For a long time, I’ve known this apartment might not be my forever home. I’ve thought about moving more than once, for all sorts of reasons. But every time I did, I ran into the same problem.

I couldn’t figure out how to replace home.

I could replace the apartment. I could replace almost everything else. But I couldn’t replace the life I’ve built here.

The strange thing is that I know I could probably find a “better” apartment. Bigger. Newer. More accessible. Maybe even one I’d own.

But home has never been about square metres or stone benchtops.

It’s about the life I’ve built inside four walls.

When I moved in, it was just an apartment. A stepping stone to wherever I was going to end up. It was never supposed to be my forever home, even though part of me wanted it to be.

This place soon became where I learned how to go out on my own, walking out the door with no one knowing where I was.

It was where I learned I was capable of far more independence than I’d ever imagined.

I could manage everything myself. I could be an adult who was responsible for my own life. Yes, some things weren’t done on time, or at all, but I kept myself alive.

For a while, I learned that independence wasn’t free. Every bit of freedom I gained seemed to ask a little more of my body in return.

This apartment has seen more versions of me than almost anyone has.

It’s seen me go from depending on people for almost everything, to reducing my supports to what was necessary, and then back to needing full-time support again. It’s where I learned that my body has limits I can’t simply ignore, no matter how determined I am. For a while, I could push through almost anything. Eventually, my body stopped letting me.

It’s where I came home after brain surgery. It’s where I lived through some of the darkest moments of my recovery, wondering what my future was going to look like. But it’s also where I slowly began putting that future back together.

It’s where Winter came home. It’s where I admitted writing wasn’t just something I enjoyed, but something I wanted to build a life around. It’s where an apartment quietly became the backdrop to the most important years of my adult life.

Somewhere along the way, without me ever really noticing, it stopped being the place where I lived.

It became home.

For years, that thought has sat quietly in the back of my mind. One day, I might have to leave.

Recently, it’s become harder to ignore.

As the disability sector changes and conversations around housing, supported accommodation and the future of the NDIS become increasingly uncertain, I’ve found myself thinking about home more than I ever used to. Not because anyone has told me I have to move. Not because I’m planning to. But because I’ve realised that something I’ve always assumed would be there suddenly doesn’t feel quite as guaranteed.

I currently live in a Specialist Disability Accommodation property by myself. It’s the home that has made my independence possible for the last six years.

I’m incredibly fortunate to have it. A lot of people and I fought tooth and nail for me to get this property.

But like many people with disabilities, I’ve found myself paying closer attention to conversations about housing and the future of disability supports than I ever used to. Not because my circumstances have suddenly changed overnight, but because those conversations have reminded me that even the places we feel safest can also feel uncertain.

This is not just a house to me. I’d already been living independently for two years. But moving here transformed what that independence looked like.

For the first time, housing wasn’t consuming every spare dollar I had. I could focus on living instead of simply trying to stay afloat. My doors are automated. I’m in the middle of the CBD, so I’m not far from anything.

I have grown so much as a person here. I’ve learned how to go out reasonably independently and built a community of people who know me and care about me. I’ve become a completely different person, someone who knows what she wants in life, most of the time.

I’ve brought friends here. Occasionally, even a date. I came home here after brain surgery. I rebuilt my life here, more than once. Winter came home here, and I became a mother. I decided that writing was the only thing I wanted to build a career around.

Somewhere between all of those ordinary moments, I built a life that was for no one but myself.

I used to think I couldn’t imagine leaving because I loved the apartment. Now I realise it was never really about the apartment, at least not completely. It was about everything that became possible because of it.

I don’t know whether this apartment will be my forever home.

I hope it is.

But I finally understand why the thought of leaving has always felt so impossible.

I wasn’t trying to replace an apartment.

I was trying to replace six years of becoming the person I am today.

Writing an essay is the last thing I’ve wanted to do for the last two weeks, but especially this week. I have so much going on in my head and life at the moment that I just haven’t felt like writing.

But I have to. This is my job now.

I’ve already come so far with this publication that missing a week or two because my life is a shitshow behind the scenes has just felt wrong. So I’ve kept showing up.

I could talk about a lot of things, but most of them don’t belong on the internet. At least not yet. They might one day. But right now, most of it is best left in real life.

So while I’m not exactly experiencing writer’s block, I am in a way.

The problem isn’t that I don’t have anything to say. It’s almost the opposite. There are too many thoughts competing for attention, too many conversations I can’t have publicly, too many half-written essays sitting in my head waiting for a day when they’re ready to exist.

There are so many essays I want to work on, but these last two weeks I’ve been working against a lot of forces that are out of my control, and the fact that I’m still making sure I’m publishing feels like a win.

The strange thing about turning writing into a job is that inspiration stops being a requirement. You don’t get to wait until everything feels calm or until life gets out of the way. If you want to build something, you have to keep turning up, even when your brain would rather be somewhere else.

This week has been one of those weeks.

That’s not unique to writing. It’s true of almost any meaningful work.

Some weeks, you’ll produce something you’re incredibly proud of. Other weeks, you’ll simply keep the promise you made to yourself to show up.

I’m beginning to think both are equally important.

I used to think the hard part of writing was finding something to say. It turns out the harder part is deciding what not to say. Every week, I make hundreds of tiny decisions about what belongs in an essay and what belongs in my life.

This week, those decisions left me with this piece.

It isn’t the one I planned to write. But it is an honest one.

And for this week, that’s enough.

I’ll correct that. I burned out a couple of months ago, at a time when I just had to keep going because I didn’t have a choice. And then kept going, even after the day I kept saying I’d let myself crash.

That day was a month ago, and besides the days my body chose violence, I haven’t stopped.

The idea of stopping feels impossible. I now have a business that expects weekly output. And yes, I know I’ve built this engine of hell myself, but this is what I need and want to be doing. I can finally see a clear business model where I can make a shit ton of money doing what I love. And I don’t want to give up on it.

The funny thing is that I was probably constantly burned out before DBS, but I was able to shove the truth deep down below a thick layer of grit, stubbornness, determination and the overwhelming fear of disappointing people.

Before DBS, I could push through almost anything. The consequences still existed, but they arrived later. Sometimes much later. I could finish the competition, the project, the work week, and the crisis. Then I’d collapse when nobody was looking.

Even my collapse usually looked somewhat productive, unless I was around people who understood how hard I was working, then I could kind of just collapse for a bit.

I could pretend I was fine for months on end.

My motto was there’s no rest for the wicked. That sentence was repeated in front of me until I believed it. And it is a great motto to live by, especially when you move ten times slower than most people.

I grew up surrounded by people who admired grit. The ability to keep going no matter how tired, sore, stressed, or overwhelmed you were wasn’t seen as dangerous. It was seen as admirable.

Somewhere along the way, I learned that rest was something you earned. Something that happened after the work was done. The problem was that the work was never done.

Now my body doesn’t negotiate. It sends the invoice immediately.

Sadly, DBS makes it impossible to ignore what my body is telling me, and that’s the worst part.

If I bury the invoice under obligations, timelines, or too full a plate, my body eventually finds a way to crash-tackle me into paying at least some of the debt.

I know I should probably say how grateful I am to have been taught that pushing myself way beyond my limits indefinitely was breaking me. But when your only success mechanism was breaking yourself for the first twenty-three years of your life, it stops working. You kind of have to learn better strategies from scratch. None of which works anywhere near as well as ignoring your body.

After three years, I still have no clue how to make grit overpower the ever-present exhaustion. Or even how to fix that exhaustion.

The programming that makes me less tired does very little for my dystonia, and yet, my body is the only reason I have this thing.

I know I’m a lot healthier now, I’ve learned to eat better, to rest, to say no to things (occasionally, of course) and to just listen to my body. But this version is still nowhere near as effective as the kid who could just do it all and pretend she was perfectly fine.

