No Hands To Hold and No Legs To Dance On

20 Jan 2009

The true life story of Louise Medus, the woman at the heart of the Thalidomide fight for justice, told with the help of Fleet Street veteran writer, Gill Swain has been published under the title  No Hands to Hold and No Legs to Dance On  (Accent).

While the battle for the compensation of Thalidomide victims was raging in the 1970s, Labour MP Jack Ashley asked in a parliamentary debate how Louise, then 11 years old, could look forward to  'laughing and loving with no hand to hold and no legs to dance on'.

This is a true life story of Louise Medus, the woman at the heart of the Thalidomide fight for justice, told with the help of Fleet Street veteran writer, Gill Swain. Louise was born without arms or legs, a victim of the appalling drug, Thalidomide.

Her traumatised parents took her straight from the maternity hospital to Chailey Heritage institution in East Sussex where she lived throughout her childhood. As her wealthy father, David Mason, led a high-profile campaign for proper compensation involving Louise meeting celebrities on television and being photographed smiling with her family, few people realised that she was not allowed to live with them at home.

After leaving Chailey and struggling to forge an independent life, Louise married John, a partially sighted man, and had two beautiful children. She was devastated when she discovered that he was having an affair with her carer. She also had to undergo a kidney transplant, the first Thalidomide victim to do so. She has worked, been an active disability rights campaigner and has now found new love with Darren, a fellow Thalidomide victim who was born without arms.

And in reply to Jack Ashley’s early fears, Louise says: 'Well, I have danced.  I have held hands with a lover. I have married and had my two wonderful children. I have worked, I have played, I have loved and been loved and I’ve been hurt. It’s a full life, just like anyone else’s but more precious to me in its ordinariness, perhaps, because that very normality has been a struggle to achieve.'

Reflections on the book by Louise Medus

The thalidomide story is unique in history - at least, one hopes so - and I feel it needs to be recorded how I and other Thalidomides were treated and brought up and how we have overcome the circumstances of our birth.

I don’t nurture a grievance against the Distillers Company, or Chemie Grumenthal which first invented thalidomide, but I am only human and I confess sometimes to feeling bitter that through the negligent and greedy actions of a handful of men, I lost out on being with my family when I was a child. And I felt bitter when my own children were small that I had not the arms to pick them up and cuddle them when they were crying. But as I look back over my life, I feel I have achieved what any other average person, disabled or able-bodied, generally achieves. I’m no different, I’m just getting on with my life, and I don’t want to lead it clouded by bitterness.

On my birth and the way I ended up in the Chailey Heritage school and hospital, I can see in hindsight that it was not my parents’ fault that they didn’t bond with me. It was the hospital regime of the time to assume a newly delivered mother was exhausted and to take the baby away, and to put disabled babies in homes. Now they realise how important it is for mother and child to be brought together straight away, probably even more so if there is a problem. Technology and the understanding of the human body and mind have come a long way since the 60s.

I have never blamed my mother for taking thalidomide; it was just one of those things. In fact, I feel sorry for my mum in the sense that the society of the time didn’t do her justice. She needed people around her to be strong, to support her as she faced, at 21, being a mother to a thalidomide baby, and society didn’t do that. Doctors and social workers were the worst culprits of all and I feel bitter that my mum was deprived of the support that she would be given if it happened now.

For most of my life I have felt humble and honoured to be my dad’s daughter because of all that he has done for me and the other Thalidomides. My family has benefited very much from his generosity; the kids have been on five-star holidays and luxury cruises, he has given them lavish presents and helped pay the school fees for two years, for which I am very grateful.

I feel that all the difficult stages we have gone through in our relationship have been caused by the fact that my birth was an injury to his sense of masculine pride, that he has a very Victorian, controlling, godfather-type personality and by the fact that we are so similar! He led the way in the fight for compensation and has given hope to people round the world that they might yet get something, and it was all done by this very stubborn, independent, hurt, man. So I am proud to be his daughter, even though we are now estranged.

On all the mauling about I was subjected to as I was growing up which I hated so much: the examinations and tests and photographs and medicals and the way we were expected to wear artificial legs and arms, I do realise they did it from an attitude of care. Chailey Heritage was renowned for the contraptions they invented and for their determination to make their charges independent. They were extremely good at it, but growing up in any institution or boarding school is hard whether you are able-bodied or disabled.

