Fremantle Press : Books : Greater Expectations: Living with Down syndrome in the 21st century by Jan Gothard
I've been itching for this one. Hannah was home sick yesterday with an ear infection and I thought to myself - I wonder if that book will arrive today (it was due late Feb early mar)? Well just as I was heading out to the Drs to get little brat some antibiotics - the postie delivered it to my door.
Perfect for a flick through while waiting at the local GPs. I'd already read the sample pages taken from the introduction and they were good so I had high hopes for this book. I read it quickly yesterday. It's Australian, it's current and it's well researched so yes - it lived up to my expectations.
I like the clear organisation of chapters through life's stages. I read the diagnosis chapter and then skipped ahead to the schooling one: Learning to be Normal, Learning to be Disabled. It was a scary chapter full of challenges and no easy answers but that is not unexpected I guess. Our experience of schooling has been fantastic - so much more than we dared hope for even as late as the year before the twins started school, but then we are only 1 month into their second year at a regular local school...
The chapter I enjoyed reading the most was School's Out: Rights and Rites of Passage because here was a range of stories full of possibility and fun. Some wonderful quotes from interviews with parents and young adults with DS like Benita's mum who says what good company her daughter is and Michael who wants to stay living at home so he can look after his single Mum. Controversial issues like relationships and steralisation are raised and dealt with expertly - letting the families speak for themselves.
The writing style is less journalistic than Kathy Evans Tuesday's Child and corrects one of my bugbears in that book about portrayals of disability in literature and media. Gothard gives a clear yet concise overview of down syndrome in the media, specifically addressing changes in visibility and attitudes. Evans of course is opening up her own experience in all its scary intimacy - the divine and the hideousness of coming to terms with what is undoubtedly a lifechanging diagnosis. Evans states "My child is not my child; she belongs to the world of science. Once she was diagnosed, she ceased to be a baby and became a medical anomoly." Six years on and I still understand the anger in those words. Gothard presents a chapter on medical issues "It's not a disease you know!". She contextualises the diagnosis of DS and the range of potential accompanying medical issues in a way that is the best I have ever read. If I was a new parent on this journey the this is the medical chapter I'd be recommending. In a straightforward way without emotive overtones but the judicious use of quotes Gothard gives the medical profession a slap on the wrist and holds up models of best practice. She recounts people's real experiences. Reading this chapter I learned things that previously I had switched off on no doubt because of the 'horror list' they are so often presented as. This was a refreshing change in approach.
The book is squarely set in WA - and so coming form the eastern states it really opened my eyes to how a different state deals with disability. I loved reading some of the stories that were clearly specific to that state. The inclusion of aboriginal families was well incorporated. I'd love to meet Charlie King and his family - they sound awesome! In fact reading of the kinship system that supports him summed up what we are trying to achieve here in the city of Sydney for our daughter. A fact that Gothard identifies "His extended Aboriginal family - siblings, cousins, aunties and uncle - involves a broader family network than does most non-Indigenous families, and this network serves exactly the purpose that many city-based nuclear families are presently trying to achieve for their family member with a disability." So there we are - included in this wonderful book. Not everyone has Charlie's experience obviously and Frank is a good contrast to this. "Frank's extended absences from his family have disrupted the development of the kind of network within the Aboriginal community which has spontaneously grown up around Charlie."
It also incorporates views from a multicultural society. Making this a sound overview of a range of attitudes and experiences in the world of Down Syndrome. Gothard clearly identifies her own interests in the subject and I was very interested to read her discussion of her research methodology - how to incorporate her own valid experience yet let others own unique voices be heard unhindered. How to respectfully include the views and experiences of people with DS - not solely relying on the 'high functioning'. You can tell that this is a crafted work done with love. Each chapter generally has a positive observation or comment as the ending, my favourites being one on the role of organisations such as DSAWA "Together they continue to raise expectations and generate hope.' and the heartfelt tribute to the vanguard of parents from the 1950s: "Nonetheless the cautious optimism we can dare to feel today is at least partly a legacy of their commitment." The least positive end comment is unsurprisingly in the chapter on education. As Gothard concludes: "Where full inclusion is absent from society as a whole though, it is hardly surprising that you can't always find it in the classroom." A call to arms? I think so...
Lastly for inspiration in this book you can't go past the last and briefest of chapters - "A Different Way of Looking" - a beautifully written summary of Greater Expectations held today by a whole lot of people, realistically, idealistically searching for the best inclusive practises. A perfect read for the day the draft of the Productivity Commission's report into disability in this country is released. I was reminded of NSW DSA's Buddy Walk 2010 slogan - 'we've come a long way baby!' The future for our family is indeed bright and full of greater expectations. This book is a wonderful addition, a guiding light to the next generation of citizens, parents and activists however we choose to define ourselves.
PS I also loved this paragraph in the last chapter - cos I can identify with it!
"You soon find yourself embarassed by your own hyperbole, and convinced they are thinking, 'Well she would say that, wouldn't she!' One mother, who often speaks publicly about her son with Down syndrome, experiences the same difficulty when dealing with this topic, and told me, tongue-in-cheek, that she has to try hard to avoid the 'every home should have one' approach."
LOL. That reminded me of when an organisation (can't recall which one) put a notice in the NSW DSA newsletter about a young boy with DS in need of adoption. I was chatting to a friend, a mum from school who has a 'rainbow family' of biological children and adopted ones from O/S - I was just joking of course (well mostly!) - that Mum didn't go ahead (she has 4 kids as it is!) but she did go home and look up the link...so yes there is definitely something in me that supports the 'every home should have one' (or two ...) approach. lol