I think I’ll always be grieving the person who could just keep going. The person who just white-knuckled her way through life and maybe took a few days off every few months, if she was allowed. That person got shit done.

The thing I keep forgetting is that she also paid for it.

I remember the achievements, the projects, the competitions, the impossible deadlines that somehow got met. I remember being able to push through almost anything.

What I don’t always remember is the cost. The pain. The exhaustion. The crashes that happened behind closed doors after everyone else had gone home.

Maybe that’s why this is so hard.

I know this version of me is healthier. I know she’s kinder to herself. I know she’s learned things the old version never did.

But some days, especially when I’m tired and behind and staring down another deadline, I still miss the person who could simply decide to keep going.

Even if she was breaking herself to do it.

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At least, that’s the fun way to say it.

Really, a team of neurosurgeons drilled into my skull, implanted a couple of electrodes deep inside my brain, and ran a pair of wires to a battery pack in my chest. A day later, it was switched on and started sending electrical pulses into the parts of my brain responsible for movement.

“Cyborg” is shorter and a lot more fun.

On June 8, 2023, I underwent Deep Brain Stimulation surgery. The goal was to reduce the dystonia caused by my Cerebral Palsy. However, at the time, my primary motivation was much simpler than that.

My right shoulder hurt. And that’s the only body part that works.

Years of involuntary movement and constant use had left me with bursitis that was making everyday life miserable. I wasn’t lying awake dreaming about reducing dystonia. I just wanted my shoulder to stop hurting so I could get back to living my life.

Looking back, it’s tempting to tell this story as though a shoulder injury eventually led to brain surgery. That’s certainly part of it. By the time I underwent DBS, my shoulder was one of the biggest reasons I wanted it.

But the truth is far more complicated than that, and my story begins years before that day.

I first heard about DBS when I was about to finish high school, I think. Maybe it was earlier?

I’d known of a woman like me for years who had undergone the surgery and achieved incredible results, although I hadn’t met her in person yet.

I finally met her in 2017 at a conference and saw how much control she had over her body.

In late 2018, I was in the middle of my first very hyper dystonic period and no one knew why or how to stop me. My legs were stiff and I had no clue how to control them for longer than about five seconds. The workers I had at the time were older women who had back problems and all those lovely health issues that come from caring for people for years.

I was eighteen and trying to make decisions about treatments that I knew could eventually lead to brain surgery, with very little information and even less understanding of what those decisions would mean for my future.

I was not ready.

Looking back, I’m fairly certain I was just going through puberty while also putting my body through an unreasonable amount of stress, and I had a support network of people who were quick to react and didn’t really understand Cerebral Palsy. No judgement here, though, I’ve only just started understanding it myself.

When I was starting to think about treatments for my dystonia, I first wanted to try CBD, knowing that it would have been the easiest and least invasive treatment.

Luckily, my GP was sceptical of CBD and instead wrote me a referral to my first neurologist.

I went to my first neurologist appointment, and he basically laughed at the CBD idea, saying it was just going to be a detour from the inevitable surgery. Instead, I was put on a medication called Artane.

Boy, oh boy, if we thought my body was uncontrollable before that appointment, we sure as shit were not prepared for this medication.

Artane was supposed to reduce my involuntary movements, but for me, it did the exact opposite.

After about a week on Artane, my movements worsened to the point that the tricks that I’d used to kind of control my body for the last eighteen years had no chance of working.

The fun thing about being young and stupid is that doing things to keep certain people in your life seems like a rational decision.

The person I loved most in the world started really struggling to provide my care because I just never stopped kicking. Every change became a wrestling match that ended in tears or yelling or her turning away from me because she just couldn’t do anything without getting hurt.

Since the CBD was a no-go and the Artane had just made things worse, the only option left was Deep Brain Stimulation.

My local neurologist quickly referred me to a more specialist team to discuss and begin the DBS process.

I remember sitting in one of the appointments where we were talking about DBS in a serious way, and it hit me. This was no longer a hypothetical question; we were talking about brain scans and surgery.

There is a surprisingly huge difference between knowing that I was considering brain surgery and knowing I was considering brain surgery.

Even though I’d dragged my mum and worker to Sydney for one of my last neurologist appointments before getting surgery, and we were meeting the doctor who would be performing the surgery, it suddenly hit me. I was about three appointments away from letting them cut my brain open, and I didn’t actually want that for myself. I was going to be doing it for other people.

To this day, people still don’t understand how I didn’t realise it was brain surgery. The concept itself is way too easy to understand, but once you start to actually understand what it means, it’s fucking terrifying. Especially when your brain is your most important asset.

At eighteen, I was terrified the surgery would change who I was and affect everything I was doing. The kid deserves a gold medal because she was right in one sense. DBS does change you, a lot more than you’d expect, but not necessarily in the ways an eighteen-year-old thinks it will. My personality, ambition, and everything like that did not change, but everything else did. You no longer think certain things are important, and you value and prioritise very different things.

Unfortunately, DBS is one of those surgeries you need to want for yourself, because getting through everything that follows requires a level of commitment I didn’t have at the time. At eighteen, I didn’t understand this, but I must have had an intuitive sense, because that kid didn’t want the operation for herself, and once she was standing on the edge, she could no longer pretend it was fine.

I have no idea how I realised that, but thank fuck I did.

Going through the surgery and recovery and the endless programming and adjustments to life is not something you can do solely for the sake of other people’s benefit. I wish it were, that would have made the decision-making process a breeze and so much shorter than it was. But, thank god I had that intuition, because I was so not ready.

Then COVID happened, and we paused the process. From that point on, it would be up to me to decide if and when I wanted to revisit the discussions and choose what to do next.

Life carried on for a while.

Then, I fucked my shoulder at twenty-two. Turns out, that was my first actual decline. For a nonprogressive disability, Cerebral Palsy is a bitch.

Even now, I’m not entirely sure how to explain how a shoulder injury eventually led to brain surgery.

The simple answer is that it didn’t.

The surgery wasn’t for my shoulder. It was for the movement that had been slowly destroying it for years.

But even that feels too neat.

I’d already spent most of the past year and a half trying to fix my shoulder in the conventional ways. Massages barely made a difference. I’d been to a physio so many times we had a great relationship. Cortisone was useless because I couldn’t rest my shoulder. Painkillers had become my best friend.

By the time I finally chose DBS, I wasn’t just deciding on pain. I was deciding on independence, quality of life, the future, and what I wanted the next twenty years to look like.

For my 23rd birthday, all I asked for was a break. I’d been working my butt off studying and trying to work full time and my shoulder was literally a liability. If a worker moved my shoulder even a millimetre in the wrong direction, I could be in agony for days. On top of the unbearable pain that I was already feeling.

And I don’t say that lightly. I have an uncomfortably high pain tolerance, so if an injury is bringing me to tears more than once, it’s fucked.

It had gotten to a fork in the road, where I could either continue fucking my body while still doing everything I was doing, completely give up on my goals and accept a life I didn’t want, or give up a few things, make a few adjustments to what I was doing, and get brain surgery.

Brain surgery was kind of the only choice that let me have a chance of living the life I wanted.

None of that necessarily negated the fact that brain surgery is terrifying. I was still fucking terrified, but it had gotten to the point where all of the alternatives were just as terrifying and the idea of operating on my brain was no longer the scariest part.

Within two days of making that decision, I’d dropped out of university, booked a tour of a local day program and made an appointment with the final neurologist I had to get approval from.

When it was finally time to bite the bullet and decide to go ahead with the surgery, I couldn’t get on the operating table soon enough. Little did I know that DBS is usually a last resort decision for almost everyone, when they’ve had enough of whatever symptoms are destroying their lives. That was exactly where I was.

