The Competence Trap
This is my own representation of my nervous system. The grey, still, composed body is the part the world sees. Beneath it, the whole network glows gold, brain to spine to fingertips, because the brain and the nerves live in one body, not separate rooms. At my hands, feet and lower legs, the gold burns to molten red, glowing red-hot from within. That fire is the erythromelalgia and small fibre neuropathy I live with: the pain that lives at the edges of me while my face gives nothing away.
On what it costs to look like you are managing, and the rooms where that misreading does the most damage.
How many times has someone asked you, how are you? How many times have you said, “Oh, I’m ok.” Or “I’m fine, how are you?” Now, how many times have you stopped and actually thought about what you were feeling in that moment and what it would mean if you actually told the person the truth? Do they really even want to know? Do you? Or are they just being polite?
There is a sentence I have heard in almost every room I have ever walked into. Clinical rooms, tribunal rooms, my own lounge room with a support worker standing in it. It arrives dressed as kindness, and it goes like this: Wow, you look great today. I don’t know how you do it. You take everything in your stride. Nothing ever seems to faze you. You are coping so well…
I want to be clear… this is not me coping. I am surviving by spending reserves I do not have. Masking, deflecting and ignoring my own needs wherever I can for as long as I can. The distance between those two things is the whole story.
The Competence Trap is simple to describe and brutal to live. The better I explain my disability, the less disabled I appear. The more precisely I name my barriers and ask for help finding what I need, the more capable I seem of going without it. My articulateness gets read as evidence. Not evidence of how hard I have worked to make myself understood. Evidence that I must be fine.
Almost every system I have engaged with runs on this misreading. So I started naming it out loud, in writing, in the front of every document I hand to every professional, because if I do not say it first, the room says it for me. And the room gets it wrong.
These are the rooms.
The Clinical Room
This is the cruellest version, because it is built into the form itself.
A functional assessment asks me to describe my limitations. To do that accurately, I have to demonstrate the exact cognitive and organisational capacity that the assessment will then use against me. I write a clear, complete, well-ordered account of a body and a life that are neither. The clearer I am, the more capable I look. The more capable I look, the less support comes back.
The clearer I am, the less I get. That is not a fault in the assessment. That is the fucking design.
There is no clean way to even produce the account. Typing swells my hands and sets off a flare. Dictating it into a machine in my own home makes me want to crawl out of my skin from the shame of being overheard describing my own life. So the document costs me a body before a single assessor has read a word of it. And then I sit there and watch myself fold the truth down into the smallest container it will fit, because that is the reflex of a lifetime spent being measured by people looking for a reason to give me less.
I once had to write a second document, purely to correct the way I had minimised myself in the first. I caught myself doing it mid-sentence. The compression is information. The fact that I do it at all is information. Nobody scores that box.
The Tribunal Room
In the rooms where I fight for my son and for myself, the trap wears a different face. Here, competence looks like a threat.
I cite the precedent. I find the door one level below the one they have already closed. I ask for the assessment instead of the outcome, because I know they will refuse the outcome. So I play down my knowledge of what I know, my experience of what I know is required. I’m begging for support in the most self-preserving way I know how, through legislation and factual evidence. Not because it is easy, but because all other options have been exhausted and are no longer appropriate. I am articulate and precise in my justification, and someone with the power to refuse me looks up and says, actually, I agree.
And somewhere in a file, that same capability gets logged as proof I am managing. I received a plan once that had quietly stripped out my capacity-building hours and handed me support-work hours instead. Read that slowly. I am trying to build capacity so that I need people around me less, and the system answered by funding more people to stand in my house and fewer of the things that might one day mean they did not have to. It looked at the most capable version of me I could produce and gave me the opposite of the thing that capability was reaching for.
If you fight well enough, they quickly decide you do not need the support you are fighting for.
The Room in My Own House
This one took me the longest to see, because it hides inside a sentence that sounds like service. A support worker arrives. Paid, present, standing in my home, and asks: “Is there anything specifically you need me to do today?”
There definitely is. There is always plenty that they could do (especially if they could see the world through my eyes and see the chaos I have in my brain). My walker is across the room, and I cannot reach it, because the floor is covered in things that have not been put away. So, I have to furniture surf throughout my home and only use my walker where the path is clear. I am the one with the disability. I am the one isolated and with the broken body. And the first words out of my mouth are… I’m sorry, I couldn’t put that away, do you mind…if it’s not too much trouble, could you please…. Upon analysing this with my psychologist, when I felt like I was starting to sound like I was complaining about my workers, my initial reaction was to say... “yes, it is my fault. I know I should have told them it was in my way, I should’ve told them it needed a place to live instead of on my floor.”
