniel, the fact that he would be permanently disabled was seen as justification for the decision of a previously fit, active and outgoing young man.  

Not Dead Yet UK believe the majority of people who would be affected by assisted dying legislation, are disabled people. 

People already have the right to refuse unwanted treatment. Suicide is no longer illegal. 

Making it legal to assist someone to die, does not give that person a ‘new’ human right – it provides a new immunity from justice for those who provide the assistance.

Assisted suicide should not just be another medical treatment option, and it should not be made any part of routine health care.

Opponents to ‘euthanasia’ believe that legalising ‘assisted suicide’ will inevitably lead to increasingly adverse judgements about the quality of life of disabled people. 

They say, this will undoubtedly begin to affect the many disabled people who cannot speak for themselves and who have not requested death. 

If society as a whole gives in to the demand to assist in a suicide, then they are  reinforcing attitudes that say that ‘the lives of disabled people are not worth living – that they are a particular burden to themselves, their relatives and friends, and the state’. 

These negative attitudes are faced by disabled people all the time.

This discrimination does not just happen at moments of crisis or imminent death.

It is the underlying reason why society is so inaccessible and systematically excludes and isolates disabled people.

As Baroness Jane Campbell, Convener of Not Dead Yet UK, commenting on the prospect of legalising euthanasia says:

“This is the beginning of a process and policy, that can be steadily opened wider and wider, until any person may assist another disabled person to die without consequence.

We believe state sanctioning of ‘assisted suicide’ will inevitably switch the traffic lights from red to green on this issue.”

Comments from our listeners– RMS & MJ

Rebekah [age 37] says :

I believe that there is no right answer. It is a matter of personal choice. Many people have amazing quality of life with serious physical or mental impairments. I do not believe that these alone are reason enough to commit suicide. However, there are extreme circumstances when I think that if that is the path the person wishes to take, (after counselling and full understanding of the impact their choice will have on their loved ones), they should be supported in their choice. I have seen family members battle cancer and given days to live, see every inch of their life pass by in agony, but as they “hang on”, pleading for peace and ending, I just have to stand by and watch. However, I think it would be very very difficult to actually participate in assisting someone. My own feelings are that I would like to remain in control of decisions about my life. It should be my choice. I plan to “book my ticket to Switzerland” if necessary – but hopefully not for a while yet!!

Denis [age 71] says :

I definitely think that euthanasia should be legalised.  I have seen too many people suffer, or no longer know who they are.  I don’t want to ever get into that situation.  If I did, I would want somebody to end it for me.

Kevin Fitzpatrick, from Not Dead Yet UK says :

You cannot legislate for compassion in advance, so it’s a nonsense to try (as though it might even be possible that every time someone was assisted to die, it was only ever a family member helping a ‘loved one’ out of pure(??) compassion).  There is no such thing as complete autonomy (no individual patient is purely autonomous but is always influenced in some way, whether negatively or not) the phrase ‘right to die’ is misleading and is really only shorthand for the right to choose manner and timing which already happens and so needs no legislation and that disabled people’s lives will be put at serious risk if some botched attempt is made to legalise euthanasia.

The debate so far has not reached any great depth having focussed on pleading several individual painful cases. We do not wish to enter the ground of using people’s misery this way, so for this and other reasons, we don’t comment on individuals’ lives.

We do want to question the way in which disabled people’s lives are (not) valued by non-disabled people who will ‘assist’ them to die. That’s to say, non-disabled physicians understand nothing about the lived experience of being disabled but still make the judgement that we have lives that ‘are not worth living’! I think we can all tell some of them, until we’re blue in the face, that we are happy to be alive and they won’t ever be convinced – but maybe the majority can be brought to understand that simple fact……..and that they are in no position of any authority whatever to judge our disabled lives as worthless.

Has my view changed?

Even after spending quite some time researching this subject, I still feel that life is precious.

I am relieved to have read that – In 1994 a House of Lords’ Select Committee reported on euthanasia, and unanimously recommended, no change in the law.

Its Chairman, neurologist Lord Walton, later described in Parliament their concerns about such legislation:

‘We concluded that it was virtually impossible to ensure that all acts of euthanasia were truly voluntary and that any liberalisation of the law in the United Kingdom could not be abused. We were also concerned that vulnerable people – the elderly, lonely, sick or distressed – would feel pressure, whether real or imagined, to request early death.’

I agree with Lord Walton that, people who are dying often feel a burden on relatives, carers and a society short of resources.  

A law allowing euthanasia would place them under huge pressure.

Like many disabled people I too am in constant pain, and experience frustration, anger, distress and discrimination.

It is difficult to measure pain because it is subjective, and yet experience of pain is one of the main reasons used by advocates in favour of euthanasia.

I don’t know how I would feel in the future, or how I would feel if my circumstances changed or degenerated rapidly.

But at this moment in time, despite being a severely disabled person, who although independent of mind, is quite dependent on other people for physical support – I enjoy life too much to even contemplate ending it.

Some people might say, well it’s okay for you to say that, you are happily married, have a beautiful son, a nice home, a job, a close family, lots of friends, good support and a busy social life.

