Archive for the ‘Thalidomide’ Category

FOUR FINGERS AND THIRTEEN TOES – “The stairway to heaven will soon have a ramp”

July 7, 2012

In my last Blog post, I told of the memorial service to be held on the 2nd July 2012 for Lord Jack Ashley.

I was honoured to be asked to speak at the memorial service – which was secular in nature.  As well as  Jack’s three daughters and nine grandchildren, the speakers included many who had known Jack personally from his political and campaigning work, as well as those who (like me) had been touched by his humanitarian work.

In accordance with his daughters’ wishes, the service was very much a celebration of a great life, and the accolades which were paid through the 90 minute service were moving, emotional and humorous in equal measure.

Ed Milliband spoke of his close association with the Ashley family, before inviting Neil Kinnock (Lord Kinnock of Bedwelty) to address the congregation.  Neil clearly had enormous affection and respect for Jack Ashley.  He spoke of Jack’s political career, and the impact he had on how Parliament perceived and worked with disabled politicians.

I was asked to tell the audience of how Jack had helped the Thalidomide cause through the use of Parliamentary procedure, and recall one of the occasions on which we had met – my ‘Abby Road’ moment.  David Livermore (former Chair of the RNID and Deafness Research UK) spoke of Jack’s work on issues surrounding deafness.

Agnes Fletcher of Disability Rights UK (and a former researcher to the All Party Disability Group) spoke of how many people would quake when they knew (in her words) “That Bloody Jack Ashley” was on the warpath.

Lord Alf Morris, a lifelong friend and political ally, read the poem “Count the Day Lost” by George Elliot.  Then we were told of the good work which Lord Jack did in the House of Lords by Bernard Donoughue (Lord Donoughue of Ashton) who, at the end of his address was moved to tears, as were many of us. Music was provided through the haunting lyrics of Ave Maria, which filled the room as the pure soprano voice of a young choir boy undoubtedly stretched way beyond the room in which we were gathered.

Fittingly, the service was brought to a conclusion by David Milliband who read the anonymous poem “Not how did he die, But how did he live?”

For those who are interested, the family are planning to make the transcript of the Speakers tributes available on the Lord Jack Ashley website – www.lordjackashley.co.uk

When I started researching Jack’s involvement in the Thalidomide scandal for my contribution to the service, I felt it was important to read his autobiography Act of Defiance.  It was really the only true way to appreciate just how strongly he felt about the issue.

It was on the 24th September 1972 that the Sunday Times published its front page lead headed “Our Thalidomide Children – A Cause for National Shame.”  The day of publication, was the day that Jack Ashley pledged his unequivocal support for our cause.  Working together with the Sunday Times team, Jack was able to use his knowledge of the Parliamentary system, and call upon friends and colleagues in the Palace of Westminster to seek to put the Thalidomide story firmly at the heart of British politics. 

Jack was more than well aware that if some action was not taken, the entrenched position adopted by Distillers would mean prolonged litigation – and this would only be to the detriment of Thalidomide children and their already hard pressed parents.

Jack was no stranger to negotiation, and he used his powers of persuasion to good effect.  On the 29th November 1972, he used time afforded to him by Harold Wilson, to address the House of Commons with a speech that resulted in his whole life being turned into a whirlwind of correspondence and interviews – raising the profile of the Thalidomide story to heights that our parents could only have dreamed of.

The help which Jack Ashley gave to Thalidomide children cannot be overstated.  Very few of us had the pleasure of meeting him, but we will be forever indebted to him for his commitment in righting one of the most unjustifiable wrongs in British legal history.

It was not until I finished reading Jack’s book that I realised how many parallels I enjoyed with such a fine family.  I share the same birthday as Jack – 6th December, we graduated from University at roughly the same age – He at 25 and I was 24.  Jack and Pauline raised a family of all girls; likewise, my parents raised an all-girl family.  Jack pledged his support for Thalidomide children on the 24th September 1972.  Sixteen years later on the 24th September 1988 I married my husband Stephen. And in 2003, Jack and his daughters lost a wonderful wife and mother in very similar and sudden circumstances to how I lost my mother in 1992.

Those parallels apart, there is one other strange coincidence which links Jack Ashley to the Thalidomide story, and goes further back than his great oration in 1972. 

During his early adult years, Jack was a furnace man at Bolton’s Copper Smelting Works in Widnes.  When Jack left his job to start on the long journey that would eventually lead him to Westminster, he would not have known the origins of Thalidomide.  Or that they would be so very close to his own industrial working class roots.  The town of Stolberg in Germany is well-known for its past history in smelting industries – including copper smelting.  It is, of course, also the town in which Chemie Grünenthal; the German manufacturers of Thalidomide were based, when Thalidomide wreaked so much havoc the world over.

In his autobiography, Jack talked candidly about what a profound effect the Thalidomide campaign had upon him.  It proved that disability was no disqualification to being a respected Parliamentarian, and that our plight had helped him cope with the loss of his hearing.

To Thalidomide impaired people in the UK, Jack Ashley was an icon of honesty and fairness, in a world where (even today) justice and decency are sometimes empty words. 