My body was destroying my life. Literally.

When I returned to the process I’d stopped three years earlier, I walked into the office of the neurologist who would soon enough be one of my favourite people on this planet and said four words.

My shoulder is fucked.

Of course, there were many other reasons for getting the surgery, but that was the moment when the four people in that room understood exactly where we were about to head.

You know you’ve found the right doctor when they are genuinely seeing how much they’ll be changing your life and the difference they could make to you. My doctor heard that sentence and saw the state I was in, and was so excited to be able to help me in any way he could.

I soon came to understand that when doctors are excited, it means they have no idea what they’re doing and are really just excited to be challenged.

I was clearly not going to be an easy case, and we all knew this from the beginning. My dystonia was one of the most severe cases ever to be considered a candidate for DBS, at least in Australia.

However, since the main thing I needed to achieve was pain management, the doctor pretty much instantly approved me.

A few weeks later, I was back in Sydney getting put under anaesthesia for an MRI on my brain.

A few weeks after that, I was sitting in the kitchen on my first day at my day program on my laptop when the most important e-mail of my life came through.

I was getting brain surgery in less than three weeks.

In those three weeks, I had to stop taking the anti-inflammatories that were making my life bearable, and I was quickly reminded why I was going to do the thing I was about to do.

The surgery itself turned out to be the easy part. It was everything after the operation that ended up being the most difficult thing I’ve ever done.

I thought DBS was a surgery and that recovery from it had an end. Turns out that it’s a lifestyle.

Knowing everything I know now, I don’t think there are enough words in the English language to express how thankful I am that I decided not to get the surgery at eighteen or nineteen or a minute sooner than I did.

There is no way the eighteen-year-old would have been given the time and space to recover, go through all kinds of hell, get reprogrammed a bunch of times and learn to live in a new sort of life that looked nothing like it did before surgery.

She probably would have been expected to be back on the boccia court and working the second she woke up from the anaesthesia.

Instead, it took fucking years of adjustments, learning how to live with whatever new effects DBS threw me, a lot of time in bed and a lot of acceptance of certain facts. The operation lasted a few hours. Learning how to live afterwards took years.

Three years later, I’m finally in a place where I can say DBS was one of the best decisions I’ve ever made. The journey was one of the hardest things I’ve ever done, and my life will never be the same. But that’s exactly why I’m so grateful I waited until I was ready to choose it for myself.

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Living in one of the scheme’s trial sites, I was one of the first people in Australia standing on the doorstep of a shiny new National Disability Insurance Scheme office. We’d been waiting for this day for so long, and it was finally about to happen. My first-ever planning meeting, where I got to say what I wanted to do in my life and secure the funding necessary to make it happen.

These meetings were now going to be a part of my life until the day I died, which to any other teenager would have been the most boring thought ever. However, I understood that the alternative would be very grim, so an annual meeting to have the opportunity to live a normal life like my peers sounded like a small price to pay.

That meeting was exactly what we’d been promised. A very personal experience where my mum and I sat in a room with a woman with whom we’d become very close friends over the last few months, talking about what we both wanted my life to look like and what we needed to make that happen.

It wasn’t about how we were going to meet goals that other people had set for me, or how much intervention my mum was going to put me through to help me improve. It was about me wanting to spend time with my friends without my parents, about my goals of representing Australia and, one day, moving out of my family home and living independently.

You know, normal life for a teenager, even though I need help in every single aspect of my life. That kid had no idea how hard she’d have to be still fighting thirteen years later to keep the right to live an ordinary, boring adult life.

Mum and I were both expressing how much of a normal life we wanted.

We were also among the first people to choose to self-manage my NDIS plan, and mum was one of the biggest pioneers of that movement, literally writing the initial manual on self-management.

I received my first NDIS plan in August 2013, and one of my first typical experiences was to take my friend shopping and to dinner; back then, this was a huge difference. Before the NDIS, I needed my parents to do everything for me, meaning that I was the kid who was bringing my parents along to pretty much everything. The NDIS meant that I could employ support workers I chose, along with my mum, which allowed me to step into a typical teenage life.

After about six months on the scheme, I found myself getting asked to give presentations in front of hundreds of people who had no business listening to a fourteen-year-old who had no qualifications other than going shopping with her friends and no longer needing her mum to be the only one wiping her arse. You had to actively avoid having to see my face in the disability sector because I was the scheme’s original poster child.

Even today, if you Google my name, you’ll see the many, many speeches I’ve given.

I moved out of my mum’s house into my own private rental at eighteen, and then two years later, after a huge fight and with the help of many people, moved into my little Specialist Disability Accommodation apartment, which I have no intention of leaving except in a body bag.

I may not be a Paralympian yet, but I did get very fucking close. I represented Australia on the international stage. And that dream hasn’t completely died yet; it’s just been delayed by 12 years since I first set the goal.

When my friends were starting to find partners and start families, yes, for a few years, my life looked very different. Instead of going straight to university after school, dating, or any of the fun stuff, I played high-performance sport for two years and built a career as a public speaker. Went to university way later than my peers and then dropped out after a year. Then had surgery that put my life largely on hold for nearly two years.

But I’m kind of on track now? I adopted my beautiful girl, Winter, over two years ago now, and I can call myself a mum.

I currently have an ordinary life. I have way too many bills and have no financial security other than one savings account I fought very fucking hard to have access to. Between us, Winter and I have about a million health problems, which are a full-time job to manage. I have no stable income other than a government pension, which barely covers our survival, and people are always surprised to learn how small it is. I write full-time, which is a lot of fucking work, but it’s mine and the only way I’m going to be able to have a real job. I play boccia twice a week, with plans to ramp that back up to pretty much full-time.

Yes, I may attend a disability day program once a week, which that kid is rolling in her grave about, but I have a group of people who genuinely care about me, and I love each of them. That’s the only place I can let myself be just a person with disability for a couple of hours, until I return to the reality of my life and remember that my job never ends.

The initial promise of the scheme was to let the millions of Australians with disability have choice and control over their lives. That was going to be achieved by giving everyone on the scheme individually built plans with the funding for the reasonable and necessary supports needed to meet our goals.

Over time, however, the conversation changed.

The NDIS stopped being discussed as a social reform designed to give people with disability ordinary lives and started being discussed as a cost. Every year brought another headline about how much the scheme was growing, another discussion about sustainability, another debate about whether participants were receiving too much support.

The problem with measuring a scheme like the NDIS is that the outcomes are often incredibly boring.

The return on investment isn’t a person with disabilities suddenly becoming independent and never needing support again. The return is someone moving out of home. It’s having friends. It’s getting a job. It’s representing Australia. It’s owning a dog. It’s paying bills. It’s building a life.

In other words, it’s everything I just spent the last thousand words describing.

The scheme that allows me to live an ordinary life, like anyone else my age, is currently under the biggest threat we’ve seen.

For the first time, I am actively making contingency plans for losing parts of the life I’ve already built.

I’m not using government money to do anything other than live a boring arse life. I work, play boccia, go to the many appointments that keep me alive, and I run a house. I’m just a 26-year-old trying to figure out what the fuck to do in life.

Over the last few years, however, participants have watched the scheme move further away from that original vision. New rules, tighter interpretations of reasonable and necessary, increasing bureaucracy and a growing focus on cost containment have changed the relationship many people with disabilities, and their families have with the scheme.

They say these reforms are about sustainability, fraud and cost containment. Whatever the motivation, the result is that people like me are now making contingency plans for losing parts of the lives we’ve already built.

Even participants with lifelong disabilities and well-documented support needs are now being asked to prove what hasn’t changed repeatedly.