It is not my fault. But because I could give the instruction, the fact that I should not have to is erased. The entire job of seeing what needs doing gets handed back to the one person in the room least resourced to carry it. I went through thirty-six different support workers in a single year, looking for the one who would just see it. Thirty-six strangers in my home, learning our story, my body and my child and my routines, most of them gone before they learned any of it, every one of them needing me to teach, direct, manage, and tolerate their presence on the days I had nothing left to give. Just tell me what you need, sounds like help. It is the quiet transfer of every decision back onto me. And I perform being okay while they are here, because hosting the truth in my own lounge room is heavier than hosting the guest.
The Room With My Son
Then there is the room where I watch the same trap run in reverse, on someone I would burn the world down for.
My youngest is classified as non-verbal, and yet, he always has so much to say. He communicates in five different ways. Vocally, through Key Word Sign, gestures, his AAC device, and taking your hand to show you. He navigates that device faster than the adults around him do. Last year, he stood up in front of his kindy class and presented on wolves. He is a different superhero every single day. But most of the time, he is Hulk.
And still, people meet his quiet, or their own inability to understand him, and decide there is nothing behind it. They mistake the absence of speech for the absence of intellect. Some exclude him completely. Others do something worse: they invite him in, then dismiss every decision he tries to make for himself, refusing to see that he is only where he is through his own hard work and determination. They count him out either way.
He contributes to every room he graces with his presence.
With me, capability is read as not needing. With him, the missing channel is read as missing capacity. The same misreading, pointed in opposite directions. Both of them wrong.
His is the one room I have never once minimised in. I will always be his voice when he feels unheard. All I ask is that you see him, truly see the boy, not the disabilities. Don’t ever think you know my son better than I do. I will say it to a clinician, a school, a stranger, a system. I will say it to a machine if I have to.
My son lives with a sensory system that he fights to regulate every day and a body that does not do what he asks of it. But boy, is he intelligent. He reads micro-expressions like it is his own superpower.
The Room Wth Myself
The next room is the hardest to write about, because the person doing the misreading in it is me.
When I am tired, I compress. I shrink my load down so it fits the space other people have for it. I say it’s fine, it is my fault, it is not that bad, others have it worse.
And here is what I cannot reconcile. I do not believe a single word of that when anyone else says it. I am a fierce believer that no one should measure their pain against someone else’s. If your disability, your chronic illness, your impairment, or even your papercut, gets in the way of your life, then it matters, because it matters to you. People compare themselves to me all the time, look at the level of pain I live with, and shrink their own down to nothing. But it is not nothing. It mattered enough that you thought to tell me. You matter. Your experience matters.
I can say every word of that to anyone but myself. I have spent so long being read as coping that I filed myself under the same heading. That is the part that the trap depends on. It needs me to agree with it. And for a long time, I did. The whole time, I was screaming inside, praying that someone, anyone, would see me.
The Room You Cannot Perform Your Way out Of
Here is what years of medical gaslighting actually builds.
It does not just leave you unsupported. It trains you. Every time you bring someone the unvarnished truth and they hand it back to you as anxiety, as stress, as catastrophising, as you are doing so well though, you learn the same lesson. Your truth, raw, is unacceptable. It has to be packaged before anyone will take it. So you learn to package. You get good at it. You get so good that you can sit in front of someone with your mind coming apart at the seams and give them the version that lets everyone in the room stay comfortable.
You learn exactly what to say to prove your competence. Yes, I am sleeping. Yes, I am safe. Yes, I have supports in place. You know the answers that close the conversation, because you have learned, across years, that the honest answers do not get you help. They get you a label and a door held open on your way back out.
And then the worst thing the trap can do, it does.
You become so skilled at presenting capacity that the people whose entire job is to see you slipping cannot see it. The crisis team. The ones trained to read the cracks. You hand them a performance so complete that they believe it, at the exact moment you most need someone to refuse to. You are articulate while you are unravelling. You are calm while the floor goes out from under what is real. And because you sound fine, they let you go home.
You sound fine all the way into psychosis.
And even then, you hide. You pull the world in close and small. You disappear, because disappearing is the one thing you have always been good at.
Let me tell you what disappearing looks like. The years of what was called disordered eating, that were physical symptoms made worse by psychological stressors. The pain on my skin in the shower that builds until I cannot stand it, so I stop showering. My body shutting down by degrees. Toileting becomes a calculation I keep losing: the pain of getting up is too obscene, so I weigh going against holding on, and I hold on.
You hide until your own body does the thing your mouth was trained never to do, and stops cooperating with the performance. Stroke-like episodes. Every day. Your nervous system saying out loud, in a language no one can argue with, the thing you were never allowed to say in words.
The hospital thinks you are having a stroke. More than once.
And that, finally, is the thing that makes it real to everyone else. Not the years you spent telling them you were drowning. Not the words. A body seizing in a way that cannot be masked, cannot be minimised, cannot be folded down into something palatable. Only when you can no longer hide, only when the people around you can no longer look away, does the need you have been naming all along get counted as need.
Sit with the obscenity of that. It took my body breaking in a way nobody could un-see before anyone believed the breaking that had been happening the entire time.
