The subtitle to this piece says this is for my disabled creatives, but I don’t want you to count yourself out from this group just because you don’t think you’re artistic or creative or inventive. But the truth is that all disabled folks are inherently creative.

We have to be.

Adapting to a world not designed for us means we have to be creative to participate in it.

So, really, when I say this is for my disabled creatives, I mean this is for all disabled folks.

Here’s my question / journaling prompt for you today: Where is your creativity living at the moment? What does that tell you about where you are?

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And most of the time, it wasn’t out loud.

(Although I’m certain that I’ve said the words “sorry” in situations where I thought I was in the way or making things difficult for someone else.)

Instead, it looked like:

Not attending events so that I wouldn’t have to “burden” organizers with my needs.

Compromising on my needs to still participate in spaces that weren’t wholly accessible to me.

Feeling shame any time I asked for help doing a seemingly “basic” thing.

Getting angry at my body when it didn’t cooperate.

Doing extra work to distract people from my needs.

Feeling like I needed to compensate for the ways in which I couldn’t show up.

And while I would love to think that this part of my journey with disability is over, it isn’t, completely.

I still have moments where I feel like I’m too much. Where I convince myself — as much as my logical brain knows it’s not true — that other people in my life believe that me and my disability are an inconvenience, that they think I’m in the way, that they are hindered by the fact that they can’t do the same things with me as they do with other friends.

I tell myself that asking for something — anything — is too much.

And that leads me to preemptively apologize for (and feel shame about) not being able to navigate something on my own.

But you know what I’ve also realized? More importantly?

Asking a loved one for help is a gift.

It’s an invitation to have them show up for you in an intimate way.

It’s a way to let them into your lived experience.

It’s an opportunity to share with them.

And aren’t those all good things?

I may still battle my inner voice from time to time, she is far quieter than she used to be. And thank goodness for that.

Because in lowering that wall, that armour, I’m far more open to connection and deeper relationships and love and ease.

And we all deserve more ease.

I was at a Human Library event as one of the “books” that students could “check out” to hear our story and about our lived experience.

It was actually really sweet watching the highschool students that had organized it all see their own event come to fruition. You could tell how proud they were of it. And how grateful they were that all the speakers had shown up.

I titled my talk “The Path to Disabled Joy” and talked about what had happened to me — what led me to become disabled — and how I have cultivated disabled joy since then.

With each of the four groups, I looked closely at the students, before the talk, while I was speaking, and during the question period as they carefully picked out their questions.

They were nervous. Not unkind — nervous. Afraid of getting it wrong.

I have to admit I was also nervous. Teenagers are a complete unknown for me, and I had little insight into how they might interact with the concept of disability, let alone disabled joy.

Here’s what surprised me.

They didn’t really want to dig more into what happened to me, or what it physically means to have a spinal cord injury. That was what I had braced for.

What they asked instead: what’s your view on life like now, compared to before? What’s hard on an ordinary Tuesday? What could people actually do better? What could I do better?

Better questions than most adults ask, if I’m honest. And that made it really easy to give them generous answers.

The first thing I told them: you don’t have to arrive knowing. You just have to arrive curious.

I shared about my concept of humble curiosity. Don’t make up your mind about who I am before you’ve asked. Don’t assume my needs based on what you think you know about my disability.

Stay curious, without being invasive in your curiosity. Ask for how you can support in making a disabled person’s experience more comfortable or how you can empower them to participate they way they want to.

The second thing is smaller, more practical, and it’s the one I wish more people understood.

So much of disability is admin.

So before you suggest a restaurant to a friend, for example, do some of that admin yourself. Is there a step at the door? A bathroom I can actually use? And then, tell me you’ve done that research so I don’t have to.

You’ve just taken something off my plate that I carry every single time.

Mia Mingus calls this access intimacy — that hard-to-name feeling when someone gets your access needs without you having to spell them out again. When access isn’t a favour you have to ask for.

It doesn’t have to be grand. Sometimes it’s just the simple act of thinking about me before I had to ask for it.

The third thing was the one I think they most wanted help with. Because they all knew it can happen.

They asked me how they can help interrupt an intrusive conversation. (We’ve all had the “What happened to you?” from a stranger, haven’t we?)

So I gave them options:

• You can move the conversation along — change the subject, hand me an exit.

• You can interrupt and talk to me directly.

• You can say something to them, gently, in the moment, or quietly, afterwards.

You don’t have to fix it. You just have to not leave me holding it on my own.

Getting to say all of this out loud, four times, to small groups of kids, felt like a bit of a gift.

