resources
No hand to hold & no legs to dance on — a Thalidomide survivor’s story
Reesha Armstead, from Leicestershire, UK, reviews No hand to hold & no legs to dance on — a Thalidomide survivor’s story by Louise Medus. 2009, Accent Press. ISBN 978 1906373573. Price: £9.99. Available from www.accentpress.co.uk.
Also in this issue, Louise talks about her experiences as a disabled parent.
This is a book which shows utter strength against adversity. Louise was born in 1962 with shortened limbs as a result of her mother taking the drug Thalidomide. Her book takes an honest look at the impact this drug had on those who were disabled by it, their families and the professionals who worked with them.
Despite her parents taking the decision not to have their daughter live at home, Louise’s father was a force to be reckoned with in leading the campaign for compensation for those affected by Thalidomide. He stood alone against the drug company, the legal system and even the parents of other Thalidomide children and succeeded in obtaining the maximum possible award which was put into trust for distribution among its beneficiaries.
The irony for Louise, however, is that she found herself in a situation comparable to that of many disabled people. Some parents, who are, understandably, deeply traumatised by their children’s births and disabilities, will fight tooth and nail to ensure that the future is secured for them into adulthood, yet can find it difficult to maintain a bond or relationship which offers mutual support once independence has been achieved.
Louise felt abandoned by her family and spent her childhood at a residential school in Sussex, living an institutional life during her most formative years. Here, along with her peers, she was constantly observed and scrutinised as professionals tried to comprehend the impact that Thalidomide was having on the children in their care. The emphasis on independence was often at the cost of comfort and of childhood, and Louise’s accounts of this time strongly convey the strategies she developed in coping with this. She describes the ‘cupboard’ she built for herself, in which to lock away her painful experiences and unbearable emotions. This put her in good stead for adulthood and all that life threw at her.
After finding herself homeless, Louise fought to obtain housing and personal assistance. She later married and had two children. Her joy at having her babies shines through but she again found herself at the mercy of those around her who doubted her abilities and thought they knew best. Further heartbreak was caused by the eventual breakdown of her marriage. Her fierce protectiveness of finding ways to care for her children by herself was borne from her own feelings of betrayal and rejection.
Like many disabled parents, Louise is creative and adaptable and provides constancy for her children. She has put all her energies into campaigning on behalf of disabled people for better access and in educating children through her work. She has recently married again and found happiness once more.
This book is extremely well written and, as a reader, you get to know Louise and feel motivated by her. Many disabled parents will relate to her struggle to obtain respect for her ability to care for her children, and the need for flexibility in finding different ways of doing things. Professional and non-disabled readers are likely to find Louise’s story enlightening and even humbling, with lessons on listening to disabled parents about their self-defined needs, and understanding that relating to them accordingly will be to the benefit of all.