Whole and powerful

Killian is a rare disease advocate from rural Queensland. We asked Killian about his life, and what’s it’s like living with complex and invisible disability.

In his own words, Killian is ‘gay, trans, disabled – and wired a little differently, in every way that counts’.

For Killian, most days start with a moment of hesitation.

‘I don’t jump out of bed – I assess. I wait to see if the dizziness is waiting for me, if my legs are steady, or if I’m about to be dragged into another episode,’ says Killian.

Killian faces barriers every day. He describes how he regularly deals with unpredictability, medical gaslighting and public judgment.

‘I live with Episodic Ataxia Type 2. This means I can collapse without warning, lose control of my coordination, and feel like the world is spinning – sometimes all within minutes.

‘My condition is invisible, but I still carry the emotional weight of being disabled in a world that wasn’t designed for me.

‘Most people only see me when I’m passing by, they don’t see the episodes, they don’t know what it costs for me to look “fine”.’

For Killian, judgment and disbelief are regular challenges.

‘I use accessible toilets and get judged. Sometimes I need a wheelchair and get stared at. I’m always too disabled or not disabled enough, depending on who’s looking.’

Killian is open about sharing the emotional impact of these everyday experiences.

‘People with disability spend a lot of energy not only surviving day-to-day but navigating a society that treats us like we’re lying, lazy, or inconvenient. And when you live like that for long enough, it starts to wear down your sense of worth,’ he says.

Killian is clear about what needs to change: ‘We shouldn’t have to prove we’re disabled enough to deserve compassion.’

Over time, Killian has learned to stop pushing himself to meet other people’s expectations. Instead, he’s built a life that works for him.

‘I’ve learned how to listen to myself. I make plans with flexibility built in. I surround myself with people who don’t need proof to believe me. I’ve built a life where my voice can do the heavy lifting when my body can’t,’ Killian says.

When asked what brings joy, Killian shares how small moments of connection matter.

‘Fun isn’t always easy for me – but when I find it, I hold onto it like it owes me rent.

‘When I can manage, I go outside just to be with my cat, Trixie. She’s not always curled up beside me, but she’s always there when I need her. Some days she’s the only reason I move at all.’

Killian creates disability-related content online, which he describes as having ‘equal parts emotional honesty and unapologetic power’.

‘Obsession, when channelled right, becomes power. And I’ve made an art out of staying devoted – to stories, to advocacy, to surviving what was never built for me,’ says Killian.

Books and games are also important parts of Killian’s life.

‘I don’t just read – I unravel. Under Your Scars wrecked me in the best way, and the Cat & Mouse Duet by H.D. Carlton lives rent-free in my bloodstream. I don’t fall for stories. I fall for the monsters inside them.’

‘The game Call of Duty is my escape and my war zone all in one.’

For Killian, IDPwD is a day of recognition, but also a reminder about the ongoing importance of disability awareness.

‘Disabled people exist 365 days a year, whether the world sees us or not,’ says Killian.

‘Sometimes, it feels like people only care about disability awareness when it’s convenient – when it fits into a campaign or looks good on a poster. IDPwD can’t just be a day of empty words. It has to mean something. It has to be part of real change.’

‘If my story makes even one person feel seen, or one person rethink their judgment, then it’s worth it.’