Disability is all the rage!

There's a public conversation happening right now about disability being "cool" and it's a messier conversation than it sounds. Some people (like ME) are genuinely celebrating it: bold, decorated, unapologetic assistive technology showing up in public and being met with curiosity instead of pity. Others have brought their own discomfort into the conversation, and that discomfort tends to disguise itself as concern, or humour, or a raised eyebrow. But underneath the mess, one thing is becoming impossible to ignore: when people are given the space and freedom to express themselves and embrace their AT, it makes waves.

I want to draw a parallel that I think explains exactly where we are.

There was a time, not that long ago, when wearing glasses in public was something to be embarrassed about, particularly for women. Better to squint, to stumble, to hold a book at arm's length and pretend you could read it, than to be seen as bookish, plain or GASP *clutches at pearls * old! We look back at that now and we laugh. It seems absurd. Nobody today walks up to a stranger wearing glasses and asks, "What happened to your eyes?" "How long have you been wearing those?" "Are you sure you need them?"

Glasses became fashion.

People collect frames the way they collect shoes. The stigma didn't just fade, it flipped, hard, in the other direction.

That's exactly where assistive technology is sitting right now. On the cusp.

Too many people, young and old, go without the AT they need. Not because they don't need it. Not because it wouldn't change their life. But because they're afraid of the optics. Afraid of the questions. Afraid of what it will mean about them in a stranger's eyes the second they use it in public. I know that fear personally, it's cost me years I won't get back.

And that's the part of this conversation I think we skip past too quickly: we've somehow decided it's socially acceptable to interrogate a person about their assistive technology in a way we'd never dream of doing to someone wearing glasses.

"What happened to you?"

"What have you done to yourself?"

"Did you do your knee? I did my knee once"

These aren't questions born of malice, they're born of curiosity, but under that is discomfort that's been allowed to go unquestioned for far too long. The result is the same though. The individual always having to justify, validate and engage in conversations about whats wrong with them.

We are in the middle of a shift. Slow, uneven, sometimes uncomfortable, but real. People are starting to use the devices they need to live full lives without folding under the weight of everyone else's reactions. That shift matters more than it might look like from the outside, because that weight was never really about the equipment. It was about permission. Permission to exist visibly, without having to justify it first.

This is the space I get to work in through DecorATe, a project inviting AT users, people with invisible disabilities and chronic illness, carers and the wider community to come together and decorate the things that help them get through the day, turning function into art and art into conversation. It's a small project. But it sits right at the heart of this bigger cultural moment, and I think that's exactly why it matters right now.

The time is right for these conversations, even the uncomfortable ones.

Especially the uncomfortable ones. Because on the other side of them is a future where nobody has to earn the right to move through the world visibly, comfortably, and unapologetically themselves.

Chloe Wigg is a Brisbane Disability Ambassador and the founder of DecorATe.

The Walking Stick Isn't the Problem. The Silence Before It Was.

Kathleen Stock has written a column in the Times asking why so many young women are suddenly using walking sticks. She calls their conditions "vague syndromes." She raises the spectre of "social contagion." She acknowledges, almost in passing, that doctors have a long, well-documented history of not believing young women when they report symptoms. And then, in the very same piece, she does this very thing.

I want to be careful here, because it would be easy to write this as pure fury, and fury is easy to dismiss. So let me be precise about what I'm objecting to, and why I think it matters far beyond one newspaper column.

The argument that eats itself

Stock's piece contains its own contradiction, and it's worth sitting with it rather than rushing past it.

She notes that women's pain has historically been minimised, medicalised as anxiety, or waved away as stress. That's true, and it's good that she says it. But then she pivots: this time, she suggests, the pattern is different. This time the young women reaching for mobility aids are not an underserved population finally being seen, they're a trend, a contagion, a generation performing fragility because disability has somehow become desirable.

You cannot hold both of these positions with a straight face. Either doctors and commentators have a pattern of not believing women's bodies, or a rise in visible disability among young women is best explained by fashion and TikTok. Stock wants credit for acknowledging the first while doing the second in the same breath.

