Happy Christmas everyone

Hello and welcome to my blog.  It's lovely to see you again and if you're a first timer, come on in and make yourself at home. 

I'm sorry I've not blogged for a while, but I wanted to give visitors, coming via the Shoreham Herald article, "Beach blogger battles for change," a chance to read all of Alison's words. Another edition of the paper has since been issued so it's time to move on. 

So with Christmas around the corner, I'm going to postpone the next feature on disability and wish you a very Happy Christmas. 

Here's a little present to say thank you for reading this blog.  It's by Terry Commander and I do hope you like it. 

I also wanted to re-publish Rev Gail Souppouris's 2010 Christmas message as it always makes me stop and think. 

"The Work of Christmas"

"When the song of the angels is stilled,

when the star in the sky is gone,
when the kings and princes are home,

when the shepherds are back with their flocks,
The work of Christmas begins:
To find the lost, to heal the broken,

to release the prisoner, to rebuild the nations,
to bring peace among brothers and sisters,

to make music in the heart"

Howard Thurman

Following is based on a reflection from Rev'd Dr Sara I Chandler via The answer. St Margaret's Woodbridge, Virginia.

"This little piece reminds us that the real Christmas is not putting up a tree or taking it down, not in decorating or undecorating, not in shopping or in returning things to the store. Not in eating too much or singing too many carols. Rather the work of Christmas is recognising the meaning of Christ's coming for the world and us. To understand that the meaning comes from beginning to live it out.

By mending a quarrel...seeking out a forgotten friend.....dismissing suspicion and replacing it with trust....writing a letter...sharing some treasure....giving a soft answer...encouraging youth....manifesting our faith in word and deed...keeping a promise....Finding the time....Foregoing a grudge....forgiving an enemy...listening...apologising if you were wrong...trying to understand...rejecting envy as unworthy....Examining your demands on others...appreciating others...being kind and gentle...laughing a little...laughing a little more...taking up arms against malice...challenging complacency...Expressing your gratitude....Welcoming a stranger...speaking your love....

Speak your love again....not just to those who are close to you, but to each person you meet… speak your love to those you find it difficult to like…speak your love to those who don’t appear to like you … speak your love as if you were speaking it to the Christ-child – the baby we welcome today … speak your love, and his love … speak it, then speak it still once more!"

Have a wonderful Christmas and a contented New Year. I look forward to seeing you again in 2013 with the concluding blog in the disability series. 

We will always think of disability in the same way.

Hello and welcome to my blog. It's lovely to see you again. Now this is a long blog so I’ll get straight down to business.

     The last few blogs have been connected by Lord Coe's statement at the 2012 Paralympics that, "We will never think of disability in the same way."  Marc Quinn's famous sculpture of Alison Lapper dominated the end of the closing ceremony so I asked our local MBE, artist and campaigner what she thought of Lord Coe's statement.

"The Paralympics were amazing and it was about time that disabled athletes were treated with the same respect as their able-bodied counter parts, but for society to never think of disability the same way we have to be accepted.

     We have to be allowed to have the same wants and needs as able-bodied people.

     We have to knock physical attributes and virility off the pedestal and think about what else people can contribute. The Paralympics was all about celebrating and elevating physical achievement so acceptance cannot be achieved on the back of that, but it can be achieved if there are some fundamental changes to the way our society thinks.

   Disabled people should be thought of as contributors to society rather than takers.

     I work and most of the people I grew up with, as far as I'm aware, work. We pay taxes.

     A lot of the disabled people I know are self-employed. I'm self-employed and work at home but because I don't drive a van advertising that I'm a disabled artist, millions of people assume I don't work.  

     If they are not self-employed my disabled friends are employed in jobs to do with disability such as raising awareness and acceptance of it. We're experts in managing our disabilities but talking about it is often viewed as our only employable skill.  It’s not.

     Either way we’re not high profile workers so it’s easy to falsely assume that most of us are unemployed and doing nothing except sapping money from social services.

  We have to be integrated into the workforce.

     For us to be looked upon as contributors we have to be integrated, I hate that word, but integrated to such an extent that it's no longer unusual to see somebody with a disability in a job.  And we need to be seen as capable of doing more than the bare minimum of what people would consider employment.

