FOUR FINGERS AND THIRTEEN TOES – A letter to young Susan
I am sure, from the traffic on my Facebook page, that episode 7 (series 6) of Call the Midwife, will live long in the memory of many viewers (old and young) as a masterclass in TV drama which was both informative and educational. Interspersed with tales of love and human frailty, we were invited to join the Mullucks family, and daughter Susan, on their journey along the rocky and fraught road of being a Thalidomide family.
What a strange title. To be called a Thalidomide family, was an appendage added to many families across the globe in the 1950’s and 60’s.
As we left the family, Susan was beginning her sometimes tortuous journey through a life that would be peppered with highs and lows; and it lead me to thinking about what advice (with the benefit of hindsight), could be given to a young (albeit fictional) Susan to help guide her on her life’s journey.
So here is my letter of advice. I hope you enjoy, and can relate to some of the things I have said …
Many thousands of people have followed your journey, and that of your family – as seen through the eyes of a television drama; and even though it is a drama, your story – which highlights the struggle that families with a Thalidomide impaired child endured – will live long and strong.
Your loving family – and especially your Mum Rhoda, will have a massive impact on how you live your life. You will rarely see your Mum crying with sadness or despair at how the system has treated you. But, what you will see is a strong and resilient woman, who will fight fiercely for you to live a life that is fulfilling and independent, being the life that should be lived by a loved daughter. When you are little she will dress you in pretty clothes, tie your hair with ribbon and you will have a lovely doll to play with. She will be so very proud of you.
When you were born into your fictional world, you had no idea how your presence would educate, inspire and inform many people worldwide, of a story that should never be forgotten. Some years ago, I was quoted in a television documentary saying, that in years to come the generation of Thalidomide children would be a “blip” in the history of mankind. Sadly that has not proved to be the case, and as I (and many of my Thalidomide friends will tell you) the greed of pharmaceutical companies in the period after the second World War, is still as prevalent in our “real” world, as it was in your fictional world.
As you grow, you will face many challenges whether in health, attitudes to disabled people, inaccessible buildings, transport, information and many other barriers. Your fictional Mum alluded to one of them – education – and yes, she was right. A good education will ultimately be essential for you. You will have to overcome many hurdles before you are able to enjoy a good education, but the rewards will be countless. You may struggle at first. There will be people who will say that you will be good for nothing, but you will prove them wrong. Your Thalidomide friends in the “real” world are testament to this.
Your Mum and Dad will not have an easy time. The further you venture from your close, local community, the harder things will be for you and for them. You will be stared at, you may be considered to be an object of pity and, in some cases, you will be positively vilified. You will learn to live with all these obstacles, and you will overcome them. You will ultimately grow into a fine young lady, who has an independent mind, and is not afraid to say what she means!
You will be no angel. Your Mum Rhoda, is a smoker and, I am sure, you will follow suit – even for a short while. As you get older, smoking will become something of an antisocial pastime. However, that will not happen before either your Mum or Dad (or perhaps both) will catch you having a sneaky cigarette with your siblings and friends at the local park. You will go underage drinking, and your friends will have to carry you up countless flights of stairs to inaccessible nightclubs. You’ll go to discos, and droll over the boys on the other side of the room. You will experience all the emotions of a non-disabled person. You will have the same likes and dislikes as a non-disabled person. But, most importantly, you will command the same respect as a non-disabled person. The barriers that you will face in your life will not be of your making. They will be attitudinal, structural or behavioural barriers that disable you … not your lack of arms and legs.
You will develop friendships with your Thalidomide impaired peers, that will be life-long friendships. You may even end up marrying young Philip, who you and your Mum met on your first visit to Roehampton. You will spend a lot of time in hospital, and you will yearn for your Mum and Dad, who may not be able to visit you as often as they would wish. Friends who have something in common with you, are a precious commodity. Hold them close. They will become your sounding board when times are hard, and they will be your closest allies when you need someone, other than your family, to fight your corner.
You may have a family … your fictional Mum and Dad will have been told all kinds of negative things about how your life is likely to play out, and whether you will form meaningful relationships and have children. Defy everyone and be your own person – Gay, straight, transgender or bisexual – do what you want and be proud of yourself.
I am sure that when you are old enough, you will decide not to be incarcerated in your prosthetic limbs. Well meaning professionals will try and guide you to a life of “normality” but in truth, there is no definition of “normal”. We are all different. Your Mum especially, will find comfort in you using your limbs. In her eyes, it will make you look as she really wants you to look. But beauty is in the eye of the beholder, and so when you do finally take that leap of faith, she will be right with you. She will understand and accept your decision as being what is right for you. You might like to know that the last time I wore my cosmetic legs was on my wedding day. That was almost 29 years ago, and they are now safely tucked away in the attic – still with the garter in place, as it was on that special day.
I hope you will, one day, be able to drive a car, and live independently, with the right level of support. The day you pass your driving test, will be one of the most liberating days of your life. You will be able to go to the shops, visit friends and family – and who knows, maybe even visit the nuns and midwives at Nonnatus House! You will meet all kinds of clever and creative people who will do their best to help you. Use their skills and ingenuity, but you will also learn that sometimes, it is the simplest of things that will make your life easier. You will soon find that there are a host of things you can do with various lengths of doweling rod (Believe me – I know!).
One of the hardest things you will have to endure is the loss of a loved one. When that happens you will take strength from the love that you were able to enjoy – for whatever period of time that happens to be. You may feel guilty that you, being you, placed a strain on that special person, which was just a little too much. That will not be the case, and in time, you will look back and cherish the time you enjoyed together. Those precious memories will last forever.
As you get older, things will become harder. It will take you longer to do the things that you once did without giving a second thought to danger or recklessness. You will mature in your thinking and will want to support your friends and other disabled people who were not quite as lucky as you.
You will come to appreciate that your impairments were created by a cruel twist of fate, arising from corporate greed that most of us find hard to understand. You may feel the need to seek out those who caused these terrible impairments. That search for justice may take many years, but you should not give up. In the end, good will prevail over evil.
You will learn that your parents carry an enormous burden from your birth. No matter how much you reassure them that they were not to blame for your situation, they will silently carry this responsibility with them to the end of their days.
Your story is unique, as are all our stories. In time, you may find writing about your life as a Thalidomide impaired person therapeutic. You may uncover hidden family secrets which reveal, that despite what you thought you knew, you really had no idea just how hard it was for your parents, in those early days, when there was no explanation for the reason you were born as you were.
Even though you are just a fictional child, you will have the responsibility of carrying the Thalidomide story – our story, and one which belongs to many thousands of people across the world, to future generations.
You may wonder how this will happen but in truth, it is quite simple. Your fictional character has the benefit of time travel. Your story comes to us in a time of twenty-four hour social media in a digital world. As a result, the horrors of Thalidomide will not – as I predicted (almost thirty years ago) be consigned to dusty history books. Our story will live on for as long as there is a desire to understand human impact stories, that are told in a sensitive and understanding manner; and in a way that educates and empowers, rather than isolates and segregates.
We may never know how your life actually develops; but for a short time, it has been a pleasure to welcome you as an addition to our Thalidomide family, in which you will always retain a special place.
With love always.