I’m never going to need less than 24/7 support. I tried once and broke my body (hence needing brain surgery). While yes, I can keep myself alive, my quality of life was almost none. I had people coming in to meet my personal care needs every few hours, and a sleepover. That was it. I could handle an independent life outside needing people to feed, water and change me, because that was what is sold to people with disabilities who have the capacity to manage themselves. But, between managing people, managing a house when only a few people are good at keeping you updated on what’s in your pantry and fridge, working, getting taxis everywhere because you can’t just jump in your car and drive, making sure you’re getting the right staff rostered on so you’re not stuck training people by yourself, independence in the sense they usually talk about starts to become one of following your life like a train schedule.

Turn up late for a service, even though they arrived half an hour early, for no apparent reason other than that they felt like it? Better expect a message from the office asking where you are. Also, you’re in trouble because they have places to be and never have time to stay for the whole service, so the very job they’ll gladly charge the full two hours for actually needs to be done in half an hour.

A person you’ve never met turns up with no second person in sight? Congratulations, are you ready to train a stranger even though you’re tired and won’t be able to communicate during critical points? No? That’s your problem.

The other way they want to “cut costs” is by reducing social and community funding by half.

The irony is that social and community supports are often the very things that create the outcomes the scheme claims to value. Friendships. Employment. Independence. Participation.

I’m living the life we were promised thirteen years ago. Boring as hell. Ordinary. In my own apartment with a gorgeous dog and an amazing team of people I help employ. When there’s a new reform being announced on social media pretty much every day, that could jeopardise that? Of course, I’m terrified and exhausted. I’m working hard to build an income so that in case shit really hits the fan, I may be able to afford to go back to a private rental, because having to share a house with another person isn’t exactly something I’m interested in.

Every year, I have to get a bunch of reports written proving that my support needs haven’t changed. After thirteen years, I still need to convince multiple people, most of whom I’ll never meet, that I can’t do anything independently. Get even one word wrong? My life potentially gets deadly.

That’s where they should be cutting costs, not trying to catch people out on vague support needs. These reports, which, in my case, will never say anything other than what they’ve said for the last thirteen years, cost thousands of dollars to write. And even if I trust my therapists to write exactly what they need to, I still go through each of them, word by word, to make sure that whoever or whatever is reading them (rumour has it that it’s now AI) has no reason to cut my funding or do something stupid. And even then, it’s not guaranteed that I’ll get the same funding I need to stay alive, let alone keep the life I have.

Throughout the scheme’s history, the only ambitious goal I’ve had has been to represent Australia at the Paralympic Games, and even that seems ordinary once you see me on a boccia court. The rest of my goals? Boring as fuck. Ordinary life shit.

The NDIS promised people with disabilities that we could live our lives our way. What happens if budgets decide that giving people that right is too expensive?

I don’t want to find out, but I probably will, sooner rather than later. I’ve even had to think about contingency plans for when shit eventually hits the fan.

That’s not very ordinary.

My life looks pretty ordinary. I choose pretty much everything about my life, except what I wear, because it turns out I don’t care about that. I decide when I get up, what I do each day, and who supports me.

I’ve spent thirteen years building the life I asked for in my first planning meeting.

An apartment, by myself. Boccia and work. Friends and bills. Even got a dog that thirteen-year-old me would be shitting herself over, literally. But then again, she’d never met a greyhound.

That’s not something anyone should have to fight this hard to keep.

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A couple of years ago, I started playing Sims 4 after not really playing video games for a long while. I loved that game and I quickly fell in love with the life simulation genre. Of course I did. I’m a writer who loves to tell stories and in these games, I can be whoever I want and build families I can only dream about.

But, as I, and the millions of other Sims enthusiasts, watched the beloved game franchise crash and burn over the last twelve years, there was a new game on the horizon, whose development began being publicly shared six years ago.

I’ve been waiting for the early access release of Paralives for years now, and it finally dropped at about 3am on Tuesday morning. I, of course, did not get up that early because some of us need our sleep, and my worker really would not have appreciated a 2am start to the day. But I did buy and download it as soon as I could.

As the game is built by a team of indie developers, I’m going to try not to be too harsh. I’ve been following the game’s development for years, and I genuinely believe it’s dripping with potential. The bones they’ve already built look incredible, and I’m so excited to see where it goes.

My problems with the game are purely accessibility related, which I should have expected since it’s still in active development. However, since I know the team is committed to diversity and inclusion, I’m sure I’ll be playing this game soon enough. I’ve already sent them an email detailing exactly what is making the game inaccessible to me. And I see many of the content creators on YouTube having similar issues, even if we’re not coming with the same point of view.

I love the slower pace. I love the art style. I love how intentional and alive everything feels. You can tell this game has been made by people who genuinely care about what they’re building, which honestly makes this even harder to talk about because I want to be playing it so badly. This isn’t me dunking on a lazy studio pumping out unfinished garbage. It’s me staring at a game I’ve been excited about for years and realising my body currently can’t access it properly.

After waiting for what felt like an eternity for the game to download, I opened it for the first time and played through the tutorial. While I found the camera movement difficult because needing to use arrow keys when you can’t do press-and-hold actions is a pain in the butt, I assumed there would be more accessibility options once I dug through the settings.

I made my first Para, a woman with two prosthetic legs, because yes, they actually exist in this game, who I was going to pretend had some sort of chronic illness. Exciting, right? I literally spent an hour creating her because the possibilities were endless. For a person who doesn’t usually care for character creation, that is amazing.

And then I realised I couldn’t really play it.

Currently, there are only two ways to move the camera. The main way is to use the arrow keys, which, as a life simulation game, feels weird at best. However, as an AAC user, I find the arrow keys a pain in the butt, as we can only do one action at a time, and there really is no way to program this action, at least not one I know how to do. While most people can hold a key down and make tiny adjustments as they go, many AAC users rely on alternative access methods that don’t work nearly as smoothly with continuous movement. I’m sure there is a way, but I have no idea how to do it in an elegant way.

The other option involves clicking and holding the scroll wheel to move around. As someone who has never used a standard mouse, that wasn’t a viable solution for me either.

The best option I could find, without having to mod the game, was edge scrolling. Which, to put it nicely, sucks when your body is notorious for getting too excited in anticipation of doing anything time-based.

Of course, I’m not the only one complaining about the problems with the camera. But for me, this isn’t a frustrating gameplay issue or something that makes the experience slightly annoying. It fundamentally changes whether I can access the game at all.

The thing is, accessibility in games is rarely about one giant feature that magically fixes everything. Sometimes it’s tiny things. Toggle controls instead of hold actions. More camera customisation. Fully remappable controls. Adjustable movement sensitivity. Alternative ways to navigate menus and objects without drag mechanics. These changes probably sound small to most people, but they’re often the difference between players with disability being included or excluded entirely.

And because Paralives is still in early access, I feel hopeful about it.

I’ve already emailed the team explaining the issues I’m having, and from everything I’ve seen over the years, they genuinely seem like developers who care about accessibility and inclusion. I don’t think this is a case of people not caring. I think it’s a case of accessibility often being invisible until people with disabilities get their hands on something and explain where the barriers are. I’m sure that at some point over the next two years of active development, where there are so many different people trying the game, the accessibility issues will be addressed along with the rest of development.

I don’t think I’ll be waiting another six years to play Paralives. And when that day comes, I’ll be right back where I started on Tuesday morning, creating characters, building houses, and getting completely distracted from whatever I was supposed to be doing.

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After trying to fight off the inevitable crashing and burning that came with the last few months, I lost the battle. Big time.

I knew it was coming, and I’ve had this crash and burn “scheduled” for two months. I’d even been counting down the days and hours until I could finally stop and relax for longer than a few hours.

But, alas, there is no rest for the wicked. Having just started this business venture, I knew that I just had to keep swimming, as Dory would say.