I spend a lot of my life explaining myself and my community. This felt different.

This was about handing something over to young kids who were (mostly) listening.

These kids who told me they were afraid of getting it wrong, which also told me that they care about getting it right.

I just reminded them that it’s ok to get something wrong. As long as you’re coming at it with the right intentions, and you don’t make assumptions, and you don’t make your curiosity intrusive, people are going to welcome a conversation with you.

I think that somewhere along the line, most adults learn to look away. These young ones hadn’t learned that yet. They were still nervous in the right direction.

If even a few of them hold onto it, the disabled people who come after me might get to spend a little less of their lives explaining themselves. Or hiding themselves. Or taking on the burden of protecting their friends from what they deal with day to day.

I won’t pretend a handful of teenagers fixes everything. They’re all focused on graduating right now, and that’s huge. And plus, it shouldn’t all rest on them.

But there’s something pretty cool about engaging with a generation of kids that might just be looking at it all differently.

My body is not familiar with the impromptu touch or squeeze from a friend.

A platonic caress surprises me first, makes me smile second, only once I’ve released the small gasp caught in my chest.

I don’t know the freedom of rushing up to wrap myself around a loved one.

I’ve not figured out how to sidle up to a hurting friend and offer her my shoulder without fretting about the awkwardness of my own seated frame.

I worry they will feel my chair before they feel me.

I’ve convinced myself that all I can offer is hard. Angular. Un-comforting.

Not soft. Not warm. Not tender.

Not all the things I want to be.

And so I keep myself as an island. Not reaching out. But desperately hoping that my friends will bridge the gap.

Will squeeze my shoulder as they pass by me.

Will lean on me when we’re next to each other.

Will hug me out of nowhere.

Will grab my hand when I wobble.

And teach this girl to do the same.

Outside of the other patients at my rehab centre, the first disabled person I met was a gentleman who my family knew of that had used a wheelchair for the majority of his life.

He had been injured in a boating accident when he was 12, and had spent the next 48 years of his life as a wheelchair user.

There are only a few flashes I remember of the brief time I spent with him inside my great grandmother’s home.

He taught me how to adjust myself to sit tall in my wheelchair and avoid pressure sores.

He guaranteed me that I’d soon learn how to move around the city on my own. I didn’t quite believe him then, but he wasn’t wrong.

He provided an example of what life could look like after years as a disabled person.

And I was so resistant to it all.

Sitting with this man, who had lived a version of what I was living through right then, I was in absolute denial that I would spend the rest of my life like he had.

48 years in a wheelchair felt like such a HUGE thing to me then, just a few months in.

It was inconceivable.

Then, I was sure that there would be some sort of remedy or cure for my spinal cord injury. That I would be back up and walking in no time, back on track to live the life that I envisioned for myself.

I couldn’t understand (refused to understand, really) that I was in the presence of something pretty miraculous.

This man, first injured in the 1950s in Argentina, had lived a full life as a disabled man. He had experience the absolute privilege of aging with his disabled body, despite all the odds that were stacked up against him.

It’s been 20 years since I met him. And he has since passed on. And I think it’s only recently that I’ve fully embraced how much of a gift it is to age in this body.

Because the truth is, as much as I would love to stay in denial about it, my spinal cord injury has potentially reduced my life span. My body is at increased risk of sores and infections, dangerous blood clots, and can be more severely impacted by illnesses that only mildly affect non-disabled folks.

This is true for so many disabled folks, in whatever experience they have with disability. Being part of this community means being witness to beautiful lives that are cut far too short. It’s heartbreaking.

And sure, I could hold this in a place of fear and resentment. I could wallow in the sadness of it — that feeling that I won’t get to see everything I want to. (Sometimes that feeling does enter my chest for a little while.)

But I’m starting to see it as more of an invitation.

An invitation to take care of my body so that it can be here as long as possible. So that I can be present in this life that I love. So that I can continue to witness life’s beautiful moments, but also fully feel the excruciating ones, and share those with my people.

I see it as an invitation to get stronger. To moisturize my skin. To enjoy what I eat. To wear the clothes that feel good. To choose people that fill my cup.

Basically, it’s an invitation to live fully (in the way that’s true for me) for as many years as I have left, with my community.

I’d love to hear from you if you’ve felt the same, at any point, or if you have your own thoughts on the impermanence of living in a disabled body. Let me know in the comments.

PS: As part of this journey to make the most of this life I do have, I’m building an online community space focused entirely around disabled joy. It’s called the Disabled Joy Collective and you can join the waitlist here.

