What is it about?

The rollercoaster adventures of parenting three kids, dealing with disability and mental health - and discussing disability discrimination and how to tackle it.

Friday, 8 August 2014

Gammy and Victoria

Last Friday we woke up to a sublimely sad story, which has captivated the Australian media and public.

An Australian couple reportedly left behind a disabled baby boy with his surrogate mother in Thailand, while taking home his healthy twin sister. There has been quite some controversy around this story since. There are conflicting stories as to when the boy's disability was diagnosed (4 months, 6 months) and whether an abortion was requested and by whom (the biological parents or the agent). The patents reportedly told they did not know of the boy's existence, a claim refuted by the surrogate mother. The story gathered a further twist when it was revealed that the biological father had a string of previous child molestation convictions, and there are now concerns about the child they did take home.

As soon as the story broke, outrage flowed freely. Everyone and their dog commented on how these people were unfit to be parents, and how horrible they are. There was plenty of sympathy for the Thai surrogate mother who decided to keep the baby boy and a crowd sourcing campaign took off almost instantly to help her fund some of the boy's medical bills. A number of opinion pieces were written about the exploitative aspect of surrogacy.

But bar some beautifully written personal pieces, the mainstream media has been noticeable silent on the disability angle of the story. 

I wonder why?

You see, as the story goes, the boy, called Gammy by his Thai mother, was diagnosed as having Down Syndrome (Trisomy 21) and a congenital heart problems at some time during the pregnancy. The surrogate mother claims she was asked to terminate the disabled boy and keep the healthy girl. She objected and carried both twins until their slightly premature birth. The biological parents then took the baby girl home - leaving behind the boy, who had by then been diagnosed with his heart problems.

It was the bit about being left behind in Thailand with his impoverished mother people got outraged about. Not the request for termination. At the very least they should have taken the baby home and put him up for adoption here. 

You know. Discard properly. Thoughtfully.

We now regularly screen for Down Syndrome in Australia. The reality is that most people then choose to abort their child if Down Syndrome is confirmed. Indeed, to many people, that is the very point of the test.

Do you know the percentage of pregnancies terminated after Down Syndrome is diagnosed in utero? It's about 95% (*)

As any parent of a child with Down Syndrome can tell you, they would be rich if they got a dollar for every time they were asked, as a casual aside "So, did you, eh, you know, did you know?" Generally followed by some mutterings of either "oh, well, bad luck" or "wow, you are brave" or something in that vein. 

Heck, I have three kids, two of which have a clearly visible physical disability, and I get asked constantly (even though there is not test for what they have, and if you need to know, the oldest was not tested, the youngest was, and was given a clean bill of health)!

Remember when you were pregnant? And people would ask you if you know if it's a boy or a girl? And then the next thing they say is "Oh well, as long as it's healthy". Your friends with a sense of humour might even mention things like "ten fingers and ten toes".
And there you have it.

As long as it's healthy.

As long as it's healthy it's ok. And by implication, if it's not healthy, well, then it's not ok.

Our fear of disability runs deep, very deep.

If you want to know how deep our feelings run about disability, have a look at this story.

Published in The Sydney Morning Herald the very same day as little Gammy's, was Tim Elliott's  interview with the president of the Australian Human Rights Commission, Gillian Triggs.

Triggs is introduced as "a woman of formidable intellect" with "an instinct for human suffering and the rights of the neglected". 

Except possibly the disabled, that is.

You see, after extensively describing Triggs' journey into discovering injustice in the world and her many achievements in the field of human right, at the end of the article, we suddenly hear how "not everything has gone to plan" in Triggs' life. 

In 1984, the Human Rights Commissioner gave birth to a disabled daughter, Victoria,  "as severely retarded as anyone who is still alive can be". Victoria was born with Edwards Syndrome, (also known as Trisomy 18). There is no doubt that this is a very profound disability, and most children with Trisomy 18 are stillborn or live only a few hours after birth. Triggs explains: "... the doctors kept saying 'Just leave her in the corner and she"ll die.' So, it sounds terrible, but I'd look at Victoria and think 'Well, you're going to die, so I'm not going to invest too much in you.' But she didn't die. She had this inner rod of determination, and she simply refused to die.'

Eventually Triggs took Victoria home and found a family who took over her primary care. When asked if this arrangement bothered her, she said: "Yes, because you have a child and you expect to look after her. But in the end I simply made the judgement that I would rather put my time into my other children and family, because I also never believed she would live to that age."

I can only hope Victoria was loved by the family who took over her care. Victoria, by the way, "simply refused to die" for 21 years.

According to Gammy's mother, she was led to believe his biological parents did not want him because he was going to die soon anyway (presumably from his heart condition). At some point the parents parental made a statement to the media long those lines, as did a woman who worked for the surrogacy agency.

So it seems if your are disabled, and your life expectancy is short, your life is not worth living. Disposable. Useless. You can simply be left behind to die.

Even a dedicated human rights activist thinks so. 

Well, I respectfully disagree.

Whatever happened to "unconditional love"?

The one thing we can all give our children, regardless of our occupation or intellect or manners, is love.

Indeed, if life is to be short, should it not at least be full of love?

What else is human life all about?

(*) study by associate professor Jane Halliday, a public health genetics expert with Melbourne based Murdoch Children's Research Institute. Released in 2008, based on figures from 1986 to 2004. Figures are similar across the Western Wold: 90% in NZ, 92% in the US, 93% in the UK.  

Tim Elliott, "Meet Gillian Triggs, the woman taking on Immigration Minister Scott Morrison", The Sydney Morning Herald, 1 August 2014.


Susan W said...

Wow. Great words Heike.
I had no idea what unconditional love was until I had a child with special needs. She can't put her as around me or tell me she loves me too. She can just 'be' and I love her all the more for it.
The stats around termination of pregnancy after a diagnosis of Downs Syndrome made me want to be ill.

Dawsy said...

Well said, I couldn't agree more!

Jacqui said...

Great article Heike. Wise words.

Anonymous said...

Oh my god!! Someone who has that kind of bias has no place in human rights!

Seana Smith said...

That is a bit gobsmacking... I bet it happened a LONG time ago... I heard that 95% figure... and that 90% of babies who are born with Downs weren't tested... hmm...

Have you read Far From The Tree, that book gave me a massive mental shift. I most definitely would not have carried on a pregnancy with Downs with the first two pregnancies... of course with all that I know now, I feel that would have been a mistake, luckily for me it's all theoretical. With the twins, I would never have terminated one... never.

IrishLaura said...

That is a horrible statistic about the number of babies with Down Syndrome who are terminated... And I can't believe people ask "Did you know?" What a truly horrible thing to say - and to imply that the natural choice would be to terminate, if you did know! Very sad.

Thanks for sharing this.