He will be remembered with great affection for his tireless work for Thalidomide-impaired people and their families throughout the country; as a fierce and effective champion of disability and human rights; and as a supporter of our aim to establish a lasting memorial to the Thalidomide story.

But above all, to us, Jack Ashley – Lord Jack Ashley – always was, and always will be, “A Man for all People.”

The final portion of the service was given over to Jack’s grandchildren, who read certain tributes which had been posted on the memorial site.  One of Jack’s young grandsons had the last word.  He spoke of one tribute that told of all the good work Jack had done for so many people.  The tribute concluded by saying that “the stairway to heaven will soon have a ramp!”   How fitting.  So my closing thought on this has to be … Let’s hope that Building Regulations at the Pearly Gates are not too strict, otherwise Part M may soon have some celestial input!

FOUR FINGERS AND THIRTEEN TOES – A JUBILEE CELEBRATION OF EPIC PROPORTIONS

June 7, 2012

It is rather a dismal wet day, and I have just finished watching the highlights of the Queens Diamond Jubilee – Digiboxes are such wonderful things – and what a celebration it was.

They demonstrated an outpouring of affection for Queen Elizabeth an icon of modern British history.  However, what many of the spectators in London over the last weekend will not have known is, that the weekend before, the Capital hosted another Jubilee celebration. 

At a hotel within the sight and sound of Big Ben, just close to Westminster Bridge and within shouting distance of Tower Bridge, an international gathering of Thalidomide people – the likes of which this country has not seen before, and is unlikely to see again – took place. 

It was 50 years ago on the 26th November 1961 that Distillers Company (Biochemicals) Limited withdrew the drug known the world over as Thalidomide.  It was another six months before the Government officially advised of the need to stop using Thalidomide.  That 50th anniversary passed during the weekend before the Diamond Jubilee, and was marked by a Convention which celebrated the achievements of Thalidomide people, and remembered those who did not survive what is undoubtedly the worse medical disaster of the 20th century.

I had wanted to describe this gathering as akin to a certain sporting event which is due to take place in the UK later this year.  Sadly copyright laws will prevent me from doing so, but let me just say this.  The coloured rings, which form the emblem to which I am referring, encompass continents around the world, and we were honoured to be part of another international event which (like that soon-to-be sporting spectacle) saw people from all corners of the globe descend on London for this unique occasion.

Unlike the Jubilee weekend, for our event, London was basking in the best temperatures of the year so far. The love, warmth and affection which was so apparent in that central London location, raised the temperature even further, and was an occasion that I would not have missed for the world.

Some of the delegates put us “Brits” to shame with their command of the English language, but the one single link which all Thalidomiders have, transcends language and cultural barriers.  I have no doubt it was probably as strange for our Japanese friends to meet European Thalidomiders as it was for us to see Thalidomide impaired people of far eastern origin.

It is almost impossible to describe how our international family interact.  However, if you just think of a relative or good friend, someone who you may not meet regularly, but when you do, you are able to take up where you left off, then that is just how it is.

It must have been very strange for the other guests in the hotel to see such a “motley” crew in various shapes and sizes arriving in at intervals throughout the first day, but if they were, there was no outward sign of curiosity.  We all met up for a drink and chat on Friday evening and then trundled off to bed – some of us earlier than others (!) in anticipation of a very full day of presentations due to start at 9.15am prompt the following day.

In our bedroom, getting up in time for breakfast and registration, was rather like school sports day.  Here’s a little run through …

On your marks, get set …

  • School bell, or rather a VERY loud alarm sounded at 4am.
  • Sack race – with a difference … Steve trying to extricate himself from his duvet, in darkness.
  • Obstacle race … Bed to bathroom.  Trying to avoid a pair of artificial legs strategically placed at the bottom of the bed, and then CRASH straight into the bathroom door.
  • 10 minute swim in the shower and slalom onto the shower seat, finishing with a mountain decent onto the loo.
  • Sprint to the finishing line with the classic two pronged attack on the opposition – one involves a shave and the other … well, let’s just say the activity beings with an “s” !
  • Onto the relay.  The bathroom baton needed to be passed to a rather bleary eyed female competitor who needed more than just words of encouragement to get started.  I’m sure many of you can remember your childhood seaside holidays, and the infamous donkey ride. Remember when the donkey never did what it was supposed to do until you prodded it with something sharp.  The sharp object in this instance was a chubby little finger that eventually had the desired effect, of stirring me from my less than athletic slumber.
  • Next the Rosie Moriarty-Simmonds triathlon … The three main events involved the bathroom event, dressage (actually dressing up) and hair!  I think it is fair to say I wasn’t in the market for breaking any world records that day, and Dame Tanni Grey-Thompson’s title as wheelchair athletics supremo still remains safely intact!
  • We made the finishing line with a loved-up teenager in tow just as final orders for breakfast were being taken.

After breakfast, we then moved onto the more serious part of a marathon conference day.