For the past two years, I have been a strong advocate for AI. I love it. I think that if it’s used well, it could be the biggest technological development ever. I’m always talking to ChatGPT about anything and everything.

As a content creator with Cerebral Palsy who uses AAC, the idea that I could use AI to drastically reduce the number of hours it takes to write an essay and the energy I’d have to expend each week was incredible, especially as I have recommitted to publishing an article every week. Do you think I have at least 10 hours a week to write an essay? Fuck no, not without neglecting other aspects of my life.

Especially these past two months.

I started this venture at a really fucking bad time. I had life shit that needed all my attention and resources for several months, or my life and the lives of the people I employ could have imploded – even as I type this article, I still don’t have answers to any of our questions. At the same time, I was preparing for my first boccia competition in two years.

But I knew I needed to start this business when I did, because it was becoming increasingly clear that I might need a regular income sooner rather than later. And the more I watch the system that has given me a life for the last thirteen years being driven into the ground harder than the missiles currently flying around the world, the more convinced I become that the only chance I have of keeping the life I’ve built is to somehow prioritise building an income with unlimited potential.

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To say I was busy was the understatement of the century. Writing an essay on top of the thousand appointments and reports I had to get done was just a ridiculous ask of myself. That’s already a tough ask for me any time, let alone while I’m trying to keep my life from falling apart.

Hell, ChatGPT basically wrote my last three articles from start to finish, with a lot of help from me, of course, because I didn’t have the time or energy to produce them myself. I could have tried to, and a few years ago, I would have tried to do it all myself and then punished myself for not being able to do the full-time jobs of at least three people. Fuck, I still punish myself every time I decide to listen to my body, because that’s just the kind of life I’m coming from.

AI means that I can technically meet every impossible standard I need to meet (why couldn’t it have been around eight to ten years ago, when I was basically doing that much work with no way of reducing how much I had to do?), so I feel the need to finally meet the potential I’ve been told I have. Work a job, build a business, play boccia, all at once, because, after all, there is no rest for the wicked, and I’ll sleep when I’m dead.

I can finally do everything at once with the help of AI. So, I do. I’m still tired and slowly killing myself, but hey. They were right, I can be everything I want at once, I just need to use tools that allow me to do that without killing myself quite as much as I was. And strip myself out of the process.

So, I did the only thing a sane content creator in 2026 does and made ChatGPT my partner at every single step of the process.

I’d discuss what I wanted to try to think about, think about it with AI as my sparring partner, write the bones of the piece I was working on, give that to AI to get feedback and edits, then repeat that cycle until the piece was complete.

That is a surprisingly effective but time-consuming process, though it is quicker than writing and editing everything myself.

However, since I’ve been so busy and focused on other parts of my life, I’ve needed to use AI for most of the grunt work.

I’d talk to ChatGPT about the article’s general idea, figure out which details to include, and guide it to write the article as I would. Then we’d wrestle it into something publishable, or at least something that made the right points and wasn’t a complete disaster. Sometimes I’d write a couple of rough paragraphs to work from, which made it easier, but it would still take a lot of back-and-forth between me and the AI to get a piece together.

But that’s not how I usually write. At all. And you could probably tell from the short sentences and paragraphs that I didn’t write those articles myself.

No matter how much I tried to train AI to write like me, it couldn’t. I fed it every example of my writing I could find, from speeches to old blog posts to a couple of short stories. I spent so many hours talking back and forth with it, trying to teach it to write in my style and avoid all the AI tells the internet loves to point out. But it still produced shit writing.

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When you tell AI you’re writing for Substack, it leans right into its own writing style and just loses all control to write a normal fucking paragraph.

Short sentences.

Lots of white space.

Neat points and arguments that have no life.

So it’s the exact opposite of what my style is. See what I did there?

I also genuinely enjoy thinking through ideas and writing. Sitting at my desk, music on, and just writing has always been a happy place for me. Sure, my body is nowhere near as young as it used to be, and I can no longer force myself to write faster than my natural pace without hurting my shoulder, which means I am slow as shit, but I do enjoy writing. It just takes forever, which, as a content creator trying to keep up with hustle culture, is painful.

After experimenting with a lot of AI-generated content and loving the convenience of having most of the work done for me in just a couple of sentence-long prompts, I chose to go back to writing the first drafts myself while quickly assembling my initial literature review for this newsletter.

I had almost an entire literature review prepared by AI. However, I still needed to read everything, check for accuracy, and truly understand the content because AI can still make mistakes. That’s when I realised that I would probably end up doing just as much work on the review as if I had just done it myself from the start.

What a fantastic time to decide to stop using AI to write! Having no fucking idea how I’m still upright, of course, I decide to return to hand typing everything now.

After getting a reasonable amount of work done in the five days after returning from State Titles, I woke up with a sharp pain in my stomach on Thursday.

That, unfortunately, meant I had to listen to my body for the first time in weeks, so I decided to have a bed day. I had my support worker cancel my appointment that afternoon, and I binge-watched Brooklyn Nine-Nine. For nine hours. Even though I only had two days before I had to have an article ready and scheduled.

That’s the reality of being a business owner with chronic illnesses and disability, unfortunately.

Even after feeling like death for the last few days, I still had an article to produce and publish, so I’ve had to keep going. My business doesn’t grow unless I have content out, so the algorithms like me, and my audience still maybe remembers me.

I’ve literally had to write a couple of hundred words and do all the editing on this article today before I could hit publish. Luckily, the weather was shit, so I had nothing better to do. Although I could have done with another day in bed, I can’t afford that luxury anymore.

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The assumption underneath most reactions is that this is about shortcuts or speed. That only makes sense if you think my work is built the same way as everyone else’s. It isn’t, and it never has been.

I come from a group of people who, for most of history, weren’t out here producing work like this at all. We were written about. Managed. Hidden. Explained. Not heard in our own words. I’m part of the first generation that actually gets to exist publicly like this. So when people jump to the idea that this must be copying something, they’re missing something obvious. There isn’t anything for it to copy. If it sounds different, that’s because it is. That’s the point.

Most people are using AI to produce more of what already exists. Faster content. Cleaner versions of voices you’ve already heard. More volume of the same thing. That’s not what I’m doing. I’m not trying to sound like something that already exists. I’m trying to get something out that hasn’t had the space to exist like this before.

From the outside, my life looks like a speed problem. It takes me longer to say things. Longer to write them. Longer to exist inside a system that rewards how quickly you can produce something. Of course I’m going to use the tools that let me keep up. That part is straightforward.

But AAC was never just a speed problem.

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AAC is autonomy. It’s being able to say whatever I want, however I want, whenever I want, to whoever I want. The second you introduce something that can generate what I might say for me, you’re not just making me faster. You’re shifting control.

That’s the line. Most people don’t even realise it’s there.

This isn’t just an AAC problem. It just shows up here first. This is one of the only places where you can actually see what’s being traded while it’s happening. Speed over control. Efficiency over authorship. Convenience over autonomy. Most people won’t notice that trade in their own lives until it’s already built in. Suggestions start to feel normal. Normal turns into default. Default quietly starts deciding what gets said.

I rely on this. Not in a productivity way. In a if I want to keep up with the world, I don’t really have a choice kind of way. I can feel the difference when I don’t use it. How long everything takes. How much energy it costs. How quickly I fall behind.

So when people say “just do it yourself,” they’re not asking me to work harder. They’re asking me to accept less. Less output. Less participation. Less presence. I’ve spent my entire life fighting against exactly that.

And that’s exactly why I can’t just hand control over either.

I’ve been writing for over twenty years. Long before AI. Long before any of these tools. Every sentence has always taken effort. Every word has always been a decision. If anything, this is the first time the gap between what I have to say and what I can actually get out into the world has started to close.

