Down and out. That's for society to decide...

That Downs Syndrome screening test.

I watched the Sally Phillips documentary “A World Without Down’s Syndrome?” with great interest.
I reflected on what a difficult journey that must have been for her and what a terrible realisation when you find some countries have screened out Downs altogether. i reflected on the similarities of my own life, in  sharing a deep uncluttered love with someone who is perceived as 'different'.

I do not have a child with Downs Syndrome but do have a now young man with a learning disability/difficulty . He has acquired the labels of Severe Dyspraxia (motor and verbal), severe dyslexia and dyscalculia and ASD.  Quite a drawer full, but if I am asked to describe him I can easily say that he is a person with the most beautiful soul. Kind, honest, funny, forgiving, enthusiastic, loyal and vulnerable.

When I first was given a 'diagnosis' it was made clear that he would be disabled for all of his life and would probably never read or write. I stepped onto the SEND (Special needs and Disability) ladder and that brought with it a multitude of hoops to jump through, paperwork to complete and my family was scrutinized by medical personnel to within an inch of its life. Intrusive, distressing and demeaning. Also to my mind unnecessary.
My lad is 'different' to most other people, different, not less.
Yes I fought for a diagnosis and it took 5 years and a myriad of assessments to get one. I needed to read and research, and learn and know what was best for him. 
The diagnosis became much less important once I had it.

The new Downs Syndrome screening seems to me to be on the one hand a safe and non intrusive way of establishing the diagnosis for women who may want to know. Used wisely it could be informative and enlightening. People could establish what they are dealing with and make necessary provision. But and this is a big BUT that would need to be delivered by  a loving hand of realistic and positive information alongside the terribly negative provision currently in place. As things stand right now I beleive most people would feel pressured to end that pregnancy, to have the injection that stops the heart of a viable and beautiful human being. How desperately, desperately sad.

I know a number of young people with Downs Syndrome, none of them are hampered by their diagnosis. They are not suffering. They are though hampered terribly by society's low expectations of them, of their worth. They have few opportunities to work or engage in the day to day running of their communities and lives. They are viewed as 'other'. The child that 'we' would rather not have. It is that that MUST change!

We are a long way from inclusion as far as disability is concerned. We are along way from embracing the wonderful diversity and the exceptional qualities that people who live and learn differently bring to our world.

Until that happens the new Downs Syndrome screening test must be viewed suspiciously, as a threat to a group of individuals that shine a different a light on the world. In my opinion a brighter, clearer and so often healthier one.