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