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How come you don’t want one?
My daughter with Down syndrome has never been a source of shame to our family, but our lives would have been easier if people had been more understanding.
“F*** you, Wing, your sister has Down syndrome!” These words were once hurled at NSW rugby league star Craig Wing while he was playing for the Sydney Roosters against the Canterbury Bulldogs at the Sydney Football Stadium. Wing, the long-term patron of the Down Syndrome Association of New South Wales, responded to the abuse with incredulity. The ugliness of the language is matched only by the ugliness of the sentiments it represents.
Family is of course beyond the pale when it comes to sledging, but this story also underlines continuing divisions within society about Down syndrome and about disability more generally. Clearly there is a sector of society, and not just confined to football fans, which still considers having a family member with a disability such as Down syndrome to be shameful.
My daughter with Down syndrome has never been a source of shame to our family. Indeed we are enormously proud of the fine young woman she has become, but there is no doubt that her journey and ours could have been easier if social attitudes towards people with disabilities had been more positive. My recent book Greater Expectations was written to highlight the role of attitudes and expectations in shaping the experience of disability today.
We have come a long way
As an historian, I am well aware of how far we have travelled since the not-so-distant days of automatic institutionalisation of children with a disability such as Down syndrome, and the assertion that “things are so much better now”, though anodyne, is nonetheless true.
The media is full of stories that attest to the success both of people with disabilities and of society in accommodating difference. People like my daughter are getting their driving licence, playing the piano, voting, giving their opinions before government inquiries and living in their own households. Many need a degree of support to do these things, though this does not compromise their capacity to live decent and worthwhile lives within the community.
Nonetheless, there remains a profound gulf between what society purports to aspire to for itself, as a warm, cuddly and accepting place, and what people are prepared to welcome into their own homes. There is a long way to go before we reach a state of full social inclusion.
So how come you don’t want one?
One mother of a baby with Down syndrome captured this all too clearly. Gushed over once too often by a well-meaning but unthinking member of the “they’re all such dear little things” school, she finally snapped back, “so how come you don’t want one then?”
To try and answer that question, we need to consider the historical legacy of exclusion, first through institutionalisation and then, more recently and much more efficiently, through pre-natal screening. The consequences remain all pervasive. If Down syndrome is a condition we can test for and screen against; if carrying a baby with Down syndrome is unquestioned grounds for termination; if bringing up a child with Down syndrome was once considered so dreadful a fate that people “put their child away” instead, then the message is still very clear: such a child is something to guard against, not to welcome. What kind of future are we embracing if we allow this child into our lives? It is this question in all its starkness that parents have to confront when they learn their newborn baby has Down syndrome.
In writing this book, I interviewed more than sixty people who live with Down syndrome. Some were born with it; some chose it, either by opting not to have a termination or by adopting children with Down syndrome; and some had it thrust upon them. They lived right across Western Australia and their experiences were as diverse as their locations. Interviewees included families of different migrant backgrounds, and Indigenous Australians, some of whom had grown up haunted by memories of the stolen generation and still lived in fear that the authorities would come and take away a brother or sister or cousin because of their disability.
I also interviewed a number of young men and women with Down syndrome, living at home or independently or with support in the community, who are busy doing ordinary things and simply getting on with their lives. Take one married couple who live south of Perth for example: the Saturday morning when I spoke to them, they had just come back from doing the weekly shopping before they caught the Eagles supporters coach up to town to see the football; and I admit I was taken aback at my own surprise at just how “normal” their lives were – but why not?
My son, my daughter
I also spoke to parents. There the conversations ranged over the broad themes of the book: the birth experience; the education minefield; health and encounters with health professionals; growing up; sexuality; work; leaving home and independence. Alongside their enormous love for and pride in their children, what they conveyed was, having a child with a disability is not a small deal. It requires a longer term commitment, perhaps, and more foresight and planning than is the case where one’s children are born without a disability.
However, as the book also shows, the issues dealt with by families can be exacerbated by ignorance, negativity and institutional inertia; by token attitudes towards inclusion; and by deep-rooted ideas and out-dated practices which deny people with disabilities the right to participate fully. When you live with disability on a daily basis, you come to realise that disability is not, ultimately, just about difference, but is another aspect of being human. Full inclusion can only occur when that is more generally recognised.
As one father said:“When [our daughter] turned one, we all got round to celebrate her birthday and thought back to the day she was born, all the tears, all the trauma, and I just couldn’t help thinking, what on earth was all the fuss about?”
That’s another question that’s very hard to answer.
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