I usually plan programming periods for weeks and know exactly when and how long they’re going to be, but this time my body was driving me insane. It was noticeably bad to some of the people who know me best, so I decided to take the principles of programming my body that I’ve learned over the last few years and modify them so I could do it impromptu.

To say I currently feel like I’ve been hit by a train is the understatement of the century. I have no idea how I’m functioning right now.

This isn’t necessarily a surprise. My body always takes programming adjustments as an opportunity to ignore all the rules of life and do absolutely fucking nothing. I’ve learned that doing too much or not being in the most controlled environment while adjusting usually doesn’t end well.

Adjustments to my DBS programming basically feel like having a really bad flu for an unspecified amount of time. I feel like absolute death and can experience any and all symptoms at any given point during the adjustment period. It’s a great time!

Until last year, I’d even opt to be admitted to hospital when I felt like I needed an adjustment. Admittedly, though, I usually needed adjustments to more than just the amplitude for the first two years of this journey.

Then, about this time last year, I needed an adjustment again. I really didn’t want to go to hospital, so I effectively shut down my life, sat in my apartment for two weeks and adjusted. I’d finally found a base point that worked, and I knew it was just about finding a higher amplitude that would mitigate the symptoms that were creeping back.

This time, I’ve done no preparation. None of my work is done. I haven’t locked myself in my apartment. I’m still doing most things. I have no plan besides making adjustments every week or so until I feel better.

My body chose the worst possible time to let my symptoms slide back. I’ve just changed the structure of my supports, and I have three new people on the team who have known me for three weeks at most.

But my body needed an adjustment, and I was feeling pretty ordinary by this point. There was no obvious period in the foreseeable future where I could shut everything down for a couple of weeks, and I wasn’t willing to keep putting up with my body until one magically appeared.

So I basically decided to do it on the fly.

After three years of programming, I knew which rules I needed to protect, what I could probably bend and what my body needed to give an adjustment the best chance of working.

The non-negotiable rule is to never do too much. If I can avoid doing something, I will.

Because this programming period is so impromptu, I’m still working through it. My business unfortunately doesn’t run itself, and I still need to write and publish content every week.

I’m kind of doing the bare minimum my Substack requires. I’m writing an article every week, no matter how it comes together. Anything too long or difficult gets pushed to later. I’m on Notes as much as my body and brain allow, which will hopefully help grow my publication in a less intensive way.

The goal this time isn’t to stop doing everything; it’s just to heavily limit what’s taking up my time and energy. I’ve got even fewer spoons than I usually do, and I’m tired very easily.

While I was “planning” this adjustment period, I’d planned to increase my stimulation by the smallest possible step each fortnight. I knew that if this particular experiment was going to work, I needed to minimise the impact of any adverse reactions as much as possible.

What looks like a tiny adjustment on a screen, though, usually isn’t tiny to experience in my body. My body happens to not like programming very much, which is very fun.

It took me over two years and three separate hospital admissions for programming to even find a baseline program that I’m happy with. My dystonia is so complex that we had to try all kinds of unconventional programming methods before finally finding something that worked. Even now that we have that baseline, my body still doesn’t know how to handle the smallest adjustment without going into overdrive.

I’m also not able to physically make the adjustments myself, so I rely on another person to change the programming for me.

When we made the first adjustment this time, I’d planned to increase the stimulation by 0.05. That was the whole point of this experiment: tiny adjustments, plenty of time between them and as little disruption to my life as possible.

Then we looked at 0.05 and decided it was probably too small to bother with.

“Do you want to do 0.1?”

Sure. Fuck it. I should be fine.

I was not fine.

The next day, I quickly remembered why I had planned to do even smaller adjustments as the side effects hit me like a bus.

Programming exhaustion is difficult to explain because it isn’t just being tired. I’m very familiar with being tired. This is the kind of exhaustion where my entire system seems to decide that functioning is optional. Everything takes more effort, my tolerance for doing anything disappears and my body basically demands that I stop.

I’m literally fucking with my brain, so that is, of course, hard on my system.

Except this time, I couldn’t completely stop.

And strangely, that was kind of the point of the experiment.

Completely stopping work for a couple of weeks now requires a fuck ton of preparation beforehand. This time, there was no opportunity to do that.

