Tuesday, 7 April 2015

A Convenient Lie

I loved Down’s Syndrome Awareness Week this year and in particular World Down Syndrome Day on 21st March. It was fantastic to see so much positive awareness about Down’s syndrome across so many social media channels, in print and on television. The Empire State Building in New York City was illuminated in honour of World Down Syndrome Day, as was the Millennium Bridge in Gateshead, Blackpool Tower, CN Tower, Toronto, Canada as well as the homes of the Governors of New Jersey and North Carolina, USA, to name but a few.

There were amazing stories of what people with Down’s syndrome can do, wonderful videos we all watched and cried over probably, we read blogs and nodded and agreed and showed our support. And wasn’t it fantastic to see Prince Harry and some of the England Rugby Union Squad showing their support by joining thousands of people all over the world rocking their “lots of socks”!

What a buzz – we’re making progress at last right?

Yet all through that wonderful week something was bothering me. I sensed an elephant in the room. It was an elephant which didn’t crop up during that week, not that I saw anyway, yet it was the one thing which I really wanted to shout and scream about; the “abortion” elephant.

Over the last week or so there has been media coverage regarding a new non-invasive test for Down’s syndrome which is particularly accurate. It is being hailed as a huge step forward and will no doubt see a reduction in the number of live births of a baby with Down’s syndrome to such an extent that it could be all but eradicated.

Switch off the lights at the Empire State Building, those illuminations are not needed anymore. Prince Harry please remove those socks, never to wear them again. Science has found a way to eradicate Down’s syndrome so society can breathe a huge sigh of relief, the scourge of Down’s syndrome has finally been defeated and everyone can go about their business, we’ll consign Trisomy 21 to the history books along with smallpox, dinosaurs and Hitler!

Yet thousands of us, tens of thousands, parents, families, carers, know that people with Down’s syndrome are people first; not a label, not a condition, not a genetic mutation – people. If we were to let nature run its course without intervention there would, no doubt, be many thousands of people born in the future with an additional copy of chromosome 21 and they would get as much from life as the people we know and the people we celebrated during Down’s Syndrome Awareness Week. People. Like you. Like me.

Oh but the scientists tell us they’re not people until they’re born. Until then they’re just a foetus and that means we can do anything we like with them. They have no rights. It is better to rid the earth of people with disabilities. Well excuse me, if this were to be tried in court, I could call thousands of people who would testify otherwise. People who, if they had known, may well have considered a termination rather than proceed with their pregnancy. But people who now shudder at that thought. People who say they are better people because of what they have been through. People who have given more to society because of having a child with Down’s syndrome. Oh, and of course, let us not forget all the people with Down’s syndrome themselves. Yes those people who one day took a breath of air and sucked in their human rights.

Yet even now 90% of unborn babies (yes babies) detected in the womb to have Down’s syndrome never draw that first breath. Why?

The answer is not as simple as the parents, or the mother, decided to terminate the pregnancy, though obviously they did. But the decision is based upon pressure and bullying and an unbalanced and biased argument. In fact, often not even an argument, but an assumption that a termination is the only option. I don’t blame any parent for making the decisions they do. I respect their decision but it HAS to be based on the truth and not a lie and right now I do not believe that is the case. By not educating the general public, and scared parents, about just how amazing people with Down’s syndrome are somebody somewhere retains the power to eradicate Down’s syndrome.

So the elephant in the room for me, or perhaps the (extinct) woolly mammoth in the room would be more appropriate in the circumstances, is where is this pressure to eradicate Down’s syndrome coming from?

Is it coming from the scientists? Are they pressurising the medical profession somehow to use this knowledge in such a way that it sates their desire to push the boundaries of the known world?

Is it coming from government? Is it a desire to reduce the financial burden to the welfare state of people with disabilities?

Is it from within the medical profession itself? Doctors, consultants, nurses, midwives? Is there an inherent desire to play God, not just healing the sick but deciding who should live and who should die? I love the NHS and have friends who work there. I don’t want to alienate anyone but I do want to understand how this all works. Who is pulling the strings? Whose tune are we all dancing to? Whose agenda are we following? Talk to me. Let me know.

Or is it something else? Is it coming from somewhere else? If so, where? Who? Why?

I confess I do not know the answer. But somebody does. Whoever you are I say to you, if you’re going to play God with our lives then make yourself known to us. Make yourself or yourselves known to ME! I want to meet you. I want to understand your motives; to understand just what drives your sick, indulgent, deluded fantasy. It seems to me that what you are doing is similar to what the Nazis were doing during the Second World War.