     We’d still be stared at. There would still be comments and assumptions made like if you’re in a wheelchair you can’t have a brain in your head, but eventually we’d be accepted. I saw it when I went into a school a year or so ago. I was working with a very cocky, tough group of lads who knew it all. I taught them to paint with their mouths and feet. They had to sit down and think how they were going to get their palette to the sink and wash it with their hands behind their backs. It was fun and they got into a right mess but at the end of the day one of them took off his T-shirt and they all signed it and said that I’d changed their attitudes towards somebody with a disability.

     You're always going to get that one person who will never think you are good enough but eventually we’d be accepted.

   We have to stop being viewed as helpless charity cases.

     Technological and medical advances mean that more disabled people are surviving. If there aren't the funds available from Government to support us it has to come from charity and this is the catch.

     Charities are fighting to get you to put your hand in your pocket so they will use the clichéd image of a disabled person, be they young or old, in a wheelchair and unable to help themselves without charity. Yet with charity some of us are enabled to help ourselves, or a child locked into their own world can enjoy lots of sensory stimulation.  

     But charity costs the recipient too because charity cases aren’t allowed to have any dignity. Where’s the dignity in holding out the begging bowl?

   Society has to stop thinking that we are abnormal.

     We all bandy it about but we really don’t know what normal is yet somewhere out there there is a very clear picture of what is normal. We try to fit into the definition by saying look I work therefore I’m normal but that’s rubbish. We don’t fit in.  Even before we’re born mothers are offered a termination in case they can’t cope with us.  

     If we don’t fit in, not only are we excluded, we’re also somehow asking to be mocked, despised, abused, tortured or killed and society seems to tolerate it.

  Stop thinking we cannot be proper parents.

     We were brought up to believe that we would never be attractive to anyone unless it was to another disabled person and then that was kind of dirty. We were told we were never going to be parents and we were not supposed to want, to need, to be allowed to have that kind of normality.

     As a disabled parent you know there are certain things you cannot do. I can't play football with Parys. Parys doesn't even like football but that's irrelevant, people still remind me that I can’t. Even your child's friends let you know about it!

     Parenting is about more than seeing to the physical needs of the child but where the disabled are concerned, that's the only thing that seems to count. If we can’t tend to those, we can’t be proper parents. That’s rubbish.

 We are not God’s punishment, blameworthy or unclean.

     We are just ordinary people who happen to be born with a disability. I am an ordinary person who just happened to be born with Phocomelia yet I still have the same needs, wants and aspirations of able-bodied people. Most of us do.

     Lord Coe’s statement was bold and brave and I wish it were true but it’s not. 
     For society to never think of disability in the same way, it has to stop thinking of us as stupid, sexless, blameworthy takers. It has to accept us and one amazing Paralympics cannot do that. It can only be done if we challenge some of the foundations upon which Western Civilization is based. Now that would be a competition worth watching."

Next time I'll be looking at the work of Professor Colin Barnes in an attempt to find the origins of society's attitudes towards disability. Good-bye for now.

Age shall not weary them.

Hello and welcome to my blog. It’s lovely to see you again.

Today is Remembrance Sunday so whilst I finalise the blog on Ali Lapper, I want to revisit a blog published in November 2009 on William Bushrod.

William has lived in Shoreham for over 50 years and was a wireless operator in the Second World War.

1945. William, leading wireless operator.

In 1942 he was working in Southdowns Bus Company in Portslade. He was already in the Home Guard and Sea Cadets so it felt natural to enlist to join the Royal Navy. Thus on 13th March Bill joined around 20 other 17 years olds from all over the country to train as a wireless operator.

It was a happy time as the men got on well, despite their varied backgrounds, accents and attitudes. Sadly for Bill though, it was short-lived. He suffered from tonsillitis between the final exams and being drafted, so whilst his classmates left for their ships, he was stuck in hospital and lost contact with them. In October Bill was finally drafted to HMS Europa, but it was on HMS British that he spent most of his naval career.

HMS British was the senior vessel in a group of four minesweepers on patrol between Cromer and Flamborough Head when Bill was there. The minesweepers were responsible for clearing mines dropped in the shipping lanes. They did this by trailing gear behind them that severed the wires connecting the mines to the seabed. As the mines floated to the surface, they were sunk or exploded.