At this point, I’m two adjustments into an impromptu programming period that I did absolutely no preparation for, and somehow my body is still functioning properly.

I feel like absolute death. I’m exhausted beyond words. I’m doing the bare minimum, and I’m very deliberately protecting what little energy I have. But my body is still doing what I need it to do.

That distinction is huge.

Historically, programming hasn’t just made me feel terrible. It could temporarily make my body significantly harder to manage while we worked out whether an adjustment was actually going to help. That’s part of why I treated programming periods so seriously and controlled as many variables as I could.

This time, I don’t have that control.

I’m adjusting while continuing to live my life, surrounded by people who are still learning how my body works, and hoping that three years of experience has taught me enough to know when I can push the rules and when I absolutely cannot.

So far, somehow, it seems to be working.

I did my second adjustment on Friday, and it’s going as well as it could have gone. I’m still fucking exhausted, but I’m functioning enough to deal with whatever life decides to throw at me without going into hyperdystonia, so I’m going to keep up with it until whenever I’m better. I’m seeing improvements, and my pain is kind of, sort of getting better, so there is no need to stop just yet.

I think that’s probably the biggest difference between this programming period and every other one I’ve done.

I’m not waiting until I feel good before I live my life again.

In the past, programming has been an event. Everything else stopped while we fucked around with my brain, waited for my body to lose its shit and eventually figured out whether whatever we’d changed had actually worked.

This time, programming is just something happening in the background of my life.

Admittedly, it’s a very fucking loud background activity.

I’m still structuring my life around it. I’m saying no to things I don’t need to do, working significantly less than I normally would and resting whenever I get the opportunity. I’m not pretending I can carry on exactly as normal.

But I’m also not putting my entire life on hold until my brain decides it’s happy again.

Three years ago, I don’t think I could have done this. Not just because my programming was significantly more complicated then, but because I didn’t know my DBS or my body well enough yet. Every adjustment was an experiment. I didn’t know which symptoms I could ride out, which ones meant something needed to change and which rules I absolutely couldn’t fuck with.

Now I do.

I’m not suddenly able to tolerate programming without making sacrifices. I’m still structuring my life around it, and it’s still influencing everything. But three years in, I know my body and my DBS well enough to start a programming period whenever I need to.

Even when I have no plan.

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I used to have grand plans. The kind that looked impressive on paper. Making my Paralympic debut before I turned 21, having a career I was proud of, and a life that followed the timeline I’d imagined. Then, somewhere along the way, my biggest goal became getting through the week with my body cooperating.

On paper, cerebral palsy isn’t a progressive disability. Living with it, though, can feel like a very different story. The brain injury I was born with hasn’t changed. My body, however, seems to have missed that memo.

We like to say that cerebral palsy is the gift that keeps on giving. And as I get older, nothing could be truer. Symptoms that appear like they should have nothing to do with my disability, most of the time do. Mental health issues? CP. Digestive problems? You guessed it. Pain? Yes, that too.

Over the last few years, one health problem has become another. Stomach problems became another thing to constantly manage. A shoulder injury eventually led to brain surgery. Those became an endless cycle of appointments, scans, medications, therapy, recovery and trying to work out what my body was going to throw at me next. Some days, simply existing feels like a full-time job, and the health side of things is only half of it.

Living independently with a disability means my life runs on systems. Support worker rosters, funding reviews, service providers, equipment, paperwork, phone calls, emails, meetings, and constantly trying to work out who is responsible for what this week. If something falls apart, it usually becomes my job to put it back together.

People often talk about independence as though it’s a destination. You move out, get your own place and become independent, as though it’s something you achieve once and never have to think about again.

For me, the reality is much less glamorous. Independence isn’t something I achieved years ago and never had to think about again. It’s something I maintain every single day through appointments, rosters, replacing equipment, filling in forms and solving problems before breakfast. It’s work, and it’s work that most people never see.

If someone asks what I’ve been doing this week, it can feel strange to answer. “Not much,” is usually the easiest response, even if it’s false. Three days disappear into therapy, medical appointments, NDIS paperwork and support worker dramas, then I try to squeeze running a business into whatever energy I have left. Somehow that never sounds like a productive week, even though it’s exactly what keeps my life functioning.