At the time I went to Chailey, attitudes to disabled people were changing, from those prevalent since Victorian times that they should be provided with a comfortable life in institutions separate and hidden from the rest of society, to the modern idea that they should be members of the normal community. Chailey was going through a steep learning curve when I was there and finding it really difficult to reconcile its beliefs and what it was founded for with the new ideas of the way it should operate in the present day.

You can teach children what order to use their cutlery in at the dinner table, but you can’t teach the unwritten rules of family life because they cannot be defined and written down, so that was where we lost out. On the positive side, it welded us together as a community and very successfully taught us to be independent and to speak our minds. Now Chailey has changed in many ways, particularly that they are more child-friendly and house people in small, family units.

Looking back on the time I left Chailey and started life on my own; I still cannot understand why my parents thought, because I would not do what they wanted me to, that they were not going to talk to me and I was not allowed to go home. I find it really shocking and heartbreaking even now when I think about the two days I was homeless in London and the lonely holidays I spent in that horrible YWCA.

Yet you learn from everything, and it did teach me to respect people on the streets. I can say I have been there, even for a short time. I know how it feels to be unwanted, not to have a place in the world, not to be able to say, ooh, I think I’ll sit down with a cup of tea and put my feet up. The only place you have is where you are standing at that moment.

Despite the way my marriage to John ended, meeting him was a godsend; I loved him very, very dearly and for many years we got on so well. In hindsight, maybe I should have listened to my instincts on the morning of my wedding day which were telling me, "Don’t get out of bed!" and not gone ahead. But I don’t regret it because I’ve got two wonderful children and I had good times as well as bad: after all, that’s what you have got to expect in marriage.

I am extremely proud of Emma and Jack, the way they manage having me as a mother. I know that in their eyes I am Mum; it doesn’t matter if you are spherical with pink spots, your kids love you for what you are. But I am aware that some people have picked on my kids because I am disabled and, now that I am with Darren, they have got two disabled parents instead of one. That can be awkward for them and I am proud of the way they cope.

I am proud that I have achieved a lot with young people through my talks in schools and being a leader of the Woodcraft Folk. The kids who have been members in Cheltenham in the 12 years I have been active have known me for what I am and consequently their attitudes to disabled people are more open. I feel that I have made youngsters realise that they must treat disabled people the way they would like to be treated themselves if one day they got run over by a bus and found themselves in a wheelchair. And that I have shown them that it would not change who they are, just what they are capable of doing.

Ever since I moved into my own home, I have had carers and I want to say a big thank you to all of them. If it hadn’t been for their assistance and their enthusiasm and their charm and their sense of humour – you need a sense of humour to be anywhere near me – and their tolerance, I would not be where I am today. I would not be living an independent life, bringing up my kids in a normal environment.

Reflecting on my second marriage, I confess that the fact my parents stuck to their resolve not to come to my wedding has changed my attitude to them. I feel that all my life I have been protecting my family, making excuses for them. I have mulled over why they did not bring me up themselves, said to myself it was because of society’s attitudes, it was not their fault, they were too young. But when a time came that was very important to me, that was supposed to be a joyful occasion bringing families together, my father showed his true colours.

It was instilled in me by my father that you should respect your parents, as I do, but surely somewhere along the line your parents have to respect you as an individual. I am not a child any more, and because they snubbed my wedding, the respect and loyalty I had for them has been damaged.

In future they will have to get in touch with me if they want contact. If they do, they will find the door is not completely closed against them. I know people don’t change, they are as they are, but there should always be hope. Darren says I am too soft but I say that if they want to push the door, they will find that it will swing open. It’s just that they might have to push it a bit harder than they’ve been used to up to now.

I have found my soul-mate in Darren. I should have listened to my heart when we were first together all those years ago but I am just thankful that we came together again. Yes, we have our differences and I am not the easiest person to live with. I can be very argumentative and hard to get on with but I think he will manage me. I hope so, anyway.

In the future I will continue being a Woodcraft leader, giving lectures and doing my campaigning work on behalf of thalidomide victims round the world and Darren and I want to travel. Next year we plan to celebrate our first anniversary by flying to New York then going on an Amtrak train to Washington.

Most importantly, though, Darren and I want to grow old together and to be there for our children. Our family is reaching a new stage as the children become adults and, because I have always found creating a normal family life difficult, I feel I have got more learning to do.

Through watching other families I have worked out the way I think parents should behave towards their adult children; I don’t want to be a control freak, I just want to be there for them and to support them in whatever they want to do. It is my next ambition – let’s see if I can achieve it!

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