The stage had been set during the previous evening.  Art and photographic displays had been erected, which provided an interesting and thoughtful backdrop to the coffee and pastries … Yummy, especially as the last drop of coffee at breakfast had been gulped down so fast I could have won the marathon dribbling competition hands down .. or even four fingers down!

Rosaleen Moriarty-Simmonds leading a tribute to the late Lord Jack Ashley

The first session of the day, involved a short tribute to Lord Jack Ashley, a champion of the cause of Thalidomide children in Parliament in the 1970’s.  Sadly Jack had succumbed to illness only a month before the event, and passed away surrounded by the family who so clearly loved him.  We were honoured to welcome Jack’s daughter Jane, to receive the gift which was to have been presented to Lord Ashley had he survived to join us.  I was honoured to have been asked to make the tribute and in describing Lord Ashley as “A man for all People” I presented Jane with a suitably inscribed gift.  In reply, Jane paid a moving tribute to her father, and it would have taken a hard-hearted person not to be moved by this opening to such a special event.

We were thereafter treated to differing presentations from many varied and diverse speakers. 

Professor Janet McCredie explained how she had concluded that our damaged limbs and organs, were the result of Thalidomide damaging our nervous system.  So I am now quite pleased to liken myself to the little Star Wars robot C3PO.  From now on, I will be forever categorised as C5C6C7!

Then Lord Alf Morris spoke of his work with Jack Ashley.  He told how the issue of Thalidomide shaped much of the disability legislation we have in the UK today.  Some years ago, I had the pleasure of interviewing Lord Morris for a BBC Radio Wales documentary.  The best way I can describe Alf Morris, is the epitome of a special Grandfather – Kindly, gently spoken, but even with advancing years, someone who can hold the authority of a conference room, just as he did in the House of Commons when he was an MP.

The mood was lightened, by our next speaker.  Sir Harold Evans – former editor of the Sunday Times.  He spoke with passion of how the Sunday Times had bucked the trend and brought the issue of Thalidomide to a wider audience, and effectively used the power of the press to shame Distillers into action when the ongoing litigation by parents, prevented the shameful immorality of Distillers actions being laid bare for the public to see.  With those twinkling blue eyes, and mischievous devil-may-care approach, it is not difficult to see how Sir Harry was able to garner such support for the Thalidomide story.

Sir Harold Evans and Rosie getting acquainted!

Our next speaker was Sue Kent.  Her father Peter Carter was one of the founders of our current Thalidomide Society.  In a moving historical tribute, she outlined how her father and others had worked during the austerity of the early 1960’s to establish a group that would eventually provide the framework for the Thalidomide Society of today.  Sue was able to show us images of parents at first meetings; examples of gala events – to which Lady Hoare had lent her support – in order to raise much needed funds to support our parents during the early years.  She paid tribute to many significant members of the Society who had steered our Organisation through changing times, and explained how the unifying force of our parents had worked locally and nationally to establish a network of support for Thalidomide families the length of the country.

It was now time for lunch, and so I will take you back to my sporting theme …

  • The first event was the classic game of how many people you can fit into a confined space.  The confined space is usually a Mini, but in this instance it was the lift.  I reckon four wheelchair users of varying sizes and three much squashed Thalidomiders was the record, but of course, that is unless you know better!
  • The main lunch time experience was how you fit three courses into a very small amount of time.  The sucking liquid through a straw incident produced some interesting results and the egg and spoon race has now been surpassed by a new event.  The Vol au vent circle chase is now a must for all Thalidomide related gatherings.  Why is it, when you chase a vol au vent around a plate, for some inexplicable reason of science, it always ends up at the furthest point away from the person with the shortest of short arms!  If the restaurant staff were perplexed by this new sporting activity, they were very discreet in their interest, which doubtless was a source of enormous humour in the staff room at the hotel.
  • The final round of coffee straw slurping and the 100 metre dash to the accessible loo, made a fitting end to another sporting extravaganza!

But enough joviality, the afternoon session was about to commence. 

The first speaker of the afternoon was Doctor Martin Johnson, Director of the Thalidomide Trust.  He spoke of the stark reality of how Thalidomide had taken (or potentially taken) the right to life.  Martin outlined how research had shown that many Thalidomide babies were left to die on the floor of hospital delivery rooms and relayed harrowing accounts of how Thalidomiders, both here in the UK and abroad, had been subject to untold horrors and abuse, simply because of their Thalidomide impairments.  Most of the stories had uplifting and happy endings but the reality nevertheless remained, that some of our number had suffered hardship, arising from Thalidomide, which, I hope in our modern world, no-one will ever have to witness again.  It is estimated that many thousands of babies were left to die – sometimes because of the panic that ensued after the delivery of the baby concerned.  It is my guess that we will never know the true extent of the Thalidomide tragedy, and that is why the issue of our Thalidomide Memorial is so important.

