"I love my brother with Down syndrome, but I still got the scan."

When I found out I was pregnant with my daughter last year my first thoughts were all negative ones.

What if I wasn’t a very good mum? What if my career suffered? What about my life in general, would I still have time to read and write and walk the dogs? What about money, could I even afford a kid? I worried about the birth itself and what nappies to buy and which car seat to get… But, mostly, I worried that my daughter would have Down syndrome.

I’m not sure if I worried more, or less because my big brother Charlie has Down syndrome.

Charlie is amazing but he’s amazing in the same way most big brothers are amazing. He watches over me, teaches me how not to suck on the playstation, takes me out for coffee. He quizzes my partner about his intentions and hits on most of my friends. Like all big brothers, Charlie is as impressed by me as he is unimpressed. He occasionally puts me in a headlock and calls me names, but when he introduces me to his friends they all know who I am because he talks about me often. Charlie tells people my PhD is about him and while this is wildly inaccurate (another trope of the big brother) it is also sort of true because I research representations of Down syndrome in narrative fiction.

My partner, like me, is also involved in education and disability. He’s a primary school teacher and worked, for some years in both disability care and Special School teaching. So, when I found out I was pregnant and we decided to test for chromosomal abnormalities, very few people could understand why. ‘Surely IT wouldn’t matter to YOU?’ ‘You wouldn’t mind if it had Down syndrome, would you?’ ‘But you would make such good parents to someone like that’. In fact, one of the only people who did understand and was supportive of my decision to scan was my big brother.

It was a difficult to explain to Charlie, not because he couldn’t understand but because I didn’t know how to tell him that I didn’t want my daughter to have Down syndrome. ‘You’d be a good mum,’ he said and I found myself wondering what that would mean, for myself as a mother but also for my writing and research. In my research I address a number of fictional representations of Down syndrome and one “type” of story returns again and again.

The story of the mother of a child with Down syndrome.

This is hardly shocking. The primary carer for children is most commonly their mother and for mothers of children with Down syndrome this often continues into adulthood. It’s also not shocking that the mother and child relationship heavily populates novels regarding Down syndrome and the parental narrative is clearly the most popular genre to include Down syndrome.

The mother/Down syndrome novel commonly follows the parenting ordeals of a mother from the birth of her child through to the placing of her adult offspring into a group home or facility. The narrative focuses on the difficulties of raising the child with Down syndrome, difficulties subject to the time in which the narrative is set (mainstream schooling, medical care, institutionalising etc).

Watch Mamamia staff reveal their first thoughts upon seeing their baby (post continues after video).

Stories about mothers and Down syndrome sell. Readers like them. They are compelling and generally well received. They argue for acceptance and promote tolerance but they don’t really challenge the way we think about people with Down syndrome because, mostly, society views Down syndrome through the often infantilising lens of care. There are very few novels that just include a character with Down syndrome, even though inclusion is its own argument for acceptance. Without criticising novels about mothers and Down syndrome (and those like them) or the real mothers of children/adults with Down syndrome, it is important to look at how Down syndrome is portrayed in order to understand why so many people still see it in such a negative light.

Fiction is a vehicle of visibility and the character with Down syndrome has been inextricably linked to the mother as narrator. She is responsible for the character’s existence and her experiences outside motherhood are often dismissed as irrelevant, back story, something that has already passed. She is a mother now. That is her primary role and that’s what scared me about having a child with Down syndrome.

I was scared even though I knew better. My own mum didn’t lose her identity when she became a mother to a son with Down syndrome, she’s a dynamic, interesting, crazy woman with a vibrant internal life and stuff to do beyond her role as our mother.

I was scared of having a child with Down syndrome not because my mum’s life had disappeared into disability but because of the way the mother with Down syndrome is portrayed in fiction. If my daughter had Down syndrome, I would still be me. Wouldn’t I? I would still write, work, travel, go out with friends, walk my dogs. Sure, I would have a new set of challenges but they’d just be added into the mix, like they had been for my own mother.

Recent statistics suggest that over 90% of pregnancies at high risk for Down syndrome are terminated. Why? Is it perhaps because of this fear, not of Down syndrome, but of what being a good mother of a child with Down syndrome should look like? Why was I worried about having a child with a Down syndrome when I KNEW it wouldn’t ruin my life? What would I have done if my pregnancy had been high risk? I don’t have answers to either of those questions but do I wonder, if different kinds of novels were published about characters with Down syndrome and mothers of children with Down syndrome, would the image of Down syndrome change as well?

I decided to have the scan for chromosomal abnormalities because I approached having my daughter the same way I try to approach everything, with all the information. I ultimately decided not to terminate my pregnancy but that certainly didn’t have anything to do with my brother.

My brother is his own person, he can speak for himself and interact with the world on his own terms. I wasn’t scared that my daughter would be “like” my brother, in fact I’d be delighted if was. My fears for my daughter had nothing to do with Charlie, they were about being a mother. Because my world was as much informed by my reading as it was created by my lived experiences. In making the mother of a child with Down syndrome such a heroic figure in literature, it almost made her example too hard to live up to in life. Would I have terminated a foetus with a higher risk of Down syndrome? I’m not sure. I don’t think so. However, the point is that it was my decision to make and that decision was made both harder and easier because my big brother has Down syndrome.”

Sarah Kanake’s debut novel Sing Fox to Me is out now through Affirm Press, available at Booktopia $24.99