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Sarah Kanake and Down syndrome in literature

April 24, 2016

Sarah Kanake, Sing Fox to meIn the media release accompanying my copy of Sarah Kanake’s Sing fox to me (my review), we are told not only that Kanake’s brother has Down syndrome but that she has a PhD in creative writing from the Queensland University of Technology “on the representations of Down syndrome in Australian literature”.

As far as I know her thesis hasn’t been published. However, she has written about her interest elsewhere, including, most accessibly for us, at The Conversation. Her essay, which I’ve just found today, is titled “On telling the stories of characters with Down syndrome” (and you can read it online.) It’s an excellent essay, and I’ll come back to it in a minute.

When I wrote my review of Sing fox to me, I referred to Samson’s Down syndrome but I didn’t feature it. I chose to focus on other elements of the novel, namely the Gothic aspect, and the theme of loss. However, I did note that I’d like to come back to her characterisation of a person with Down syndrome, so I’m very pleased to have found her essay, which was published, in fact, the same day I published my post.

In the novel, Samson is presented as being very aware of his difference. He feels weighed down by his “heavy extra chromosome” which is how he characterises the impact of the syndrome on his life, particularly when he feels that impact is negative. It’s negative when his movements are limited (you can’t go beyond the fence, your brother must hold your hand when you cross the road, you can’t make toast for yourself); when people talk about him, in front of him, as though he isn’t there; when people ignore him, assuming he’s got nothing to contribute. All these happen in the book. But Samson does think, feel, know things. Just because he’s disabled doesn’t mean he’s stupid; it’s just that “the extra chromosome … sometimes slowed him down.”

By using multiple (third person) points of view, Kanake also portrays the responses of others to Samson. Jonah is resentful of his parents’ expectations that he’ll care for and be responsible for Samson. Mattie’s mother Tilda, kind as she is, doesn’t want Mattie to be introduced to Samson, she doesn’t want Mattie to be “stuck with disabled kids just because she’s deaf”.

In her essay, Kanake discusses our culture’s low expectation of people with Down syndrome, and how this translates in literature depicting them. She talks about how literary representations too often use characters with Down syndrome as plot devices, as points of conflict for the narrative. Indeed, she quotes Mark Haddon, author of that book featuring a character with autism, The curious incident of the dog in the night-time, as saying that he uses disability “as a way of getting some extremity, some kind of very difficult situation”. Kanake also discusses how narratives involving characters with Down syndrome are mostly told through the perspective of the parents not the person him/herself. Characters with Down syndrome, in other words, rarely have “a voice and agency within the narrative”.

Consequently, in writing Sing fox to me, Kanake says

I was extremely conscious of representing and dissolving boundaries around my protagonist with Down syndrome, Samson Fox, in order to create a narrative where Samson was free to move, evolve and change.

At the end, without giving anything away, Samson, overlooked by others, decides, quietly but determinedly, to take matters his own hands:

Quietly, and without asking Murray or his granddad, he gathered up everything he would need and packed it carefully into his school port […]

Samson crossed the lawn to the gate. He was going to find his brother. No one would stop him or tell he couldn’t. Not Murray or Clancy. This time Samson could choose, and he chose to go beyond the house and beyond the fence and beyond the gate …

Breaking down barriers in other words!

While the novel resolves some of the challenges faced by its characters, the ending is not simplistic and much is still left unresolved on the mountain (as you’d expect in a “true” Gothic novel, I think.) Samson is just one part of this. Down syndrome does, yes, define, and sometimes limit, him, but it is not the crux of the novel – which is why, really, it was not the focus of my review. I think that means Kanake has achieved her goal?

19 Comments leave one →
  1. April 24, 2016 10:01 pm

    I think I should read this one too?

  2. April 24, 2016 10:10 pm

    Very interesting, I couldn’t help but find similarities between ‘Curious Incident’ (Autistic detective) and ‘Elizabeth is Missing’ (Alzheimers-suffering detective). I haven’t read a novel featuring a complex presentation of Down syndrome though …

    • April 24, 2016 10:19 pm

      I don’t know Elizabeth is missing Shoshi. I also thought of Toni Jordan’s book Addition whose protagonist has OCD.

      • April 28, 2016 6:45 am

        Interesting, looks like I’ll have to add ‘Addition’ to the pile.
        So far, the best literary description of OCD that I’ve read is in Zola’s ‘La Joie de Vivre’ – though the sufferer is not the main character and the book doesn’t fit into my mental list of detective stories with unexpected protagonists. ‘Elizabeth is Missing’ is a twist on the genre as a woman with Alzheimer’s tries to solve a mystery…

        • April 28, 2016 8:41 am

          Oh dear, I haven’t read Zola! I’ve read more Russian classics than French. I’ve read ALL Camus, though! Addition is more chick-lit , not a genre l’d normally read, but this one has that extra edge in that our ”chick” is not your usual upwardly mobile career woman.

  3. April 24, 2016 11:09 pm

    Firstly, yes, I think that means Kanake achieved her goal – of making the DS person a ‘normal’ part of the story, although I think she would have liked you to not notice more noticeably. Second, having read the Conversation piece, I’d like to know what her DS brother thinks. And thirdly who else should be included, and should they as I acknowledge I have argued elsewhere, be the ones to present their own stories?

    • April 25, 2016 9:24 am

      It would be very interesting to know what he thinks, I agree, Bill. As for my noting more noticeably, perhaps she would have, but authors get what they get! Seriously, though, there was a lot to this book and I fear wnhng essays not responses or reviews!

    • April 25, 2016 9:28 am

      Hmm, as for people telling their own stories, yes of course, I agree Bill, but as I have argued elsewhere too (!), that shouldn’t preclude others telling stories. We do need a reading and publishing culture that gets diverse stories out don’t we?

  4. April 25, 2016 3:42 am

    what an interesting thesis subject though I have been struggling to think of any books Ive read which have a character with Down’s syndrome which makes me wonder how much of a field she was able to explore.

    • April 25, 2016 9:33 am

      Me too, Karen. It would be good to see her thesis published, or more essays from her on the subject, at least. I suspect she would have done a literature survey of other disabilities, and perhaps DS in world literature?

  5. April 25, 2016 8:30 am

    I have this one on reserve at the library and really looking forward to reading it for several reasons. Set in Tasmania with interesting characters. The Memory Keeper’s Daughter, is a novel by Kim Edwards. It is a story about a man who gives away his new-born daughter with Down Syndrome, but tells his wife that the daughter died. Not a bad read.

    • April 25, 2016 9:35 am

      Oh good Meg, I look forward to your response to it. I hadn’t heard much about the Kim Edwards’ book but in the light of this I’d be interested. As Kanake Says, it’s another of those from the parental point of view, isn’t it?

  6. April 27, 2016 4:51 am

    How wonderful! As you note, so often characters like Samson are used as nothing more than plot devices, they rarely get to be a real character with their own thoughts and feelings and points of view. Kudos to Kanake. I hope other authors are inspired to follow her lead.

    • April 27, 2016 8:36 am

      Agree completely of course Stefanie. And perhaps more people with disabilities could be encouraged to write their own stories ?

Trackbacks

  1. Focus on Australian Women Writers with Disability: #weneeddiversebooksau | Australian Women Writers Challenge Blog
  2. The Rosie Project, Graeme Simsion | theaustralianlegend

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