The feeling that in another life, in another timeline, I might have ended up there. Made a home there. Learned how to navigate this bustling, dynamic city with ease.

In that life, I would have shared adulthood with my sister. My accent might have changed. In another life.

But that pathway was immediately cut short the minute I fell on the ski slope and hurt my spine.

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Let me set the scene.

As usual, I waited in my seat until everyone got off the plane. This is standard practice as they want the aisles clear before they let assistance staff on to help anyone who needs it.

I had already checked the AirTag on my wheelchair to confirm it hadn’t been left behind in London (my true nightmare), and was happy knowing that I would soon be reunited with it so that I could zoom through the airport and see my husband for the first time in weeks.

The aisles were clear. Assistance staff came on with the aisle chair. I transferred onto the chair. They strapped me in. We moved to the aircraft door.

“Do you have your own chair, miss?”

My heart sank a little. They wouldn’t be asking that if my chair was there at the door, right?

I told them I did. I asked where it was. And within a couple of minutes of frantic movement, they confirmed that someone had missed the MASSIVE orange tag that said “Bring to aircraft door” and sent it off to baggage claim with the luggage.

I think it’s an important time to note here that my wheelchair is not luggage.

It is the way I move through the world.

It is a wildly expensive piece of equipment that shapes how I interact with spaces.

I said this to the gate agent. That while I understood that they couldn’t (wouldn’t) get my chair back to me at the gate and that they would have to get me to baggage claim, that this was not okay.

I needed him to understand that this was not okay.

He said something about communicating to his superior, which meant nothing in the moment. I could see he was just focused on turning the plane around so that the next flight could leave on time.

His metrics for success had literally nothing to do with whether or not I got my chair back in one piece, or whether I had my autonomy, and it showed.

So I transferred into another wheelchair — one that I couldn’t move on my own — and had a member of the assistance staff push me through the airport to reunite me with my wheelchair.

I was fuming. I kept snapping at the poor girl that was tasked with helping me any time she asked a question.

But the core driver behind it all was that I felt helpless. I had no autonomy. No way to move around on my own. I was stuck.

This is why it matters that disabled people get their equipment back when they need it. Because we deserve agency

Once I got my chair back (fortunately all in one piece) I realized I couldn’t stay quiet this time, like I had in the past. I rolled up to the British Airways desk and told them that I wanted to file a complaint because this was so far from okay.

I re-emphasized that they had robbed me of my ability to move through the world. That they had stolen my agency. That I had done everything I could to make sure I would get my chair back, and they had failed me.

They agreed to file a complaint, but also made sure to tell me that this wasn’t their purview, but the airport’s.

I didn’t even let them finish. I reminded them that it’s their job to represent me as a customer and to talk to the airport so that scenarios like these don’t happen again.

I’m glad I had the energy to speak up this time. I don’t always. But I’m so tired of experiencing it and of watching other disabled folks in the community go through the same things over and over again.

She did so well! I’m so proud. And I’m so happy I caught a glimpse (and clip!) of her running by me near the end of the race.

It was also so fun to be amongst the crowds for the race itself. The city was full of energy and cheering for the runners and wheelers who took on the challenge. I also went early enough to find a safe spot on the sidelines that I got to see all the race leaders in the ambulatory and wheelchair categories.

There’s nothing quite like witnessing people at the top of their sport. But also nothing quite like seeing thousands of people come together to do something hard and fulfilling — many for the first time.

What was also striking was how friends and family came together to celebrate the runners, holding up signs, tracking them so they could catch them at a specific part of the course, yelling loudly, and then spending time with them post race to mark the occasion.

It’s not surprising that people who watch the race come away with this feeling of “oh, I should do that!” For the very briefest of moments, I also wondered whether I should make the attempt someday soon.

But then I was sitting with my sister at her own post-race drinks event, and she said something that struck me.

“You don’t have to run a marathon.”

What she meant — or what landed for me, at least — is that running the marathon should be something you intentionally choose to do.

Fi lives in London and she worked years to qualify for her home race. And once she knew she was in, she got to training. She worked her schedule around long runs and recovery and fuel and sleep. She even ran while on a trip to Australia for a friend’s wedding. She arrived at the start line because she decided, at some point, that this was where she wanted her energy to go.

That’s the part the spectators don’t really see. The months of work and choosing and claiming what she wanted.

And when I think about it, there are versions of this everywhere.