The next session of the afternoon, was a presentation of how it is proposed to develop an oral history of Thalidomide.  Anne Borsay from Swansea University and Ruth Blue from the Wellcome Trust, explained how the oral history would be documented.  We were then treated to two short films showing the “children” as were then, being fitted with those cumbersome artificial limbs that, as I have said in my book, were (for the majority of us) completely useless.  In one of the films, a little boy was fitted with gas powered arms, just like mine.  His well-meaning parents encouraged him to use the limbs.  However, when he was playing with his trike, and needed to make an adjustment to the pedals, what did he do?  Yes, you guessed it … he used his feet!  Need I say more?  The second film was narrated by Brigadier George Chatterton.  What a hoot … we saw friends that we haven’t seen for years.  I’d like to say we haven’t changed a bit, but that really would be stretching things!  The film showed a group of little kids just having fun, doing kiddy things in childlike ways.  One little chap sang a song whilst balancing on a gym bench.  I’m not sure if he went on to become an opera singer, but that nostalgic trip down memory lane was a real tonic.

I was asked to speak again at the final session.  My presentation was all about our Thalidomide Memorial Campaign.  We have titled the Memorial Campaign “To Remember is to Care” and that is exactly what we did.  As my presentation drew to a close, the audience was invited to observe a two minute silence, to remember those who did not survive this dreadful medical atrocity, and to remember parents, partners and children who have played such a pivotal role in our story.  As one of the other members of the campaign team, Steve had written a poem which was screened during the silence.  I have, with Steve’s permission, reprinted it here:

TO REMEMBER IS TO CARE

A time of greed,

No thought for the unborn child,

Came abhorrent pharmacists

With evil, impossible to hide.

 

A tiny pill, lives broken and shattered,

Hearts and emotions, broken and battered.

A twist of fate, of which no-one could foretell,

For so many, a vast living hell.

 

So came those babies;

Helpless, destined to confound.

To differing families,

In wealth and status, no limits were found.

 

Their lives, so varied, diverse and proud,

The children of Thalidomide,

Their determination?

Unbowed.

 

Over the years

Life takes its toll.

Tragedy and sadness

Are bound to unfold.

 

The loss of a loved one,

Is the hardest to bear.

We remember our parents

For their help, love and care.

 

Remember a brother, sister, daughter and son,

With the finest of memories, each and every one.

Remember a partner, soul mate and a child’s parent,

Times of happiness, frustration, despair and contentment.

 

For the children whose passing

Was hardly acknowledged,

We remember them all

And give them this promise.

 

So may dim the memory,

In that marching passage of time,

But now in this gathering and beyond, they

In our thoughts and prayers will remain.

 

We remember with pride,

Achievements gained against the tide,

But will not forget those

Who have struggled with life’s ride.

 

And when we encounter

People who still stand and stare,

Think of those who have left us.

Be proud.

 

To Remember is to Care.

Ó Stephen Simmonds 2012

[Please note that this poem was written specifically for the UK Thalidomide Memorial Campaign.  If for some reason you should reprint the poem, post it in an article, newsletter, journal, blog or web page, please do not forget to credit the original source ‘© Stephen Simmonds’ and its relation to our campaign! Thank you. Rosaleen Moriarty-Simmonds.]

Fittingly, the final moment of the event went to Louise Medus-Mansell, who with her husband Darren and a small committee (ably supported by the Thalidomide Society) had organised the day.  Rightly, Louise received an ovation from the audience, and the day’s events concluded to the classic Queen anthem “We are the Champions”.  And indeed we are.

But there was one final sporting event for which we had to prepare.  A sumptuous candle lit gala dinner, with entertainment provided by the Bootleg Beatles.  Having poured me into my evening dress, and carried out a make-up job that the producers of Pimp My Ride UK would be proud of, my lovely husband, and James (my Spencer – Made in Chelsea look-a-like son) all trundled off to the drinks reception.  We mingled with friends from all over the world, and marvelled at the artwork and photographs that showed just how far we have come in 50 years.

The Bootleg Beatles did a session which took us all back to wonky fringes and hand knitted cardigans!  But I have to leave you with one final story from the night.  When the original “Fab four” appeared at the Royal Variety performance, John Lennon famously suggested that the attendees in the expensive seats rattle their jewellery and those in the cheap seats clap their hands.  Well, in the true spirit of Beatlism, our Bootleg fab four tried to urge the revellers on the dance floor to “clap their hands” … I think the absence of clapping probably should have told them something … But still, the pun was “armless enough”!  I guess if they ever play a gig with over 200 Thalidomiders again, they may just change the script, and ask the audience to “flap their pandies”.  Let’s hope so!

From a Man for all People, to Remembering that Caring is a vital quality in life, and everything in between, our weekend had it all.  

Both our Jubilee event and the royal spectacle were special in their own way.  Rather like Her Majesty, the memories of both events will stay with me for many years.  But the memories and friendships which were forged during our international event mean these three words – Swifter, Higher, Stronger – will have a special and deep significance long after the world’s greatest sporting event has left our shores …

Those three words aptly summarise the strength of our unique international family, and for as long as we are able, we owe it those who cannot, to carry the torch of our significant story into the future – and long may we do so.

FOUR FINGERS AND THIRTEEN TOES — WHEN IS AN APOLOGY NOT AN APOLOGY?

