Friday, 22 August 2014

Don't believe everything you read.

I hadn't planned on wasting space in my blog commenting on this but it's as good a place as any to capture my thoughts on the recent furore surrounding the very unfortunate Tweet and subsequent half-arsed apology from supposed 'academic' Richard Dawkins. I won't honor it by linking to it, so if you haven't read it and want to, scamper off to Google and search away.

Right. In short, I think he's an utter twat. But I guess I can't let it sit with that.

As the parent of a child with Down's syndrome I find Dawkins' "apology" entirely unapologetic, entirely uninformed and if it can actually be possible, even worse than the original statement and here's why:

He says "I personally would go further and say that, if your morality is based, as mine is, on a desire to increase the sum of happiness and reduce suffering, the decision to deliberately give birth to a Down baby, when you have the choice to abort it early in the pregnancy, might actually be immoral from the point of view of the child’s own welfare."

Whereas what he's said there is a big blob of uninformed fearmongering, herein lies the reality: having our son - not "our Down son" but our SON - has increased the sum of our happiness and those whose lives he touches tenfold. Same as any other child would. Moral dilemma? Um, no.

Let's move on.

None of us are suffering in the least, other than from having to listen to misinformed claptrap in perpetuity. In fact, we probably celebrate each day and its milestones far more than parents of a so-called 'normal' child with far loftier expectations and constant pressure to go bigger, better, faster, more. We are allowed to find joy in the miniscule. We are allowed to appreciate a slower pace. I have smelled the flowers time and again. Tell me again how this is a bad life? Thanks, but I'll take our small joys over Dawkins' lofty expectations and loftier disappointments. I'll take our contented child over a screaming tearaway. Go on and run past us. We'll have a seat and laugh at your gangly flailing limbs.

We lived slowly before he came to us. Rukai's pace is a gift. We all FIT. He is our guide, not our burden.

Rukai's future is a big vast unknown - well whaddayaknow, just like everyone else's. He will probably need help getting by in the future but that is what advance planning and education are for.

Try again, Dick.

Now, Dawkins clearly does not know that there is an absolute CHASM between both extremes of affectation from the side effects of this condition. And there hasn't been nearly enough research done to date to determine why this is. But all the general populace seems to be told about and to be aware of is the "worse case scenario" which is not the reality. We know this plainly and our son is only 2-1/2. My friends know this because I make sure I tell them this. If anything, at least I've been able to educate my friends. If that is all I can do, I have done my best.

This is what is so distressing to us and to many families who are railing about the stupidity of this man's flippant statement. It is no different than generalizing about any segment of the population. Perpetuating a lie. You cannot say "all redheads have short tempers", "all English people drink tea", "all Brazilians like soccer" and have it be truth. These are beliefs, not catch-alls. This is the plight of people with Down's syndrome and the apathy of a society which chooses to stay in the dark and to not bother learning anything about an unknown.

I thought we were supposed to learn all our lives. Sad that some choose not to, especially when they are supposed to be the big thinkers of our society.

Because of all the "worse case scenario" we were delivered ante-natally, like many new mothers of kids with DS I was terrified when Rukai was born. In fact, I wailed. I wailed at what I thought I'd "lost".

What a complete and utter ass I was.

Rukai does not sit and stare blankly at the walls.
Rukai is not unable to learn, is not lazy, is not unmotivated.
Rukai has the temper of a dragon when he is cheesed off. Although happy is his default he most certainly is not always happy. He is not happy because he has DS. He is happy because he is content, secure, autonomous, at peace.
Rukai has learned to feed himself finger food, he is working on walking, he loves to read books and play with cars. To stack blocks and to bash those blocks down. To throw a ball across the room, to chase it and throw it again. To splash around in the bathtub and to go on the swings at the park.

He is learning and doing the same things as any other child. He has some slight difficulties (hell, I'll even offer "problems") due to his condition, but they don't cause 'suffering'. They cause him to slow down and work a little harder than the average bear.

Dawkins thinks this process of working harder must surely be synonomous with suffering. Dawkins is wrong. This is called PERSEVERANCE. Grit. Determination. Effort.

People suffer from these things now? Oh woeisme, I am suffering so much from perseverance. Man alive, I am in agony from my determination. This is awful, please someone come save my ass.

Wait! Wait! This is what you academics do.


Fact remains, Rukai is just like any other child. I wish like hell people like Dawkins who don't know a goddamn thing about Down's syndrome would quit making assumptions and instead actually go spend some time with someone who has the condition. No, scratch that, spend time with a few people who have the condition, lest you form your opinion on the single person you meet.

Dear society: don't believe everything you read.

I certainly did not know this before Rukai was born but I know now that Down's syndrome is actually classified a learning disability - one with a huge range of 'side effects'. Not everyone with DS is affected by all the side effects. But parents of children with this condition are consistenly told what their kids WON'T be able to do and achieve, due largely in part to so-called academics spouting off about statistics. I don't believe in statistics, because despite the fact that science begs life to be entirely black and white, fact remains we all live in the Grey.  And science cannot change this with its desperate need to organize and order everything. Are we not all unique? No one belongs in ANY box.

Statistically, as a white American Catholic woman, I was not supposed to move to England and marry an Asian Mauritian Hindu man. But I did. What are the stats on that?

Don't believe everything you read.

I can also say I know someone who was supposed to soar in life, with a brilliant mind and endless possibility, endless opportunity growing up in a particularly affluent area. This person is now suffering the result of a lifetime of their own bad decisions and living in the bottle. That's not supposed to happen, right?  Statistically? And THAT, friends, is what true suffering looks like.

Don't believe everything you read.

Point is, if Dawkins is an academic and wants to very publicly opine about something this important to so many families, he should actually learn about it before only speaking in terms of what HE thinks and what HE believes. Because in the great grand scheme of things, what he thinks doesn't mean squat to anyone other than himself and anyone not clever enough to think up their own ideas about life and all its mysteries.

My Dad always used to remind me there are leaders and followers in this life. I know which I'd prefer to be and feel plainly sad for the rats lining up behind Dawkins' pipe. Open your other eye, people. And if you can't face forming your own opinions, I'm sure there are plenty of other atheists to follow - all plenty easy to find in this wired up age.

I am very much pro choice, but will leave you with this: I haven't really seen it mentioned anywhere, but sometimes those pre-natal tests are wrong and the child is born with no medical condition whatsoever. Where is the morality in terminating that pregnancy?

You started a fire, Dick. Perhaps you should throw the remainder of your arrogant opinions on top.

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