Can you imagine reading something every day that questions your child’s right to life? Can you imagine knowing that a huge percentage of people in society think your child shouldn’t have even been born? Can you imagine knowing that people look at your child and see something abnormal and scary? Can you imagine waking up every morning feeling like you need to prove his brilliance to the world, so that they can have a glimpse at what you see and prove that he is just a ‘normal’ little boy. Can you imagine knowing that there are people in the world who want to ensure that others like your own child are never born? Can you imagine as a parent knowing that your child will never be valued or appreciated, only feared and looked upon negatively. Like they’re something grotesque!
That’s my life. Anyone who follows this ‘I am River’ knows that I am an extremely positive person and that we live a beautiful life. River is loved so much and we know that he is going to do great things. But can you imagine everybody else thinking your child is a burden, a waste of money, a waste of resources, a waste of time?
There have been big debates over the last week after programs were aired about the NIPT tests and the 100% abortion rates in Iceland of babies with Down syndrome. I wasn’t going to post anything as I’ve seen these types of things over and over again and it is heartbreaking. I’ve read public opinions and to be honest it just really hurts, but it’s not shocking anymore as I see it all the time. Although every single time it’s like a big kick in the face. I’ve even read comments that state ‘every women with a positive result should be forced into a termination’ and that ‘babies born with Downs should be killed at birth, it’s kinder’. Yes somebody actually said that! And these are not trolls, they’re not people just writing things for a reaction from people. I can deal with internet trolls, they’re nothing to me and easily ignored. But these are real people living within our communities who genuinely have these opinions and these comments are not a rare thing for me to hear.
Down syndrome is not a disease, it’s not an illness. It’s a genetic condition, therefore is part of a person’s whole existence. So when we talk about ‘eradicating’ Down syndrome, we’re not actually talking about taking Down syndrome away. We’re not talking about removing Down syndrome but allowing life (I also don’t agree with that, but that’s a whole other debate!). What we’re talking about is terminating the life of anyone who happens to have it. We are ‘eradicating’ people.
Eradicate cancer, eradicate diabetes, eradicate heart disease, eradicate all disease that can hurt or kill us. But eradicate people? Really? What is wrong with us as human beings that we think only the ‘perfect’ are worthy of life. Anyone that isn’t ‘typical’ has no right to be here. Who the hell gives anyone the right to decide that.
If you don’t want a child with Down syndrome then don’t have one. But don’t you dare dehumanize my son in order to make yourselves feel better. Please don’t dehumanize my son in order to justify your belief that he isn’t worth life. He is a person, a human being. Societies fear, ignorance and vanity do not make him any less human or any less important. He is a human being! He is River.
When I look at my son I don’t see what you see. I see a beautiful, spirited and healthy little boy. Yep he’s never even been taken to the doctors and has had no other illness other than a handful of colds – bet that shocked you right? Although why I even have to use that as a defense is beyond me, are sick kids of any less value now? Can’t you see how gross that sounds? I just don’t see what you see. I see him. I see how full of life he is. He’s cheeky, mischievous, determined, feisty, sneaky, funny, clever, adventurous, daring and just utterly brilliant. Not to mention just gorgeous! I just want you to see what I see.
Can you imagine feeling the need to fight every day to try and change the world for your child? Can you imagine needing to change the world for you child? My son is not someone who should be gotten rid of. We don’t need others like him to not exist. What we need is for people in society to open their minds and just start being better. Human beings just need to start being better people. It’s as simple as that.
What really needs to change?
Is it the existence of people like my son?
Or is it you?