January 15, 2010

The answer is quite simple – when it comes in the form of an Oral Statement from a Minister of State of the current British Government.

Yesterday, 14th January 2010, was billed as the day Thalidomide impaired people in this country would hear the word “sorry”.  I, like many others, watched the Health Minister Mike O’Brien make the Oral Statement to an almost empty Chamber, which was sadly bereft of any political clout.  There was no Prime Minister to apologise, no Leader of the Opposition, who would set aside party political differences, to agree with the Prime Minister that for nearly five decades successive Governments, had “fudged” the issue of accepting the part played by previous administrations in the Thalidomide saga.  I had looked forward to applauding the show of unity from two senior political leaders, who both know, first hand, the responsibilities of caring for a disabled child.  Perhaps more importantly, I eagerly awaited a statement from the Prime Minister who is himself a disabled person. 

Instead, what was on offer was a statement of “sincere regret and deep sympathy” from an MP who is not even a member of the Cabinet.

You may wonder why I am so incensed … Sadly; a Statement of regret is not – by any stretch of the imagination – an apology.

An apology includes an admission of error or wrongdoing.  Regret merely expresses a desire that the event had not happened, without any acceptance of wrongdoing.

This is what was said … “The Government wishes to express its sincere regret and deep sympathy for the injury and suffering endured by all those affected when expectant mothers took the drug thalidomide between 1958 and 1961 … We acknowledge both the physical hardship and the emotional difficulties that have faced both the children affected and their families as a result of this drug, and the challenges that many continue to endure, often on a daily basis.”

It would only have taken a five letter word beginning with “s” and ending with “y” to have brought closure for many, in what was the worst medical disaster ever to be seen in Great Britain and the Commonwealth.

In the statement there was no admission that Government had supported Distillers in establishing a Biochemicals division during the early years of World War II.  There was no acknowledgement that, at the very least, a public enquiry should have been held into this tragedy, and most importantly, there was no acceptance of liability that Governmental and administrative failures allowed Thalidomide to wreak havoc with so many lives over a sustained period of time.

Wouldn’t it have been comforting to the parents of Thalidomide impaired children, to have been afforded the sincerity given to the Ghurkha veterans, after the campaign by Joanna Lumley for proper recognition of their plight.  Wouldn’t it have been appropriate for Government to acknowledge that our parents were placed in an impossible situation because of legal and other issues during the early years of the fight for compensation.   But then, maybe that would have been too much to ask. 

When my mother died at the young age of 49 years, I firmly believed that the strain of looking after such a severely disabled child took its toll on her health.  I know I am not alone when I say this.  There are many Thalidomide impaired people who have lost parents in circumstances like mine.  For this reason alone, it would have been of enormous comfort to us to hear a Governmental acknowledgement of responsibility.

When news broke of the agreement of further funding and of the pending formal statement, media hype was such that even the Sunday Times (so pivotal in the 1970’s fight and more recently during this current campaign) was expecting the Prime Minister to make the Statement.  However, what we got was a Minister who, at times, seemed ill at ease with the Statement he was making and spent much of his response time paying tribute to everyone involved in the negotiation process.  I am pleased there was an acknowledgement of the good work done by Lords Morris and Ashley, and of course, we cannot underestimate the contribution made by Harold Evans and his team at the Sunday Times.  However, not once did the Minister refer directly to the people at the forefront of the fight back in the 1960’s and 70’s – our parents. 

I have to make it clear that I commend the work of the present campaigners, and their commitment to the cause cannot be underestimated.  However, there was, I think, a lack of understanding that much of what needed to be said, should have been addressed to our parents.  For me, the anticipated apology was for them; as much as it was for us.

As and when the technicalities of how the additional funding will be managed are made known, it will of course make life a little easier.  I am however uncomfortable with the fact that the Minister referred simply to “Thalidomiders in England.”  The Thalidomide issue is a country-wide issue, and should have been addressed as such.  We Thalidomide impaired people in Wales, Scotland and Northern Ireland (not forgetting those in other Commonwealth countries) are right to feel a little aggrieved at being excluded from the “evaluation” of how our health needs “can be best met in the longer term.”

Also, the public should be under no illusion that the 466 beneficiaries of this additional money will not become ultra-rich.  Put in context, £20 million will be distributed, at the discretion of the Thalidomide Trust.  By comparison, we should remember that during the latter months of last year, £90 million was shared between eight people in a massive lottery win.  Media headlines like “set for a deal” or “£20 million payout” are misleading and is not helpful in allowing us to continue the low-key life that most of us seek.  Friends may perceive us in a different light and people in the supermarket may look at us differently.  But what they forget is that the Statement of Regret or the additional funding does not change the simple fact, that we have very unique impairments that no amount of money or support can completely obviate.

During yesterday, the telephone at home did not stop ringing.  I was invited to comment on the so-called apology and make a statement for public consumption.  During these interviews, I expressed sadness that the much anticipated apology had not materialised.  Even having had the chance to now fully digest the Minister’s Statement I have not changed my view. 

