And So I Make This Wish

An open letter from the disability community frontlines

There's something about the power of music. Lyrics that may have been written with one story in mind, but somehow we find ourselves in them. I wanted to share this with you, because the parallels to the current chaos we find ourselves in as a disability community are striking.

Last night we were sitting in the KFC drive-through—I'm completely out of energy to cook after the insanity of the past 18 months that somehow keeps ratcheting up rather than slowing down—jamming in the car with my 4.5-year-old. We're deep in our Disney era, listening to one of the more recent soundtracks.

**Listen to ‘This Wish’ from the Wish Movie soundtrack while reading - Listen here

"Isn't the truth supposed to set you free? Well, why do I feel so weighed down by it?"

I'm late-identified Autistic. I've lived with chronic illness since my late teens, but it wasn't until recent years that I realised the experiences I'd been battling alone were paralleled by not only the neurodivergent community, but the entire disabled community.

The discrimination. The systems trauma. The battles for support that doesn't exist because you don't quite fit into any system.

I'd hoped that the truth—the knowledge and acceptance of my neurotype—would mean freedom. And don't misunderstand me, I have been freed from so many self-induced barriers... only to slam face-first into more societal ones.

I've not been a stranger to disabling systems. But the weight of navigating this space as a disabled person and parent has been unparalleled.

"If I could show them everything I've seen, open their eyes to all the lies then, would they change their minds like I did?"

The false belief that I had been led to trust in—and I bought it. I ate it up like the good little girl who trusted her elders.

That our government, the system established with "the purpose of helping others," was altruistic and wanted to help me.

The scales have been brutally ripped from my eyes. In 2024, I lost faith in my government. I believed that if I followed the rules, did the right thing, my government would protect and look after me.

Instead, I have watched them systematically destroy the hope and safety that was offered by the NDIS, under the guise of falsehoods.

I distinctly remember talking to my mum about the "Get the NDIS back on track" bill last year. Mum told me how at least it would get rid of all the shonky providers. I told her, "It's not what they're making it out to be, Mum. Bill is like a magician—he's drawing everyone's attention to the 'fraud' or 'money-hungry providers,' but they don't have the actual numbers to give to the Senate. And while your attention is over here, behind the scenes, hidden in the wording of the actual act, is the loss of disability rights."

Not one of the first 65 pages I could tolerate to read back then had any focus on the actual people supported by the scheme. It was all about protecting the agency.

And his magic tricks worked. We got played. I certainly feel like it. The more I discover about the 'reforms,' the more whispers of manipulated data I see, the more I feel used.

To have the promise of actual support, real acceptance waved before your nose, only to watch it cruelly ripped apart before your eyes.

"But when I speak, they tell me 'sit down.' But how can I when I've already started running?"

My first planning meeting—I didn't yet have a support coordinator or therapists who could be my support person. I naively believed that given I worked within the NDIS space and could write reports, I could explain to the delegate what supports I needed and we could establish appropriate funding.

HA! The naivety and trust.

I was told I didn't have the 'evidence.' When I spoke my truth, my lived experience, my knowledge that certain supports could be life-changing for me—I was told there wasn't enough evidence.

When I outright asked, "So it doesn't matter what I say? If it's not in a report, it doesn't matter?" They told me I needed more evidence.

Co-design. Consultation. Listening to lived experience. What jokes these powers that be are playing with us.

Thing is, the disability community and those who worked in this space pre-NDIS—we haven't forgotten what it was like. And it was not a place ANY of us wish to return to.

It is not where we belong.

"This is where we've been, but it's not where we belong"

The day I shared my story on the "It's Now or Never" webinar felt like a turning point. I said that sharing could put me at risk, and honestly, I felt a little overdramatic.

Yet the article Rick Morton shared in The Saturday Paper told me weeks later it wasn't an unfounded dramatic fear.

The stories within our community of retribution because someone dared to use their voice, asked for accountability, demanded transparency—they are real. I've lived them. In every workplace I've ever been in. In my interactions with community organisations. In the phone call I had today with a provider.

The discrimination. The ableism. It's an everyday thing. This fear is a REAL fear.

I look to some of the incredible advocates who have gone before me and think, "If they could do it, I can do it."

I look to the incredible people I support, and I do it for them.

I look at my daughter, and I do it for her.

I look at myself in the mirror, and I do it for the little Giarne who should have had more before.

And I do it anyway, in spite of the fear.

"If knowing what it could be is what drives me, then let me be the first to stand in line"

I believe in the capacity for change. My special interest is in brains. Almost all the work I do has a foundation in neuroplasticity. I see people who never thought they could learn, learn. I see people who didn't think they could leave the house go out and enjoy the community. I see people who couldn't move their arm pick up their coffee and make a sandwich.

I see incredible change.

I am also Autistic. I connect patterns and see the bigger picture in ways others don't always see. I remember working in rehab and not understanding why other people couldn't see the barriers we would have for discharge and rehabilitation like I could. In paediatrics, I would be frustrated that others couldn't see beyond the school year, when the decisions we made and therapy provided for this 6-year-old had consequences for the 18- or 30-year-old they would become.

It was because I could see the patterns and how it all tied together. It is one of the things that makes me really good at my job.

In the services industry, I see the same thing. I can see how, if they changed how they did things or structured systems, it could be so much more.

I am also watching my family burn out. I am feeling it in my soul, running on fumes. I am watching providers leave—good people who only wanted to help. I left my last workplace because I was tired of slapping bandaids on bullet holes, and I'm back at it again.

So I make this wish.

We deserve more than this. We have been here before, and it's not where we belong.

We can be so much more. The world needs our more.