The friends who are building their own company shaped around the sport they love. The cousin who’s starting a podcast to talk about women in sports in a country that has very little funding for them. The friend who’s shaping the idea for her second book. My own journey to crafting a community around disabled joy. All of it is someone deciding this is what I want, and I’m going to put my energy here.

But then there’s the other very valid reality.

You don’t have to run a marathon. You also don’t have to write a book. You don’t have to be a community leader. You don’t have to be a speaker. You don’t have to have a Big Thing at all.

There’s a version of this conversation that swaps one pressure for another: okay, I’m not going to run/push a marathon, but surely I should have some equivalent.

But sometimes the chosen thing is small. Tending to good friendships. Cooking on Sundays. Reading more. Spending time making your home your own. Resting properly. Showing up for the people already in your life without trying to expand the list.

There’s no shame in not pursuing a big thing. There’s real joy and worth and value in the smaller pieces, too. There’s ease in deciding that this, my current beautiful life, is what I want my energy to go to.

The intentional part is in the choosing. I’m finding it in my own current season, where my energy has been much more drawn to shaping the next chapter of my life with my husband, rather than the big idea I have around the Disabled Joy Collective. But that doesn’t mean I won’t shift back (I definitely will). It just means that I’m taking ownership of where I put my energy based on my own choices, not on what I think might be expected of me.

And then the next step is letting the people in our lives in on it. Whatever the size.

My favourite part of the whole marathon experience, beyond actually witnessing Fi run it, was getting to see all the people who love her come together to celebrate her. It warmed my heart so much to get a glimpse into her world and all the love she has in it.

Her friends literally tracked her across the course to meet her at multiple locations. They’d made a sign with her picture on it. They knew what Sunday meant because she’d told them (or shown them) this is the thing I’m doing and it matters.

I think that’s the real joy of accomplishing something or just living something. It’s naming what you want, putting your energy there, and inviting the people you love to witness it with you.

Big or small. Loud or quiet. A finish line or a slow Sunday.

You don’t have to run a marathon.

You do, maybe, get to figure out what your version is — even if your version is precisely what you already have. And then tell someone to celebrate it with you.

Honestly, I thought I’d be more scared at the idea.

The last time I went on a full-on trip on my own was in 2017. It was a three-stop tour of Europe.

First stop was Berlin, to visit my lovely friend Emilia, who was living there at the time. I did a lot of perusing through the city while she was at work, and then we’d meet up for picnics in the park, some sightseeing, or long conversations on a bench.

Next was Sweden. One of the friends I grew up with in Argentina, Maria, was living there at the time and I hopped over to experience some of her world. We also did a short little driving tour in the last couple of days, stopping at a small motel and eating herring and Boursin as our girl dinner.

Last stop was London, for a quick visit of friends and family there.

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To my husband. To the dogs. To myself, while I’m brushing my teeth at 11pm.

We have a house.

Last week, we got the keys to our new place in North Vancouver. And I still can’t quite believe it.

(Yes, this is absolutely why I’ve been a bit absent the last few weeks, but that’s what happens when life is life-ing and it’s been so good for me to focus most of my attention here.)

We had been searching for about six months. And if you’ve ever tried to search for a home (or a short-term rental or a hotel) with accessibility in mind, you understand why we were getting frustrated.

We had very specific needs.

One level. A garden — flat, ideally, so I could get around in it. A neighbourhood that was easy for me to get around in. Modifications we could reasonably make to move in shortly after.

And listing after listing, it was: “Oooh this could be promising” only to find steps from the kitchen to the living room. A surprise basement. A garden terraced on the edge of a cliff.

Not ideal.

Then this one appeared. The perfect house (for us).

One-level living? Check.

Big flat garden? Check.

Easy to add ramps to the doors? Check.

Livable with just a handful of modifications? Check.

We were in love. We knew this was the one.

And after a really stressful bidding process with 8 (!!) other offers where we had to work really hard to manage our expectations, it’s ours.

Four weeks later, we have the keys and a contractor and a growing pile of decisions about paint and light fixctures and where the ramp should meet the back door.

But in the midst of all of that, I keep landing at the same place.

We have a house.

A house that will be ours. Accessible to me. Always.

It’s not that our apartment hasn’t been good to us — it has. But there’s a particular kind of low-hum vigilance I’ve gotten used to.

Worries about the elevators going out of commission. Planning around whether I can manage both dogs on my own when my husband is away.

This changes that.

Well, not all at once, perhaps. I don’t think the instinct to brace unlearns itself that quickly.

But the possibility of not bracing. Of just exhaling into a space. That’s new.