Sometimes keeping my life functioning is the achievement. Sometimes making sure I can continue living independently next month is more important than ticking another goal off a list.

I still have big dreams. I want to represent Australia again, build a successful business and create the kind of life I imagined for myself. Those ambitions haven’t disappeared, but I’ve had to accept that my life doesn’t have the luxury of moving in a straight line. Sometimes I sprint towards those goals. Sometimes I spend months standing still while my body catches up. Sometimes I have no choice but to focus on staying healthy enough to keep chasing them at all.

For a long time, I saw those periods as failures. I fought them as hard as I could because I was convinced every second spent recovering was another second I was falling behind.

I’m starting to realise that’s not true.

These days, I know my body has limits whether I like them or not. Fighting them doesn’t make them disappear; it just guarantees I’ll spend longer recovering. Getting enough rest isn’t me falling behind anymore. It’s how I make sure I can keep moving forward. If I’m in bed before five o’clock, I’m probably on track rather than failing.

My life hasn’t stood still. It’s just that so much of my progress happens in ways nobody else can see.

“Work” now means I sat at my desk for a bit and assembled an essay, instead of doing a job someone is paying me directly for and then going to bed once I’ve had enough.

A few years ago, I would have looked at a day like that and thought I’d accomplished nothing.

Success no longer means working three jobs while training six hours a day, as much as I’d like it to. Instead, it looks like me doing the things I need to do to keep my life going somewhat smoothly.

Now I know that keeping my body functioning, my home running, and my business moving—even slowly—is work too.

It might not look like the kind of progress I imagined in my twenties.

But it’s still progress.

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Paralympian. A clear career path. Highly regarded in the AAC field. Keeping up with the impossible standards I’d spent years chasing.

I’d just made my international debut for boccia and had been invited to speak at a conference organised by the man who invented Minspeak, the communication system I use. Things felt like they were heading in the right direction.

Then, four days before my 20th birthday, the world shut down.

Somewhere in the middle of the pandemic, my cerebral palsy also decided it had other plans. The years that followed brought one health problem after another, and my twenties slowly drifted further and further away from the life I’d imagined.

Six years later, I’m nowhere near where I expected to be.

I’m not a Paralympian. Yet.

But the dream is far from dead.

Six years ago, I wanted the title. Now, I think I’ll appreciate everything it took to get there just as much.

Most of the career goals I had have fallen apart, and I still have no idea what the fuck I’m doing most of the time.

Meanwhile, I watch friends buy houses, get married and have children, and wonder why my life doesn’t look like theirs. It’s hard not to compare your life to everyone else’s when they’re ticking off the milestones you always assumed you’d reach too.

I don’t even know if I’d have any of those things if my twenties had gone to plan.

Maybe I’d still be single.

Maybe I’d never have had children.

Maybe I still wouldn’t have bought a house.

But somewhere along the way, those milestones became the way I measured whether I was becoming an adult.

At the same time, my twenties have been filled with experiences I never could have imagined—some I wouldn’t wish on anyone, and others I wouldn’t trade for the world.

Like I’ve said previously, I’m incredibly fortunate to have a house to call my own (for now, at least), even if I don’t own it. I’ve been single for all of my twenties, so I’m unfortunately nowhere near the marriage part, and who knows about my ability to have children.

As the pandemic came to an end, I thought I was finally ready to get my life moving again.

I’d completed a couple of qualifications. After years of relying on full-time support, I’d reached the point where I only needed workers to drop in throughout the day. I enrolled at university. I had plans again.

For the first time in years, life felt... normal.

I wasn’t trying to do anything extraordinary anymore.

I was just trying to have the ordinary twenties I’d imagined.

Go to university. Build a career. Become more independent. Meet someone. Work out what adulthood looked like.

For a little while, it felt like I’d survived the disruption and was finally catching up.

Then my cerebral palsy had other plans.

Instead of spending my twenties chasing a Paralympic team or an impressive job title, I spent a significant part of them trying to keep my body functioning.

One health problem became another. My weeks filled with specialists, therapy and doctor’s appointments. Recovery replaced progress.

Eventually, it all led to brain surgery.

While my friends were finishing degrees and starting jobs, I was learning how to live with a neurostimulator.

