NCLUSION – A Devastating Irony

We have spent the start of the Easter holidays doing the same typical things of families everywhere. We’ve travelled to grandparents, been to watch the football, a trip to the seaside, eaten well and scoffed lots of treats. The kids have played with their cousin and Uncle and we’ve had a really, lovely time.

Wherever we have been, nobody has batted an eyelid. Nobody has pointed or stared. Nothing about us as a family has stood out. And actually, at the football, Seb turned round to the row of teenage boys behind us and engaged in a bit of banter with them. They spoke to him just as teenage boys would speak to any fellow 7 year old football fan.

We have also met two incredible trailblazers. David from the Music Man Project and Duncan, writer and film maker of My Feral Heart. Whilst their outputs are very different, they have both been motivated by very similar experiences. At a time where inclusion was in it’s infancy, both had known people with special needs as young adults – both had the opportunity to see beyond labels and see the potential within us all and ultimately motivated to take this message to a wider audience.

It made me think how powerful inclusion is. I’ve spoken before how my own unnecessary fear at point of diagnosis stemmed from ignorance. When I was growing up I never knew anyone with Down’s syndrome, or a disability. I feared the worst. I based my future on the past. A time when those with disabilities were segregated. Not seen, or heard, or integrated. Labelled and not included. A sub-race. It is no wonder a common misconception is that people with Down’s syndrome are all the same. Or people with a disability are defined by it. I think historically this may have been true, in a time where opportunities to play football, perform, study and so on were limited.

And so I always have faith in the next generation. The children growing up with Seb. They don’t see a label. They don’t even know Seb has one. They have no preconceptions of what Down’s syndrome is or what it historically meant. They just know Seb as Seb. That’s all they see. And they probably make no connection at all between Seb and the older boy that used to be at his school that also has an extra 21st chromosome.

I’m feeling uplifted, I’m feeling included and our lives are so typical and a far cry from the horror I wrongly imagined 7 years ago. Things continue to change at a pace too. The recent Sky movie and ThisGirlCan ads and Jamie Brewer modelling in New York serves to prove my point. Inclusion in all areas of our lives means that David and Duncan will not be the exceptions who’ve had a personal opportunity to learn. There will be a whole generation of people seeing that individuals are not defined by their disabilities and are defined by their own unique personalities.

So it’s all good. Right?

On my timeline this week has been a lot of posts relating to “improved pre natal testing for downs”. It means less invasive testing is now more accurate, reducing the risk of spontaneous miscarriages of “healthy foetuses”. (On that note, I would consider Seb as a “healthy foetus”, something the medical profession would have argued otherwise”)

I’m pro choice. Pro informed choice – and I was told of one mother who had had testing so she could prepare herself if it had downs. The baby WAS identified as having downs, but she continued with the pregnancy. This really does make the testing a great advance.

But come on, I have no doubt this case is an exception. Over 92% of positive pre natal diagnosis’s end in termination. I’ve lost count of the number of times I’ve been asked “didn’t you know when you were pregnant?” Or “didn’t you have THE test?”. It doesn’t take a genius to work out that it’s because people assume if I had had THE test, Seb wouldn’t be here. They may be right – I cannot pretend I wouldn’t have been petrified by the diagnosis when I was pregnant. Thankfully I didn’t know until I had my warm, soft baby in my arms. My baby was real and there was no going back. I then experienced my own inclusion, by having this incredible boy included in my own life and family. And now I know I wouldn’t swap a thing about him.

So, we are making so much incredible progress by allowing people with downs to be seen and heard and valued as individuals. In families, in schools, in communities, in society. Represented in media and advertising, “different” is becoming “normal”.

But just as we sit on the cusp of really, really making positive change, of people with Down’s syndrome being valued as equals, we have made this testing “breakthrough” which ultimately may result in less and less people with Down’s syndrome being born – and therefore in our societies as a whole.

What a really sad and devastating irony.