my story – shared life

my story – shared life

28 January 2021

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sisters 1998

The power of story-telling has led humankind, across the ages, to understand where we come from, what our cultural traditions are, how our ancestors reacted to crises and generally provides perspective of our  role, place and time. We are so conditioned to regaling the stories of others that we often don’t realise that the most important story we’ll ever tell is our own life story …

Why is it that we too often see our own lives as unworthy and insignificant? Raising daughters and affirming them as people of substance and worth has unwittingly been a major mission in my life, I now find on reflection. And it seems that it started with having clear expectations and creating communication guidelines showing that words matter.

Erin is 15 months older than Chaeli and she was always expected, from a young age, to step up and help. And she always did, as best as a little one her age could. The expectation of independence and self-help was there from the beginning. In so many ways Erin’s expectations of Chaeli ‘normalised’ her life better than any expectations I had of her. Chaeli could never feed herself very efficiently; those little hands simply did not have adequate strength and dexterity to execute the task of spoon-to-mouth with sufficient food remaining. And forget troublesome items like peas or rice! So I would encourage Chaeli to feed herself first and then she could ask for help when she got tired. It still works this way. But siblings see the world differently. As soon as I started helping Chaeli to eat Erin would say (and still does!): “Stop being lazy, Chaeli, you can feed yourself!”


From littledom Chaeli’s position in the kitchen when I prepared dinner was atop the one-metre wide counter, W-sitting because this was the most solid base she had sitting over one metre off the ground. Yes, she has balance issues and it was possible that she could shoot forward and maybe fall to the ground. But it was more important to raise Chaeli off the floor to eye level so that she could communicate eyeball-to-eyeball with everyone around her. I never wanted her frame of reference being other people’s kneecaps. Calculated risk has always been a thing for us: prospect of falling or prospect of accessing effective communication? It was a no-brainer.

I also remember the double standard employed  when  Erin used to get irritated with Chaeli (she did have to do a lot for/with her and sometimes her patience ran out) and then torment and tease her, knowing full well that she held the upper hand in the mobility stakes. Chaeli’s revenge came one day when Erin was teasing her at close quarters and Chaeli managed to sink her pearly whites into Erin’s upper arm. Everyone was scandalised: Chaeli – don’t bite!! My response was slightly different: Erin – you know Chaeli can’t physically defend herself, so if you torment her and you’re silly enough to be so close to her that she can sink her teeth into you, then so be it. It’s the only way Chaeli can defend herself. But don’t you dare bite Chaeli back, Erin!

I can hear all the educational and behavioural psychologists gasp in horror. It worked. It was a short phase. And then they both moved on. One of my favourite notes from Aunty Jenny (their day mom until they were 3) was written on a torn scrap of paper popped into a lunch box: Chaeli bitten Erin twice today: arm and leg.


So many children would stop us and ask when they saw Chaeli in her wheelchair: “What’s wrong with her?” much to their parents’ horror. This was always a fabulous opportunity to empower all the children. My response was generally: “There’s nothing wrong with her – but ask her yourself.

The potential playmate would then generally ask Chaeli: “What’s wrong with your legs?” and we framed this response for Chaeli: “There’s nothing wrong with my legs – this is the way God made me – they just don’t work the same as yours do.” And then the conversation would grow from there: question asked and answered. Next.

So many lessons in this short exchange where communication is key.

And in such a simple way from the age of three Chaeli took ownership of her own story: claiming her voice, creating a narrative, bringing others into her story of inclusion and understanding.

Just like that.

my story – shared life
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