Come out, come out wherever you are!

You see friends, science will not stop at Down’s syndrome. Oh you can bet right now that somewhere in some laboratory there are people working hard at decoding other “disabilities”. They are not there yet but when they find a way of detecting blindness, deafness, autistic spectrum disorder (yes, these may not be caused by the presence or otherwise of a chromosome but that won’t stop them) or any other disability, there will be the same pressure exerted to terminate. Unfortunately for people with Down’s syndrome, the decoding of the syndrome has given scientists something to play with.

However, just because someone invented a gun, doesn’t mean we have to use it to kill people. Likewise, having the science to detect Down’s syndrome does not mean that we should use it to kill unborn babies, just because we can. As with all aspects of our lives we must balance our understanding and our knowledge with our actions.

People with Down’s syndrome have had a raw deal. They were not legally obliged to an education until the early 1970s and having had a daughter with Down’s syndrome in the education system since 1996 I can categorically confirm that our society continues to fail people with Down’s syndrome by not meeting their needs adequately. All of this means that we have not seen the best of people with Down’s syndrome yet! But over the past 20 years we have seen people with Down’s syndrome make huge strides in qualifications, jobs, independence, relationships – pretty much everything the rest of us do. So why have they been demonised? Because there are too many people who still relate to people with Down’s syndrome as they were before they were allowed an education.

I have friends with a child with Down’s syndrome who will say until their very last breath leaves their body, that having that child, yes that child with Down’s syndrome, has made them a better person and they would not choose an alternative way of living even if they could. And I stand alongside them in this.

When will these people who have set themselves up as a god realise that people with Down’s syndrome make a huge contribution to society? When will they realise that every life is valuable and worth far more than any of us see from the limited perspective of a man-made label?

So whoever you are, show yourself. Stop hiding, you coward.

But you won’t. You can’t. You dare not admit that you might, just might, be wrong. So instead of taking an opportunity to change the world and face up to an uncomfortable truth you will continue to sacrifice the innocent and hide behind a convenient lie.


  1. I work with children who have a variety of barriers to learning. From Autism, Down's Syndrome and a hundred other 'conditions.' I know they share the same hopes, fears, dreams and emotions as any other person. They are all fully fledged human beings deserving of our love and support. Each and every member of the human family is equally flawed and blessed with gifts. Each member of the human family is deserving of respect, equality and dignity. Thank you for writing the above blog and reminding us of that fact. Hugs to you.

    1. Thanks for your comment and encouragement :)

  2. Wow. Very thought provoking and challenging. Each parent has to make their own decisions and that can't be easy in any situation. I have never had to make that decision. What I do know is that everyone has a right to live on this planet. As far I am concerned a baby starts at conception, one egg, one sperm and that carries a responsibility. You only have to watch the documentaries to stand in awe of how a baby develops in a mothers womb. My experience of life is teaching me that you can learn from anyone and everyone. My nephew is confined to a wheel chair and sufferers from severe fits.He is very much part of the family and he is included in everything. Every so often he will laugh. Sometimes we don;t know what he is laughing at but he brings joy to the room and those around him. He finds happiness which many people never find in a life time. As a Christian I say to God "what are you teaching me through my nephew, what are the things I need to learn from him". My nephew has ability, an ability to communicate in his way which I need to learn. I'm grateful for him. My world would not be the same without him, I would be much the poorer. My prayer is that God will give all of us eyes to see the ability and blessings that all humans can bring to this world we live in. Neil Biles, Weymouth, Dorset.

    1. Thanks Neil. Completely agree. I have learned more from Emily than I have taught her. Ability has many facets. Praise God for your nephew! I think your comment "my world would not be the same without him" sums it up - diversity and inclusion are key to our very being.

  3. Spot on Paul. I firmly believe this comes from a place of perceived cost/productivity and it comes from on high. It's 'gold standard antenatal screening targets' and 'quality life years'. It's the history of eugenics we have swallowed for a century until it has become a sugar-coated pill. Sorry it has taken me so long to read and comment, we have a hard uphill struggle and occasionally it feel impossible. I am grateful to be in your team.

    1. Thanks Hayley. It is a hard uphill struggle but I know we're making a difference and we will continue to do so working as a team - Team T21. Thanks for all you do.