As I left the BBC studios after one such interview, I noticed a small Robin perched on the wall just near to my car.  The Robin was my Mum’s favourite bird.  Its bright cheery red breast still reminds so much of her lovely warm personality.  As I passed, the bird flew away, and it left me wondering whether this was my Mum’s way of saying “No worries, it will be alright in the end.”  I am sure it will be, but I fear the opportunity for that long awaited and genuine, heart-felt apology has now passed, and such an opportunity will not arise again.

FOUR FINGERS AND THIRTEEN TOES – GADGETS AND GISMOS

September 16, 2009

In our house, the end of August traditionally heralds the arrival of a time to have a real good sort out.  That probably applies to most households anywhere in the world where there are kids getting ready to start the new school year.  But this August was a little bit different as James had decided it was time to have a good bedroom clearout.  You know, the kind of mass clearance that we do when we leave one part of our lives and move onto a new chapter.

The time had come to find more space for the trendy new clothes that had been bought over the holidays, and ditch the torn and battered posters in favour of new ones ranging from Sly Stallone to The Stig … You get the drift, the move from childhood to entrenched teenager!!

The Bank Holiday weekend dawned.  The weather was … wet as usual, and with gusto I sent Steve (my lovely hubby) into the abyss that had hitherto passed for the corner wardrobe in James’ bedroom.  Me, I don’t do cleaning! The little matter of four fingers and thirteen toes gives me a great escape clause.  However, I am a great believer in delegation and I am a superb supervisor!! 

James also opted out of the job in hand.  He had decided the time was right to accept an invitation to  spend the night (with a couple of mates) in a friends’ garden shed, that has recently been renovated “Extreme Makeover” style to accommodate a flat screen TV, a sofa, a mattress and a fridge (soft drinks only of course!)

So, back to the bedroom.  Out came the primary school books.  They were duly boxed up with the efficiency that can only come from a Solicitor archiving his files!!  Next out, came the Key Stage 3 books.  It only seemed like yesterday that my “baby” had moved from primary school to high school, and now his books were being crated up in the hope that these manuscripts would at some stage in the future open the memory to a time when innocence was bliss.  

Then came the real heart-wrencher … the baby stuff.  First the cuddlies – “Duck Duck” (he always went to nursery with James), “Dotty” (the stuffed cat that came from a great-grandparent) and all manner of other wonderful reminders of a magical time that I have chronicled in my book.

Then, we came across the gadgets and gismos that were acquired to make life easier for me in caring for James.  There was the baby grow that we bought for James to wear home from hospital with easy open poppers, that made getting him dressed and undressed as uncomplicated as possible.  But then the Pièce de résistance emerged.  A retractable dog lead that I used to extend the standard length walking reigns that you get for your inquisitive toddler.  I just clipped the lead onto the reigns and hey-presto, you have a child who thinks he’s walking ahead of the pack, but when danger strikes – just one flick of a switch and the toddler comes flying back – rather like superman (but, please be assured that no child was harmed during the use of this piece of equipment!!).  However, if I had a pound for every passer-by who asked whether he was pulling me along, I’d be rich woman!!!

For disabled people, gadgets of any description can really make life easier.  Technical stuff, like voice activated software, that I now use on my computer has enhanced the quality of my working life so much.  It is sometimes hard to remember how I managed before, tapping away at the keyboard with two sticks, one tucked under each arm.  And, prior to that, scribbled writing with pen clenched between two fingers and my chin pressed down on the top of the pen for stability.

Similarly, those little lengths of doweling rod that I have strategically placed around the house still come into their own for pushing things back or pulling them closer.  I have a helping hand for picking things up that have been dropped on the floor — although don’t expect to be able to pick up anything heavier than a pen or a piece of paper. 

Whenever we go on day trips, holidays or to visit people with inaccessible homes, we take a folding portable ramp.  There are all sorts of gadgets and gizmos in our kitchen from battery operated can openers to electric knives.  The environmental control system is brilliant at being able to turn lights and other electronic equipment on and off, and of course the automatic front door opening system, which can be used either from an intercom or key fob, is essential.

But you know you are getting older when the gadgets you need are more functional than Hi-tech. 

Take the loo for example.  When it’s a struggle to get from your wheelchair to the toilet seat and back again, you know it’s time for action. 

So, how do you remedy such a delicate dilemma?  Well, the first thing you do is telephone your friendly Clos-o-Mat man.  He’s the guy who comes every now and again to service the shower toilet (it’s like a toilet with bidet combined).  When you finally get hold of him, you tell him that you need a higher plinth. 

After his visit, the result is a toilet that looks rather like a porcelain birthday cake.  Now, when I sit on the loo, I look like one of those figurines you see twirling around in the window of the local jewellers shop.  Steve and James think it’s hilarious.  But no matter, I now get on and off the loo with the grace and elegance of a ballerina!!

As a child and into my early teens I spent many hours in hospitals and rehabilitation units experimenting with all sorts of aids and equipment, which I was constantly told would make life easier and enable me to be independent!  Some of them, like my electric wheelchair, were brilliant and liberating.  Others were hideous, useless and impossible to use — a “bottom wiper” springs to mind! 