What a walking stick is actually for

Here is the part that I think reveals the whole piece for what it is. Stock argues that people who spend their time sitting or lying down become less fit and feel worse, and suggests, in effect, that young women should be encouraged to stop leaning on their aids and get moving.

But a walking stick is the getting moving. That's the entire point of it. Mobility aids don't take people out of the world, they're what lets people re-enter it. The alternative to a stick, for a lot of us, isn't walking unaided. It's not walking at all. It's the couch, the missed shifts, the cancelled plans, the shrinking radius of a life. If Stock is worried about deconditioning, she is worried about precisely the thing a walking stick prevents, and worried about it while looking directly at the evidence that it's working, because the young women she's writing about are out on the street, being seen, participating.

The only way this makes sense as an argument is if the real objection isn't mobility aids at all. It's who's using them, how young and how visibly. There's an old idea underneath all of this, that to use an aid is to be weak, fragile, seeking pity. Stock's invocation of stiff-upper-lip stoicism as the alternative is that idea in its oldest clothes. It's not new insight dressed as concern. It's the same instruction women have been given for generations: don't make a fuss, don't ask for help, suffer quietly and you'll be respected for it. That instruction has never made anyone healthier. It has only made them quieter about being sick.

This is a public health story, not a cultural war

What actually changed, demographically, in the last five years? We lived through a pandemic that killed roughly seven million people worldwide and left millions more with lasting illness. Research has repeatedly shown that post-viral conditions, Long Covid among them, disproportionately affect women, and that conditions like POTS, dysautonomia, ME/CFS and fibromyalgia have surged in its wake. Estimates put the number of Americans disabled by Long Covid alone in the millions.

That is not a marginal detail. That is the headline. If you are asking "why are there suddenly more young women with unstable, unpredictable bodies," and you don't lead with "we just lived through a mass-disabling event," you are not asking the question in good faith, you're asking it to infuriate and antagonise for click-bait.

The genuinely dangerous part isn't that Stock got the explanation wrong. It's the message the piece sends to anyone currently in the position I was once in: that reaching for support is suspect, that disability has to be earned through visible suffering to be believed, that using a stick invites public judgement rather than public acceptance. That message doesn't make anyone better. It makes them hide longer, present later, and get sicker in the meantime. Illness left unaddressed doesn't resolve itself out of embarrassment. It progresses.

What that message cost me

I have Ehlers-Danlos Syndrome, POTS, and dysautonomia. I also, it turned out, had a serious autoimmune disease underneath all of it, the thing actually driving the rest.

Before any of that had a name, I reported fatigue, a racing heart, light-headedness, temperature regulation that had stopped working, breathing that didn't feel right, a body that was quietly failing. I was told it was anxiety. Stress. New motherhood. The condescension had a very long list of names, and none of them were the right one.

I had to fight my own internalised bias before I could even fight my doctors'. I didn't want to use a walking stick after I dislocated my hip, not because I didn't need one, but because I was afraid of being stopped in the street and accused of faking it. That fear isn't paranoid. It's the exact scenario a piece like this one invites its readers to enact: to look at a young woman with a stick and wonder, out loud or in your head, whether she's really earned it.

A doctor once asked me why I was in a wheelchair. I had to tell him I didn't know, because every time I'd tried to explain, I'd been dismissed before I finished the sentence. By the time I was finally diagnosed with POTS and dysautonomia, I had largely given up on the medical profession. Not because I stopped being sick, but because the emotional and financial cost of trying to be believed had become its own illness.

It was a cardiologist who finally changed that. He apologised for every appointment before his. He confirmed the POTS and dysautonomia, and then said he suspected something sinister was underneath it. He was right. That "something sinister" was life-threatening, and it had been sitting there the entire time I was being told to relax.

If I had followed the advice underneath Stock's column... I would not have survived long enough to write this piece.

