A Life After ‘A World without Down’s Syndrome?’

There has been such an amazing response since the documentary ‘A World without Down’s Syndrome’ was aired. I couldn’t be happier that people are finally talking, debating and that our children are finally being heard. I really believe that this documentary is the best thing to have happened in the Down syndrome world for a long time, and that people are now listening to what we who experience it have to say. Especially in the medical world, where the people who can make a real difference are hearing us. I’ve received many positive messages from people who took the time to watch it, people who are happy to have been educated on what life is like for our children and families, and the things that are being faced. I will be eternally grateful to Sally Phillips and the warrior parents behind this, the world is a better place because of them. Unfortunately some people have totally missed the point, and shouting that women’s rights to make a choice regarding termination have been violated. It seems to be a heated defense, although it was never the argument in the first place.

Ask yourself this question. When screening is one day brought in to look for Autism (because it will be), will people feel very different about this debate, will sides be changed? Imagine this….

“I’m really sorry; your baby appears to have autism. It’s unclear where it will be on the spectrum, but there is a huge chance that it will be a burden on your life and the NHS. I’ll book you in for a termination tomorrow and you can try again”.

What about when screening is brought in for future illnesses?

“I’m so sorry; it appears that at some point in your child’s life, it will develop meningitis. We have no idea of what the outcome may be. They may survive, they may die, and they may lose limbs and have a lasting medical outcome. Either way, they will be a burden on you, your family and the NHS. Best to terminate and save yourself the heartache”.

Or even……………….

“I’m so sorry; your child will at some point develop cancer during their life. We have no idea what life they will lead or what the future will hold.  This will be a huge strain on yourself and the NHS, best terminate and try again”.

Sounds unreal right? Not to me. I’m facing every day at the moment the harsh views of many, that the world would be a better place without children like my son. Just imagine how that feels. People openly and proudly stating that a life with Down syndrome is not worth living, that they are a burden and have nothing to offer. Now I’m a tough women and have an extremely positive outlook on life, I can handle that b******t. But this is ripping some mums and dads apart. Just take a minute to think about what it would be like, to have strangers look at your child with pity. To look at them like they have such a terrible existence, that it would have been better for everyone if they’d never been born. Think about what it’s like to have people think your child is a burden to you, your family, society and the NHS. And then think about adults with Down syndrome reading these comments. Yes, shock horror, they can read! I dread the day I have to explain to River just why people think the world would be better without him. It’s so hard to express to the outside just how untrue any of this is, that Down syndrome is not the end of the world! It’s just a bit unbelievable to me that people would feel sorry for us and be glad they’re not us, people who are probably far from happy themselves. I mean we have a wonderful life; my sons have a wonderful life! No screening ever could have told me that. However, doctors, sonographers, midwives and any other people involved should be telling people exactly that. Yes it can be tough and yes it’s not easy, but it can be really, really wonderful.

Unfortunately there will never be a screening for future murderers, rapists and pedophiles. Now that would lessen a burden on society!

I’ve said many times before that I am prochoice; actually I am pro INFORMED choice. Both sides of the story, not just medical. This documentary portrayed it perfectly and Sally did a beautiful job. Yet still people watched it with blinkers on, deciding before watching it that its aim was to shame people who decide to terminate. Believing that we think terminating any child with Down syndrome is wrong. Not true! (Although terminating up to 40 weeks is a different story).

Women fought long and hard for the right to choose and I believe strongly in that. I also believe that the new NIPT  test could potentially and eventually be a great thing, as it gives knowledge and that can never be bad. But the choice given to expectant parents has to be fair, it has to be informed. If it’s not we are doing women and families a true injustice. If it’s not informed, then it just becomes an enforced decision.

I am tired of having to defend my son’s rights to be here. I’m tired of having to prove his worth, to prove that his life is meaningful, happy and fulfilled. But let me tell you something. Until I take my very last breath I will do it, I will fight to show the world just how important he and other people with Down syndrome are to this world. I will do it because he is my son, he is River and he is important.

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