Picture the scene.  My legs end way above the average persons’ knees and I have two fingers protruding from each shoulder.  The bottom wiper was basically a plastic coated length of thick wire that had been bent at one end to make a loop so you could hold it.  The other end was coiled around a sponge.  I was expected to be able to tuck some toilet paper around the sponge – the toilet roll being out of reach seemed to have evaded the very keen occupational therapist – then wipe my derrière whilst I balanced on my ribs, on the arm of my wheelchair and with my dress held up in my teeth, all at the same time.  Now you know why I opted for a Clos-o-Mat!!!

I guess the moral of the story is this.  Over the years, the way I’ve had to do things has evolved.  A wacky approach to everyday life is part and parcel of being a disabled person.  No matter how many fingers and toes you have, everything is possible with some lateral thinking.  There really is nothing to be gained by worrying about how other people perceive you.  It is best to just get on and do what you do, as best you can.

FOUR FINGERS AND THIRTEEN TOES – A POISON CHALACE

August 26, 2009

Television drama can, by its very nature, be a vehicle to relay a message to the viewing public on an issue which is high in social, moral or political content.  And so I have no doubt, that many Thalidomide impaired people settled down to watch Holby City on BBC1 last night (25th August 09) to see how using Thalidomide for medical purposes would be portrayed during primetime TV.

Mat Fraser, an accomplished actor in his own right, and also one of my many Thalidomide impaired friends, gave a good convincing performance of a patient diagnosed with Multiple Myeloma – a terminal cancer with limited treatments being available.  Having been diagnosed with Myeloma he was offered the choice of palliative care or a more radical treatment which, whilst not curing his condition, could prolong his life by possibly 18 months.  The irony in this case was the patient was a Thalidomide man in his late 40’s being offered the chance of “extra-time” by taking a concoction of drugs including Thalidomide – the very drug that had caused so much suffering during his lifetime.

The character had enjoyed a good life despite his impairment, and recently discovered he was the father of a child by his Vietnamese girlfriend.  He was therefore presented with a dilemma as to whether he accepted his condition or sought to prolong his life in order to spend time with his son before his death.  

What concerns me for viewers, who have not been affected by the Thalidomide tragedy, is that the outcome of the programme will be that far more people with Myeloma and possibly other conditions will now misguidedly demand Thalidomide.

Thalidomide is currently licensed for the treatment of Multiple Myeloma, but is still being prescribed on a “named patient” basis and for research purposes for other conditions.  The manufacturers continue to work on its development, and of course in the process make many millions of pounds from striving to regenerate what was commonly known as a ‘wonder drug’.

During the programme, the script writers touched upon the havoc Thalidomide wreaked in the 1960’s.  Mat’s character relayed his desire to just walk down the street – anonymously – and without people staring at him.  Had they been brave enough, I think the script writers could have gone much further… Throughout the world there are thousands of Thalidomide impaired people, not only of my generation, but also of the so-called second generation in South America, who struggle to cope with their Thalidomide impairments.  Chronic pain, depression and bodies ageing at a far greater rate than our peers, are just some of the problems that we face on a daily basis.

But I appreciate that patient storylines are there to link the continuing saga of the medical personnel at Holby, which run through the whole of the series and can only be limited in what they cover.

In 1999, I attended a convention organised by the Thalidomide Victims Association of Canada.  During the convention, one of the Doctors who spoke bravely told us how he foresaw a situation where Thalidomide impaired people might benefit from the use of Thalidomide for cancers and other conditions in later life.  

And so it was that last night’s programme became a case of drama meeting fact, which mirrors much of what we see on television.  The dilemma of health over risk is one which presents itself on a daily basis to those working in the field of medicine and medical research.  It was not an easy subject to tackle, and for me the jury is still out as to whether the BBC did justice to this contentious issue, or not.

One of the closing images from programme showed the Thalidomide man pondering over whether to take the drug.  In the end, his decision was made on the basis that by taking the drug he would be able to see his son, and some of you reading this blog may consider that to be the right decision. 

Having lived with my Thalidomide impairment, and seen the regeneration of Thalidomide gather pace over the last decade, I am still not convinced, that given its past, it is right for the drug to be used at all.

If science deems that Thalidomide should be used for patient care, then unlike the patient on Holby City who was just offered a pamphlet about the drug, those who are either advised or are considering using Thalidomide should remember its history and be told of its known toxicity so that they can make an informed choice on usage.

(More information on this issue can be found in Four Fingers and Thirteen Toes by Rosaleen Moriarty-Simmonds)

FOUR FINGERS AND THIRTEEN TOES – HOLIDAY PLEASURE DELIVERS CHINESE SURPRISE

August 22, 2009

So, the holiday season is about half way through, the weather has not been great but we can console ourselves with the knowledge that Christmas is about 19 weeks away – what a thought!

Generally, holidays allow you to look forward to spending some time with your family, and doing things together that you don’t usually have time for at other more hectic times of the year.  And for our family it is no different. 

