This is what we are up against.

This week, a wonderful and effervescent young woman who is absolutely thriving, has her own flat, a job, a terrific boyfriend and is loving her live (oh and who also has Ds) had been asked to participate in a radio interview to talk about the myths around Ds. The producer also saw fit to include in the segment the head of an organisation which actively promotes prenatal testing and abortion services.

The producers believed so strongly in the myth that people with Down syndrome are just 'always happy' and lack even the most basic understanding of the world around them that they aligned these two human beings on a chat show. For ratings. It's the bloody Hunger Games.

It is typical for these types of programmes to include guests who will counterpoint one another but I ask you whether you think it's in any way acceptable to position someone - with or without a learning disability - who is prepared to talk about the positives in her world, alongside another who believes she should not even exist (and has made her feelings clear time and time again under the guise of 'choice'). It is cruel, it is inhumane, it is discriminatory and it is absolutely typical of society today. I am 100% pro-informed choice but when it comes to Ds, misinformation is sadly the rule and not the exception, perpetuated by professionals either too lazy to learn the truth or too biased to see the possibility of human beings who happen to be different. I'm like a broken record now but God damn it, difference is not disaster. It's just not.

False information about Ds feeds the most base level of all fears, which for women who choose the termination route after antenatal diagnosis is not that 'the child will suffer' it is that they will. It is from a purely selfish perspective and anyone who tells you other than that is lying. I call it out because it's actually really simple to admit the reason behind a choice you make. Most who make this choice will not admit the real reason. Perhaps they cannot actually process it, but I can assure you when the only reason for termination of a pregnancy is the probability that a child may have Ds it's not being done to spare the child's suffering.

There is little emotional activity I've ever experienced stronger than maternal instinct. It lands hard and it takes a galactic amount of fearmongering to crack it. But lies and myths are made of titanium and the hammer fashioned from them strikes a hell of a blow. Crack the armor and you either force the hand or provide a tailor-made excuse to take the easy exit from a 'different' future. 'Get rid of this one and try again.' Ah ok. Thank you for saving me. 

This next may be distasteful for some but it is the truth, it is out there, and it infuriates me. I will not mollycoddle these people any longer because they don't give a toss about my feelings. And far less about Rukai's.

They terminate the pregnancy based on a prediction and often a whole lot of false information, and then go off to weep about and announce their sorrow around the child they 'lost to Down syndrome'. They may infuse their offloading of guilt with a 'Mummy loves you my darling.'

No. No you didn't. That's the thing. You didn't, because someone's fearmongering made sure of it. They took your love off you and binned it with the surgical gloves. That thing you think is love is actually regret.

This is what we are up against.

These people then look at families like mine and without knowing us from a bar of soap assume that our lives must be terrible and painful and sorrowful and any number of negatives, simply due to our son having Ds. But they should ask our friends at mainstream primary who would very politely inform them of their error. I've got a fair few struggles and difficulties in my life but Rukai is not one of them. Unless he's being insolent, or refusing to go to bed, or not doing his homework... Yes he's delayed in lots of things, but lo and behold there is a ready-made tool that can help me cope - it's called patience.

But the fact remains that pregnant women don't want a different path than they are expecting. They want to live the dream. They want to step into the parenting story they've heard of and have seen before them for years on end. And unless their world includes a child with a disabilty, that pregnancy story does NOT include delivering a child with a disability. That scares the hell out of them and makes them listen to the loudest voice in the room (hint: usually the guy in a white coat carrying a clipboard full of tick boxes). They don't want to look at the truth, so readily available. Real lives. Real people. Real stories. Like these. In many cases they don't want to even see someone out in public with Ds because they are the embodiment of all those fears and misinformation. They represent the life that terrifies them. Why? Because they don't know about it. They haven't been exposed to it, learned about it, understood similarities instead of focusing on differences. Accepting the differences as variation in human existence. Nothing more. Nothing to fear. Nothing to flee.

I am so sad that I was so afraid before Rukai was born. Maybe more sad now than angry. That time can't be recovered, but I sure can remember it like it was yesterday and advise anyone who is out there feeling the same now to take those feelings and despite how afraid you are and how painful it may be to face your very deepest maternal fear - you go on and pack them safely aside and go learn a bit more. Yes, it is a primal conflict down to your very marrow about whether or not you think you can handle having a child with a disability. Yes it's a more challenging life than it would have been otherwise. But that love? That love is the same. That journey is of a mother and child and life behind and today and to come. It's just like any other. Don't let other people scare you into making a decision you may regret later. But if you make that decision, own it. Own it and know why you made it. You'll certainly have a loss but it's not actually the one you think you've had.

I didn't think I could handle it either, and to this day relieved I didn't know in advance because I could've been in those shoes of regret, never learning a bit, never knowing the difference. Never knowing this love. But our delay in conceiving saved us that regret. He was joining us no matter what. There wasn't any other choice. But it's soul destroying to think of how easily I could have lost him. It breaks me some days. Not life with him but imagining a life without.

And here I am, mother of this gift to the world, rolling onward to age 7. Bettering myself by rolling onward to marathon 8. All after he arrived. All after he made me want to be a better person. All after he gifted me with the honour of being his mum and the responsibility to pay attention and listen. To shout to the rooftops with the same honesty and sincerity he delivers every minute of every day. There is no bullshit in him nor me. I have a job to do and here I am doing it. That is all.

Should he have to fight for the right to exist? No. No, I don't think he should.

The reason Ds is targeted so fiercely is because it's so easy to identify. It's that simple.

This is what we are up against.

Rukai is not the problem in my world. THIS is.

#breakthemyths #wouldntchangeathing