If you had 5mn to convince the world that people with your condition deserve a go at life just as much as everybody else, what would you say?



March 4th, 2017

Look, I know this is controversial. I’m aware not many of you will agree with this petition. And yet, many of you might still “like” the post because either you know Kathleen or more importantly because we are still thankfully allowed to agree to disagree and respect each other’s convictions, opinions, values, call it what you like. I do feel compelled though to explain why, to me, it’s so much more than signing this petition…, and the fact that my own daughter has got the condition is not a REASON for signing it, it is a TRIGGER.

Perhaps it will show you a perspective you hadn’t thought of, so all I ask if and when you read this, is that you keep an open mind, and get yourself a nice cup of tea/coffee and chillax for 5 minutes.

You see, right now, Kathleen is still blissfully unaware that her condition is so awful and monstrous that in many countries (UK and France to name but a few) the law allows a woman to terminate her pregnancy up to the day she should deliver. That her condition is so awful and monstrous that the world is not only keen to eradicate it but rejoicing in it. Try and take that in for a moment.

Right now, I have no idea how I’m going to broach that subject with her. I have got about 2 weeks before we go to the UN where she will have about 5mn to plead her case that people like her shouldn’t have to explain and justify why they deserve to live.

Why would I drag her into this, some people might wonder. Because when it finally hits her, I want her to be dressed for the occasion: fully armoured!!

I am no fool. I understand this new NIPT (non invasive prenatal test) will be a great success no matter what, I understand that it will be outlived by even better ones, just as it is the best version of all the other tests so far. I am in awe of all these medical findings. I truly am. I just question their use and the path it is taking.

I’m just thinking: whatever happened to unconditional love? When did society decide we should want and love a child only if it is as perfect as medical research allows?
The further the progress in the medical field, the more conditions we put on this unborn being before it’s allowed to make it in the daylight! What scientists call Karyotype is in fact a full fledged in-utero curriculum vitae with credentials and it had better be up to scratch or else!!

It would appear that our kids had better perform in continually fine-tuned tests way before they even start school!!!

Meanwhile, society has never been as inclusive! I struggle to reconcile the 2 messages: 1/we are doing our best to avoid defective births 2/ If we are unlucky enough that you still somehow make it through the many obstacles we put in your way, then we will try and welcome you with open arms.

Do you know that, in France, the video “Dear Future Mom” https://youtu.be/Ju-q4OnBtNU was banned from being aired on television on the ground that it could “disturb the conscience of women who, in accordance with the law, have made personal life choices.”. So, if we carry on with that logic, had the video featured young adults with Down syndrome who were unhappy and couldn’t speak and had their tongues out, would the government still have banned it or would it have encouraged it because it would have comforted the personal life choice those women made and hopefully ensure that other women in the future would follow in their footsteps? Or was it banned because when all these women supposedly made a life choice, actually that choice was made with very little positive information and probably the grimmest of prognosis? Am I wrong or is this all one sided?
What does it say to all the concerned individuals that are already amongst us when that medical breakthrough happened? What does it say to all the concerned individuals who will accidentally make it into this world? Will they have to make sure not to look too happy, not to do too well in life, so these women’s conscience are not disturbed???? What does it say to all the parents who will decide to still go ahead with a pregnancy in spite of these medical breakthroughs? Will they have to look terribly depressed and unhappy in case they disturb a conscience? Uhhh, hello???? (or to my French readers who will appreciate this, “Allo quoi!!!”

How balanced is the information given until a life choice is reached?
Why is it unlawful to terminate a pregnancy on the ground of gender (or God forbid in the future, on the ground of sexual preference – can you imagine the numbers of terminations suddenly rocketing!!), isn’t that a personal life choice??? Call me crazy!

I’m also wondering if in parallel to scientific research, these unrealistic demands for perfection stem from the fact that we are also now living in a world where we can not only get anything we want off the internet but that item always comes with a return form should it not be up to your expectations. Not perfect? Bam! Return it, free-post, no questions asked, item will be replaced in no time. Brilliant. Next. The new norm.

What are we teaching our children? People are worthy of life and love only if they are perfect? We can’t cope with children unless they’re perfect? Your marriage/partnership won’t last unless your children are perfect? Siblings will be ok as long as they are all perfect? I can assure you that my friends are not happier because they don’t have a child with special needs, they should though, or should they? There is always something to be unhappy about, it’s human nature.

So why can’t we just go back to the basics and try and love unconditionally? Why can’t we just deal with the hand we’ve been dealt with and rise up to the challenges that life throws at us? Isn’t that what we keep hammering at our children?

The last but not least trigger that comforts me in my decision to sign this darn petition and one that encapsulates all my other arguments, is that my other wonderful daughter, who happens to have Asperger’s and is 15, came home yesterday, and told me they had watched a documentary in class called “ a World without Down syndrome”. https://youtu.be/x16wGajCHIw . If you haven’t watched it already, I highly recommend it but make sure you’ve got tissues within reach.
The teacher didn’t have a chance to discuss it with her students due to time constraints so Jessica and I had a rather enlightening heart to heart about it. In a nutshell, here are some of her comments: Are they happier now in Iceland since they’ve managed 100% Down syndrome-free births over the past 5 years? Is the government financially better off? What about when there is a test that can detect Asperger’s? What’s so wrong with me? And Autism in general? What about Cerebral Palsy and all the other syndromes? What about when they can predict your IQ? What about when parents get their perfect child but then he falls gravely ill or has an accident and ends up with special needs? What will they do, how will they cope? Will they still love that child?
I did warn you, I did say “in a nutshell”

And that is why I signed that petition, and hopefully, you can now see where I coming from and why it is after all that Kathleen is going to the UN. Let’s just hope she does a good job and they don’t all rush out to buy that test!!! Lol!!!

There, I’m done. Food for thoughts perhaps.

Thank you.

Update: I ended up giving a speech as well, Had 2 days to come up with something! Anyway, it all went fantastically well and she killed it!!

Here are the youtube links:



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