Our holiday destination this year was agreed as being Jersey in the Channel Islands.  So, having packed and left instructions for family members looking after the house, we set off on our annual sojourn for 12 nights of domestic bliss!!

Our journey was pretty stress-free, we got the car onto the catamaran without loosing the exhaust, the lift from the car deck to the passenger deck was working and I entertained myself with some duty-free shopping to pass the four hour journey in search of that illusive yellow ball that we sometimes see in the skies above the UK.

Jersey holds really good holiday memories for me.  I went there on numerous occasions when I was a teenager and later as a wannabe independent young adult.  When James was born, we took him to the Island for his first proper “bucket and spade” holiday and he had a ball.

Over the years the Island has changed, and is now far more ‘user friendly’ for disabled people.  All of the attractions and places of interest that we visited were fully accessible, and as we all have an interest in history, and particularly the second world war, we learnt a great deal about the historic aspects of our destination that sometimes you can overlook when you go on holiday.

We also enjoy the opportunity to spend some time reading, but Stephen forgot his book.  As a trip to Waterstones was planned anyway for me to do some book marketing, Stephen and James browsed the fiction shelves whilst I had a meeting with the Manager. I’m pleased to say that the availability of “Four Fingers and Thirteen Toes” now extends to Jersey.

Being the parent of a teenager presents its own particular challenges in the vein of holiday entertainment.  What you do has to hold the attention of an apprentice “Kevin”.  It was also James’s pending fourteenth birthday, which just happened to fall about midway through our break.  James was obviously excited … “I don’t want anyone to know it’s my birthday … Grandma hasn’t arranged a birthday cake at breakfast has she? … And “don’t you dare sing happy birthday to me within earshot of anyone.” 

OK, it was hard, my ‘baby boy’ is growing up; but this proud Mum wanted everyone to know it was his birthday.  So we rounded James’s day off with a visit to the Noble House Chinese Restaurant just outside St. Helier. 

The last time we were in Jersey, we had dined at the restaurant and it had ample space for two wheelchair users, and so when Steve booked the table, he didn’t even think to mention the fact.  Needless to say when we arrived at the restaurant, the Maitre D’ was rather surprised.  It transpired that there were a number of educational and corporate seminars taking place on the Island during our stay, and one such group had a booking for around twenty five people.  The problem was that the restaurant had recently undergone renovations and was partly divided into small booths that were no good for us.

However, a table was laid for us in an inconspicuous corner of the main dining area, and we had a lovely evening tucking into some of the finest Chinese food that we have tasted for a long time.

Now, have you ever been in a room and you just can’t help but overhear the conversations that are going on around you?  Sometimes it’s idle curiosity, and sometimes you just connect with certain words and phrases that those in the room are using.  As I love to watch people, I quickly gleaned that the party in the restaurant were midwives on the Island for a midwifery convention.  I could hear a couple of welsh voices in the group, and not being one to let an opportunity slip away, I decided that this may well be a captive audience who might be interested in my book.

Having finished our meal, James and Steve left me to my own devices.  Armed with a few business cards promoting “Four Fingers and Thirteen Toes” I approached the table.  In circumstances like this, you never really know whether you will be greeted with indifference or genuine interest.  I am pleased to say I was greeted with a real genuine interest that filled the time for these midwives between hors d’oeuvres and main course.

On chatting to them, it was clear that the age range around the table was considerable – from those experienced midwives to those just starting out on a promising and worthwhile career.  We talked about the inevitable impact of Thalidomide and on how those in the medical profession help disabled people in their quest to have children, and then came a quite astonishing coincidence.

The lady who was in charge of organising the evening indicated that she had practiced in Manchester and had delivered the first baby to be born to one of the most severely disabled Thalidomide impaired people.  The mother in question was none other than one of my oldest and closest friends Janette Cooke (nee Mottley).  For those of you who have read my book, you will recall that Janette passed away shortly after her 40th birthday, but Janette’s successful delivery of her baby Kelly-Ann was in so many ways the catalyst for others, including me, to be given the chance of motherhood.

So with the holiday over, all the laundry done, and a mountain of work to catch up on, I’m now back at my desk, and of all the 100’s of emails in my inbox there was one that caught my eye.  It was promoting the TV appearance of another good Thalidomide impaired friend of mine – Mat Fraser.

For those of you reading this blog and having an interest in TV medical drama, can I recommend some viewing for you this week.  Watch out for Holby City on BBC1 this coming Tuesday, 25th August at 8pm.  It is running a storyline about a Thalidomide man who has cancer.  Nothing special about the cancer story line, but the irony in this story is that the patient is asked to consider taking Thalidomide to prolong his life.  I hold strong views on the continued use of Thalidomide which can be found in “Four Fingers and Thirteen Toes”. 

I don’t know how the Holby storyline progresses, but it will be interesting to see how this contentious issue is dealt with during prime time TV.  Let’s hope that it balances fairly the rights and wrongs of using the drug, and it allows the viewer to make up their own mind on whether the benefit of using Thalidomide is outweighed by the risk of exposure.  We shall just have to wait and see.