Wednesday, August 06, 2014

Democracy, adults and children.

Years ago a colleague and I who taught Legal Studies had a cartoon we both liked. We'd use it to generate discussion in our classes. Essentially it was about democracy - and how great it was - and the drawback that every person gets to vote - whether you agree with them or not. The punchline was along the lines of  'beware the morons bark'. In times when every troll and fool gets to have a say on social media it still has resonance.

Last Friday driving home from work, I heard about Gammy for the first time. Since then he has been getting lots of  social media time. Reports of the matter are a bit blurry - so this is my summary of what I understand to be reasonably accurate about the matter. An Australian couple paid a surrogate Thai woman through an agency to carry 2 embryos for them. At some stage during the pregnancy it was realised by ??? that one of the twins had Down Syndrome. The Thai woman was asked to have a selective termination, anywhere between the 4-7 months stage according to what I've read, but she refused. Two babies were born. A 'typical' girl and a boy with Down Syndrome who also had a congenital heart defect. The commissioning parents took the girl baby home with them. Gammy, the boy, is being raised by the surrogate who does not have the $$ to ensure that he gets the major heart surgery and after care he requires. She claims to have entered into the agreement to help pay of her family's debts and says that she has not received all the $ agreed in the surrogacy arrangement. She is raising Gammy. Without surgery Gammy will die. The biological 'donors' technically seem to have abandoned him in Thailand.

As I listened to Richard Glover retell the tale on abc radio 702 Drive program, I cried. There are things happening in the world that disturb me greatly. The children killed in the Gaza conflict. The children seeking refuge in Australia. These are 'big picture' happenings where I can see how children's lives are disrupted, disturbed and sometimes destroyed by the conflict between adults. Gammy provides a peephole on to some of the same issues as they play out in the life of just a few individuals. His story resonates with me for many reasons. Firstly, like his biological parents, I am Australian. I have twins via ivf. One of my twins is male, the other female. One of my twins has Down Syndrome, the other is 'typical'. My twin with Down Syndrome was born with a congenital heart defect that required major heart surgery when she was just two months old. There the resemblence ends. I never dreamed of separating my twins.

Gammy's story may have turned out so differently with just a few different twists and turns in the course of events. If a surrogate hadn't been required, his biological mother could have sought a selective termination here.  The biological donors could have accepted both babies from the surrogate. The surrogate may have gone ahead with the selective termination... and no story may have eventuated. You see, not only is the role of power, privilege, human trafficking, parenting and the dignity of the child significant in this case, so is chance. I believe that just like democracy, people need to be able to make choices. Those choices are not necessarily ones I agree with but we each need to be able to come to our own conclusions, and in collaboration where the decision affects other adults, as it often does in complex situations.

If there is a dispute between conflicting adults the family court applies the principle that the interests of the child are paramount. I wish that was the case in the wider world. Gammy's story makes me sad. It also gives me hope. I was touched by the compassion with which Richard Glover related the news the first time I heard it. He commented that it was one of the saddest stories he'd heard. There is a rapidly growing 'help fund' for Gammy's care. Discussions are occurring in many different places. Democracy only works if people are informed, if a range of views get listened to, if everyone has a say.

I have been part of the growing movement of people with disabilities, carers, families and friends who have been raising awareness about issues of fairness and justice for people with disabilities in our society. As the media attention fades away on this and hopefully Gammy gets his surgery and settles down with his loving family... what have I learned from this story? Advocacy never ends. We need to stand strong for the dignity of children, for the value of adults whose lives are too often undervalued in society. The ultimate goal is self advocacy. I want to raise a daughter who can speak for herself. And I want a world that will value and listen to her.

We have seen some significant reforms in Australia through the piloting of the National Disability Insurance Scheme (NDIS). My daughter attends mainstream primary school where she is resepcted and liked by her peers and teachers, where the other families of the school inlcude her in the community. I work in special education in a mainstream high school - and I can see real changes continuing to happen - to make life fairer and better for all. I have crucial networks with other advocates each with their own way of fighting the good fight. The Mum whose handsome boy is featured in fashion ads, another who focuses on ways to help women who receive a prenatal diagnosis have up to date and 'real' information when making life altering decisions, the countless public fb pages raising awareness of people with Down Syndrome, the love and support and understading we show each other when things get tough, as they do sometimes on this journey.

When I walk down the busy city streets, laughing and chatting with Hannah, my precious daughter who has Down Syndrome, I am showing you a peephole into our world and I hope that that glimpse will allay the fears and misconceptions that are held about difference and disability in particular.  She is part of the happiest story that I have ever experienced. So like the tattered beast that is democracy, we are not always going to agree. My shoes are not yours but That doesn't mean we can't learn from each other.  Almost 10 years into this journey I have found a steel core of openess and support in the people I meet and in some noteworthy institutions too. I can see a future where the dignity and rights of children will be seen universally as being of paramount importance, if we continue to work for it. That knowledge and the article I read recently about Gen Z.... these kids, yours and mine, growing up now with all their privileges and access to information, are going to be awesome! And so the story of Gammy is not 'happy' or 'sad' but a bit of both and all the bits inbetween too....

Here are some gratuitous 'twin shots' because the hardest part of the whole story for me, the reason I cried when I first heard it, was the apparent disregard for the bond of the twins themselves. Twins are magical however they are conceived. They have grown together from the very beginning and it is not the place of adults to experiment with or destroy it.

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