Bill, as wireless operator on the senior vessel, was responsible for organising the watch for the entire group. Nine out of ten orders were for a silent watch because their patrols were at the top end of E-boat alley. The E stood for enemy and the boats were the German equivalent of allied Patrol or Motor Torpedo Boats. Their official name was Schnellboot, (fast boat), and they had a formidable reputation in the Royal Navy. They dominated night warfare in our coastal waters. Elusive, stealthy and fast, they silently sought out allied vessels and ambushed them. Bill witnessed their effectiveness first hand when an E-Boat ambushed one of their minesweepers. Only the nameplate was left, HMS Cap D'antifer.

After being briefly drafted to a Drifter, Bill returned to shore and at HMS Mercury trained to become a leading telegraphist (wireless operator). In September 1944 he returned to sea, joining HMS Barcley Castle on convoy escort and anti-submarine patrol. She patrolled the western approaches, picking up the convoys in the Atlantic and escorting them back to England. With customary understatement, Bill says, "It wasn't so dangerous then as things had quietened down."

It was whilst HMS Barcley Castle was close to the Channel Islands, that Bill picked up the broadcast to the Germans telling them to prepare to capitulate. He took down every word and sent the message up to the Skipper. War had ended and the ship's company was jubilant. At the end of their escort they were ordered to go to a Loch in Scotland. When they arrived they joined 14 other naval vessels escorting 8 German submarines down to Belfast. It was an impressive sight.

He says of his war experience, "it taught me a lot in so many different ways. How to get on with people of different backgrounds, ways, outlooks and opinions. I enjoyed it to a great extent and I appreciated the service part. I gained promotion. I learnt how to act in charge of other people."

Now approaching 90, William was one of the hundreds of local people who gathered at the town’s Cenotaph this morning to remember the dead. He may also be at Shoreham Fort tonight for a candlelit Remembrance Service. I will be there reading “Taking a Stand” by John Bailey.

Next week, I'll return to the series of blogs on disability.

Good-bye for now. 

A day in the life of Sussex Sailability

Hello and welcome to my blog. It’s lovely to see you again. If you're a first time visitor c’mon in, you’re very welcome.

As I mentioned last week, I’m focusing on disability at the moment so last Saturday I spent the afternoon with Sussex Sailability.

Sussex Sailability was founded by the RYA at Sussex Yacht Club in 2000 with the aim of encouraging disabled people to take up sailing.

Now in its twelfth year, Pat Jackson, one of the original founders said, “We are delighted with how it’s going. We started with eight boats, two of which were loaned to us by Andy Cassell, one of the first Paralympic sailing Gold Medalists.  Now we’ve got twelve boats, forty volunteers and thirty-fifty members.

Some members are in a wheelchair for all their waking hours. We can get them into a hoist and sailing within thirty minutes. After two or three sessions we let them lose on their own and they can say, “I’m in charge now,” and it’s quite humbling. 

It’s also superb for people with mental disabilities.  About 10 years ago we had a lad with depression. He wouldn’t even get up in the morning but he sailed with us and began to come out of himself. He ended up with a job in the fitness industry.”

I joined them on the last day of the 2012 sailing season and some sailors told me what Sussex Sailability meant to them. “It’s my life”, said J, “ I was in a wheelchair and it gave me a reason to get up and go. Now I help to teach other disabled sailors how to sail.” R said, “It’s freeing and it gives us equality with the able-bodied.”

After being kitted out with waterproofs and a lifejacket, I joined Mark and Gabi, his carer, on the Pioneer, a Ro-Ro powerboat designed to accommodate wheelchair users. Mark lives in a residential care home and has been coming to Sussex Sailability every 3 weeks for the last 7 years. Gabi says he loves it and he would have to because that day was wet, cold and calm.  

Despite the poor weather, John Mactear, acting joint chairman, was determined not to disappoint those who had turned out so set up a racecourse at the mouth of the River Adur.  Four Access boats took part, two of which entered into a spirited race. One boat was hampered by a rudder which had been broken that morning and sadly that's how it will remain because Sussex Sailability do not have the funds to fix it.

