I struggle with how to approach this week. Here in Canada, it is National Down Syndrome Awareness Week. Some would say it is about raising awareness, which it is. Some would say that it is about celebrating people with Down Syndrome, which it is but the truth is, it is so much more than that.
A couple of weeks ago, I checked in with Ella’s Girl Guide leaders to find out how things are going in the big Brownie room. There are a lot more of them this year and the girls are older. I’m not blind – I watch. I watch girls avoid her. I watch other girls baby her. I watch some question her and then I watch some try to include her – some, even may play with her.
“Maybe if you sent home a letter explaining Down Syndrome that would help,” they kindly suggested. Been there, done that – it was a good thing.
I hear stories from school. Not from Ella of course as she can’t really articulate the broad strokes of her day let alone the details, but other parents tell me. Okay, one tells me and if she didn’t tell me, I would never hear about how one child exclaimed, “Don’t let her kiss you! You’ll get Autism.” But even without hearing the story, I would still know it happens. It’s inevitable because while most children in Ella’s school know her and love her, there are some who will never get past the differences and see the similarities. And it breaks my heart.
It broke my heart when, days after Ella was born, the genetic specialist said she was retarded.
It broke my heart when the girls on Ella’s soccer team didn’t want her to play because she wasn’t as capable on the field as they were.
It broke my heart when multiple schools in Edmonton said they would not enrol Ella because of her disability.
It breaks my heart to see children avoid or grow impatient with Ella.
It breaks my heart to find out that her little bestie had to stick up for her yet again.
And it breaks my heart when children ignore her invitations to play and her eyes swell with tears.
But friends, it also fills me with joy to see her in a classroom where her teacher believes in her and lets her answer questions and take spelling tests.
It fills me with joy to see her play with her friends on the playground after school fully included and not wanting to go home.
It fills me with joy when her ballet teacher calls and says, “How can we make this work?” (because Ella keeps swinging on the barre)
And it fills me with joy to watch Ella love on her sister with so much intensity that it blows my mind how anyone could ever think that her life is not worth living.
But this doesn’t apply to you, to the people reading this. Does it? Do things change when we get older. Do the years automatically warrant maturity and acceptance? Maybe not.
Sure, I can tell you all there is to know about Down Syndrome. I can post videos of highly articulate children with DS but will it change the way you live?
Will you stop using the word “retarded” because you realize how derogatory and hurtful it is?
Will you hire an individual with Down Syndrome if they are qualified?
Will you assume they can instead of assuming they can’t?
Will you speak out against inequality?
Will you educate your children on diversity, inclusion and being a nice human being?
Will you advocate for balanced and fair information on Down Syndrome in a pre-natal setting so that women can make educated and informed decisions?
Will you advocate for inclusion and open your eyes to the benefits of it for all individuals involved?*
Sure, Ella is only 7 years old and most people write her off as “cute” and it may seem like none of this matters, but it does. Ella will grow up one day, hopefully not too soon, and I am going to send her out into the world and I pray every day with everything in me that not only is she welcomed and accepted but that she thrives. So please, be the change I want to see in the world.
Happy National Down Syndrome Awareness Week.
*This list was compiled with the help of my friend Krista Davidson-Flint.