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Social media and viral content are one of the ways isolated disabled folks remain connected with the wider world and each other. Having a moment go viral seems to happen most days ending in Y, and I saw an interesting one recently while enjoying my whimsical feed of wholesome audiovisual treats. In between perfect omelette flips and my favourite Instagram homosexual discussing which cheeses he would date and why, a reel from The Imperfects podcast slid into view. A snippet from an open letter read during one of their episodes has gone gangbusters with strongly polarised reactions.
Hugh Van Cuylenberg is filmed at his microphone, tearfully sharing his words for parents of neurodivergent children. He speaks about his child being diagnosed as autistic three years ago, and needing time to process it before speaking publicly.
“I know life is unpredictable, but I never saw this coming. I never anticipated that I might one day experience this amount of pain. I never once thought I would know such heartache. This is the hardest thing I have ever known. I'm sure you feel the same. But, I'm still here, I'm still going. Because, we don't really have a choice, do we.”
Hugh Van Cuylenberg
I’m not here to be the outrage police. Nor am I here to rip a parent to shreds about their choices. That’s already happened in the comments, where we can see as much praise for his generous bravery as autistic adults sharing their dismay in response to yet another statement from the neurotypical world that indicates we are a burden and always have been. In the comments, autistic people were corrected over and over again by people sure that they knew better. As Liz Stringer wisely penned in her song Dangerous “when there’s fighting in the factions, there’s no decisions, just a set of reactions”.
This is tender territory with so many elements at play. Social media is designed for dopamine hacking and swiftly delivered points of view. When the opening shot is an ashen tearful face, it’s designed to elicit a reaction and draw people in to keep watching. Parenting and raising children is a minefield of right and wrong with trial by comments section serving as our modern day town square.
Who gets to have a voice here? Pointing out how unjust the world is for neurodivergent people has already been done at the National Press Club by Em Rusiciano, an AuDHD person parenting three neurodivergent children. While Van Cuylenberg hasn’t shared any statements about his own neurotype, I would assume his solidarity would have surfaced as a member of our community if that was the case. What does it mean that a neurotypical white man crying about it now is widely hailed as novel and selfless?
Reading or watching the letter in full, he eventually conveys how it’s not his child making him sad, but the wider world’s lack of acceptance and understanding. The thing is, most people don’t go on to view the whole thing. They watch a bit and then scroll on to something else, believing they’ve gleaned the core sentiment.
As a perfect human and busy working mum I never react quickly to anything and always read up on a subject, going back in time to talk with key stakeholders so that I can have superior understanding of every issue. Only then will I share my hot takes via scrolls holding elegant scores of golden calligraphy, sung by pudgy angels from atop their clouds directly into the soul of humanity.
Back in reality, I was pissed off when I saw that reel. I had a billion ideas for how he should have spoken about Autism and the most ethical way to use his considerable platform and privilege. I imagine that further down the path learning about intersectionality, neurodivergent joy and nothing about us without us, he may take a different approach. But social media is fast and everyone with a soapbox wants to say their piece, regardless of expertise or lived experience.
Life shouldn’t be an oppression competition with the victor calling the shots. But doesn’t it make sense that the voices of disabled people should be the primary source of information about how to enact meaningful and positive change?
Jasper Peach
Not in a focus-group box-ticking way, where we give our time and expertise for the sake of following bureaucracy. The kind that goes round and round for years as we await safe ways to cross the road and bathrooms we can use immediately. You know, without traversing land and sea to locate the magical key of destiny and wees.
Sometimes what we see when scrolling is so demoralising it’s like a horror movie. It’s triggering and our reactions are valid, even if they don’t fit into the neurotypical culture of being polite in the face of ableism and expressing gratitude for being talked about.
I’ve had a lifetime of my own grief and later felt the collective grief in the broader disabled community, and sometimes I don’t have capacity to compassionately hold views outside our numbers. The lack of action we see around providing an extremely low, yet perpetually ignored, bar of equity is enough to result in hurt and angry reactions at the best of times. We want to protect any child from feeling how we’ve felt.
Tears and vulnerability are one thing, and they have their place. I long to see radical and effective action that goes viral, not just sadness overwhelming people in our vicinity. Injustice is devastating, especially when it comes to children that we love and do our best to protect. I have no qualms about openly sharing these parts of our lives, showing solidarity for those in a similar boat. We can react and share our sadness, but the essential next step is using that emotion as a productive force for change.
I want energised, electric, world-changing shifts to perception of the ways Autistic people can not just fit into the world but be celebrated and prioritised in it. I want our quality of life to be valued, our voices to be centred and our articulate and constant communication about the ways our lives lack equity, to be taken seriously.
Jasper Peach