Sussex Sailability, like so many other voluntary organisations, is perpetually short of money. Its sailing fleet is aging and damaged sails and centerboards are patched up, yet nothing holds them back. As J said, “We’ll never turn people* away. Even if we have to put them in a bath tub, we’ll get them on the water.”

If you would like to find out more about joining, volunteering or fund-raising for Sussex Sailability visit www.sussexsailability.org or call 01798 812265.

If you would like to make a donation any amount will do but here are a few items on their wish list:-

Buoyancy aids                   £30

Ropes                                 £20-30

Waterproof trousers            £50

Trailer wheels                     £80

Waterproof jackets              £80

Rudder                                £150

Tin of anti-fouling paint      £150

It’s half term next week so I’ll be back in about 10 days with Alison Lapper’s thoughts on Lord Coe's statement that “we will never think of disability the same way” after the 2012 Paralympics.

Bye for now.

* Minimum sailing age is 14 years old. 

"We will never think of disability in the same way."

Hello and welcome to my blog.  It's great to see you again and I hope you've had a fruitful week. I confess that mine has been mixed.

In the next few blogs I want to talk about something close to my heart, physical and mental disability.

Let me start by saying that I believe that our society would be happier, fairer and more successful if disabled people were as fully integrated into society as they wished to be and were treated with dignity and compassion. For that reason I'm going to focus on the 2012 Paralympic Games in London because that's where we saw this in action and it was inspirational.

We had a one day pass for the Paralympics and at the end of the day we were desperate to return not only because we were stunned by the standard of sportsmanship but because the atmosphere was addictive. It wasn't the atmosphere created by the Games Makers, but the one created by the disabled spectators. They were proud, confident and our equals. Indeed it felt like they were more than equals because the Paralympics was their party and we were the guests. My one abiding memory was of a young girl, about 11 or so, dancing her socks off to rock music during a basketball match. She had celebral palsy and I so wished that she had been captured on camera because she summed up what could be achieved if we set our minds to it.  I'm not just talking about the fact that she was excited enough to dance, I believe that she could dance so freely because a whole infrastructure had been set up to allow her to get there; the venue was dedicated to serve her needs and the spectators made her feel at home.

As Roberta Nichols from Westcliff-on-Sea wrote in The Times (Tuesday September 11 2012),

"The recent exposure to so many disabilities must surely have made a difference. Instead of staring, or feeling uncomfortable in their presence, let us hope that more people will now welcome them (the disabled) into restaurants, shops and workplaces"  

Would that girl have danced so freely if she had felt unwelcome?

I would go further and say that any welcome must extend to practical and lasting assistance so that it becomes the norm to see disabled and able bodied people dining out together, going to the cinema, sitting together on the train. Disabled people and their carers have enough to contend with everyday of their lives, why should they be stigmatised and marginalised too?

Lord Coe said that the UK  "will never think of disability in the same way," and LOCOG showed us the way. It would be criminal not to build on the wave of goodwill towards the disabled and perhaps we can start by treating them as our neighbours who could probably teach us more about living in one hour than we could learn in a year.

Next week, I'll be featuring Sailability, the RYA's (Royal Yachting Association), initiative to encourage and support people with disabilities to take up sailing.

Bye for now.

Movies and your Memories

Hello and welcome to my blog. It's lovely to see you again. If you're new to lifeon, come on in you're very welcome.

Last week I mentioned Shoreham Wordfest, our local festival of the written, spoken and sung word. Now in its second year, Wordfest is developing its own momentum.  At least a third of the events were sold out and I was struck by the level of interest in local history and the support for new local writers. As a new local writer myself, it's encouraging to see that people are prepared to come and listen to our work; work which may not see the light of day without this sort of opportunity.

It was at the Cinema-by-Sea talk by David Fisher that I learned of Movies and Memories, a Screen Archive project to gather personal memories from the residents and visitors of West Sussex seaside towns. The memories of the over 50's are of particular interest but younger souls can take part if they'd like.

I fit into the latter category and want to share a memory from 1973, the year we moved from Crawley to Shoreham and I was just a stringy 8 year old.