But the voice still has to come from me. Not because I’m precious about it. Because the whole point of having a voice is that it’s yours.

If I’ve spent my entire life fighting to have one, I’m not handing it over now just because we’ve found a faster way to use it.

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I hate making content. Or at least I hate what that phrase has come to mean. Because what I actually care about has nothing to do with feeding something constantly. It has everything to do with thinking properly. Sitting in an idea long enough that it changes shape. Writing it out. Speaking it through. Letting it feel like something instead of just producing something. Most of the time that comes from my life, or whatever has managed to hold my attention for more than ten minutes. Which is rare enough that I don’t ignore it when it happens.

Writing has never been optional for me. Not in a romantic sense. Not in a career sense. In a very literal sense. If I want to communicate anything at all, I have to build it word by word. So this was always going to be the thing whether I framed it that way or not. And somehow that’s turned into a job where I’m expected to constantly produce. Constantly show up. Constantly exist in a way that assumes consistency is something I can just decide to have. Which is funny when the only thing my body has ever been consistent at is being inconsistent.

I get why the system works like this. I’m not pretending I don’t. Attention is fragmented. Everything is crowded. If you’re not visible, you get replaced. It’s not dramatic. It’s just what happens. But I don’t actually think people have stopped reading. I think they’ve stopped waiting. And those are not the same thing. Even if everyone treats them like they are. The people I actually want to reach aren’t looking for constant noise. They’re looking for something that feels like it was worth the time it took to make.

I’m not going to stop writing. That’s not discipline talking. That’s just reality. Every time I try to step away, it circles back. I end up in front of a screen building sentences again. Which either means I’m supposed to be doing this. Or I’ve boxed myself into something I can’t get out of. I’m not sure which version annoys me more. But either way, it’s still true.

Once I’m in it, I don’t stop in a normal way. I go until something gives out. My body. My attention. Both. That cycle is messy. It’s inconvenient. It’s not optimised for anything. Which is also how I know it’s real. Because if I was faking this, I would have picked something that actually works with the world I’m trying to exist in.

Momentum matters now in a way that feels ridiculous until you realise it actually decides whether you’re visible or not. Once you lose it, you don’t just slow down. You disappear. Getting back isn’t just about doing good work again. It’s about being seen again. That’s a completely different problem.

People treat writing and content like they’re the same thing. They’re not. Content is always there asking for more. It wants frequency. It wants presence. It wants you even when you’ve got nothing worth saying. Writing doesn’t work like that. Writing shows up when there’s actually something to work through. It doesn’t care if that takes time. Or silence. Or space. Or disappearing for a while.

Somewhere along the way, writing got dragged into the content system. Now it’s expected to behave like it. Constant. Predictable. Scheduled. That’s where this stops being preference and starts being pressure. Because I don’t work like that. And I don’t think anything worth writing really does.

If I want to keep up with that system, I have to use AI. That’s not a statement. That’s just reality. Without it, I fall behind. I know that now. Not theoretically. Practically. And that’s where it starts to feel off. Even if everything looks like it’s working.

On paper, it’s a win. I can keep up. I can produce more. I can stay visible in a way I physically couldn’t before. That’s exactly what everyone tells you to aim for. But that assumes your best work comes from constant output. Mine never has.

My best work comes from disappearing. From sitting in something longer than is efficient. From letting ideas develop properly instead of forcing them into shape early. That doesn’t fit neatly into a system that rewards showing up every day. AI makes it very easy to ignore that. It removes the friction that used to force me to stop. It fills the gaps. It smooths things out. It keeps things moving even when I probably shouldn’t be moving at all.

And that’s where it gets uncomfortable.

Because I don’t know where the line is yet. Between using it to support my thinking. And using it to replace the space my thinking actually needs.

The risk isn’t that I’ll cross that line on purpose. It’s that I won’t notice when I already have.

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This has been sitting underneath everything for a while. I’ve been circling it because it’s easier to talk about the theory than admit what I’m actually doing. But at some point that stops being honest and just turns into avoidance.

So here it is.

I use AI constantly. I don’t use it inside my AAC system, not in my voice, not in the part that actually speaks for me. But I use it everywhere around that. In writing. In structuring. In thinking. In getting from what I know I want to say to something I can actually put out into the world without it taking hours I don’t have.

And the way people talk about this makes it sound like you press a button, something appears, and you either claim it or you don’t. That’s not what this is.

It’s a back and forth that doesn’t really stop once it starts. I throw something at it, it throws something back, I tear it apart, reshape it, push it in a different direction. Most of what survives that process doesn’t look much like what came out in the first place. Half the time I already know exactly what I want to say — I can feel it sitting there fully formed — but getting from that to actual words is where everything slows down. That gap is where this sits.

So yes, I use it. Not because I can’t think. Not because I want something else to say things for me. But because the world I’m trying to exist in is not waiting for me to take ten minutes per sentence and then politely rewarding me for the effort.

It changes things in ways that are hard to ignore once you notice them. It changes how fast something comes out. It changes how easy it is to keep going when I would normally stop. And it changes how tempting it is to accept something that’s close enough and move on instead of pushing it further.

If that makes people uncomfortable, fine. Because the alternative isn’t some ideal version of writing where everything is pure and untouched. It’s me getting left behind in a system that assumes speed is normal and that everyone can just show up and produce on demand. I type ten words a minute on a good day. I’m competing in a space where people can now produce more in an afternoon than I could in a week. Ignoring that doesn’t make it go away.

What does get to me is what happens when people notice from the outside. Suddenly it’s not “this is how the system works now.” It’s “you didn’t do your job properly.” As if I’ve cut a corner that invalidates the work itself. When really it’s a reflection of what this space actually demands — constant output, constant visibility, constant pressure to keep up whether that fits how you work or not. I’m not outside of that. I’m in it.

But there are things it doesn’t get to do.

It doesn’t get to decide what I’m saying. It doesn’t get to decide how I’m saying it. It doesn’t get to decide whether something gets published. If I’m not making those calls, it’s not mine — no matter how efficient it is or how good it looks on the surface.

I’ve also noticed that if something comes out too fast, too clean, too easy, I don’t trust it. Not because it’s necessarily bad, but because it probably hasn’t been pushed far enough to actually sound like me yet. That’s the point where I slow it down again. Break it. Rewrite it. Pull it back into something that feels like it came from the way I actually think rather than the fastest possible version of it.

Because my voice isn’t just the idea. It’s the way I move through it. The way it builds. The way it lands. If that disappears, it doesn’t matter how efficient the process was.

The problem is I don’t always want to do that. Sometimes I’m tired. Sometimes I just want to keep up. Sometimes “close enough” feels good enough in the moment even when I know it won’t hold up later. That’s the part no one really talks about. It’s not a clean decision between using AI or not using it. It’s a constant negotiation between keeping up and falling behind in a system that doesn’t give you space to opt out.

So that’s the line I’m holding.

It’s not perfect. It’s not fixed. I won’t get it right every time. But the real risk here isn’t AI itself — it’s what happens when I stop noticing I’m adjusting. When small decisions slide because they don’t seem like they matter. When “close enough” becomes the default and I stop questioning it.

Until one day I’m not choosing my words.

I’m just approving them.

That’s not happening. But only because I’m paying attention to it now in a way I wasn’t before. And that’s about as honest as I can be about where I’m at.

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I’m not.

If anything, I’m going to benefit from it more than most people.

I want it everywhere.

I just don’t think we understand what we’re doing when we put it in places it’s nowhere near ready for.

And AAC is one of those places.

Most of the time, AI solves a speed problem.

And AAC isn’t just a speed problem.

I’m the first to say that I want faster communication.

But this is not how we accomplish that.

Not yet.