By the time I finally came out the other side, my life looked nothing like the one I’d imagined at nineteen.

Once life settled down enough for me to think about something other than my health, I adopted my wonderful little girl, Winter. I know not everyone considers a dog a child, but to me, she absolutely is.

After playing around with more than a couple of careers, I eventually started building a business that I hope will one day give me the freedom I’ve always wanted.

Between a global pandemic, brain surgery, bringing Winter home and rebuilding my career more times than I can count, my twenties became nothing like the ones I’d imagined.

My life hasn’t stood still.

It hasn’t followed the path I expected.

Maybe that’s why I spend so much time feeling like I’m behind.

Not because I haven’t been moving forward, but because I keep measuring my life against a version of adulthood that never got the chance to exist.

Becoming an adult comes with a long list of goals, dreams and expectations.

Mine was written for a woman who no longer exists.

The goals haven’t all changed.

But the path to them has.

I’m still learning how to let go of the map I thought I’d be following.

I know, logically, that my twenties haven’t been wasted.

I know most people haven’t had to recover from brain surgery or rebuild a career from scratch more than once.

I know adopting Winter changed my life in ways I never expected.

I know I’m building something I’m genuinely excited about.

But logic doesn’t stop me feeling like I’m behind.

Maybe one day I’ll stop comparing my life to the one I imagined at nineteen.

Today isn’t that day.

For the last eight years, Amy Shark has been one of those artists.

Every album on repeat. Every song played to death. Dozens of people driven to insanity by my obsession.

Which is why I wasn’t expecting my first reaction to her new album, Soft Pop, to be nope.

I’d woken up earlier than usual on release day, logged into Spotify on the TV in my bedroom, ready for the excitement that always comes with an Amy Shark release.

I hit play.

Over the following 32 minutes, my excitement slowly faded.

I kept waiting for the moment when everything clicked. The moment one of the new songs grabbed me the way they always seemed to.

It never came.

The opening four singles I’d already had on repeat for months were still brilliant. But once the rest of the album started, I found myself waiting for something that never arrived.

By the time the final song finished, I was convinced Amy Shark had finally released an album I didn’t like.

I didn’t hit play again.

I switched over to YouTube until it was time to get out of bed, convinced the streak had finally come to an end.

A few hours later, I hit play again. It was, after all, Amy Shark release day. I’m pretty sure I’m contractually obligated to play every new album on repeat for at least a month.

The second listen was a bit better, but still very weird.

I still wasn’t convinced I liked it.

Yet, when the album finished, I didn’t put something else on.

I just kept telling Echo to play.

Over the next few days, I had other things to do, so the album wasn’t quite on constant repeat like a new release usually is.

Yes, I did still play it more times than could be considered sane. I still looked up lyric videos and learned every word within the weekend.

I was just doing what I do for every new Amy Shark release. Only this time, I wasn’t listening to enjoy it. I was listening because I couldn’t work out why it wasn’t clicking.

The lyrics were the part I struggled with most. I couldn’t shake the feeling that there had to be something I wasn’t hearing. I was learning the lyrics because I was sure I had missed something.

Somewhere along the way, after far more listens than I’d ever admit publicly, I realised I was enjoying some of the songs.

That wasn’t unusual. Plenty of songs have grown on me over the years.

What was unusual was how much patience I’d given this album before I’d reached that point.

I wish I could tell you there was one moment where everything clicked.

One lyric.

One chorus.

One drive in the car.

There wasn’t.

I genuinely don’t know what happened.

Maybe it was habit.

Maybe it was loyalty.

Maybe after eight years of Amy Shark, I’d learned to trust that if something didn’t land immediately, it was worth spending a little longer with it.

Or maybe that’s giving me far too much credit.

I could pretend there was some profound reason I kept listening.

The truth is, at least part of it was because making my support workers listen to Amy Shark on repeat has become something of a tradition.

But that still doesn’t explain why I kept pressing play when nobody else was around.

After a few days, I realised I genuinely wanted to listen to the album.

Somewhere along the way, it had stopped feeling like an obligation.

I still don’t know if Soft Pop will ever be my favourite Amy Shark album.

I still think some of the lyrics are weird.

I still don’t know why I keep pressing play.

I just know I do.

