At age three, Hannah asked her parents the question they knew would come one day

I was three years old the first time I realised I was different from other kids. I remember the moment vividly. It was at daycare, one of my favourite places in the world, while my best friend and I were eating lunch. We were sitting at the table – me in pigtails and denim overalls, happily munching away – when Natasha finished her food and stood up from the table to go and play. Not wanting to be left behind, and with only a few bites of my own lunch left, I decided to follow her. I pushed from my chair just as she did, imagining my hair streaming in the wind as I ran off, just as hers had, but nothing happened. What?

Hannah Diviney is now grateful for her mum’s bluntness about cerebral palsy, though it was hard to hear at the time. Credit: Julie Adams

I tried again, a frown creasing the skin between my brows as I stared at my legs, waiting to feel them bend and straighten and push me upright. Nothing. What is going on? Was someone playing a trick on me? Were Rory or Euan holding on to my chair? Again.

This time I closed my eyes, waiting for the sound of the chair sliding backwards. But it never came. Why couldn’t I do this? Was something wrong with me? It had not yet clicked that I needed help to get into the chair or that I was the only one who needed a hand to get out of bed at nap time. That other kids could move on their own, while every time I wanted to move, it involved another person lifting, carrying, standing behind me or strapping me into the pram I used before I got my first wheelchair.

No, all of those realisations were to come in the days and weeks that followed, each their own little minefield when reality detonated. My face began to heat, and panic began to flutter in my chest, but I didn’t want to cry in front of the other kids. Even then, something told me that would be a bad move. So I pushed the feelings down and pretended everything was fine, busying myself with watching episodes of H.R. Pufnstuf and drawing frangipanis until Mum came to pick me up that afternoon.

By this age, I was already a deep thinker. I soaked up the world like a sponge, always watching and listening and cataloguing – curious and hungry for understanding. This, coupled with my tendency to be a chatterbox, meant I was forever asking questions. You know those old sitcoms where the kid would exasperate their parents by constantly asking, “But why?” Yeah, that was me.

Back then, Mum and Dad seemed to be the source of all knowledge (I’ve since upgraded to the “Almighty Keeper of Encyclopaedic Knowledge” that is Google), and I was determined to squeeze every last bit out of them. So once I was buckled up into the car, the first thing that came out of my mouth was, “Mum, why am I different from the other kids? Why can’t I stand up?”

I heard the words cerebral palsy for the first time, and became acquainted with the idea that being disabled belonged to my identity.

HANNAH DIVINEY

Mum and Dad tell me that, naively, they hadn’t prepared for this inevitable question. They’d hoped they had more time – and, to be fair, most three-year-olds are more preoccupied with why the sky is blue than medical queries that even world experts couldn’t fully answer.

To Mum’s credit, however, she didn’t bat an eyelid. “Well, you were born with something called cerebral palsy, which means your legs don’t work properly. The signals from your brain to your legs get a bit scrambled and they never end up making their way where they’re supposed to go.”

That’s one of my favourite things about Mum: she’s always honest and has never shied away from answering my questions, even if that meant introducing me to “grown-up” ideas. When I asked her about this she said, “I figured it was better that you knew how the world worked, rather than being given false answers and learning later, on your own, that they weren’t true.”

And so I heard the words cerebral palsy for the first time, and became acquainted with the idea that being disabled belonged to my identity just as much as the fact I had brown hair and dark eyes. I don’t remember how I reacted after that – whether I had more questions or tears. Part of me feels like I might have just sat there quietly, not saying a word, staring out the window. I’m sure I couldn’t fully comprehend the impact these new words would have on my life.

Before this, daycare had been a carefree place of wonder and imagination. Julie, our daycare “mum”, moonlighted as a fairy for birthday parties, and was always making us wands and wings and skirts, enchanting us with fairy tales and tulle and glitter. It still breaks my heart to think that this was the place where my innocence was fractured, and the beginnings of my self consciousness were born.

But it was in my own home one day the next year, when I was four, that my difference truly came crashing down on me. One of my favourite games to play with Dad was our running race. It was our nightly ritual. We had an absurdly long hallway (or perhaps it just seemed that way to my tiny body), and while I shot straight along it in my pint-sized walking frame, squeaking and clattering with no grace or style (walking frames are heavy, clumsy things), Dad would dip out through the door that branched off to our dining room before popping back in at another door at the top of the hallway, his footsteps, somehow, always rumbling through the house a few steps behind my own. I was just faster than him – a better runner, I figured – until one day just before I was meant to start at school.

That night I got into position, ready to taste victory as I always had. The race began and I clattered along, but this time Dad was ahead of me. What? How? I pushed faster, harder – come on! He’s winning, he’s winning, no! Cue the meltdown. I was screaming and crying, face red, throat sore, and Dad just stood there in horror as he watched me go through the Five Stages of Grief, Sore Loser Edition.

Hannah Diviney was named ‘The Voice of Now’ at Marie Claire’s 2022 Women of the Year Awards.Credit: Getty Images

Mum, however, was wearing what I call her “I told you so” face as, unbeknown to me, she had told Dad not to let me win. She knew that once I reached school, the other kids were not going to wait for me, and they would always be faster and stronger. No matter how hard I tried, I was not going to be able to beat them, so I needed to learn to lose with grace. Clearly, she had been right.

Eventually, Mum got me into the bathroom, wiping my face with cool water to calm me down while I took those huge, heaving breaths that only follow after the kind of tantrum where it feels like your lungs might exit your body.

I can’t remember exactly what she said, but it was along the lines of: “I know you want to be good at running, just like you want to be a ballerina, but you’re not going to be good at those things, baby. Your body won’t let you; it doesn’t know how. I’m sorry, but I promise you won’t be angry forever. One day you’ll find something you’re so good at that it won’t matter.”

Although her words had their intended effect – I was never shocked to lose a race again – in the moment, they weren’t comforting at all. How can a child truly understand and come to terms with something that really doesn’t have an answer? What does a moment like this do to a young psyche? Well, it sets it ablaze, burning a hole so large its owner wonders how no one else can see the flare of their distress and the cavern it is leaving behind. Confused and afraid, they do all they can to ignore the wound. They learn to smile, flames behind their gritted teeth, pretending that it’s normal to be so burned up inside.

But, of course, oxygen fuels fire, and every obstinate breath they take only feeds the inferno as it lances hot around their ribs and into their heart, almost turning them to ash as they try to understand the concept of permanence. When it finally hits them that it means forever, until their very last breath, the cavern yawns wider and deeper and becomes a pit into which they pour the molten hot lava of anger and grief and envy that swirls in a river around a hard volcanic rock of self-hatred.

Meanwhile, the world is a funhouse mirror that distorts and emphasises their pain, reflecting everything they are not and can never be. Every book they read and film they watch is a reminder that there are no spaces for them – that no matter how hard they look, there are no movies starring Meg Ryan to show them how things are supposed to work out, or that everything happens for a reason.

They spend 23 years searching for clues of what their life might look like, for others who have made it through the burning and breaking, but all they can find are stories of tragedy or Paralympic success, and these narratives – a two-sided coin of extremes – only make them so damn tired.

I’ll Let Myself In (Allen & Unwin) by Hannah Diviney is out now.

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