On the day we submitted our offer, this is what I wrote in my journal. I’m going to share it, because I don't think I can say it any better now than I did then:

I’m trying to exist in the reality, the timeline, where we have this house. Where I have an office of my own in which to write and create and be me. We are those people. We are the versions of ourselves that can own that house, live a life in it, expand into it, and take care of it. We are those people. The people who will learn how to grow a gorgeous garden, who will get to know our neighbours, who will casually go visit friends in the area, and have them drop in.

We are those people — the eldest kids of migrant families and high pressure environments — who will learn to choose ease in that house. We will learn to exhale and find more joy. We will discover who we each are without the stressors we’ve gotten used to. Our chests will learn to unconstrict. Our shoulders will feel lighter. We are the people who will live in that house.

I've read that back to myself a lot in the last four weeks, and I tear up every time.

Because what I think is actually, slowly, settling in is this:

My experience of life as a disabled woman is that I’m always bracing for things to go wrong.

It makes me strong, and resilient, and inherently adaptable.

But it’s also exhausting.

And now there’s going to be a place in my life where I won’t have to brace in the same way. That alone makes me exhale.

Before I sign off, I also want to name this, because it’s sitting in my chest too:

I know this isn’t something everyone gets to have. Housing that is accessible to disabled folks, that meets all of their needs, is brutally rare. I’m not going to pretend otherwise.

Part of why this feels so precious is exactly because I know how many disabled people are still fighting for it, and how much of that fight is systemic, not personal.

I’m holding both. The privilege, and the unfairness of it.

I don’t think that’s going to resolve. I think it’s just what it feels like to get something good inside a world that doesn’t hand it out fairly.

But I know it’s something I want to keep talking about. I want to keep being involved in helping other disabled folks make this a reality for themselves. Whatever that might look like.

Chat soon,

A

It’s the body she’s in. And she respects herself and her body enough to take care of it, knowing that she deserves a good life within it.

She spoke of the grief attached to her body, and of the ongoing reality that it can’t do what it once did.

Of how she’s struggled to align herself with self-love rhetoric — because of its relationship to capitalism, but also because of the sheer amount of energy it takes to practice that style of self-love.

So her focus is to let her body be, as she lives the life she wants to live.

This was such a fresh perspective for me. The idea that you can coexist with your body in a way that is simply... neutral.

It made me reflect on my own relationship with my disabled body in the 20+ years I’ve lived in it.

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What I’m doing is a leap, but I need to own the decision and trust myself if I want to make it work. He’s already on board and cheering me on, and I need to do the same.

I nodded through the tears. He was right. But in the back of my mind I was still entertaining the voice that tells me over and over again that I’m not doing enough.

I think I’m constantly in pursuit of finding the right balance of how I show up in my relationship with my husband. Of being enough, but also not too much.

Enough of a contributor, not too much of a burden.

And the thing is, it’s not my husband putting these parameters in place. Far from it. It’s me.

Well — not me, exactly.

It’s the internalized ableism I’ve built up over twenty-plus years, that quietly tells me my value is tied to how much I can contribute. The one that’s been around for so long, it’s shaped how I evaluate myself.

It leaves me pushing and tugging myself into this unachievable, impractical mold. And it’s exhausting.

And now, to top it all off, I’ve chosen to step away from my freelance writing gig and into something newer and more intangible with the work I’m doing across Seated Perspectives, the Gentle Content Club, and the Disabled Joy Collective.

These are all projects I genuinely believe in. But they require me to take risks, and make less, and be less of a “contributor” within my partnership with my husband, at least for a while.

When I tell you this has been playing all sorts of tricks on my brain…

Ever since I became a disabled teenager, I took on the mantle of proving to everyone that I could take care of myself. That I could do it alone. That nobody would have to worry. That I would never, ever be the thing that weighed someone down. Ever.

And I know I’m not alone in this. I’ve had conversations with a few disabled friends about how hard it is to loosen our grip on the independence we do have — how hard it is to make room for help, for love, for someone else’s belief in us.

We’ve spent so long proving we can carry our own weight that being cheered on can feel almost destabilizing. Like, wait, you don’t need me to prove that this is feasible first?

So here I am, with my partner cheering me on as I take on this challenge, as I build things I genuinely believe in. And there’s this nagging voice in my head telling me I’m being fanciful. That I could do so much more for us as a couple if I just took on a full-time job. That I’m costing our future. That this is never going to become something big or fruitful.

I hate that voice. I hate that I let myself listen to it.

But I’m starting to think the work isn’t about getting rid of it. It’s too old, too deeply rooted, too practiced. It’s not going to pack its bags just because I ask nicely.