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Technically, I was right.

That afternoon, about four years ago, changed the course of my life.

But it was probably never the whole story.

I’d been signing my whole life. Conversations with my mum could last for hours, and I’d never thought twice about it. Signing was just another way I communicated. There was nothing unusual about that afternoon until my shoulder started to hurt.

At first, I thought it was just a temporary injury. An incredibly annoying and painful one, but surely it would settle down with time.

Because it was my right shoulder, I was nervous. But I also hadn’t done anything particularly reckless. My best guess was that my body was reminding me I didn’t sign nearly as much as I used to. It made sense. I’d moved out years earlier, and most of my communication now happened through my AAC device. I figured my shoulder just wasn’t used to that much signing anymore.

It didn’t feel like a life-changing injury.

It certainly didn’t feel like the beginning of brain surgery.

Over the next few days and weeks, I just kept living my life. The shoulder hurt every time I transferred, used my communication device, drove my wheelchair or reached for something. It was frustrating, but it wasn’t stopping me. I assumed it would settle down if I gave it enough time.

I have an incredibly high pain tolerance. Living with cerebral palsy means pain has always been part of my life, so my threshold for what counts as a “real problem” is probably a little different to most people’s.

Pain wasn’t new to me. I’d already spent twelve years living with a dodgy hip, and I’d learned that pain usually ebbed and flowed. I assumed my shoulder would eventually pull itself into line and let me get on with things.

If it had been almost any other part of my body, I probably would have learned to live with it.

But this wasn’t just another joint.

My right shoulder was my independence. It’s the only limb I have useful control over. Everything I do depends on that arm.

At the time, I was living with as little support as I possibly could. I was determined to be independent. Most people with disabilities know how that ends.

It never really got a chance to rest. At most, it had a few hours while I slept.

That would be enough.

Right?

I grew up hearing “harden up,” and I took that lesson seriously.

For twenty-two years, that was my response to pain. You complained while it was unbearable, then you shut up about it because life moved on and nobody wanted to hear about it anymore.

So I did what I always do. I put my head down and kept going. Even when my shoulder was making me nearly cry, stopping and admitting that the life I’d built was no longer sustainable because of one little joint just felt weak as hell.

At the time, I was studying while trying to work full-time. I loved being busy. I’d finally built the life I’d been dreaming about for years, and I was only just getting started.

Losing the use of that arm was, and still is, simply not an option.

After a few months, it became obvious it wasn’t getting better on its own. So I started with massage and physiotherapy because that’s the sensible treatment order.

We already knew a massage therapist through our support network, so I started seeing him regularly. It helped temporarily, but never enough to solve the problem.

Then I linked in with a physio to strengthen my shoulder, hoping that would finally fix it. I’d commute my way to the gym, which put even more strain on my shoulder unless I decided to walk or catch a taxi. The walk wasn’t the safest route for someone in a wheelchair, and taxis are expensive. Getting there and back became an ordeal in itself.

Managing an injury on the only limb I can rely on is one of the many aspects of disability that almost nobody talks about.

Nothing made a difference.

Until then, it had never crossed my mind that my shoulder might stop coping. I’d relied on that arm for absolutely everything since I was a child. Surely, if it were going to give up, it would have done it years ago. This had to be temporary. I kept waiting for the day I’d move it just the right way, and everything would click back into place.

Wrong.

So very wrong.

I still believed I was dealing with a stubborn shoulder injury.

I didn’t know I was about to spend the next year in physiotherapy clinics, doctors’ offices and radiology departments, desperately searching for an explanation.

Most of all, I had no idea that the shoulder I thought I’d injured was about to lead me to brain surgery.

I’d been diagnosed with bursitis after an ultrasound, so I was put on anti-inflammatory medication and referred for a cortisone injection. Finally, there was an answer. It wasn’t a particularly exciting diagnosis, but it was something we could treat. I genuinely thought we were on the home stretch.

The anti-inflammatory medication actually helped far more than I realised at the time.

The cortisone injection, however, was the worst thing I have ever experienced.

The instructions were to keep my arm as still as possible for the next two days. For most people, that would have been inconvenient. For me, it was impossible.