Why this matters now

The one genuinely good thing to come out of the pandemic is that conditions like POTS, EDS, ME/CFS and dysautonomia, long dismissed, chronically underfunded, poorly understood, are finally getting attention. Research is catching up. Diagnosis times, while still far too long, are starting to shorten. People are finding each other, comparing notes, and recognising patterns that used to take individuals decades to piece together alone.

A column like this doesn't just get the science wrong. It spends the credibility of a prominent, influential writer pushing back against that progress, telling a generation of young women, right as they're starting to be taken seriously, that they should be quieter, more sceptical of their own bodies, more embarrassed by the tools that let them function. That's not a contrarian take. It's a public health catastrophe, aimed at the vulnerable, for the crime of being in society while using an aid.

I know what it is to grapple with the stigma of using a walking stick/ wheelie walker/ wheelchair as a young woman. I know what its like to feel like to push through and suffer for onlookers comfort rather than your own function. I don't wish that particular kind of harm on anyone, least of all on young women who are already fighting to be believed.

Preparing Mentally for Plasmaphoresis

A little life update and a peek into how I approach the hard stuff.

Before you read on: I'll briefly mention a medical procedure. This is a no-angst post, but if medical content isn't something you can take in today, that's okay ... come back another time. I take trauma-informed leadership seriously, and I only ever want to put good into the world.

You are the guardian of your mental health. Fight like a gladiator to protect it.

I'll be starting plasmapheresis next week, which means I'll be admitted to hospital for a few days each week for the foreseeable future. I wanted to give a heads up that I may be less available, less productive, and might drop out of plans. Please don't take it personally, it comes from a place of loving life and wanting to protect my capacity so I can show up for the people and things that matter most to me.

But this isn't a doom and gloom post. I want to talk about how I *prepare*.

I am a firm believer that we are the guardians of our own mental health, especially when facing things that are painful, scary or distressing. When you're walking into situations where you have very little control or autonomy, preparing in advance to reclaim even a small measure of it goes a long way in managing fear.

Plasmaphoresis is a procedure where they remove the plasma from the blood and replace it with albuim from blood donors. To do this they need large bore IV access to remove your blood quickly, run it through a machine, and get it back into your system quickly. Unfortunately after 6 years of immunotherapy, my veins are not great and they cannot use my port- a - cath for this as it isnt big enough. So if I am going to be having this procedure long term I will need to have my port replaced. Which means another awake surgery (not fun). They want to see if I cope with this procedure before putting me through a surgery. We will try ultrasound guided IV access but will likely end up with a central line.... in my groin sounds like such fun, cant wait for that heavy sarcasm

So there are obviously things I am afraid of, so how can I set myself up to face it with a calm mind.

For me that looks like two things:

**Filling my soul cup before I go.** Focusing on the things that make me genuinely happy. Surrounding myself with people I love. Doing things that bring me joy. ART has a huge part in that. Art helps me cope with all the scary. Building up a reservoir of resilience so that when I'm putting my trust and body in other peoples hands, I'm drawing from a full well.

**Controlling my senses while it's happening.** Eye mask. Audiobooks and music. Perfume and essential oils. I flood my senses with things that are safe and familiar, so my brain has something beautiful to focus on instead of everything else going on around it.

Here I am in ICU, sleep headphones on playing a beautiful Audiobook, eyemask at the ready and pillow covered in lemon myrtle essential oil. Controlling what i can control the get through the uncontrollable.

And for anyone else navigating serious illness while raising small children, here's something that has worked beautifully for us.

My son is 8. We work very hard to make sure he never carries the weight of my health on his shoulders. So when I'm going into hospital, his job is to go and hug all of his soft toys and feel which one is the squishiest, the cuddliest, the one with the most healing energy and choose that plushie companion to send with me to help me get stronger.

It gives him a role. It gives him his own small measure of control. And it keeps a gentle but firm barrier between my illness and his sense of responsibility. It's one of my favourite things we've ever come up with.

Anyway, that's my update. It feels fitting that all of this is unfolding during MG Awareness Month. I really hope this treatment brings some stability. I'm going into it with a full heart, paint under my finger nails and a good playlist.

Stay colourful 🤍