Maybe the work is learning to answer it. Thank you for your opinion. I hear you. I know you think you’re protecting me. But I’m going to try something different this time.

I’m going to trust the people who love me when they tell me they’re not keeping score.

I’m going to trust myself — the same determined, brave person who got me this far — to know that what I’m building matters, even when it doesn’t look like contribution in the way I’m familiar with.

And when the voice pipes up again tomorrow, and the day after, and the day after that — because it will — I’ll try to meet it with the same frankness my husband met me with across the kitchen table.

Thank you for your opinion. I’m going to try something different.

Deep breath. To settle into my body and stop running so fast in my mind.

Deep breath. To direct air to my shoulder and side, which have been complaining since yesterday.

Inhale, expand the rib cage. Feel the muscles stretch. Exhale, they return to their natural (currently) state.

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And now that I’ve sat with it for some time, I think it might be one of the most important (and potentially overlooked) parts of showing up for disabled people.

Here’s what I mean.

So much of what makes navigating the world as a disabled person exhausting isn’t the disability itself — it’s inaccessibility, the systems that support it, and the many assumptions people hold.

The assumptions are perhaps the most annoying part. Because they force us, as disabled folks, to justify our needs or existence or autonomy.

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I’ve seen this everywhere.

In the workplace, where employers decide that hiring a disabled person will be complicated or burdensome — without ever actually asking what that person needs and how they can meet those needs.

This means the door closes before the conversation even starts because no one was curious enough to find out how to make it work for everyone. And even if the disabled person does get hired and likely compromises on their needs so as to not draw attention to themself, people in leadership are often not humbly curious enough to check whether there’s anything they could be doing better.

I see it in doctor’s offices. There’s a specific kind of frustration that comes with sitting across from a medical professional who treats their textbook knowledge of your condition as the full picture. Who doesn’t ask about your day-to-day. Who doesn’t get curious about what living in your body actually looks like. Who doesn’t believe that you might know more about your lived experience with a condition than the one paragraph they read for one class, maybe. I’ve lost count of the times I’ve left an appointment thinking, if you had just asked.

I see it in everyday interactions, too. Someone stepping in to “help” without checking if that help is wanted. Someone assuming what you can or can’t do. Someone interpreting your needs through their own lens rather than yours. It usually comes from a kind place. But kindness without humble curiosity can still cause harm.

And I see it in systems. Benefits systems, insurance, policy — places where decisions get made about disabled people’s lives without input from a variety of disabled realities. There’s often this undercurrent of suspicion baked into these systems, an assumption of ill intent, as though needing support is something that requires proof beyond what should be necessary.

What all of these things have in common is the absence of what I’d call humble curiosity.

To me, humble curiosity is the willingness to say: I don’t know what this person’s experience is, and I’m not going to pretend I do. I’m going to ask. I’m going to listen. And I’m going to let their answer shape how I show up.

It’s humble because it requires setting aside the idea that you already know. It’s curious because it means genuinely wanting to understand because you recognize that someone else’s lived experience holds knowledge you don’t have.

I think this is one of the most foundational things that can shape allyship for the disability community. The willingness to not know, and to be okay with that. To approach someone’s experience with openness rather than assumption — and to ultimately understand that there are no universal experiences within the disability community. So you need to keep practicing humble curiosity over and over again.

Here’s what this could look like. The employer who asks “what would help you do your best work here?” instead of assuming the worst. The doctor who says “tell me what a typical day looks like for you” instead of relying solely on a diagnosis code. The friend who checks in with “how can I support you?” rather than deciding on your behalf.

These aren’t radical acts. They’re small. But I genuinely think they have the power to change so much.

I think a lot of us in the disability community are so used to being on the receiving end of assumptions that we’ve almost stopped expecting curiosity. And that’s worth sitting with for a moment, the idea that we’ve had to lower our expectations of being asked about our own lives.

(Aside: there is a balance to be had here. Because we’re often confronted with acts of invasive curiosity about or condition or our visible differences, and that’s not ok.)

So if you’re reading this and you’re thinking about what it means to be a good ally, I’d offer this: start with humble curiosity.

You don’t need to have all the answers. You don’t need to be an expert on someone’s disability. You just need to be willing to ask, to listen, and to let what you hear actually inform how you move forward.

That’s it. That’s the whole thing.

I’d love to hear from you — where have you experienced (or practiced) humble curiosity? Where do you wish you’d seen more of it?

Feel free to use this prompt as part of your journaling practice or just to write a response at your own pace. I’m always open to reading what you’ve written if you’d like someone to receive it.

