Saturday, 16 January 2016

A Call to Arms

Just last week Emily stood in front of a meeting of medical professionals including midwives, junior doctors and consultant pediatricians, and gave some insight as to what her life looks like. Just an ordinary life; an ordinary young woman. But it was a tremendous insight into the life of a young woman with Down’s syndrome.

One of the consultants stated how important it had been as they only ever get involved when there’s a problem. So it can’t be overstated how important it is that medical professionals get to hear about all the things they never get to see – what happens when there isn’t a problem. What happens when it’s just an ordinary day. Or even a good day. Or even a great day. Yes people with Down’s syndrome do have ordinary, good and great days, just like you and me. They also have boring, crap days – just like you and me. 

So now we’ve got the news that the NIPT screening will be offered on the NHS, thus saving many potential miscarriages as invasive tests will not be required for a diagnosis of Down’s syndrome. I welcome this. Anything that saves lives has got to be good in my book.
However, I am sad that actually it won’t save lives. It will mean that the lives of many healthy babies with Down’s syndrome will be lost through termination as parents will not receive balanced information prior to deciding whether to continue with a pregnancy following diagnosis that their baby has Down’s syndrome. The lack of good information about Down's syndrome has been all too evident in the media this week.

This makes me sad.

More than that it makes me mad. I Won’t repeat what I said in A Convenient Lie but come on people, we’re supposed to be an intelligent life form but we go on believing the lie that Down’s syndrome is something which we have to eradicate. The way that information about Down's syndrome is presented at the moment just adds another layer to the lie. Read Emily’s Room and tell me that she doesn’t deserve to live. No, we’re no better than Hitler - the tyrant of Nazi Germany who wanted to create a perfect race by eradicating all that didn’t meet his criteria for life. 

Have we become Hitler? Did he win?

Is the war over? Or does it just look bleak out on the battlefield?

In 1940, when faced with almost inevitable invasion by the might of the German forces who had already overtaken most of Europe, Winston Churchill stated the case for standing up to Hitler. It seemed a hopeless task against overwhelming odds. But Churchill knew he had to act to ensure the survival of our nation.

With apologies to Churchill, let me remind all advocates of people with Down’s syndrome and advocates of truth and justice everywhere, that today we too face a tyrannical enemy – ignorance and misinformation. 

It must be remembered that we are in the preliminary stage of one of the greatest battles in the history of Down's syndrome, that we are in action at many points on social media and through blogging, that we have to be prepared, that the media battle is continuous. I would say to the advocates of Down’s syndrome everywhere, "I have nothing to offer but blood, toil, tears and sweat."

We have before us an ordeal of the most grievous kind. We have before us many, many long months of struggle and of persevering. 

You ask, what is our policy? I will say: It is to wage war - by blog, social media, TV, radio and by speaking in our hospitals and to our politicians - with all our might and with all the strength that God can give us; to wage war against ignorance - a monstrous tyranny, never surpassed in the dark and lamentable catalogue of humanity. That is our policy.

You ask, what is our aim? I can answer in one word: victory; victory at all costs, victory in spite of all opposition, victory, however long and hard the road may be; for without victory, there is no survival for people with Down’s syndrome. Let that be realized; no survival for people with Down’s syndrome, no survival for all that people with Down’s syndrome ask for - acceptance, no survival for the urge and impulse of the ages, that mankind will move forward towards its goal.

But I, as a blogger and Down’s syndrome advocate, take up my task with buoyancy and hope. I feel sure that our cause will not be suffered to fail among men. At this time I feel entitled to claim the aid of all other bloggers and Down’s syndrome advocates, and I say, "Come then, let us go forward together with our united strength”.

We shall go on to the end. We shall fight with crowing confidence and growing strength. We shall defend our children, young people, friends and family who have Down’s syndrome, whatever the cost may be. We shall fight on the beaches, we shall fight in the hospital grounds, we shall fight in the fields and in the streets, we shall fight in the hills; we shall never surrender.

This is no war of chieftains or of princes, of dynasties or of national ambition; it is a war of education and of a just cause. There are vast numbers, not only in this land but in every land, who will render faithful service in this war, but whose names will never be known, whose deeds will never be recorded on blogs, Facebook or Twitter. This is the War of the Unknown Warriors, but let us all strive without failing in faith or in duty, and the dark curse of ignorance will be lifted from our age.

Friday, 8 January 2016

From the horse's mouth

Tell It Right, Start It Right.

You’ve probably heard of it. It’s the accredited training course run by the Down’s Syndrome Association for midwives and other health professionals. There’s a clue in the title as to what it’s all about – delivering the news that your child has Down’s syndrome in the best way possible. 

This is for anyone involved in the process from pre-natal screening through to midwives, junior doctors, consultant paediatricians, health visitors, therapists, etc.
Part of the day includes time for parents to share their story; their experience. This always goes down well and is invaluable for those in the medical profession to get some feedback from the parent’s side.

Today we’ve been involved in Tell it Right, Start it Right training in our local hospital. It’s been great. A room full of people and much banter and learning along the way.

Probably the best part of the day though was when Emily got her chance to talk. Oh yes, as well as having parents speak there’s also room for someone with Down’s syndrome to have their say. With a few photos on screen as visual prompts and me asking some basic questions, Emily shared with the room about her life, what she does, what she likes, etc.

She was fab! Not an ounce of nerves, she just stood there, nonchalantly, with her hands in her pockets and got on with it. When I got to the end of my questions and asked her if there was anything else she’d like to say (expecting her to say “no”) – Emily said “yes” and went on for a bit longer about how fantastic her life is, finished it with “that’s it, thanks for listening” and went off to re-take her seat to rapturous applause.

There really is no better way to tell it, than straight from the horse’s mouth!