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The movie, Song of the Sea, found it’s way to our Kindle Fire. Don’t ask me how; I have no idea – it’s not the type of movie that I am more prone to purchasing. It’s not rounded enough for my Pixar-iefied, Disney-bred taste. It’s an Irish movie, I believe, and while it’s for kids, it’s deep. It had dark edges. It has sorrow woven into it’s marrow, it is heavy, with slathers of joyful wonder and the entire story is dipped in magic.

My kids loved it.

That is actually how I found out it was on the Kindle at all. We wondered what they were sitting so still, watching. We hadn’t seen them do that before (we haven’t seen them do that since either). And watch it, they did. Over and over, again and again. It was as if each viewing of it was the first and enthralled them as it had in the initial experience.

This is the story: “When Saoirse and Ben’s mother mysteriously disappears into the ocean, the two children go on an epic journey to find out the truth about her, and in the process, discover mystical secrets about both their mother and Saoirse herself” The truth of Saoirse herself is that she is a selkie, a creature that lives as a seal in the sea, but becomes human on land.

The selkie is a creature of extraordinary powers, and as the story unfolds, Saoirse’s own powers as a selkie awaken, and she develops the ability to save the spirit world from disappearing forever. Silent since birth, however, she needs to find her voice.

The conch shell flute is the key to just that. In playing it, she is able to sing, and when she sings, she saves the magic world.

This was all very beautiful and moving, but it was just a lovely little story to me. A lovely little story that my children loved, and I left it at that until I saw Moxie standing with a shell to her ear.

And it hit me like a ton of bricks, she is trying to find her voice.

Trying to Find Her Voice

October is Down syndrome Awareness Month in the United States. I wrote a piece for the Huffington Post last year called Beyond Awareness. In it, I talk about how I yearn for acceptance for people with Down syndrome, not merely the “awareness” that October touts. I don’t have more to say about that, because there isn’t a part of me that feels differently.

I still want us all to be working outside the box – to match our good feelings with actual action. Because it’s all very well to pass along cute memes, inspiring messages and little videos. It really is. But it’s not enough.

It’s simply not enough when we have a culture that overall, is okay with treating people with developmental disabilities as less-than. As the ever-funny butt of a joke, deserving of sup-par wages, subject to rampant discrimination and abuse – emotional, sexual and physical.

I’ve spent many an hour thinking about this, you know. Wondering how best to accomplish a revolution, wondering how anyone ever changed a culture to affect real change. Fundamental change, the kind of change that starts from the heart and moves out, up to the head and through the nerves, muscles and bone to spill forth into inspired action.

I think it boils down to focus.

That is, those that want to implement the change will focus on the change that they want to see.

They believe in the change, before they can even see it.

And act in the ways that suit their particular gifts best.

Some of us are gifted with the means to hire people with Down syndrome. Others have a gift of reason and can help explain processes to others, push for political change. Others have the gift of creating, and through their art, can help convey the beauty that lies in us all. Others are gifted in bringing people together – or in raising and identifying resources.

We are all gifted with something that can contribute to focused acceptance; of that there is no doubt.

So where do we come in? Where do I come in? Me, Meriah, mother of Moxie, small child-who-thinks-she-is-a-selkie with Down syndrome? My question – no, my challenge – to myself has been in trying to determine what I bring to the table that can help affect change in some way. I mean, I am not loaded with money, I live off the grid in a yurt, for crying out loud, with uncertain internet access and without phone access at all! With an outhouse to boot! Oh, and I’m DEAF! With freakin’ PTSD and brain injury! Sometimes I feel it’s almost comical, and those small voices in me have their way with me from time to time. “Who do you think you are? What can you do?”

And this is where I step back and remember that my playing small serves no-one, least of all my daughter. Like everyone else, I can focus on what I bring to the table, on what my gifts might be.

Since I love stories and I believe in the power of the story to affect social change, I am focusing on that. I pulled together a site called “A Day in the Life with Down syndrome“. This site is not a month-long deal; this is an ongoing project that seeks to capture stories and moments in the lives of people with Down syndrome.

This project joins the “Pro-Information” Movement; that is, the the movement that seeks to give women information about what a life lived with Down syndrome looks like. It tries to battle the eugenics movement against people with Down syndrome through information and conscious choice, as opposed to forcing people to a pro-choice or pro-life side. The “Pro Information” Movement is neutral and stands firmly in the camp of information.

And so, even with my disability posts now being posted on Two Thirds of the Planet and not on this blog, I wanted to share this project and hope that you can join and share in the way that you can.


Let us help those with Down syndrome find their voices.

A Day in the Life with Down syndrome

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One Comment

  1. We watched this yesterday and I cried my eyes out at the end. But it was so good! Totally going on my Christmas list, thanks for the recommend!

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