Listening to Nirvana loudly on headphones, it has been that kind of day! I had a long session with some irate Colombian teachers, then had a tense Facebook interchange with someone on the merits or otherwise of Down syndrome children.
Tomorrow is World Down(‘s) Syndrome Day so there is a lot bouncing around Facebook etc about DS… which is lucky ‘cos otherwise I would have had no idea that that it was World Down(‘s) Syndrome Day. Having my finger on the pulse might possibly not be what my nearest and dearest would point to as my strongest one of my points.
Something that came to my attention was this video:
I posted it on Facebook and then other people posted it on and a friend of a friend picked up on it. I am going to paste in our exchanges below. As it was something that I had posted, I felt justified in speaking out. But it was certainly not the only comment of this kind that I saw. I subscribe to a channel called Upworthy and it is what it says it is, very worthy but I like it. Upworthy also posted the video above and got all sorts of comments in the same vein. Ss did the YouTube channel where it originally appeared. It does seem a shame that there seems to be so much anger out there. A lot of comments were just purely stupid and nasty but a lot of people were getting into the pro-life/pro-choice argument which I don’t think that the existence of DS people should necessarily be about.
We – Fo, Otto, AJ and I live in an incredibly privileged situation. The not-aborting choice was slightly forced upon us but we were in a position where we thought we could probably cope with a DS child. We have had a bit more thrown at us than possibly the script suggested but thanks to a happy combination of circumstances: a solid relationship and family; being able to draw on incredible support from extended family and friends; money (not enough/loads, depending on points of view); a lovely home; an education that allows us to make the most of the state support that needs to be pressed to deliver; the NHS; and most importantly the DS person in question being the most preternaturally jolly person alive, we have survived where others would have struggled.
I wouldn’t change AJ for the world but that does not mean that I am an evangelist for having Down Syndrome children. The kids in the video are, as many people have pointed out, at the top end of a spectrum, not that there is a recognised spectrum.
I am quite proud that I managed to talk this guy down from a pretty angry position, well I say I talked him down, it was the AJ pic that did it. I have tried to anonymise this conversation but as it was on Facebook, I feel it is ok to share in redacted form, if it is ok with the Guardian and Edward Snowden, it is probably ok for me and my interlocutor. His last comment did make me very happy. We give worth to all sorts of abilities in this world, many of which when you stop and think about it make little sense: the ability to kick balls really well, the ability to sell us things that harm us like cigarettes and sweets, the ability to make rich people richer. All these things are incredibly well remunerated in our world, but what is the worth of the ability to smile and make a sad man happy? …nowt, so unfortunately I will never be able to monetise AJ’s grin, which is a bugger because, if I could, I would be a rich man!
Him: Prenatal diagnostics … that’s the true inspiration!
Every woman giving birth deliberately to an incurably disabled child should be, well, you know what I have in mind. Of course, these children appear to be happy because i) they are told so and ii) they don’t know a different way of existence.
And if mummy is fed up with everything the child can still be dumped at social services at no cost. Lord have mercy!
My friend: Don’t be too offensive, will you XXXX? Apart from anything else, prenatal diagnostics are not infallible.
Him: Unfortunately, I know one of these mums who gave birth to a child with Down syndrome knowing what was coming up. The poor little thing should have deserved better.
But mummy (43 years of age) so wanted a child because everybody else around her had one. Her then husband tried to talk sense into that woman but failed and subsequently divorced her. Mummy didn’t care, got the child, lives on benefits and clearly can’t cope with the situation.
There we are: a disabled child, not properly looked after expecting to live in life-long poverty. And I have no right to question this?
What’s offensive in raising a finger pointing to the thought that the well-being of a child and its own future should have priority over certain mums and their very own madness?
I will never give in to all sorts of politically correct issues. There must be one single loud and clear voice against all this happy-clappy-stuff which blatantly ignores common sense. And now you’re allowed to cull me.
Someone else: XXXX, you have every right to question … and every obligation to listen and reflect. Thank you for a lovely post, [MY FRIEND]. The author Morris West referred to children with Down’s syndrome as clowns of God.
Me: Oh dear XXXX what you need is a cuddle and kiss from my little girl, obviously you have not had enough of these in your life. What made you so unhappy?
Him: Well, Luke, I was never asked in the first place if I would like to be born. The answer would have been a strict no. Luckily, I’m not disabled so I have maximum control of this useless incident called life – including putting and end to it at my own discretion.
Now, let’s think of a child with Down syndrome which at some point in life is asking mummy or daddy, why things are as they are as above. What would you answer? Darling, you’re a clown of God. Darling, mummy was so selfish and thought she could handle you being different. Darling, sorry, your daddy is a do-gooder who, sorry, yes, sorry, found out too late that life wasn’t like in that video he found on Facebook the other day.
Not really nice answers, aren’t they?
It’s a good idea to focus on the dark side of life to see if the bright one is really bright enough.
My friend: XXXX, I don’t think you’re ever going to agree with the other people who’ve posted on this thread. However, I’m not going to cull you because I believe you have the right to freedom of expression. I disagree entirely with what you say, but I will defend to the death your right to say it. I hope you will extend the same courtesy to me. (Incidentally, that woman whom you cite sounds as though she’d have been a dreadful mother in any circumstances. Children aren’t lifestyle accessories)
XXX, Luke, X, and, thank you for your positive voices.
Him: Freedom (of expression and thought – which includes the stimulus to think after all) is indeed the thing to fight for. And you know I would do the same for you.
Disagreeing over something is better than keeping up appearances. You’re so right, children aren’t lifestyle accessories – that was my point, bottom line.
Me: Oh, XXXX, believe me, I have thought about a child with Down syndrome from most angles, I have one! On one level she has been nothing but problems as she has all sorts of complications. But on another, far more important level, she brings the most incredible amount of joy to the world, not just to me but to everyone who encounters her. I could have done without the cancer and hearts ops but I would not wish away her Down Syndrome as it is part of who she is and the world is a whole lot brighter with her in. I have just come off a massively stress work call and need to pop out for a cuddle with her to recover.
I have a son who “lucked out” genetically, he is handsome and very bright but who knows what will become of him, he could end up a junkie, be shot fighting a futile war or become a serial killer, my daughter is unlikely to do any of these. She is also unlikely to find a cure for the cancer that nearly killed her but she is also unlikely to invent a killer robot.
It is indeed often a dark world we live in but we should strive to find the brightness because it can be incredibly beautiful.
I am unlikely to describe her as God’s Clown as I am an atheist, it is an extra chromosome, nothing more.
Me: Here is a pic of her getting home four days after open-heart surgery. Now tell me the world isn’t a better place with that smile in it.
(you’ve all seen this pic before, but I felt it would do the trick!)
Someone else: Your words, and perspective, are wonderfully inspiring, Luke. I’m glad your daughter is in this world!
Someone else: She is beautiful!
Me: I know!
Him: Luke, in your case the bright side has won and hopefully always will. What a smile!!!
My friend: I love that picture, Luke. Thank you for adding its joy to my thread. I hope to meet her soon. Thank you, also, for your restraint on this thread, which has been admirable. Your calm words, especially about needing a cuddle from her to de-stress speak more than any ranting could.
Me: Thanks [My friend]. I really do think Georg is not only entitled to his own opinion but also that it is entirely valid. I think everyone should think carefully before bringing a child into this world and even more so if they have DS, we certainly did.