Wednesday, 21 March 2018

Of Gratitude and Pity. | World Down Syndrome Day 2018

As we find ourselves here at the end of the most recent trip around the sun, on that special journey that runs from March 21st to March 21st, I am feeling every one of the emotions all at once. 'Having all the feels' as it's said. So much has happened between the last time I wrote about this day and this time I'm writing about this day and I'm finding myself at a loss for words. Which really is saying something, particularly if you ask my husband because he'll tell you that I've never shut up. So imagine what it takes...

Anyway in this kind of situation, I suspect it is exceptionally positive that I am still talking. Because this is important. Not just to me, but to you. More than you realize.

So where are we now? Do we know what Down Syndrome is? Yep. Check. Six years of it, and still the same third copy of the 21st chromosome.

Next, still loving our son so much it hurts?
Yep. Today a bit more than the last, for the new tattoo decorating my arm, incorporating my life motto and that magical 'lucky few' set of arrows. Draw the bow and let loose (the dogs of war). Over and over and over. That pain worth it for all the other pain having now dissipated. Those early days of sadness and feelings of loss, those feelings implanted by a medical community who would find it simpler to read lists and tick boxes and study thin surveys and recall days of old where people were not people but locked away simply because other people didn't choose to understand them. They are learning, and my job now is to help teach them. Aside from ensuring Rukai has a beautiful and successful life, nothing matters more.

Which brings me to the first part of this round the sun journey. We will start with the less desirable, the less positive, the less joyful, to get it out of the way. We can't ignore it because ignoring things like this is what has got society into this ableist mess in the first place. But we will look it square in the eye, grab it by the shoulders, shake our head and say 'no, not today, no. You're not coming in today. Nor tomorrow. And we will make you go.'

These are the trolls. The haters. The people who mock our loved ones. Those who make people with Down Syndrome and other disabilities the butt of a joke and they hold their bellies with laughter and covet those others who join in like sheep. These people will laugh until the end of time, because these people will never get it. These people will never come round. These people will never be part of my life, and my world, and accept my son as a person who has a contribution to make to society. And you know what? I no longer care. For them I feel nothing but pity, and, if I'm being honest, slight embarrassment for their total disregard for what makes humankind amazing, and that is that we celebrate our differences, and we welcome everyone to the same grand table called Life. If you want to rock up outside and hang out in the mud with the pigs and throw slop at us, we will slam the door in your face and turn back to our joy.

And there is where I find the Gratitude.

Despite what I was led to expect when our son was born, our world did not come crumbling in on us. In fact, it got bigger. The mist lifted, the sun shone, every other positive analogy for what makes a life better, well...it happened. Every bit of it. We inherited an entire new family that splinters off into a billion different directions. Because it's not just a Down Syndrome family we joined, we became part of the global disability community and THAT, my friends has prised open my eyes and lifted up that huge part of my brain that wasn't doing any work before. Now I'm starting to understand what every marginalized community of people in all our history has experienced. I no longer see people with disabilities and think 'I wonder what's wrong with them?' Because there IS nothing wrong. There is only difference. There are medical complications and things that take health and many that take life, but it is only difference. We all bleed red.

Over this past year I have considered the striking similarity of Rukai's developmental delay to my very slow running pace, how easily I injure, how hard I have to work to improve my running ability. We do not all learn to do things quickly. We are not all good at everything. Equal.

I have considered the disability endured by my aging and ill father that ended in his death five years ago. If we live long enough we will all become disabled in one way or another. Those trolls who mock disabled people will most likely meet Karma one day and she will bite. Such a shame it will be too late to undo all the harm they've caused people in the interim.

I have reflected on something I read recently which took the wind out of me and to paraphrase: if 94% of people who know their child will have Down Syndrome will terminate the pregnancy because they are fearful about what kind of life their child would have, what would the societal 'normal' look like if all those people were allowed to exist? Rukai wouldn't be the only child in his school with DS because there'd be dozens of others like him. I don't know, call me kooky but I'd take a few more, would I be so lucky. I know no one else who lifts everyone he encounters like he does.

If we fear that which we do not understand, how much less afraid would we be if only we were allowed to experience these human differences at greater scale? What if we could learn so much earlier that disabled human beings are not to be feared? Why are we so afraid? And why do we let ourselves live our lives in such a negative place?

No fear. Not here. But I had to have Rukai to know this. I go on and on about it because I want to save anyone who still may need convincing from further years of not knowing how wrong it is to constantly 'other' people with disabilities. It infuriates me because it's just so flat out foolish.

We. All. Bleed. Red.

Back to Gratitude.

I am grateful for the gift of my son.

I am grateful for what is good about him: his humor, his never ending empathy, that his permanent set-point is love, that he gives a wicked cuddle and has an equally wicked laugh.

I am grateful for all of you who have read this far, who care about this. Who love him, and listen to me. I love you all, more than you can possibly begin to understand.

I am grateful for the very inclusive place we are living, the beautiful school who celebrated every minute of this very special day with us this year. To have taught the children the Makaton and lyrics to the '50 mums' video and live streamed the performance on the school Facebook group today, there are no words to say what that meant to this tired old mum.

But I am most grateful for the foundation builders.

To all the mums, and dads, and brothers and sisters, and children who are now adults, or those who were sadly lost long ago. To all the activists and advocates, the charities and fundraisers and awareness bringers. To all the medical professionals who do get it, and who are working so hard to educate their colleagues. To all the celebrities who are using their fame and status as a force to bring forth a positive change in this life by calling attention to inequality everywhere. For all your years of tireless advocacy that has got us to this place called Today. For those setting down everything else in their lives to keep the conversation going, to 'lean into the discomfort' as I read once and it has stuck with me ever since. I lean with you. I lean hard. The road is long but you have lain it and we are run / walking that road. Until we collapse and have nothing left to give but our last dying breath.

Relentless. Forward. Progress.

Thank you.

It is YOU who I think of when I am wiping back happy tears (again) because of something wonderfully inclusive that's happened in our lives.

It is YOU who I think of when I notice language changing from 'risk' to 'chance', when I see so much less dispersion of the repugnant 'R word' and I know there have been millions of people who've watched a YouTube video and wept and clicked on thumbs up and commented about how much it moved them.

It is YOU who I think of when I reflect on how easily we can mix in our community. Because without all you've done, society would not have come this far.

But still so far to go. Shoulders back. Take a breath. Take my hand. Let's fire that arrow once more and fly.

#theluckyfew
#wouldntchangeathing
#wdsd18

6 comments:

  1. A beautiful and honest post, thank you so much for sharing x

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    1. Thanks for taking the time to read and comment, really appreciate it x

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  2. This is so powerful. Thank you so much for sharing it!

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    1. Thanks Ann, I appreciate you reading and commenting x

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  3. Thank you for being such a poweful force in our community. This post says it all, the ups and downs of the activist/blogging journey, but at the root of it all is the wonderful bond we all share and the love we have for all of our incredible children.

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    1. Ah that's lovely Hayley, thank you for the kind words and for the huge amount of progress you've had a very significant hand in making happen. Onward we all go!

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