What they don’t know is that I have had to fight hard, work hard, be determined, brave and forthright in order to enjoy the quality of life that I do have.

It would be all too easy for me to sit back and wallow in self-pity, as are the expectations of some people when they first meet me.

Quite often incorrect assumptions are made about me when others meet me for the first time.  Often people say “I feel sorry for you”, or “I would hate to be in your situation”.

Often members of the medical profession are surprised when I tell them about my life and all that I have achieved.

So to have such people make a decision about me and my life, and to have the control and power to end my life legally, would be for me utterly abhorrent.

And as for asking a loved one to assist me to die, it would be unthinkable.

Having experienced the heartache of losing people I love through illness, accident and old age.

I simply could not possibly conceive adding guilt on top of that heartache for the people that I love, by asking them to assist me to commit suicide.

I am firmly of the opinion, that life is for living, life is already too short, make the most of it while you can.

Final sound bite …

 “If you want to tell me what you think of today’s programme, then please email me –

Rosie@ableradio.com

So until the next time, its good bye from me, and all the team on Telling it as it is …”

**********

Just to remind you that, you can listen to this programme again, this Thursday evening (16th June) at 8:00 p.m.  on www.ableradio.com

FOUR FINGERS AND THIRTEEN TOES – WHAT IS IT ABOUT THE SEASONS?

September 23, 2010

In the Northern Hemisphere, today is officially the start of autumn, and it got me thinking about what different seasons mean to different people.

For some, when the kids first start school, autumn marks the start of a whole new chapter of events in family life.  The first Halloween party, the first Christmas school play, and the endless round of chasing your tail going from one activity to another, until your car virtually does the rounds from after school club to friends house, to swimming and karate all in auto pilot.

Then, of course, you get to the last autumn term before they are due to leave school, and you wonder where the time has gone.

My most favourite season is the summer, and when the time comes, at the end of the holidays, to persuade my Dad to come and pack the cases away in the loft for another year, I get quite melancholy.

A couple of weeks ago, I dusted off some old photograph albums that had been nestling quite nicely in more years of dust than I care to remember, and had a good laugh at the photographs from summer holidays that I have enjoyed with family and friends.  Some of my friends reading this blog will remember America ’87, and some may even go back as far as America ’82.  Some may even be able to reminisce about Haighmoor in Jersey and the summer of ’81.  Charles and Diana got married and we rolled around the garden in plastic bin bags – without any dubious thought even entering our heads as to what the use of black PVC would look like.  How times have changed!

Looking back, some of my most memorable achievements have come to fruition in the summer.  Aside from being lucky enough to pass my School, College and University exams, I was blessed with the birth of a wonderful son in the summer of 1995.  And not to be forgotten, I published Four Fingers and Thirteen Toes during the summer months of 2007.

Looking through those old photographs made me realise that we all evolve rather like the seasons.  The priorities, goals and ambitions that we had 25 years ago do change.  Expectations become more realistic, and are tempered with an appreciation that moving into another generational stage in life, should be viewed as a challenge.   My roots are now firmly entrenched in making sure that my family are happy and I relish every moment I spend with them – even if we do have the occasional battle over whether James should do his homework before going off to the gym.

Steve’s favourite seasons are early summer and early autumn.  If anyone has been fortunate enough to spend time in London or Paris during those times, you will know why … Early summer blooms and early autumn colours – what more could you ask for.  Well, only perhaps for a summer that is a little longer so that I can keep my suntan for a couple more weeks; an autumn that keeps the leaves on the trees with those stunning autumnal colours for a while longer, and a winter that is just a little less cold.

However, that wish-list won’t please everyone, and so it is probably just as well that we are stuck with what we have.  But never despair, just think … in about three months time, included in the Sunday paper supplements we will find the 2011 holiday guide.  The weather men will be predicting another record breaking sizzling summer; and I will then be thoroughly depressed because I will be the mother of a school leaver, rather than the “Mummy” of an early year’s primary school pupil!

By then, a significant birthday will have passed, I shall start to receive unsolicited mail from SAGA and my roots will need more attention that the old beech tree in the garden.

So what will I take into the new seasons?  Well how about pleasing myself about what I do, and when I to do it … and starting that philosophy immediately.

Now, the first thing I must do is not to get Dad to put the suitcases in the loft, and then I’ll get my PA to pack my summer gear.  Next I’ll book a ticket to Greece, and change my name to Shirley Valentine or even Τριαντάφυλλο (meaning Rose) …

Alas, there is just one problem; a Greek waiter could never do my hair to my exacting standard.  Thank goodness for a long-suffering husband who can wield a heated hairbrush as well as mine can!

FOUR FINGERS AND THIRTEEN TOES – Rosie’s Story – Sky Real Lives

June 13, 2010

EXCLUSIVE ONLINE PREVIEW – Short Stories – Thalidomide: Rosie’s Story – Sky Real Lives. It is a six minute story which includes many photographs from my family album. My book ‘Four Fingers and Thirteen Toes’, features prominently throughout the short film and gets a great mention.
http://reallives.sky.com/short-stories-thalidomide-rosies-story