Monthly Archives: March 2018

Posts for World Down’s Syndrome Day 2018 #WDSD18

With the hashtag #wouldntchangeathing (see,  I can spell it right in a blog post) taking the internet by storm, I thought I’d put together a post for you with my favourite posts about life, and love, with Down’s syndrome in it. Sometimes I have managed to write something for the 21st March, sometimes not. They might not be the posts with the most hits, but they represent, for me, what I’ve been trying to articulate about life, love, education and Down’s syndrome. Some of them are old, some of them are newer. A fair few of them have an educational slant. Quite a few of them have nothing to do with having a baby, for the simple reason that I become very tired of the link between Down’s syndrome and termination. Life goes on; and it is good.

Enjoy – and I’d love to know which ones are your favourites.

In no particular order (and certainly not a top ten, because I couldn’t decide on just ten) they are:

I never thought it would be me

A cause for love

Down’s syndrome Awareness

Downer

Out of the Ordinary

Olympians 

The unknown mother

Hope for the Future

Giving up

The Down’s syndrome memo

In my own words : Sam tells us about the things that are important to him.

What not to say

And for TES : Children with Down’s syndrome are entitled to a mainstream edication – just like everyone else

The Mirror and the Window

One day I am going to write a book. Yes, I know, I know, I’ve already written one; what I mean is that one day I am going to write a work of fiction. I’ve had the idea batting around my mind for a while now. It keeps knocking on the door of my subconscious and this week, after designing a workshop on representations of disability in fiction and why this matters (or critical literacy aka asking awkward questions) I have re-decided that I’m going to write a book with a ‘real’ disabled character in it; one who is, just like S. I read this book, you see. It’s not about disability in a broad fashion; it’s about the narratives of intellectual disability, and how they influence stories more than you might think.

I’m not a literary theorist. I’m not even a critic. I found large parts of the book a difficult read (partly because I didn’t know the stories he used as case studies) and I’ve got a long way to go in understanding how understanding the role of disability in fiction can unlock insights into what we think of ourselves as human, but I made a start.

The obvious immediately sprang to mind. Auggie, star of Wonder, Will, from Me Before You (aka the disability snuff movie), Long John Silver and Richard III (the Shakespeare one). As I continued to read, and to mull it over, I remembered Albus Dumbledore’s sister (and other squibs); even Harry Potter himself could audition for the role. Look:

The Dursleys often spoke about Harry like this, as though he wasn’t there – or rather, as though he was something very nasty that couldn’t understand them, like a slug. JK Rowling, Harry Potter and the Philosopher’s Stone, Bloomsbury, 1997

There are a host of characters and once you start looking,  you notice how writers use animal references to signify disability. Look:

[Lennie] flung himself down and drank […] with long gulps snorting into the water like a horse. J Steinback, Of Mice and Men, 1937

Or make out that they are seriously scary. Look:

Inside the house lived a malevolent phantom […] people said he went out at night when the moon was high and peeped in windows. When people’s azaleas froze in a cold snap, it was because he had breathed on them. Harper Lee, To Kill a Mockingbird, 1960

Or:

In the midst of them, the blackest and largest in that dark setting, reclined James Hook, or, as he wrote himself, Jas. Hook, of whom it is said he was the only man that the Sea-Cook feared. He lay at his ease in rough chariot drawn and propelled by his men, and instead of a right hand he had an iron hook which ever and anon he encouraged them to increase their pace. J.M. Barrie, Peter Pan and Wendy, 1911

It’s all a bit depressing.

On the other hand, some disabled characters are really quite saintly. Look:

He lived with his mother on the farm. Never was there […] a creature more popular with the young or old, a blither or more happy soul than Barnaby. C. Dickens, Barnaby Rudge,1841

Or you might want to use Tiny Tim as an illustration instead, or Beth from Little Women. Or even, as the ultimate in ‘positive about being different’: Elmer. Look:

It was Elmer who kept the elephants happy. Sometimes he joked with the other elephants. Sometimes they joked with him. But if there was even a smile, it was usually Elmer who started it. D McKee, Elmer, 1989

Mind you, you wouldn’t want to use Colin from The Secret Garden as an illustration of the saintly. If ever there’s a character who was a pain in the ass, it’s Colin. But look:

So long as Colin shut himself up in his room and thought only of his fears and weakness …he was a hysterical half-crazy little hypochondriac who knew nothing of the sunshine and the spring and also did not know that he could get well and could stand upon his feet if he tried to do it. When new beautiful thoughts began to push out the old hideous ones…strength poured into him like a flood. Frances Hodgeson Burnett, The Secret Garden, 1911

Seeing as I know and love someone who is disabled, and he is neither a demon or an angel, someone or something that has to be explained or cured with a dose of positive thinking and fresh air, he doesn’t exist to highlight how lucky we who are not intellectually disabled are and he most certainly is fully human, it all starts to feel a bit problematic. Given that most people don’t know and love someone disabled (or they think they don’t anyway) and how children, just like adults, use books to help them make sense of the world, it struck me that we might like to start asking some of those awkward questions and encourage children to do the same.

And this is why;

“the interpretive stakes are always high when the subject is intellectual disability, because the stakes are ultimately about who is and who is not determined to be ‘fully human,’ and what is to be done with those who (purportedly) fail to meet the prevailing performance criteria.” Michael Berube, The Secret Life of Stories, 2016

And this is why:

https://www.youtube.com/watch?v=DAXBOcv6AS4

And this is why:

https://www.youtube.com/watch?v=D6i97xnZCfU

“We read to know we are not alone” C.S. Lewis

The stories we read and tell are both a mirror and a window.

 

 

 

Read a book review of Wonder here.

You can find a useful booklist with ideas for primary aged children here.