Prompt: Take a moment to check in with your body. How are you feeling towards it today? How does that differ from how you usually feel towards it? Where are you in your relationship with it? Do you see that changing?

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We have to settle for the fact that much of the world isn’t designed for us. That many experiences remain out of reach or, at the very least, deeply uncomfortable for us.

We have to settle for back-alley pathways into spaces (literally and metaphorically). For the one designated spot. For systems that forget us. For leaders that are happy to leave us behind.

On top of everything: we’re expected to be grateful for the things we do get. That we should appreciate the leftovers. Be kind to people who are invasively curious about our bodies. Stay well behaved.

And that can quickly become a learned behaviour.

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When we were looking for a place to live in during our renovation a couple of years ago, I naturally gave myself the task to look for apartments we could live in. What I only half realized at the time is that I was doing this because my accessibility needs directly impacted where we could and couldn't live.

Because of this, I was directly exposing myself to the potential rejection and inaccessibility I knew would come. Rather than share the responsibility of finding something that would meet my needs with my husband, I took the brunt of it.

And somehow I was still surprised when I felt sad and frustrated and overwhelmed when it turned out to not be easy. In the words of my therapist, I choose to take on these responsibilities to save other people from the work it takes to just exist in a disabled body. And then I don't give myself the space to admit that it's hard and that I could actually benefit from sharing the burden.

Still letting that sink in. We had a similar conversation about this recently, so I can’t quite say I’m done with this yet.

But I figured I would share because I so often focus on the joy that exists for disabled people. But that doesn’t mean there isn’t a whole lot of hurt that exists too.

Sometimes I think about what the world could look like if resilience wasn’t a requirement for living with a disabled body.

What if I could move through a week without the low hum of friction that comes from navigating spaces and systems that weren’t designed with me in mind?

If I could use the energy I do have not on administrative burdens or the disability tax, but on things that give me joy?

And I find myself wondering what we might do with all that energy if we weren’t spending so much of it on the basics. What we’d create. How we’d rest. Who we’d get to be.

It feels like I’m relearning my body and how it works.

Finding the rhythm it operates in, the sheer potential it holds. There is nothing passive about living in my body, disabled as it may be.

I think that’s part of what we challenge, no? As disabled women?

The thought that disabled bodies are static. Unproductive in every sense of the word. Meaningless. (If we ascribe to the capitalist version of meaning, that is.)

That’s so far from being true.

My body talks to me.

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What do I want feet for if I have wings to fly?

Frida wrote those words in her diary in 1953, alongside a watercolour of severed feet sprouting a kind of wilting plant. She wrote them around the time her right leg was amputated below the knee — the culmination of a lifetime of pain that had begun when she was six years old.

I knew that before I went to La Casa Azul. I knew the broad strokes. But to enter the house where she was born, where she lived for most of her 47 years, where she painted and loved and suffered and died — that healed something in me.

So much of Frida’s life and art was shaped by her disabilities.

She contracted polio at the age of six, and the disease damaged her right leg and foot, leaving one leg thinner and shorter than the other. She spent months bedridden, isolated from her peers, and began retreating into imagination.

In her diary, she wrote about an imaginary friend, a girl her own age who could run and move the way she couldn’t. Even then, Frida was finding ways to fly.

She recovered enough to return to school, and she was brilliant. She was one of the first female students admitted to Mexico’s elite National Preparatory School, where she planned to study medicine. She was headed somewhere. And then, on September 17, 1925, everything changed.

She was eighteen years old. She and her boyfriend, Alejandro, were on their way home from school when the bus they were riding collided with an electric streetcar. The wooden bus was dragged and crushed. Several passengers died. Frida survived, but barely.

An iron handrail pierced through her pelvis. Her spine was broken in three places. She had multiple fractures across her body.

She was confined to bed for three months. And that was where the painting began in earnest. Her mother had a specially made easel built so Frida could paint while lying down, and her father lent her his oil paints. A mirror was placed above the easel so she could see herself.

She had been looking at herself — really looking — ever since.

And from there, she created. She painted self-portraits over and over. Roughly 55 of her 143 known paintings are self-portraits. She once said, “I paint self-portraits because I am so often alone, and because I am the person I know best.”

But I think it goes deeper than that. She painted self portraits and held a mirror up to her disabled body on a constant basis. She turned her body inside out on canvas: showing her broken spine, the nails embedded in her skin, the corsets that held her together.

