I am republishing this one because there was quite a lot more that I wanted to say on the subject (as ever, I hear you cry!). I think that once I had got my Dad brag about Otto in and a cute picture of AJ, I just hit publish, without really finishing my point. So if you read the first bit, and you can be bothered to read a bit more of the same, just scroll down a bit and pick up later.
So after the Sally Philips led media blitz, this is my new mantra: advocating and educating. I think this blog has always been about making Ava-Jane visible, to begin with, when her life was in the balance, I wanted to make her visible so that, what might have been a fleeting passage on this earth, was remembered. But as she has got better, my blog posts recently seem to have been about life as a parent of and co-habiting with a person with disabilities. I sincerely hope that I have managed to convey that it is a richly rewarding experience, one that we stumbled into unaware and unprepared, but that has enriched us all.
Something that has come up again and again during this media blitz are the interrelated questions of what is the worth of a child with disabilities, what will they contribute to society and how much of a burden will they be on society.
I have often said that we have two children, one who lucked out genetically and one who didn’t. Otto is enormously good looking, caring, charming, able and intelligent, he has just passed his 11+ with flying colours (I had better get it out there now, that this blog post is really nothing more than a cheap vehicle for me to be able to be “Smug Dad” and broadcast that last fact over the one small loud hailer that I have). So ostensibly being Otto’s parent is easy, he is the kind of kid a prospective parent would want to have. You wouldn’t screen him out. But what’s to say that he doesn’t grow up to be a murderer, an arms manufacturer, a junkie or a marketing executive? While he is as “normal” as you could want, he might go through life contributing little to society or being an actual burden.
Ava-Jane isn’t going to pass her 11+ and there are a whole load of things that she isn’t going to do but she is unlikely to grow up to be a murderer, an arms manufacturer or a marketing executive but she is going to make a lot of people happy.
So, yes, our lives have undoubtedly been enriched by having Ava-Jane in them and I would argue that Ava-Jane has had a positive influence beyond her immediate friends and family. You can take her to the pub as we did this evening and she has said hello to everyone there.
But if we were to go back in time seven years to be told that our unborn and unnamed baby would have Down’s Syndrome, heart defects, leukaemia and brain damage, would we have chosen to terminate? We wouldn’t have been losing Ava-Jane, we’d have been losing an unknown. So I think the honest answer is that we probably would have done, had we known all of that. And the world would have been without Ava-Jane; a poorer place. img_7538
One of the worries that this screening tests presents us with, is that what is an understandable decision to terminate at an individual level can be devastating at a societal level. An expression that both Sally Philips and Dr Tom Shakespeare have used is that a screen for Down’s Syndrome is a “canary in the coalmine” in that it could be a warning of things to come. What else will we be able to screen for in the future? As we saw in Iceland in Sally’s programme, screening has meant that there are no more births of children with DS there at all. Some might see this as a good thing, I don’t. But consider another thing that can be screened and has been for years: gender. “Do you want to know if it’s a boy or a girl?” A UN report claims that there are 117M “missing” women in Asia due to the favouring of male children over female, see http://www.unfpa.org/gender-biased-sex-selection
I think that the same argument between individual choice and societal effect applies here. I would be reluctant to condemn individual families in Asia from societies that favour males over females, with restricted means, having chosen to keep male children over female for economic reasons. Or families in China, constrained by the one-child policy, who believed that if you can only have one child, a male one would bring greater benefits. But the availability of that choice has clearly been atrocious.
Gender screening is obviously a simple test that has been around for years but what else have we got coming over the horizon? Going back to AJ and her plethora of conditions… Let’s say we knew that she had DS and we decided that, given our privileged situation, it was something we were happy to live with. What about her heart condition? Spotting her heart defect pre-birth is now possible, her condition is extremely common in people with DS, about 1 in 4, I believe. So maybe we would have said “DS, OK” but a heart condition that would necessitate multiple operations, “perhaps not”.
How about cancer? I don’t think it is currently possible to identify whether an individual will have an enhanced risk of getting cancer, but as our ability to analyse the human genome becomes ever more sophisticated, it is certainly a possibility. So what would we have done if we had been told that our child had a high risk of contracting a severe form of leukaemia the day after her second birthday? Dunno. If she had died then, the world would not have lost anyone of great “value”, she was young and had not achieved anything of “worth” and indeed society would have saved itself an awful lot of money. I hate to think what her treatment cost (btw, thanks to all UK taxpayers reading this, you saved her!) But consider another case of cancer that I am close to. My dear friend T, who contracted cancer about the same time as AJ at the age of 40. Now T really has contributed a lot, he has been enormously successful and brought joy to millions, he is the father to three beautiful children. What if his parents had been told that he had a propensity for cancer?
What do we stand to lose by having these choices available to us? What will we be left with if we attempt to iron out all the anomalies, the differences, the defects? As I said above, the world would be so much poorer without AJ in it. She might not be perfect but she certainly is scrummy.
I was going to steer clear of Godwin’s Law, I really was. I was just going to hit Publish again and totter off to bed. But we know where this ends, don’t we? This attempt to create a perfect child? (I sound a bit like Jonathan Pie) Even if the idyllic eugenics of the early twentieth century that preceded the horrors of the attempt to create a master race later in the century might not be fairly compared to offering a screening test that gives a pregnant mother choice, we do have reams of dystopian/utopian sci-Fi future fantasies that envisage a world where a perfect being has been created. And none of them end well.
So what’s the solution? …it really is time for bed.
ten top, gold-plated misliterature stars for anyone who can spot the deliberate spooning in of a Bob Dylan snippet in reverence to the great man’s recognition by the Nobel committee. Oh it was the “unborn and unnamed” from Masters of War.