My right arm wasn’t just my shoulder. It was how I transferred, drove my wheelchair, used my communication device and did almost everything else. There was no way to give it forty-eight hours off. Within a few hours, I was using it again because there wasn’t another option.

I remember thinking I’d probably ruined the injection.

Whether I had or not, it didn’t matter.

The pain never really went away.

So I kept going.

I continued with the treatments because I had to. I still had shit to do, no matter how much pain I was in.

After that, I just learned to live in constant agony.

Some days were manageable. Others weren’t. On the worst days, I couldn’t get through without a ridiculous amount of pain relief.

But I kept going.

I’d fought too hard to build an ordinary life. I was working and studying, just like the majority of people my age. I wasn’t about to let one shoulder take that away.

The problem was that nothing made sense anymore.

The bursitis should have been settling down.

It wasn’t.

Every treatment seemed to help for a little while before I ended up right back where I’d started.

Massage would ease it for a day or two.

The anti-inflammatory medication dulled the pain.

Physiotherapy made sense on paper.

The cortisone injection was supposed to be the answer.

None of it lasted.

Instead, I found myself collecting appointments instead of answers.

Physiotherapists.

GPs.

Specialists.

Scans.

Every time I walked into another appointment, I hoped someone would tell me what we’d missed.

Every time, I walked back out still in pain.

At some point, it stopped feeling like I was treating an injury.

It started feeling like I was chasing an explanation.

My shoulder became so fragile that one wrong movement could leave me in pain for days.

On New Year’s Eve 2022, I had an unfortunate incident that made me realise just how fragile it had become. I was out of action for two days because I was terrified of making it worse.

Over the next two months, my shoulder was killing me almost every minute.

But I was still going.

For my twenty-third birthday, the only thing I asked for was a break.

I’d spent the previous month working while studying at university, and all I wanted was to turn my laptop off on Friday afternoon and not switch it back on until Monday morning.

That should have been a red flag.

For the people who knew me best, it was.

The people around me during the day thought taking a weekend off for my birthday was perfectly reasonable. No one wants to work on their birthday.

But they didn’t know me.

I’d been on a computer almost constantly since I first gained the ability to use one. I had a business to run, university classes to keep up with and more ideas than hours in the day. Wanting nothing to do with my laptop wasn’t me taking a holiday.

It was my body giving up.

Mum saw it almost immediately.

After a long conversation, which I was far too sore to sign through—another massive red flag—we decided something had to change.

I couldn’t keep living like this.

I had been on track to get Deep Brain Stimulation before the pandemic.

Then I decided not to.

Then the world shut down.

Once the decision became entirely mine, I never followed through.

Now, though, my shoulder was forcing the conversation.

I was in so much pain that I could barely function, and I knew it wasn’t going to get better unless I had surgery on something.

The question wasn’t whether I needed surgery anymore.

It was where.

Did I operate on my shoulder and spend months recovering, hoping we’d solved the right problem?

Or did I finally address the reason my shoulder had reached breaking point in the first place?

Brain surgery was the only option we thought would let me keep functioning afterwards. I’d always known I’d probably have Deep Brain Stimulation at some point in my life, so if I was going to have surgery, it made sense to make it the one I’d always known was coming.

Looking back now, I can see that afternoon for what it really was.

I thought I’d injured my shoulder while signing to Mum.

In reality, I’d just discovered the first domino.

I’d spend the next year chasing answers, trying treatments, collecting scans and convincing myself that if I just found the right specialist, the right exercise or the right injection, everything would go back to normal.

It never did.

When I finally chose Deep Brain Stimulation, it wasn’t because I suddenly became brave.

It was because I’d run out of ways to keep pretending my shoulder was the real problem.

The surgery itself is a story for another essay.

I've already shared the story of how I decided to have Deep Brain Stimulation. You'll find it below.

For someone who’d been terrified of animals for most of my life, the idea of getting a dog would have seemed ridiculous. If you’d asked anyone who knew me even two years earlier, they probably would have laughed.

In my twenties, I found myself wanting a pet more than almost anything else.

There were always concerns. What if I ran over my new best friend with my wheelchair? How would I look after it? What would happen when I wanted to go away? Those questions always seemed enough to end the conversation.

