Thursday 6 October 2016

No hidden agenda's

Well that was quite something...

I  hope those of you that tuned into watch "A World Without Down's syndrome?" enjoyed it as much as I did. 

A quote that struck a real chord with me came when the Icelandic geneticist spoke of the manger of their building (whose son has Down's syndrome):

 "There is hardly anything more beautiful than seeing the two of them together, because there is such a strong bond and so much love"

As I mentioned in my blog post, Sally has shown great courage to make this documentary. Why? well because aside from all the amazing responses she's now exposed herself to debate with which comes an onslaught of 'doubters' who thought last nights programme had a hidden agenda – to guilt trip any new parents into keeping their unborn child with Down's syndrome.

The only 'agendas' I saw were:

A) to spark a much overdue and vital society debate as to the ethics of the new non-invasive screening for Down's syndrome (DS), because let's face it, if it starts with DS where does it end up heading? We are all, every single last one of us imperfect in so many ways after all.


B) to show the side that has almost no voice at the point of diagnosis. The real life stories of families living with DS. The side that might help take the fear away at a time when you are led to believe your world is caving in. It's this kind of more balanced information that will help a couple to make a more INFORMED choice. The scales just aren't fairly tipped at the moment.

As a parent and advocate for DS (with a pretty small voice) I am so happy this documentary was made and aired. The tireless hard work so many people have been doing over the years has now been given a fair hearing and reached more people than we could ever have dreamed of and been delivered in such a brilliant, compelling, sometimes funny and above all, non-patronising way with zero hidden agendas.

A big thank you to Sally for taking the gutsy plunge, for Hayley (Down's Side Up) for being brave enough to share her emotional story so publicly, to all the people involved from both sides for having the courage to share your thoughts on a sensitive subject and for the BBC for airing such a groundbreaking documentary.

Now the debate has started the hard work really begins :)

Tuesday 4 October 2016

A World Without Down's Syndrome?

Some of you may have noticed (many of you won't care!) but it's almost a year since I posted on here. Not something I'm proud of nor ashamed of but it has made it harder each time I approach the keyboard to know where to start with all of Rosie's achievements (and mischiefs) in the past 12 months.

So I’ve chosen the eve of a potentially groundbreaking short film to ease back in and write a quick post to help spread the word…

Tomorrow (Wednesday 5th October 2016) BBC2 will be airing the eagerly awaited documentary from Sally Phillips, 'A World Without Down's Syndrome?'

"Driven by the experience of raising her son Olly, who has Down's syndrome, Sally explores some of the ethical implications of our national screening policy."

This could be an important documentary for something that is so so important to me when new parents are faced with a pre-natal diagnosis of Down’s syndrome. That something is, ‘choice’ and not just choice but INFORMED choice. This was one of the primary reason’s I started The Future’s Rosie and it continues to be the driving force behind why I (albeit sporadically now) blog and share personal moments of Rosie’s life on social media. This in itself isn’t easy as I question myself daily about whether it’s the right thing to do – do people really see why I do this or do they carry the opinion I’m exposing what would otherwise be personal family moments as a selfish need for attention?

I can answer those that think the latter by saying in all honesty life would be much simpler and less hassle for me if I didn’t do it at all, I’d much rather live in a world where Rosie’s condition wasn’t something I felt I needed to share to show ‘it’s okay’.

Too many people are afraid of the ‘unknown’ with Down’s syndrome – yes I was that person too once which is why I know it’s a very real problem. I’m not and never intend to be a part of any ‘PC brigade’ most DS advocates don’t either. For me it’s always been about educating in a non-patronising way and if that means sharing my daughters life to help the cause, then for now at least I’m still positive it’s the right thing to do – even if it is a mere drop in the ocean of change.

I, along with so many other parents am very grateful that Sally, who is already in the public eye for professional reasons has used her platform to reach people on a much grander scale than someone like myself could ever dream of. This isn't a small gesture either I would imagine it's taken an awful lot of hard work, careful contemplation and courage. Sally is now exposing herself to inevitable debate and criticism which can’t be easy – all for the greater good of educating society to the 'other' side of 'Down's syndrome, a side that many healthcare professionals would have you believe doesn't exist – and as you may or may not know I say that from first-hand experience.

If you get the chance please do tune in to watch or set your record buttons! The more people that see this short film the better so please share and spread the word too! A world without Down's syndrome would be a world without my baby, my beautiful girl, 'Daddy's little Princess' and to that I say a resounding no thank you.