Steve Palmer's blog about his son Stanley - who has Down's Syndrome - & the extended family. All about Down Syndrome and learning disability.

Saturday, 14 April 2012

Down's Syndrome - The Biography - Book Review

Down's Syndrome - The Biography. By Chris Nancollas. (Darton Longman and Todd)

This book needs a re-write but don’t lost the passion for human rights, Chris!

In saying that I couldn’t put this book down, I also think there are three huge areas for improvement. This short book is good if you read it in context. For people who are quite used to the idea of a family member having Down's, this is a great read. But I’d suggest that new parents shouldn't read it.

Why the contradiction? Well, the three troublesome areas may mean that the good ideas in the book get clouded. That’s a shame.

What did you say?

Firstly, the language used makes you feel like it was written in 1972. I personally don't have a problem with this. But Chris Nancollas needs to be more sensitive to the fact that many do. I've spoken to a parent who says that the book has really annoyed him because the Down's Syndrome Association has worked hard to get writers and journalists to use the correct phraseology. Let's not get into that argument here, but Chris writes the book in a very medical way; our kids are “patients” and “Downs children” who are “sufferers”.

And it's such a shame because Chris is so passionate about Down's Syndrome and human rights, and so excited about the big advances that have been made in our children’s lives. He calls learning disability the “Cinderella” of disabilities. The passion’s there. But some readers may not get that far because of the words used. I think it was good that he talks about idiots and mongoloids, because that was the language that was historically used and he does recognise this. It’s not those types of words that are challenging, because he places them in historical context.

Keeping it real

Secondly, he doesn’t mention people’s actual stories until near the end, and even then there’s a reliance on materials from several years ago. It would be brought to life if it showed a real day in the life of a child with Down’s living in 2012. It's all in the third party as if people with Down's Syndrome are a concept rather than real people. Even when he visits a local special school, there's no attempt to talk to the children (or their parents) who are benefitting from the excellent education he describes. How about the book starting by describing a visit to the swimming pool and Macdonald's, just like Stan and I did yesterday. Rather than being a prescriptive account (and I know Chris doesn't want it to be) that approach would highlight how people are individuals, a point I know he wants to make.

Computer literate generation

The third area is about technology. I LOL’d when Chris said that some advanced schools use tapes....Tapes! This is 2012 and Stan has an ipad, for goodness sake (which, incidentally, he uses in school as part of his lessons). He doesn’t sit there glumly looking at TV like a stereotype. He’s flinging between Angry Birds and You Tube and knows far more about computers than say, my Mum. To ignore this great resource that our kids are mastering, and which is massively improving their development, is a big disappointment.

The good news

This is all a shame because the book is really good. It shows how far society has moved on since the 1960s; things have got a lot better and in the old days they were a lot worse so it’s disappointing that these other issues deflect from that powerful message. I realised this early on, so I read it in context. That’s why I think it’s fine to read it if you’re well acquainted with DS issues, but I know that I’d have been a new parent reading it, it would have made me extremely depressed.

The most fascinating bit was how, in something like the 14th century, Down’s Syndrome didn’t use to be a learning disability. That’s because the majority of people were poor and most didn’t have access to anything to learn. And people often didn’t look different from each other because everyone’s face was ravaged with scrofula, small pox and other horrible diseases. Nasty.

There’s an excellent chapter on how the asylum system was built up, with good Victorian intentions, and why it was best to subsequently dispand it. And there’s fantastic material about how mental health conditions have historically been linked with learning disability, with awful results. Chris also talks about how the Nazis killed people with learning disabilities, and how Enoch Powell was an advocate for closing asylums.

So please read it, but, in context. I certainly found the subject matter thought-provoking. I know that there are other books that detail the history of Down’s Syndrome. With some rewriting this could be a standard text, and then perhaps new parents could be pointed towards reading it.

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