As a twenty-something, I’d already spent the last few years watching my friends and peers build lives. They were building careers, coupling off, buying houses, getting married and starting to have children. My life was taking a very different path from the one I’d imagined.

I’d also just spent most of the previous year recovering from brain surgery. My life had been turned upside down more than once, and I knew it would never be the same.

But for the first time, I also had the time and space to build my own version of a family.

For years, I’d discussed what sort of pet I could get if I ever chose to. My dad kept returning to the idea of a greyhound. They were the right height for a power chair and, according to him, lazy enough that I might actually keep up with one.

Eventually, I stopped treating it as a hypothetical.

My support workers and I spent weeks searching adoption websites and rescue organisations. We found and applied for a few dogs, including one I really wanted, but they all fell through for one reason or another.

I met with someone from one of the more prominent greyhound rescue organisations, and things seemed to be going well. Then they suggested I ask someone else to adopt a dog on my behalf so that person’s name, not mine, would be on the paperwork.

Eventually, one of my support workers gave up on the rescue organisations altogether and started scrolling through Facebook instead.

That’s where we found Winter.

She was a young greyhound who’d never raced because she’d broken her leg as a puppy. If she hadn’t broken that leg, we probably never would have crossed paths. The person advertising her had also put Winter’s sister, Summer, up for adoption.

When I went to the property to meet Winter, I first met a few other dogs, including Summer. One of them wasn’t up for adoption, and although Summer was gorgeous, she was frightened of my wheelchair. Then it was finally time to meet the girl of the hour.

People say that an animal chooses their human, and this girl proved there might actually be something to that.

I don’t know what I expected when I met her. Maybe a nervous greyhound who’d politely tolerate me while someone decided whether I was suitable.

Instead, within minutes she was leaning into my wheelchair, completely uninterested in all the reasons people had spent years telling me this couldn’t work.

I knew almost immediately that this was my dog. She’d already made up her mind, and somewhere along the way, so had I.

She still needed to be desexed, so I had to wait another three weeks before bringing her home for what was supposed to be a three-week trial. Despite a few early toileting issues that needed help from her previous owner, none of us needed that long to know how it would end. Within two weeks, I knew this girl wasn’t going anywhere.

I was fairly sure my parents would tell me not to do it, so I waited until Winter was already home before telling them.

Looking back, they both agree that was probably the only way it was ever going to happen.

Now they love her just as much as I do.

Within the first few days, she’d ripped apart the cheap bed I’d bought her, peed everywhere she shouldn’t have been and decided that my bed was where she belonged.

Since then, life has taken us places neither of us could have imagined, but she has been my constant through it all.

Winter arrived as my dog, but she quickly became part of the whole family. My parents, who’d once worried about me getting a dog at all, now ask about her before they ask about me. Somewhere along the way, she became everyone’s girl.

Before Winter, other people kept asking whether I could look after a dog. They saw my wheelchair and imagined everything that could go wrong.

Winter never asked me to prove any of that. She needed someone to choose her, care for her, and make difficult decisions when she couldn’t make them for herself.

I thought adopting her would be my way of building a family that made sense for my life.

I didn’t realise how completely she would become the centre of it.

Two and a half years ago, I adopted the love of my life.

By now, nobody who knows us would think I was exaggerating.

I’ve always loved writing. I couldn’t tell you where that love came from or when it started, but ever since I could type, I’ve always returned to it.

The funny thing is that no matter which career I chose, writing always seemed to find me.

One of the careers I loved most was public speaking. At the time, I thought that was because I enjoyed standing on stage. Looking back, I think I was just a writer with a more palatable job title and a somewhat clearer career path.

I mean, becoming an author, a blogger, or whatever we were calling ourselves at the time just sounded like a lot of hope and hard work. As a person with disability, the idea of saying I wrote for a living felt ridiculous. Like, sure you do, sweetheart.

Writing was one of those careers that people seemed to put in the same category as becoming a rock star or a professional athlete. Sure, a few people made it work, but for everyone else it was something you did around your “real” job.

Public speaker. Consultant. Advocate. Those sounded like real careers. They sounded practical. They sounded like jobs people could understand.

I mean, I also spent years trying to become an elite athlete in a sport most people have never heard of, so it’s not as though I had a history of choosing sensible careers. The difference was that boccia at least had a pathway. There were state teams, national teams, funding, coaches, competitions. Writing just felt like shouting into the void and hoping someone eventually noticed.

