My son is one of a billion people with disability

In Australia, where I’m from, around one in five of us have disability. In the UK, it’s almost one in four. And yet, despite the considerable odds of birthing a member of this cohort, very rarely is this possibility broached with expectant parents. While we read up on breastfeeding, sleep training and developmental milestones, we don’t dare to consider that our child might not play by the rules. Unless, of course, we are forced to.

After a fairly stock-standard pregnancy, Arlo, my son, sustained a brain injury at birth. The doctors said we’d need to ‘wait and see’ what this meant. My partner, our parents, friends, colleagues and anyone who met our charming blue-eyed newborn insisted, ‘He will be fine’. Six months of unmet motor milestones later, Arlo was diagnosed with cerebral palsy.

In the weeks that followed I clung doggedly to denial and cried a lot. A hefty schedule of weekly paediatric therapies commenced, and as our parenthood experience veered further and further away from the norm, I struggled to accept what was happening.

What helped most, in those early days, was Arlo himself. The kid has some serious spunk and smiles with his whole self. It was hard to be sad when he was around.

I knew nothing about cerebral palsy and still don’t know much – only that it covers a broad range of movement disorders. Arlo has quadriplegic cerebral palsy. For him, this means that at seven years old, he can’t sit, stand or walk unaided. He communicates through a very snazzy device that generates speech from his eye movements. He’s also had a gastrostomy tube placed and eats blended meals that we syringe through a tube, straight into his tummy.

Seven years ago, if you’d told me my son would live with profound disability – and wouldn’t walk, talk or eat, in the traditional sense – I would have been devastated. Back then, I was of the wildly misinformed belief that disability was a tragic, terrifying, life-destroying thing.

Boy was I wrong.

While reeling in the uncertainties of Arlo’s diagnosis, I donned my journalist cap, reached out to dozens of parents across the globe who are raising kids with all kinds of disabilities, and begged them to help me. ‘What did you do to feel better at the start of this gig? How do you feel now? Tell me this isn’t what I think it is!’

What resulted was a book called Special: Antidotes to the Obsessions that Come with a Child's Disability, bursting with the collective stories and advice of more than 50 parents, people and professionals in the disability space, all of whom assured me, it will be okay. And I can tell you now, myself, that it is.

Arlo has opened my eyes to the diversity of our world. To a colossal community of people with disabilities and families who are living full, interesting and, for the most part, very ordinary lives. He’s also made me aware of the enormous amount of change that needs to happen so that people like me don’t think that birthing a child with disability – or that disability, in general – is anything other than a naturally occurring thing.

Disability needs to be better represented across every facet of life – from education to the media, employment and politics. Disabled perspectives need to be elevated, not just on ‘awareness’ days, but on every day.

If people like my son – and the world’s one billion people with disability – are properly included in our communities and cultural markers, our response to a baby born with disability won’t be, ‘I’m sorry’. It will be, ‘Huge congrats! How can we support this kid to be who they want to be?’

It’s been incredible to see the impact of Arlo simply attending mainstream educational settings and showing his teachers, peers and their parents what his disability means. How he’s a kid, like any other, who happens to need a bit of help to muck in. How without saying a word, he makes friends, shares jokes, and has mastered the influential art of innocent flirtation.

If you are a new parent to a child with disability, I promise you, this isn’t what you think it is. That kid of yours is going to challenge you, broaden your perspectives and enrich your life in ways you never could have imagined.

If you are a parent to a typically developing kid, please educate yourself and your family on what disability is. Know that it’s not something to be pitied, or treated with charity, or be inspired by. It’s human, it’s common, and it’s simply a part of life for families like mine.

In the words of teacher and wheelchair user Kristine Napper, which she shares in A Kids Book About Disabilities, “Being normal means being different. Having a disability is one of the MANY ways to be normal.”

Melanie Dimmitt is a freelance journalist, author and broadcaster. Since her debut book, Special, was published by Ventura Press in 2019, Melanie has written, spoken, podcasted and advocated far and wide for parents travelling not-so-typical paths. She hosts the NDIS Know-how podcast and publishes The Blend, an annual lifestyle magazine for the tube-feeding community.

Let’s clear out the complexities of care. Try Hibi for free here.

Want to share your parent-carer story? We’d love to hear it. Get in touch with our team at hello@hibi.health