Saturday, 16 January 2016

It's all about the Benjamins.

Yesterday's news of the non-invasive pregnancy test poised to be rolled out across the NHS has caused nothing less than a raucous shit storm in the UK Ds community and for good reason. The terms 'genocide' and 'eugenics' are being bandied about and for good reason.

The two questions not asked or answered in any article I've read, questions which I wish some, ANY, reporter would have the balls to ask: "How much money will this test save the NHS?" and "Isn't it true you want to eradicate Down's syndrome because there may be health issues along with it on which you do not want to spend money?"

(Catch that 'may'. That's an important one right there. I'll get back to it.)

As for the questions, I believe no one would dare speak aloud the answers but would rather dance around them with lots of malarkey about helping women to make the right choice. Pretty obvious what they think that 'right' choice is.

Fess up folks, this is eugenics plain and simple. Society does not value my son's life and that flat out pisses me off. I have one child and will not sit back and let you call him 'less than'. Nice try, though. You have been weighed, measured, and found wanting as they say.

When I was pregnant with Rukai I came across the NICE guidelines around pre-natal testing and these so called 'choices'. I don't think I have to tell you what was listed as the first choice to discuss with a prospective mother. And they do love to caress that word 'risk', yet won't admit that the biggest risk to which they are referring is to their financial coffers - fact remains there are plenty of people with Ds leading wonderful lives, going to college, getting married. I saw a wonderful story the other day about a mom and her son, both who had Ds. Life goes on.

All life, if you let it.

Risk? That risk of giving back to society. Not exactly a problem, is it.

It's all about the Benjamins, baby.

Misinformation and fear caused the rise of the Nazis.
Misinformation and fear perpetuates fundamentalist terrorism.
Misinformation and fear created racism and keeps that, too, ticking along.

If you are reading this and believe any of the scaremongering, go spend some time with folks who have Ds, talk to their parents, ask them all what life is really like. Tell you what, your shoulders will drop and you WILL be enlightened. Of this, I have no doubt.

Our own reality: Rukai has no debilitating health issues.

I'll say that one again in case you missed any of it. Rukai has NO debilitating health issues. The only 'suffering' he does is having to live in a world that doesn't value his presence in it.

He had two small holes in his heart at birth, one which many typical folk have throughout life with no ill effect (including, as it happens, the cardiologist we met at Great Ormond Street a few years ago). The other hole closed spontaneously when he was around four months old. This may not be typical in people with Ds but it happens. I doubt people even realize it's possible - we didn't. But it happens.

Sure his development is delayed. He reaches milestones late and he stays there longer. But while he's there, he really is just like any other child at that stage of development. That includes late developing motor skills and speech - the learning to walk and learning to speak more difficult but he tries and pushes himself all the same. So don't sit there and tell me my son isn't cognizant of what's going on. He is not a cabbage, despite what the financiers of all these NHS money saving initiatives would have you believe. Yes, we sometimes feel stressed raising him but so do all parents of ALL children. Try again. You will find no valid argument here other than that which relates to money.

Take all those stereotypical images of 'suffering' and other such ilk out of the conversation and all you have is a child who is different being marginalized by a society which is perpetually being fed misinformation. Believe what you read at your peril.

It's all about the Benjamins. Every last bit. Stick your money where the sun don't shine, cos my son SHINES. All the testing in the world will do nothing to change that.


  1. ..I'm heart broken ... I couldn't imagine my brothers life as less than mine... my mother was told to leave my brother in the hospital and to go home and have other 'normal' babies...that was 1970s Ireland. ..I thought we'd moved on and we have...but clearly not enough. ...

  2. You put it perfectly! Your son counts to me too!

  3. As long as the media continues to deliver one-sided viewpoints on the reason behind all this testing, people's perceptions won't change. I really do wish someone had the courage to ask those questions and demand the answers.