The power of story telling

Are you looking for a children’s book to explain what spina bifida is to a niece, nephew, son, daughter or neighbour etc? Or maybe want a book on diversity and acceptance to read to school students? Then check out ‘Right Under my nose’, a text I learnt of via the International Federation of Spina Bifida and Hydrocephalus.

Some of you may know I was on the IF Board for four years, another life ago. With Eli, a lass from Norway (General Manager), and Sonya, from Qld (Social Worker), I planned and facilitated the first IF workshop for adults with this condition. This was revolutionary.

Most conferences until then were a forum traditionally for parents and professionals. They focussed on medical issues, and mostly concerning children. For some families such details are needed, yes,

But the time has long gone when this was enough and appropriate.

Parents at the 2002 conference and workshop in Dar es Salaam heard how Eli, Guro, I and a few other adults grew up; about how we were active in our own local communities; the activities we participated in; our highs and lows. This is not to say our way was the only way. No, But it did give an idea of what is possible when barriers are overcome. Sharing our experiences helped bring parents together as never before. From this conference a new parents’ association formed and people would talk to each other and swap solutions while waiting at future clinics instead of being isolated and keeping to themselves.

Since then adults have played a strong role in the IF conference program and planning of most, if not all, conferences. The stories shared during those initial Oslo and Dar es Salaam workshops bore testimony to the strength of story-telling and sharing with and amongst peers.

So taking time to read a picture book might sound unimportant to some. But it can have a big impact. Right under my nose deals with some sensitive issues. It does this in a dignified manner and although I might have unapproached some of the text differently, I am glad it is out there.

As a bookworm of old, who has scoured shelves (and now kindle-land) I read of the Little Mermaid, Cinderella, The Little Prince and many other texts which helped shape my views. It is exciting to discover more and more books which children with different experiences can relate to.

Growing up I was interviewed by an author for a book in which she combined some of my traits with some of two of my friends. The result was a story of a young girl who goes to hospital during school holidays to save missing school. An older boy helps her accept this part of her life. One day I intend to take the themes in ‘Boy on Sticks by June Epstein further. Scope exists for adventures and simple daily life experiences to develop into another book. My grade 3 view of Leo’s scouting experiences and the young lass’ grief at seeing her dressing gown packed have expanded. I now know they reveal only part of the characters’ rich young lives with their varied potential.

The Genetic and Rare Disease Network speaks of us being more than the sum of our genese. This is so true.

When Eddie shares part of his story, in Right Under My Nose’ it reveals how important it is for us all to have dreams, challenges and independence. At times this is achieved by self advocacy. At other times family, peers or others may become the advocate or supporting person.

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