Advocating and educating (the long read)

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.

(Photos courtesy of my aunt Paula once again)

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.

Advocating and educating

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.

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.

DS Media Blitz

Well, firstly, wow, I have borrowed a new Mac screen, so I am seeing my blog much better and in much higher definition than before. Woof!

But anyway, I digress, before I have even got started. We have been seeing something of a Down’s Syndrome media blitz of late, mostly thanks to the most excellent Sally Philips.

We have had:

Sally’s documentary about living with DS on BBC2 here.

There was a Moral Maze about the screening test for DS here

A conversation between Sally and Dr Tom Shakespeare, massive intellectual (who I went to school with!!), on the Today programme of Radio 4 here (at 8.40 am)

And Sally in conversation with the very funny Frank Skinner here

Apologies to anyone reading this from outside the UK, who can’t access those BBC links, or Mum… I’ll show you tomorrow.

So all of this media blitz is about the NIPT screening programme, which I have been banging on about for a while now. Will a less invasive test lead to more people screening for DS and therefore will more people terminate DS foetuses? And will this lead to a world without DS (as Sally’s programme title asked)? And does this have wider implications beyond the eradication of DS, which some people might find desirable, could this mean the eradication of other “abnormalities”? Phew, I have managed to digest a massively complex debate into just three simplistic questions with relatively few subclauses and brackets. So, like, basically, that’s what it’s all about, everyone keeping up?

But we, in the Down’s Syndrome Community [all caps] love our children and of course could not imagine a life without them. And maybe, as someone hinted at in the programme, the problem isn’t a question of our lives without them but their lives without us. There were parts of Sally’s documentary that seemed to be from the perspective of the parent of a person with DS rather than from the perspective of someone with DS, just as this blog is from the perspective of a parent of someone with DS. But then we heard from a woman with DS from Iceland. She is one of the last people in Iceland with DS because they now have a 100% abortion rate for foetuses with DS in Iceland. This woman has had to speak out, as a person with DS, for her right to exist, for her value as a human person. Fo and I did have a bit of a bet on on who would cry first during this programme, it was a dead heat during this section.

I would certainly never claim to speak for the Down’s Syndrome Community, whatever that might be, but I can only see positives in the advances that mean that a woman can have a non-invasive test about the condition of the foetus she is carrying that informs her in being able to choose whether to carry that pregnancy to term or not. It is a process that is entirely ethically sound but in practice it will mean that there will be no one like AJ to come in the future, but that said, there is actually no one quite like AJ.

I had better bung in a photo of her looking cute at this stage:

(…with her Daddy)

So my super fab wife has just put this on Facebook:

Choice is not the “be all and end all”. All of the best things in my life have happened because they have happened. Not because of conscious decisions or weighing up the positives or negatives.

It was something that we were talking about this evening, that why I like Aldi: no choice, and referenda have been turning out crap recently (vis Brexit and Colombia): too much choice. And the US election: way too much choice. Sorry I feel I have to elucidate on these analogies. I am not an informed shopper, I get very confused very easily by too much choice. I know I want tomatoes, for example, so when I am presented by an array of big, small, cherry, plum, or beef varieties all of which can be on or off the vine or organic or otherwise, I, as an uninformed shopper, am confused, I just want tomatoes. Conversely, and now I am going to sound exactly like the smug know-it-all, middle class liberal, that everyone is rising up against, “other people” are asked to make a decision about something that they are not very informed about but that they know they want some specific outcome from. So from this now very tortuous analogy for tomatoes read my job back/my country back/the people who did my people wrong to suffer.

A lot of the talk around DS is about finding out about “The News” and how sensitively, or not, it is dealt with. A lot of people have found out that their child had DS days after the birth and overhearing whispers or being told very bluntly by a medic that their child was suffering from DS and their lives would be screwed for ever onwards. In our case, I took one look at AJ and knew she had DS, she has never looked so stereotypically DS since that day. The registrar who came to talk us through it all was massively sympathetic and told us that, yes, she did seem to have lots of the indicators of DS but we wouldn’t actually know for sure until we had completed some tests, I was like, “No, mate she got Down’s Syndrome”. It is quite hard to really remember the emotions of that day, but I think that I was quite comfortable with that. We had been given a warning during pregnancy and so it was on our radar and on our thoughts. And then…

Well, and then… I took AJ to have her heart checked and to be told that basically she didn’t have a heart and since then, through the first heart op, leukaemia, brain damage, another heart op and all sorts of treatments and diagnoses, through all of that, Down’s Syndrome has been the least of our problems.

I was going to take this blog post into a meander into utilitarianism, the worth of a normal child versus an abnormal child, the cost of keeping AJ alive and whether this could be calculated against the value that she brings to her community, but then I realised, that it is getting late and I should be to bed, got a lot on at work. Night, night!