Down's: One Mum's Thoughts on a Word that has the Power to Divide

Meet Nathan Bessell, accomplished actor who has Down's syndrome, star of play written for him called Up Down Boy.

If you haven't seen it, you should. 

It was a turning point in my understanding, and in all 

honesty, my acceptance of Down's syndrome in my life. It is honest, brutally so. It addresses the deepest fears we have as parents and celebrates the most wonderful, unique qualities of Nathan's character Matty.

How does it achieve such a life-changing level of insight? 

Because it was written by Nathan's mother, Sue Shields.

I met Sue briefly after watching the play, a quietly proud woman, perhaps shy, perhaps wary of my 'newer Mum on the journey' enthusiasm. But since that time last year we have been in touch, via email. Not often, but at the most needed of times I think we are there for each other. 

In Sue I see a woman who have paved the way 

She pioneered, lived and learnt, often the hard way. I admire her greatly, she has so very much to impart to we novices. Those of us who, despite having our challenges and worries, and who see the ways in which we want to improve the world for our children, have so much more support and acceptance around us than the days when her midwife told her that Nathan had Down's syndrome because she 'had eaten mushrooms during pregnancy'.

I would love to share with you a poem that Sue sent me a couple of weeks ago. It is her opinion of how things have changed, and a call for perspective. To see the bigger picture, for all parents to pull together, regardless of the generation our loved one belongs to...

Sue: 

"I admit to getting very rattled the other day when the story first broke about Natty modeling for Sainsbury's, and I was amazed to see how angry a lot of people seemed to be about the use of the word Down's in the Daily Mail article. [re 'Down's girl']

Now rightly or wrongly this word does not upset me at all, maybe it's because I'm from the era when the word 'Mongol' was in full flow, not to mention the 'R word', and yes, I do find both of these words incredibly offensive. 

But I see that we have come so far now, and I can't see that we will ever be completely free of discrimination or prejudice in this World - in a perfect World yes, but I also believe were it a perfect World then none of us would be here to see it!  

I thought it would have been better to be sharing in your family's happiness, celebrating the step forward for inclusion, not getting so angry and upset over what to me is such an insignificant word."

Everyday of your precious childs life

In the eyes of some he's seen disabled

And some even believe he's got a label

Now I have searched but can't find this tag

Though I've seen the looks and heard the tongues that wag

He arrived like all - without instructions

And along life's highway, well to put it bluntly it's caused ructions

Pigeon-holed, all classed the same

With parents expected to toe the line and play the game

Professionals who think they know best

And a Mothers instincts put to the test

Of course I know exactly when all of this began

At conception he fell foul to Trisomy 21

Down Syndrome. Downs. D.S. - No matter what you say

Discrimination and ignorance are here to stay

Acceptance is important - on that you get no argument from me

But don't become blinkered, for the whole picture is what you need to see

At their own speed, will go each

And achievements are there and within reach

Happiness for our Son.That was our goal

Not to become stuck in a rut - an ever deepening hole

A life that is filled with light, laughter and love

To see beauty in everything from below and above

To find great joy in all that we do

And to know the true meaning of the words, when we say "I love you"

To have family and friends who give him love and respect

If those aren't on offer we press the button that says reject

So please don't become bogged down with needless stresses and strife

Make sure you enjoy everyday of your precious child's life...