AAC isn’t always about getting words out faster.

It’s about having the autonomy to say whatever we want, however we want, whenever we want, to whoever we want.

And that’s not the same thing as speed.

And when you introduce something that can generate what to say for you, you’re not just speeding things up.

You’re changing who’s in control.

I’ve spent most of my life and career fighting exactly this problem.

In life. With communication. Everything.

And now the one place I was confident we’d conquered is going in a direction even I’m not ready for.

And that fucking terrifies me.

I think AI is fantastic. The gaps between me and the rest of society are going to shrink rapidly.

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I can now write an essay in a couple of hours instead of days or weeks.

That massively expands what’s possible for me. Even this newsletter would have become a source of anxiety and stress just a few years ago.

I’ve got more than enough failed blogs and projects to prove that.

But now, three weeks in, I’m already ahead. I’ve got pieces scheduled, so I can take a week off to play in the State Titles without stressing myself out.

Before AI, I could have done that… if I worked all day, every day, for a month beforehand. And ignored my increasing need to rest (thanks, CP).

I know what it can do.

I’m just not sure it’s ready to be inside my voice yet.

And this is where it stops being theoretical.

Because I can already feel the shift happening.

The problem is that it won’t feel like a big shift when it happens.

It’s going to feel fucking fantastic.

It’ll feel like help.

You won’t notice it at first.

Hell, sometimes I can’t tell the difference myself.

And that’s the problem.

That shift won’t just sit in our work.

It’ll sit inside our voice.

It’s a very fine line between choosing our words and approving them.

It already is.

The moment you stop correcting it is the moment everything changes.

I’m already seeing that in my work.

I can get a lot generated with less than a sentence of context. And it almost sounds right.

If I didn’t know what I was doing, it’d be way too easy to accept the first thing it gave me.

If I didn’t already have a way of speaking — a way of wording things that’s recognisable — the temptation would be too strong.

To write half a thought and let it finish the rest.

Faster. Easier. Good enough.

But that’s just with AI on my computer.

Imagine if that were inside my communication device.

How would you know where I end and it begins?

Can you tell by reading this?

Probably not.

That’s because I’m constantly going back and forth with it.

I very rarely accept the first thing it gives me.

More often than not, I’ve already written the bones.

It’s just my editor. My thinking partner.

You think I have time to outline, write, edit, and properly promote everything?

Fuck no.

Especially not at the pace I need to keep up with right now.

And if that ability was sitting inside my vocal cords?

Mate…

I’d never have to write a full sentence again.

And that’s tempting as fuck.

And that’s the trade no one is really talking about.

Because if I’m not choosing the words, it’s not my voice.

And I’ve spent too long fighting for that to give it up now.

She’d just been decommissioned from actual walks, so we were both adjusting to whatever this new version of normal was supposed to be.

I was bored.

Then my phone lit up.

A Messenger notification from Mum. Three letters.

WTF.

This’ll be good, I thought.

It was.

In the worst possible way.

I opened the message and there it was. A perfect image, in the exact style my workplace uses for social media. Clean. Familiar. Corporate.

And then the words.

AI for iOS apps.

I work for an AAC company. One of the big ones.

Before you get your knickers in a knot, I’m very pro-AI. I have to be.

The gap between what I can produce and what most people can is only going to get bigger as this technology improves and spreads. I want it everywhere.

Just not in my AAC system.

Not yet.

I always knew this conversation was coming.

I just thought I’d have more time.

I don’t.

We’re already there.

And if my language is going to bother you, this is your warning.

I’ve thought about this too much, for too long, to clean it up now.

Grandma, you can close this email.

It gets worse from here.

The problem isn’t AI.

It’s what happens when you put it inside the one place I should always have control.

My AAC system.

My voice.

How I communicate, work, write, and access the world.

Because once you start mixing AI with AAC, this stops being a fun little innovation conversation and starts becoming an ethics one.

A big one.

AAC users have spent decades fighting to prove that our words are our own.

So if we’re still arguing about the legitimacy of Facilitated Communication forty-something years later, why in the fuck are we so eager to shove AI into the middle of this before most people even understand what it is?

People already question whether our communication belongs to us.

This just opens the door wider before we’re ready to deal with what walks through it.

And that’s the part that should make people uncomfortable.

Because I’ve been using AI constantly for the last two years.

I know what it can do.

And I know what it can’t.

It still can’t write like me without a lot of back and forth. A fucking lot.

Which means one of two things happens.

Either I spend even more time correcting it than I would just writing it myself.

Or I don’t.

And if I don’t, those aren’t my words anymore.

Yes, I used AI while writing this.

The ideas are mine. The decisions are mine. The words are still mine.

That line matters.

And that’s the clean version of this conversation.

The part I’m still trying to figure out is what this actually means for me.

That’s the part people don’t really talk about.

The moment where something sounds like you, looks like you, is close enough to pass, but isn’t actually yours.

I notice it immediately.

It’s subtle.

A sentence comes out faster than it should.

Too smooth.

Too clean.

For a second, it feels incredible. Like finally, something is working the way it’s supposed to.

Like I’ve been given access to the version of communication everyone else gets by default.

And then I read it back.

And I know.

I wouldn’t have said it like that.

Not the words. Not the structure. Not the tone.

It’s close.

Close enough that most people wouldn’t question it.

But I do.

Because I built every sentence I’ve ever said.

Word by word. Decision by decision.

That’s not a limitation.

That’s authorship.

People talk about AAC like it’s a workaround.

Something to avoid whenever possible.

Like it’s a slower version of something everyone else already has.

It’s not.

It’s a completely different relationship with language.

Every sentence costs something.

Time.

Energy.

Focus.

Choice.

You don’t just “say something.”

You decide it.

You commit to it.

You watch it appear in front of you before anyone else hears it.

So when something skips that process, it doesn’t just feel faster.

It feels wrong.

People assume speed is the goal.

It’s not.

Speed is convenient.

Control is everything.

Slower is how I know it’s mine.

Slower is where I decide what I actually mean.

Slower is where I catch myself before I say something I don’t want to.

Or decide to say it anyway, because fuck you.

If you remove that, you don’t just remove friction.

You remove authorship.

And that’s the part that makes AI in AAC different from everywhere else.

Because in most places, AI is helping you get to your words faster.

Here, it can replace the process that makes them yours in the first place.

And that is a very thin line.

One that’s easy to cross without realising.

Because it won’t feel like replacement at first.

It’ll feel like help.

It’ll feel like relief.

It’ll feel like finally catching up.

Until one day you realise you’re not correcting it anymore.

You’re accepting it.

And once you start doing that consistently, something shifts.

Not all at once.

Slowly.

Quietly.

Your sentences get easier.

Your decisions get fewer.

Your voice gets… smoother.

More predictable.

More acceptable.

Less you.

And the worst part is, it’ll still sound like you.

Good enough that no one questions it.

Good enough that you almost don’t either.

But that gap is still there.

Between what you would have said…

and what you let it say.

That’s the part I don’t think people are ready for.

Because this isn’t just a tech problem.

It’s an identity one.

AAC has always been about proving that we have a voice.

That we are the source of our own words.

That what comes out of these systems belongs to us.

So when we introduce something that can influence, generate, or reshape those words, we’re not just improving a tool.

We’re changing the relationship entirely.

And if we don’t handle that carefully, we’re going to end up back in a place we’ve already spent decades trying to get out of.

Where people question whether our words are really ours.

Where our authorship is up for debate.

Where someone else, or something else, is seen as part of the source.

That is not a hypothetical risk.

We’ve seen it before.

And we’re a lot closer to it than people want to admit.

I’m not saying don’t build it.

I’m saying don’t rush it.

Don’t prioritise speed over control.

Don’t solve one problem by creating a bigger one.

