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Preimplantation Genetic Diagnosis: The Who, the What, the Why and the How


 

Book Review: Avery

10 July 2017

By James Brooks

Appeared in BioNews 908

The chances were always slim that great art would be born of a multi-partner stakeholder engagement impact initiative, and children's picture book Avery does not beat those odds.

But – and these are unusual words to find in a review – that's only my opinion. You might not want to give it too much weight, even considering my vast experience of children’s literature (five years of daily reading to my daughters).

The book's intended readers: families affected by rare diseases, might not be so churlish and could even treasure it. Avery went down well with my five-year-old daughter – who had a big smile on her face at the end of our read-through – even though she hasn't returned to hospital since birth. Children whose lives are regimented by endless hospital appointments and in-patient stays might take the similarly afflicted bird at the centre of this story to their hearts with even greater zest.

That said, and to return to my misgivings, there’s barely a story in these pages at all. There is just Avery, a little bird with stunted wings who can’t fly like his brother. 'Most days I'm like the other birds,' reads a page on which Avery is lying on the floor, drawing with his brother.

'Other days, though, I'm not,' reads the next in which he or she (Avery’s gender is never mentioned) is asleep in a hospital bed, hooked up to medical equipment.

The whole book is set to that pattern. 'Sometimes I don't understand. Sometimes they don't understand,' runs another couplet. Adult readers may start to resent that tedious one-two rhythm even before the book’s 132 words have all been read.

If you don't have kids I should tell you that prose in books for young children isn't always this dull. Far from it. Julia Donaldson and Judith Kerr, the two masters of this kind of writing, either give simple language such an irresistible bounce (Donaldson) or let it tread so sweetly and lightly across the page (Kerr) that reading their books is a real joy.

The pictures in Avery are drawn with winning economy, but are not well supported by a palette powerfully redolent of the hospital wards so familiar to its likely readership: pebble grey, gunmetal blue, baked-bean orange.

Overall, Avery smacks of an institutional project for which more daring creative choices have been stifled, and all rough edges have been filed down by rounds of meetings and discussions – too many cooks...basically.

Marta Altés gets her name on the cover as writer and illustrator, but only 'in association with Professor Lucy Raymond'. The inside cover reveals that Pam Smy of Anglia Ruskin University co-ordinated the project and then nine institutional logos are deposited on the bottom of the page.

In fact, Avery grew out of a vast UK-wide research project on intellectual disability in genetic disease called Imagine ID which is co-led by Professor Raymond. It can be viewed less as a children’s book and more as a patient engagement or, worse, public relations exercise. The most cynical adult readers (of course I'm one of these) might accordingly detect an ulterior motive at play which visiting an attendant online feedback survey will do little to dispel (second question: 'Having read the book, are you/your family more interested in taking part in research?')

But then Avery doesn't aim to satisfy the most cynical adult readers, as if anything could. It aims to help families affected by rare diseases feel a little less isolated, and to give child patients a cute birdie character to relate to. It is, I think, just about good enough to hit both of those targets, which is something to be applauded. Even by grumpy old curmudgeons like me.

SOURCES & REFERENCES

RELATED ARTICLES FROM THE BIONEWS ARCHIVE

12 June 2017 - by Arti Patel 
'I've got the diagnosis, now what?' is one of the first questions families ask when they contact us at Unique, the UK-based organisation for rare chromosome and genomic disorders...

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