The Room They Are Building for All of Us
Here is the part that should frighten you, whether or not you have a disability or have ever sat in any of these rooms.
Everything I have just described, the misreading that costs me support in every individual room, is being written into the architecture of the scheme that is supposed to catch people like me. It is becoming the funding logic itself.
The law already says a support will only be funded if it addresses a need arising from an impairment that has been accepted as meeting the disability requirements.¹ Read that again, slowly, because it is the whole game. The system does not fund your body. It funds the conditions on the list. The ones that have cleared the bar, one at a time, in isolation.
But my disability does not live in any single accepted condition. It lives in the interaction. In the mental health that drives the physical collapse. In the nervous system that carries both and does not stop to check which speciality is on duty. That interaction has no impairment code. It is not one accepted condition. It is what several of them do to each other inside one body, and there is no line on the form for that.
The law even admits this. Buried in a note to the provision is a concession that your needs may be compounded by another impairment, one that does not itself meet the requirements.² So it sees the compounding. It writes the compounding down. And then it funds you as though the compounding is not there. It looks directly at the thing that is dismantling you and declines to pay for it, because it arrived through the wrong door.
This is the exact split I perform by hand in every appointment, the one where I leave my mental health in the corridor because it is not their speciality. Except now it is not my coping mechanism. It is the design. The siloing I was forced into so that I could be read at all is being hard-coded into who gets funded for what.
And the new Bill does not fix this. It builds a fresh layer of standardised assessment on top of the same Agency that has been the source of the harm and calls for securing the scheme. It goes further than guidance, the new Part 3 tightens the test itself: where the law currently funds a need "arising from" an impairment, the Bill will fund a support only where that need "arises directly from an impairment for which the participant met the criteria for accessing the NDIS". The siloing I have just described is not being restated. It is being hardened into law. And the fresh guidance on what counts as reasonable and necessary is handed to the same hand that has already used those words to refuse a bath, a walker, a child's communication device.³
This is the agency that funded a $28,835 motorised wheelchair. In the same plan, it refused the home modifications to get that wheelchair in and around my house, on the basis that I was “not dependent on wheeled mobility”.⁴ I now own the most expensive doorstop in the country. The same weapon, sharpened.
For a person whose disability lives in the gaps between accepted conditions, this is not an oversight. It is not a box left unticked. It is being designed out. Not unseen. Constructed as invisible.
The competence trap and the accepted-conditions model are the same logic running at two scales. Both decide your need by what is legible to them, not by what is true in your body. One does it across a desk, in a single room, on a hard day. The other does it in legislation, to seven hundred and seventy four thousand, four hundred fifty six [774,456] people with approved plans at once.⁵
What I Want You To Take
I do not have a tidy ending for this, because the trap does not have one. I will walk into another room tomorrow, and someone will tell me how well I am managing, and I will have to decide, again, whether to correct them or keep the energy. And the country is deciding, right now, whether need has to be legible before it counts as real.
But here is what I want you to hold, if you live inside this too.
You should not have to collapse in a way other people can photograph before your need becomes legible. The need was real the whole time. It was real while you were still holding it together. It was real in the calm voice, in the complete sentences, in the answers that closed the conversation. The fact that you could carry it has never once been evidence that it was yours to carry alone.
Being articulate is not the same as being adequately supported. Looking like you are managing is not consent to be left to manage. And the fact that you find the capacity, every time, because there is no other choice, is not proof the capacity was ever really there.
If you are the one who keeps being told you are coping so well, I see the cost of it. I know who is paying. It is you. And you were not lying when you said you needed help, just because you said it without falling apart.
You were telling the truth in the only voice the world had left you.
¹ National Disability Insurance Scheme Act 2013 (Cth) s 34, as amended by the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Act 2024. The amended s 34(1)(aa) requires that a funded support address a need arising from an impairment in relation to which the participant meets the disability or early intervention requirements; the Note to the provision acknowledges that those needs may be affected by another impairment that does not meet those requirements.
² Eastham and CEO of the NDIA [2025] ARTA 198 used this exact Note to fund a mobility scooter where the need arose partly from non-accepted impairments (osteoarthritis) alongside accepted ones.
³ National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 (introduced 14 May 2026), Part 3, under which a support is funded only where the need "arises directly from an impairment for which the participant met the criteria for accessing the NDIS"; the new support needs assessment must identify needs "directly linked to" those impairments. Source: Bill fact sheet, health.gov.au. The Queenslanders with Disability Network describes this as requiring a "direct causal connection" to the impairments for which a participant meets access.
⁴ The complex home modifications were refused on the basis the participant was “currently not dependent on wheeled mobility” and “would be able to weight bear to complete step transfers”. NDIA plan decision letter, 27 November 2024 (on file).
5⁵ Current published count is 774,456 participants with approved plans as at 31 March 2026 (NDIA Q3 2025-26 Quarterly Report).