And don’t assume that what works everywhere else will work here.

Because this is different.

And if we get this wrong, we don’t just lose time.

We lose something a lot harder to get back.

Our voice.

There’s a version of this where I take the shortcut.

Where I let it finish the sentence.

Where I accept the version that’s close enough.

Because it’s easier.

Because I’m tired.

Because sometimes I don’t want to spend ten minutes building something I could get in ten seconds.

And that’s the part no one really wants to admit.

It’s not just about control.

It’s about temptation.

Because the trade isn’t obvious at first.

It feels like relief.

It feels like finally not having to fight for every word.

It feels like being able to keep up.

And I want that.

I really do.

But I also know what I’d be giving up.

Not all at once.

Not dramatically.

Just a little, every time I don’t push back.

Every time I don’t fix it.

Every time I let “close enough” be enough.

Until one day I’m not choosing my words anymore.

I’m approving them.

So the question isn’t whether AI belongs in AAC.

It’s what it looks like when it does.

Because it will.

The cat is out of the bag.

If this is going to exist in AAC, I still need to be the source.

It can suggest.

It can support.

But it cannot decide.

If I’m not choosing the words, it’s not my voice.

Not everything that feels slow is broken.

Some of it is doing exactly what it’s supposed to do.

Slower is where I decide what I actually mean.

Slower is where my voice exists.

If you remove that completely, you don’t just make things easier.

You erase the process that makes the words mine.

And people need to be able to trust that what comes out of these systems is actually ours.

Not because we owe anyone proof.

But because we’ve spent decades fighting to be believed in the first place.

We don’t get to go backwards on that.

And none of this works if the people building it aren’t the people living it.

Because this isn’t theoretical.

This is daily.

I’m not against AI in AAC.

I’m against losing control of my own voice.

And if those two things ever become the same thing, we’ve got a bigger problem than people realise.

If you’ve ever seen me speak, you’ve heard this story.

If you haven’t — welcome. This explains a lot about why I am the way I am.

I’ve told it at conferences, turned it into speeches, written it down a million times, and explained it to random people who asked one too many questions.

It’s kind of my thing.

But this is the Substack version.

The full one.

From the animal signs… to accidentally becoming one of the best Minspeak users in the world.

When I was a baby, Mum and Dad took me to Sydney for a week of therapy, where I started learning sign language.

And apparently — this is my favourite part — the only words they taught me were animal names.

Which, even as a baby, was not helpful at all.

So when we got home, I just started making up my own signs and hoped they’d figure it out.

I went through a phase where I’d put my right arm in the air, confidently invent a sign, and stare at my parents like:

Come on. This is obvious.

Eventually, they figured out one of them meant balloon.

And apparently I gave them a look that can only be described as:

thank fuck.

That was the beginning of what I like to call Siobhan Speak.

A few years later, I learned how to sign letters so I could spell things out.

But before that, I was using picture books — basically a DIY version of what we’d now call a PODD.

I couldn’t even turn the pages properly, but I’d try anyway.

And that’s how Mum knew I knew there were more words.

Then came the Big Mac buttons.

You know the ones — someone records a phrase, and when you press it, it speaks.

I refused.

Absolutely not. Not happening.

Because — and I stand by this — I don’t think many people enjoy communicating in someone else’s voice.

Even as a kid, I was like… no.

Then I got a Bob the Builder game.

Tiny buttons. About the size of keys on a DV4.

And I got really good at pressing them.

That’s how Mum realised I could actually access a communication device properly — isolate one finger, hit a target, do it consistently.

That changed everything.

Mum went to a course with my speechie and OT, learned how to program a device, and they organised a trial with a DV4.

She programmed a few things.

And without anyone really teaching me how to use it…

I just worked it out.

I knew where things were. I could have conversations. I got it.

I used that device all through primary school.

And honestly? It worked.

Everyone around me knew how to program it.

If I needed something, it got added.

I did school plays, assemblies — everything.

I wasn’t sitting on the sidelines.

Then came Year 6.

New device.

New system.

And this is where everything changed.

This is where I met Minspeak.

And I hated it.

Immediately.

I’d gone from a keyboard I knew, to a screen full of icons that made absolutely no sense.

Smaller buttons. More of them. No obvious logic.

I couldn’t just type anymore.

I had to find words.

Which, at the time, felt like a personal attack.

I was like… this is bullshit.

I had a few sessions with my speechie.

Some help from my Boccia friends.

And then… nothing.

No one really teaching me.

So Mum told me to explore.

Get stuck.

Look things up.

Figure it out.

And slowly — very slowly — I did.

Not in a nice, linear way. Just… over time.

Because it was faster.

Like, way faster.

At some point, I realised something else.

Mum wasn’t going to keep programming everything for me.

Not because she didn’t care — because she was busy.

And also because… this was becoming my responsibility.

So I waited.

And waited.

And then eventually went:

…right. Fine. I’ll do it myself.

I was using an eco2 at the time, and the programming tools were actually pretty decent.

So I taught myself.

No big moment. No formal training.

Just… needing something and not wanting to wait anymore.

And I just didn’t stop.

Fast forward fifteen years.

I’m now one of the best Minspeak users in the world.

Which sounds dramatic, but also… it’s not wrong.

I was invited by Bruce Baker — the guy who literally invented Minspeak — to speak at an international conference.

(It didn’t happen because of the pandemic, which is still rude, but the invite existed.)

I now work with Liberator Ltd as an ambassador.

I’ve worked on projects that let people control an iPhone through their communication device.

So yeah.

When I say I know Minspeak…

I mean it.

Since then, I’ve done all the normal life things.

Finished school.

Moved out.

Started uni.

Dropped out.

Built a career.

And now?

I run a business.

I speak.

I write.

I build things.

All because I have AAC.

Not in spite of it.

Because of it.

If you’re a parent reading this in the middle of the night, googling everything you can think of…

You don’t need all the answers right now.

You just need to give your child access to communication

and believe them when they show you what they’re capable of.

Because I promise you —

there is a version of your child you haven’t met yet.

And they’re probably going to surprise you.

If this is your world — AAC, disability, communication, or just figuring life out in a body that doesn’t cooperate — that’s what I write about here.

You can subscribe if you want more of it.

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I’m Siobhan Daley. Welcome to my newsletter.

I’ve got no idea what I’m doing with this, to be honest. I’ve been attempting the content creator path for a few years now, and nothing has really stuck, because I don’t like creating content per se. I love writing though, and after running a failed blog - or rather, a few of them - I realised that I don’t want to write for SEO, or whatever. I just want to write, share my thoughts, feelings and experiences, and grow an audience of cool and weird people who are just as interested in the same shit I am, and build from there.

So, who am I and why should you care?

I’m a woman with Cerebral Palsy who uses a power chair and communication device. I’m also a public speaker and writer currently writing my first book. I’m an elite boccia athlete. I’m also a devoted dog mum to my greyhound, Winter. All round, I’m pretty fucking awesome.

Apologies to my family members who will no doubt be my first subscribers, but I need to build this as a place where I am myself, so you’ll have to excuse my language in these newsletters.

I’m building some pretty awesome things, in my opinion. I mean, I’m writing books, I’m starting my own newsletter, I’ve finally succumb to the inevitability of building a social media career - ugh. For someone who is addicted to it, I really fucking hate building a social media presence. But, here I am, giving it yet another crack.

I don’t know what this will turn into yet, but it will probably be a weird and wonderful mix of disability, AAC, writing, sport, and whatever I can’t stop thinking or shut up about that week. Yeah, I’m my own niche. Welcome to the chaos that is my life.

I’ll probably send something out once a week, but if you’re here, you know that life with a disability never goes to plan. If any of this sounds like your kind of chaos, you’re in the right place.

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