I’d tried to turn writing into my job a couple of times before. Years ago, I’d started a blog, convinced that if I kept writing people would eventually find me. After a while I gave up. It was a huge amount of work, I had no real plan, and I couldn’t see how it would ever become a career.

I kept looking for careers that fit. Sometimes they almost did, until I ran into another requirement my body couldn’t meet. The path into AAC, a field I’d spent years working and speaking in, wasn’t as straightforward as it looked. Loving the work and knowing it wasn’t always enough.

I spent years looking for the career I thought I was supposed to have. Then, slowly, those options started disappearing. Some weren’t compatible with my body. Others weren’t compatible with my life. Some simply weren’t realistic anymore. Eventually, I stopped asking, “What job do I want?” and started asking, “What can I build that will still work in ten years?”

I loved public speaking, but there was one problem. It was always dependent on someone else. Someone had to invite me. Someone had to have a budget. Someone had to decide my story was worth hearing.

Most of the time, I was invited to tell my AAC story. I was grateful for those opportunities, but I was more than one story. I had opinions on disability policy, technology, sport, independence, and a hundred other things that never quite fit into a one-hour keynote about communication.

The other problem was that I was still in my twenties. I simply hadn’t lived enough lives yet to build an entire speaking career from personal stories alone. Public speaking can be an incredible career, but it’s also one that’s largely controlled by other people. You wait for invitations. You hope someone has the budget. You spend a lot of time convincing strangers you’re worth putting on a stage.

I also learned that admiration doesn’t always translate into income. One organisation spent weeks pursuing me about a speaking engagement. We talked through ideas and what they were hoping I’d present. Everything seemed to be falling into place. Then I sent what was, frankly, a fairly modest speaking quote. Suddenly, silence. It wasn’t the first time I’d discovered that people could genuinely value my work right up until the moment they had to pay for it.

I realised I didn’t want my livelihood to depend on whether someone else decided I was worth listening to.

I then spent about a year at university, trying to stay on the typical career track because, obviously, I needed a legitimate career. I wanted a job title that even the most ableist fucker would have to respect.

And writer wouldn’t exactly give me that credibility.

Around that time, my body decided it had had more than enough and my shoulder sustained an injury I could never fully recover from. That forced me to confront a question I’d been avoiding for years. How much longer was I going to keep chasing careers that were becoming harder and harder to sustain? That was when I decided to stop looking for the perfect job and start building a writing career instead.

Making the decision and following through turned out to be two different things. It still took me several years to stop chasing more legitimate career paths and commit to writing properly.

Once I’d made the decision, I didn’t start with essays. I started with a book. For years I’d wanted to write one, but it had always lived in the same category as “maybe someday.” This time, I sat down and began.

Ironically, even though I’d always dreamed of writing fiction, it was non-fiction that finally gave me a writing career.

Funnily enough, starting to write my first book taught me something unexpected. I realised I didn’t just want to write books. I needed to build a writing business that would allow me to keep writing them.

I realised my website wasn’t where I wanted to build my business anymore. I wanted somewhere built around writing, where I could publish regularly and let my work build on itself over time.

So I shut it down and started building the publication I’d wanted all along.

This time felt different. I wasn’t just writing because I enjoyed it. I was creating something that might last.

For the first time, I wasn’t looking for a job title. I was trying to build an asset. Something I owned. Something that didn’t disappear because someone changed budgets or stopped inviting me to speak. If I could build an audience that trusted my work, then every essay, every book and every project would add to something bigger.

Writing gave me something public speaking never could. It let me be a whole person. I wasn’t limited to the version of myself that fit neatly into a conference program. I could write about disability, technology, sport, home, politics, burnout, or whatever else had occupied my mind that week. For the first time, I didn’t have to ask whether a story fit the event. I only had to ask whether it was worth telling.

I also stopped worrying so much about whether “writer” sounded like a real job. I’d spent years trying to find careers that other people respected. Eventually I realised I cared far more about building one that worked for me.

Looking back, writing was never the backup plan. It was the thread running through every career I ever loved. I just kept introducing myself as something else because I thought those titles were more legitimate.

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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