In this edition we go back to one of my coaches Vicky, who shares powerfully her thoughts and feelings following watching a recent documentary on Downs Syndrome and the questions it raised for her and throws up for all of us!
On October 5th the BBC screened the documentary ‘World Without Downs Syndrome’ fronted by screen writer, comedienne and actress Sally Phillips. She is a well known celebrity type figure, but in addition she is also mother to Olly, a ten year old boy with Downs Syndrome.
I found out about the documentary once it had screened and watched it with my partner last weekend on catch up after a good friend of mine recommended it.
All hail the BBC iPlayer! A God-send to all parents everywhere who would have missed entirely on countless programmes if that invention hadn’t come about!
I have two children from a previous relationship and the man in my life doesn’t have any of his own.....yet.
We talked early on about the prospect of having another child, one of our own. He feels very strongly about experiencing that for himself and wants very much to be a Daddy in his own right and I fully endorse that – he’s so wonderful with mine and I couldn’t imagine him not having the opportunity to raise a child all his own.
Obviously we are heading into our mid-30’s and the baby stakes seem to get a little higher at this point – ‘higher risk’ is something I have come across more when I speak to people about trying for another baby in the future and I am often urged to try ‘sooner rather than later’.
It feels there is a genuine fear around becoming a mum later in life and having complications in pregnancy as a result and some of that is completely legitimate. But the one thing that Sally Phillips perspective gave me was hope. Hope for people whose biggest fear is realised when they get a Downs Syndrome diagnosis.
I don’t think she was trying to trivialise things – a diagnosis will without doubt impact your family dynamic and the rest of your life, in ways that you didn’t necessarily envisage when you became pregnant. But perhaps the problem isn’t always Downs Syndromes existence? Perhaps it is our attitudes and response to it as human beings that causes the bigger issues.
One very special part of the programme that I have reflected on a lot since I watched it was the way she described her son as being a Downs Syndrome person, and not a person with Downs Syndrome.
There are all types of people on the planet and actually, it is only one genetic modification that creates Downs Syndrome – should it be viewed as an illness, a disability, a defect? Or should we just be far more accepting of human diversity and adapt and change ourselves and our world so that we can all co-exist and reach our full potential no matter what the DNA is saying?
90% of women who find out through the screening process that their baby has Downs Syndrome choose to terminate the pregnancy. It is an extremely sensitive and personal decision and I'm not here to judge anyone. But if some of that decision is based on the fear that people have for their unborn child, perhaps we as society should do something to help! That means we need to shift OUR attitudes, OUR values, OUR beliefs!
We are all different. Some of us have greater need for support and help than others with the day to day running of our lives. Are we living in a society that supports that, or do we work against the natural way of things? After all, we as humans don’t decide how a foetus is to develop, what attributes it will have or potential difficulties it will face on its journey, that is up to the Universe (or a force greater than us – whatever way you look at it!) For now that stuff is confined to scientific laboratories, but who knows! Perhaps not forever...a mass debate on science and ethics could ensue here, so I am going to stick to my point!
Are we saying that it would be far better if we all as human beings were all the same and had no obvious differences whatsoever? If women/couples were given a diagnosis and felt that their child, no matter what, would be offered support (both practical and emotional), compassion and understanding on a higher level, would it impact the choice they made on whether or not that baby would go on and live a life?
I don’t want to imply that I know anything about the practicalities or implications for families where a child has Downs Syndrome. I know that Sally’s son was very high functioning, but I also know that this is not always the case and some people with Downs Syndrome face a whole host of physical and social challenges that have serious impact on their quality of life. The questions I have raised are more the questions I have asked myself since watching the programme. I feel sad to think that in some cases we as humans see natural diversity as something to be overcome! Why can’t we just accept that some people are built differently and accommodate that? Make changes? Because I think for those who are living with someone who has additional needs of some kind, if society were more open minded, life may just become easier.
I didn’t give much thought to screening with either of my children. It was a part of the process and I didn’t think to question it. I don’t think I was informed about the implications of such tests and viewed it very much from a ‘well everyone has them, and all will be just fine anyway’ stand point.
On reflection perhaps I was a little ignorant. Sally’s insight makes me think that when it is time to start thinking about my third attempt at baby making that I will try to worry less about being ‘the older mum’. The truth is I can screen during my pregnancy, I can find out what awaits me and my family to a certain extent and ultimately I can make my own choices. We are all different and whatever our choices around screening and the outcome, my only hope would be that they would be made with love and not through fear. Nobody should fear being different – that to me is the awe inspiring thing about being part of the human race.
If you haven’t seen the documentary, I urge you to give it a watch.