We'd brought a house on the spanking new Wimpy estate on Buckingham Farm, North Shoreham. Ours was one of only a handful of finished houses so we spent our first year living on a building site. Back then they weren't sealed off so to me we'd ended up in a vast adventure playground.

We launched ourselves into giant sandpits from half built houses, we left neat rows of finger prints in newly applied putty, we built houses out of "spare" bricks, timber and concrete and made dens in the back of garages, the bottom of drain stacks and in coal sheds. We would go from door to door asking our new neighbours if they had any carpet offcuts, old bric-a-brac or kids we could play with. If we got tired of that we'd have a stone fight with our mortal enemies, the ginger-headed McWatts. It was an urban idyll.

One damp autumn day the McWatts had gone to ground so me and Claire, best friends forever, squelched our way down Black Patch Grove waiting for something exciting to happen. We decided to pass the time by walking in the deep muddy troughs created by Caterpillar tracks but didn't get far. After a few slurpy steps my wellies stuck fast and there was no shifting them. Knowing that mum would not be impressed if I returned home in my socks, I decided to rock to and fro to see if that would help. I continued doing this until gravity kicked in.  Claire yelled "Timber!" as I slowly keeled over into the mud and emerged looking like a thickly coated chocolate biscuit.

As we trudged back home, me holding my wellies and Claire holding her sides,  I convinced myself that I looked perfectly normal from behind and thanked God that the McWatts were still nowhere to be seen.

If you've got any memories you'd like to share email Sara Duffy or Gillian Edom at moviesandmemories@gmail.com.

Take care and see you next week.

Ta-ra.

Shoreham Wordfest

Hello and welcome to my blog. It's lovely to see you again.

Shoreham Beach is a soggy, windy and slightly inaccessible place at the moment. The weather is set to change but the footbridge will remain closed for another 4 weeks as work continues on the new footbridge.  I expected its' closure to cause pandemonium but we seem to have taken it in our stride.

As promised, this week I'm focussing on Shoreham Wordfest.  Now in its second year, Shoreham Wordfest is a local literary festival which aims to celebrate the written, spoken and sung words of new and established writers. It was officially launched last night and will end on 7th October.

As a new local writer myself,  I was asked to contribute to Wordfest and in fact missed a few blogs because I was working on my script. For various reasons my play, "The Orchards"  could not be included in this year's programme but it will be performed under the Wordfest banner in Spring 2013.  I'll let you know when.

Now some of this year's events have already sold out so you may need to get your skates on if you don't want to miss out. There's a huge variety of events to choose from ranging from a literary lunch with Simon Brett to Rattle Tales.

I'm looking forward to Cinema-by-Sea as I want to find out whether the beach studio complex really ever came close to being the Los Angeles of the British Film Industry and a highlight for the family is Rhyme Rhythm and Rap with Brian Moses.

He describes himself as a modern equivalent to a Medieval travelling jester which will go down a storm with our 7 year old. Talking of which, I'd recommend Tiger's Eye Writers for budding young local writers.  It's lovely to see samples of their work after each session but honestly, what planet are they on?!

Hope to see you at Wordfest.

Ta-ra for now.

Touched by Hillsborough

Hello and welcome to my blog.  Lovely to see you again on this glorious September afternoon.

Regulars will know that periodically I comment on national or international news. Today I'd like to focus on Hillsborough following the publication of the Hillsborough Independent Panel's report into the "most serious tragedy in UK sporting history."

On 15th April 1989, along with millions of other viewers, I decided to watch the live broadcast of the FA Cup Semi-final between Liverpool F.C and Nottingham Forest at Hillsborough.

Central pens of Leppings Lane terraces at around 3.00pm.

Note how densely packed they are compared to the pen in the foreground and the stand above.








The moment I turned on the TV it was clear something was horribly wrong. The commentators sounded shocked and bewildered. Instead of players on the pitch there were fans milling around or running across the pitch carrying people on billboards doubling as stretchers. There was only one ambulance making it's way through the crowds and I began to panic.

