Friday 26 August 2016

Let's not rush to judge over baby Gammy

Kneejerk sentiment is all very well, says Brendan O'Connor, but let's think before we demonise parents for not wanting a child with Downs

Published 10/08/2014 | 02:30

Realities: Gammy, a baby born with Down syndrome, is fed by his surrogate mother Pattaramon Janbua at a hospital in Thailand.
Realities: Gammy, a baby born with Down syndrome, is fed by his surrogate mother Pattaramon Janbua at a hospital in Thailand.
A campaign to raise funds for Gammy in Thailand raised more than 3 million Thai baht ($93,360) in less than a day for the medical treatment of the baby

Try and put out of your head for a minute everything we subsequently learned about David and Wendy Farnell, the parents accused of abandoning one of their surrogate twins because that child, baby Gammy, had Down syndrome (DS). When the world first became fixated on the story, the details about David Farnell's history as a paedophile had yet to emerge. At that point he stood accused merely of abandoning baby Gammy because the child had DS. Let's also put aside, for a moment, the dispute over whether he did, in fact, abandon the baby, or under what circumstances he did it.

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So let's just look at the story purely as it emerged initially. A man was demonised all over the world because it was reported that, firstly, he encouraged the Thai surrogate mother to abort Gammy when he discovered the unborn baby had Downs. And, subsequently, he abandoned the baby for being imperfect. Cue outrage in the world's media. Anguish all over social media. Strangers on Twitter saying that their heart was broken over the story. And ultimately a couple of hundred thousand euro collected in an appeal for the baby.

All very nice and caring. And all very easy for people to get their knickers in a twist about, before moving onto the next viral outrage.

But am I the only one who thinks that I can sympathise with what this ogre did? Is no one else prepared to admit that, while his actions were not pretty in this regard, they are understandable? Am I the only parent of a kid with Downs, who would admit that, to my shame, when you first hear the news, you have a moment where you think, "Not me. I can't do this." And if the child had a natural/birth mother there, who wouldn't be tempted to think, I'll take one, but you can hang onto what the Thai mother reportedly called "the dumb one". There is definitely a moment where, if there was a humane out like that, a person would be tempted to take it.

As for pillorying Farnell for suggesting that Gammy be aborted, I'm at a loss as to why everyone is so shocked by this. All over the world every year tens of thousands of foetuses are aborted because they test positive for DS. In the UK it is legal to abort, up to birth, for a condition such as Downs. Ground E for an abortion in the UK covers anything from cleft palate to more severe conditions - and it allows for abortions after 24 weeks and right up to birth.

In the UK - after a combined test that indicates a risk of Downs, which is routinely carried out on all pregnant women unless they object - 30,000 women a year who are deemed to be at high risk based on the results of blood tests and ultrasounds, are offered amniocentesis, which is a more definitive test for Downs. Of those offered amnio 60pc take it. The other 40pc possibly don't, largely because of the risk of miscarriage, which is one in 100 with amnio. They may also not wish to know, because they may not wish to be given the option of aborting their foetus with Downs.

Of those who take the test and get a positive result, official figures show that nine in ten abort. In 2012 1,000 foetuses were aborted after positive tests for Downs. Some of these were very late abortions. Yet those people are not demonised in the world's press. They are not the subject of social media frenzies. Indeed, you might suspect that the same social media crusaders who were so horrified by Farnell's attitude to Gammy, would be the ones who would stand up for a woman's right to choose. But when it comes to this case, where there was a living, breathing cute baby to look at, they went with the sentimental argument. How could he do it? What a monster.

I am aware that discussing these things gives me some pretty odd bedfellows. But I am not making a pro-life argument here. What I would say is that while the reaction of Farnell, and the reaction of nine out of ten people who find out their baby will have Downs is understandable, it is a pity. And there are more low-risk ways of finding out your unborn child has Downs being developed all the time. A simple blood test can do it now, which some people tell us could hopefully lead to the elimination of Down syndrome. More accurately, you could say, it could lead to the elimination of people with Down syndrome.

It is understandable why people dealing in the abstract, and even when presented with a newborn with Downs, would panic. For starters, given that we live in a world where the elimination of people with Downs seems to be an aspiration for many scientists, and is certainly common practice, you can understand why someone might feel they would not want to have a baby with Downs. Also we live in a society where people with Downs are treated like second-class citizens. When you look at a baby with Downs or the prospect of a baby with Downs, you are looking at someone whom you know will be dependent, no matter what your circumstances, on charity. Their rights will not be their rights. They will be afforded to them at the pleasure of others. They will be dependent on the goodwill of others. All their lives you or they will be around with the begging bowl trying to get essential services. When that is the message that society sends, it is understandable that someone would bolt from their baby with Downs, or get rid of it, given half the chance.

