On the day our youngest daughter came into our world I saw you in my mind's eye.
I saw the bitterness etched on your face, I felt your stares, I knew the ignorance in your heart.
You were the reason I thought we would never go out, the barrier I feared would keep us hidden away from view. The negativity that would sap my confidence and zest for life.
As the weeks and months became years, I began to think you didn't exist, that you were a figment of my early shock on this parenting path. I thought perhaps that you were merely a ghost of prejudices past, one long since shut away and forgotten.
Not one single encounter on our 7 year journey has come close to your description.
Then, when I had learned not to look for you, when I had forgotten all trace of thoughts of you, you appeared. You chose your moment well, a time when we could not have been more proud of our strides forward in advocacy and inclusion. You appeared, a physical reminder that we have far to go.
We were riding high on the excitement of returning from London, just Natty and I, where we'd been for the Sainsbury's Back to School photoshoot. Natty was chosen to feature alongside several other gorgeous children in the major supermarket campaign. This was a first, this was a step forward. This was proof that our children are just like any other, that they wear the same uniforms and attend the same schools and get up to the same giggly highjinks and benefit as much from quality education in a world where many children with Special Needs are denied such a right.
The hot train journey was long and we had been occupying ourselves busily for the last 4 hours. We were nearing home, resorting to back up entertainment and snack supplies. When you boarded with your friend.
Natty was in your seat, adjacent to the empty one she should have been occupying. We'd had not time to pre-book, unaware of how long the shoot would last. You stared and told her to hurry up and move because you had a bad back. You chose no pleasantries, you felt a smile too frivolous an addition.
We smiled and did our best. I tried my best, knowing Natty ws dig her heals in, knowing she has a sixth sense for unpleasant people. The tired child is never happy at being hurried, not understanding, always milking her audience.
We smiled as we moved our things away from you, as we unplugged the iPad cable that was trailing across your allocated space on the table. No words were exchanged and could feel the atmosphere, a damp and heavy feeling I didn't recognise.
Once settled I glanced up to see the true look of disgust on your face. It was one of physical repulsion, as if a tiny piece of very pungent excrement had just landed on your top lip.
I though perhaps this was your look, years of hardship might have taken their toll. But as Natty and I chatted and turned our attentions to games, you took out a hankie and began wiping the table where we had been sitting. A few scant crumbs that sat there were briskly swept to our end of the table where they rested on Natty's things. As you worked you said to your friend 'You don't mind when its your own mess do you, but it's disgusting when it's someone else's.'
That someone else was delightful, wonderful, life-changing role model Natty.
I felt more and more uncomfortable, and avoided your gaze. I was tired and feeling stressed now, perhaps I was being over-sensitive.
Natty became more chatty, more demanding, wanting to get up and walk around. She moved across the aisle and set next to a group of women on a cycling tour, holding court. They were lovely with her, captivated by her huge personality.
You said loudly again to your friend 'In your experience of such things, how old do you think she is?' 'Six,' came the answer.
'Of such things!'
Natty, our daughter, has a name and as her Mum perhaps you could have asked me her age by engaging in pleasant chit chat. But no, I was invisible to you. And deaf apparently.
Then it all began to go wrong. The iPad ran out of battery, the other available plug wasn't working. The snakcs tried up and the train filled to bursting. The look of disgust grew more entrenched on your face until it was unbearable and not once did you cast a look of sympathy, one woman to another, or an offer of the use of the working power point. I felt close to tears, wanted to melt away.
Then a lovely bunch of American women on a group holiday arrived and, guess what, they had ticket reservations for the seats we were in.
But now the train was full and the look of disgust on your face was unbearable. We now had to move but had nowhere to go. Our bags were heavy and Natty wanted to stay and entertain the jovial US gang. She was on a happy roll of entertainment, the centre of attention.
Then our saviour stepped up. A jolly man, the antithesis to you and he offered us his seat. With much persuasion Natty joined me there, sitting on my lap. He had clearly sensed my sadness, had seen your coldness, and we began chatting. He told me all about his teenage niece, how she had Down's syndorme too. He told me of her school successes of the challenges she has faced, the support he and his wife try to give her Mum. He really understood. He got it. And he saved us from your disapproving scrutiny.
He restored my faith in humanity and saved me from perhaps saying something to you that I shouldn't. After all, I don't know your history, your past, the reason for that look on your face. Maybe you didn't like all children. Or perhaps it wasn't disgust... but rather guilt.
And more importantly, you were nothing to be afraid of, more a figure to be pitied.
You might also enjoy reading Outshining the Bigots
You can buy our beautiful book I Love You Natty: A Sibling's Introduction to Down's Syndrome direct from Amazon
Natty and I usually stay in a comfortable Travellodge if we are away from home for photoshoots or speaking business. Particularly in expensive cities like London this can be a more affordable option. You can book here.
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