However my panic was nothing compared to those with families and friends present and who were also watching or listening to the unfolding events. One of them was Alexandra Penk who's fiancé Carl Rimmer was at the match, "They had known each other for four years and recently became engaged. They planned to marry in late 1989 or at the latest early in 1990. She knew he was at the match and would be on the Leppings Lane terraces. She saw television, in her sister's house and knew instinctively that her fiancé was in trouble. She continued to watch in the hope of seeing him but did not do so. She was told at about 11 p.m. that he was dead." (Alcock v Chief Constable of South Yorkshire [1991] UKHL 5) 

Carl Rimmer was one of  95 men, women and children who died at Hillsborough that day.

Yet before the dead had even been buried, the cover-up and smear campaign had begun. The police blamed violent, drunken, ticketless Liverpool fans for causing the tragedy. The Sun newspaper repeated the police's version of events under the banner headline "The Truth" smearing the reputation of Liverpool F.C and the city itself and a new chant of, "You killed your own fans" began to be heard on football terraces.      

When the Chief Constable of South Yorkshire Police admitted negligence in respect of the deaths and physical injuries, sixteen separate claims were brought against him for damages for psychiatric injury by those whose loved ones had been at the match and who had, like me, heard the radio reports or watched the live or recorded TV footage. All their claims for damages failed but ten claimants went on to appeal to the House of Lords.

I was at the College of Law when the case was heard and we studied the rulings.  Significantly the Lords referred to 95 victims of Hillsborough because the 96th victim, Tony Bland, was still alive at that time.

Tony Bland was 18 years old when he was caught in the crush at Leppings Lane. He suffered severe anoxic brain damage and was admitted to hospital where his condition was consistent with being in a vegetative state. Despite "excellent medical care" he showed no signs of improvement so the medical team headed by Dr Howe, and the Bland family decided that treatment should be withdrawn. However the Coroner objected, notified West Midlands Police and they advised Dr Howe that he would be charged with murder should treatment be withdrawn. That meant that the Bland family had to apply to the High Court for permission to turn off their son's ventilator.  The High Court granted it but the decision was appealed by Airedale NHS Trust and once again the House of Lords was asked to rule on a Hillsborough case.

In what became the landmark case of Airedale NHS Trust v Bland [1993] AC 789,  the House of Lords agreed with the High Court and ruled in favour of the family. Tony Bland became the first patient in English legal history to be allowed, by the courts, to die and this is still an important case in the right to die cases.

On 22 February 1993 Tony Bland's life support was switched off.  He died on 3 March and became the 96th victim of the Hillsborough disaster. A new chant was heard at football matches and the families of the deceased and Liverpool fans fought on to clear the names of their loved ones and the club itself.

I had relegated Hillsborough to a source of important judicial decisions then one day I was bought up sharp.

I was going out with a diehard Spurs fan when Jimmy McGovern's docu-drama, Hillsborough was repeated on ITV. When it was trailed on TV I told Rick I wasn't interested in watching and repeated the now notorious lies in the Sun newspaper.  He hit the roof.  It turned out that he had been in the Leppings Lane terraces during the FA Cup Semi-final between Tottenham Hotspur and Wolves in 1981 when the Spurs fans were involved in a non-fatal crush when too many fans were penned in. He felt deeply for the dead and injured Liverpool fans and the programme made him cry.

Last week I cried when I heard details of the Hillsborough Independent Panel's report in the event and learnt how 116 of the 164 police statements had been amended to remove or alter comments unfavourable to the South Yorkshire Police;  how the same process was applied to statements by South Yorkshire Ambulance Service; how there had been a deliberate campaign to deflect blame onto the fans when the "vast majority of the fans on the pitch assisted in rescuing and evacuating the injured and dead"*; and how 41 of the 96 victims could have been saved had there been a prompt and proper response by the emergency services.

The Panel completely vindicated the Liverpool fans and stated that the Hillsborough tragedy "should never have happened."

The then editor of the Sun has subsequently apologised for its headline and another one, "The Real Truth" has been printed;  the Football Association has apologised for choosing Hillsborough as the venue;  the South Yorkshire Police has apologised for the cover-up and David Cameron has apologised on behalf of the nation. Terraces have been replaced by all seater stadia but what about those who lied and smeared? What will happen to them?

Next week, I'll be back to local issues and will feature Shoreham Wordfest.

* Hillsborough Independent Panel Report, p.14 section 153.