And, of course, on a more personal level, in the abstract, people get a terrible shock, and they think, "I can't do this. I am not a good enough person to do this. I am not selfless enough to do this. I have to look after my other children." They will also think of a child that will always be dependent on them, that has a one in two chance of having a heart defect, a one in two chance of dying of Alzheimer's, possibly while they, the parent, are still alive. Or the alternative, which is dying first, and having as their last thought, 'Who will fight her corner now? How will she cope without me?'

These are the realities people are faced with. So whatever this man's other shortcomings, which were not known about when we first starting judging him, don't judge his reality for the sake of some sentimental hashtag kneejerk. And if you are going to judge him for not wanting the baby, then be consistent, and judge all the people who have the same reaction, the overwhelming majority of those who get positive tests who choose to terminate their baby with Downs.

I'll tell you an awful thing. When my second kid was born with Downs I rang my brother and told him my life was ruined. For a brief moment there I would have run away or something, only I had the older child and a traumatised wife to look after, and the new baby had burrowed into me quite quickly and become more than just, to use that awful phrase people use, "A Downs baby".

The good news is this. I'm not a great person all around, but even I have managed to cope so far. Far from ruining our lives I think that, like most people with a kid with Downs, we would probably report equal satisfaction with life now. Don't get me wrong. It's terrible. Don't let anyone tell you it's not awfully sad. And it's worse for the mothers, because they are generally at the forefront of having to fight to get the child anything she needs. Because you are totally dependent on the kindness of strangers.

The latest is that my wife has essentially learned to be a speech therapist. This is on top of work and caring for a kid with special needs and another kid. And, of course, at times, you worry. And sometimes you look at her and her whole life flashes in front of you and it absolutely breaks your heart. And I don't mean in a hashtag read a sad story sadface way, like baby Gammy broke so many hearts. I mean, really tears you to pieces.

But you know what? I love her so much and she has made a man of me, and of her mother, and she is turning her sister into an extraordinary person. And she herself is an extraordinary person and I am so proud of her every day. Not as a person with Downs, just as a person, as an anything. And most importantly, so far, at least, touch wood, she is incredibly happy. She is having a ball. I'd nearly say she is having a better time than all of us. And while it won't always be easy for her, who are we to deny her the struggle? Who am I to decide she didn't deserve to live because life would be different for her. I'm so glad she wasn't wiped out. I'm so glad we didn't reject a lack of perfection. I'm so glad she's in the world. And practically every parent with a kid with Downs will tell you that and they will mean it. And lots of them have it far worse than we do. They have seen their kids cut up for open heart surgery as babies. They've seen them unable to eat or swallow, they've seen them terribly sick, in awful pain, and nearly worse, they have seen them desperately passive, which is worse than you think. They have seen all the small things we all take for granted become epic struggles. Yet they don't regret it.

It's very easy for people to get carried away when there is a cute baby involved - and, funnily enough, lots of kids with Downs are exceptionally cute, with their babyish features and their exotic eyes. It's very easy to get off on what disability activist Francesca Martinez calls inspiration porn. Ah look, so cute, aren't they great, send money, that man is evil for rejecting this child. This kind of sentimentalising of disability in the media and on social media is possibly helpful in some way in getting awareness up, but I can't help thinking it is profoundly offensive to people with disabilities. It's not a million miles from the old-fashioned, condescending notions we used to have towards disability. Ah aren't they great considering. And it's a gift from god. And god gave you this because he knew you were a special person.

Hopefully, this story will lead to some of the people who had their hearts broken on Twitter looking into this issue in a more real way. Hopefully they will look beyond having their heart broken by cute little Gammy. And maybe they might think about why someone would not want a child with Downs, and maybe they might think about all those people who choose not to have a baby with Downs, and maybe they might question whether we wish to live in a society where difference or imperfection is eliminated. And as genetics advances all the time, maybe these people might think a little about what other differences we are going to start eliminating from our ever more perfect gene pool. And maybe they might consider too that society's attitudes to people with Downs are one of the main reasons why people like David Farnell and the thousands of people who terminate their unborn babies with Downs every year do so.

Baby Gammy will have done us all a real service if he encourages people to think a bit about that. And the funny thing is that social media and the internet will be hugely valuable in facilitating that discussion and that learning process and that consciousness change. Once it gets beyond the initial hashtag kneejerk.

Sunday Independent

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