She didn’t paint dreams. She famously rejected the Surrealist label, saying: “They thought I was a Surrealist, but I was not. I never painted dreams. I painted my reality.”

Her reality was a disabled body. And she displayed all of herself in her work.

Her clothes were an intentional choice, too. And this is one of the things that struck me most in the museum.

Frida adopted the traditional Tehuana dress from the Isthmus of Tehuantepec region in Oaxaca, Mexico, where her mother’s family had roots. The Tehuana outfit consists of a loose, square-cut embroidered blouse called a huipil, a long flowing skirt, and elaborate braids adorned with ribbons and flowers. The women of Tehuantepec led a matriarchal society, and the clothing was a symbol of female power and independence.

For Frida, these garments served a dual purpose. The long skirts concealed her right leg. The square blouses and shawls draped over the rigid structure of her medical corsets. The flowers and braids and jewellery drew the eye upward, to her face and her gaze, away from the parts of her body she wanted to hide.

She was honouring her identity — her Mexican heritage, her indigenous roots, her politics — while also hiding the parts of herself she thought of as imperfect. She once wrote, “I must have full skirts and long, now that my sick leg is so ugly.”

She also decorated her plaster corsets, painting them with communist symbols, flowers, tigers, monkeys, and streetcars like the one that almost killed her. She made the thing that held her body together into something beautiful, something hers.

This is something I understand myself. I’ve done it with tattoos. At the top of my back, I have an ugly surgical scar from when they added screws to my spine after the accident that caused my spinal cord injury. And almost 10 years ago, I added a tattoo to cover it up. A bouquet of flowers. Making something ugly, beautiful, but also hiding the part of me that holds such a clear connection to the worst day in my life.

Strolling through La Casa Azul, you feel how much of the house holds the person she was. This wasn’t a gallery; it was her home.

She was born here in 1907, and she died here in 1954. The cobalt blue walls that she herself chose to paint. The garden bursting with bougainvillea and cactus and volcanic stone.

The kitchen with its original earthenware. The studio with her easel and the wheelchair that was specially designed to move up and down so she could paint.

And the ramps.

There are ramps in the house, built for Frida’s wheelchair towards the end of her life, following the amputation of her right leg in 1953.

She lived only about a year after the surgery. Seeing those ramps, knowing what they meant, knowing that this house adapted to her body even as her body was failing her. It was beautiful. And it connected me to her in a way that I can’t quite put to words.

In a clipping of a newspaper article in homage to her, she was described as fragile and strong, like a cactus flower. How beautifully poignant is that? “Fragil y fuerte como una flor de cactos.”

The cactus flower was one of Frida’s recurring symbols in her art. The pear cactus bloom is extraordinarily delicate, lasting only a few hours once it opens.

She painted it in Magnolias (1945), nestled among buds that hadn’t yet bloomed, as if the other flowers were protecting something too fragile and too brief for this world. It was her shorthand for the closeness of life and death, the beauty in the fleeting, the tenderness of things that don’t last.

But a cactus flower isn’t only fragile. It grows from something covered in spines, something that survives in the harshest conditions, something that holds water inside its body even when the world around it is dry. Fragile and strong. Ephemeral and permanent. That was Frida.

And it’s so many disabled women.

The exhibit was such an emotional experience to witness.

This disabled comet of a woman who left a vast, impermeable legacy behind.

She went through so much in her life, and she painted through it all. She made herself visible. She refused to be erased.

She was the original disabled baddie. She left a mark on the world that will never be erased. And it was all, unquestionably, her.

In the last year of her life, confined increasingly to bed and the wheelchair, Frida wrote in her diary:

Pies, ¿para qué los quiero si tengo alas pa’ volar?

Feet, what do I need them for if I have wings to fly?

I think about this constantly. About a disabled woman, in 1953, facing the loss of a limb after a lifetime of pain and choosing, on that page, to imagine flight. Not grief. Not surrender. Wings.

She didn’t deny the pain. She never denied the pain. It’s in every painting, every diary entry, every decorated corset. But she also didn’t let it be the final word.

Now I understand her so much more. And sitting in the house where she lived, seeing the ramps and the easel and the mirror and the painted corsets, seeing the way her life has been held and honoured in the space she called home, made me realize that she is us.

What a special place. What a woman. What a gift she left for those of us who came after, carrying our own bodies through a world that doesn’t always know what to do with us.

One of the (many) journeys I’m on currently is discovering my style as a wheelchair user.

After yearssss of just wearing what “worked” or what did a good job of hiding the parts of my disabled body I didn’t like, I’ve started being way more intentional about choosing clothes that FEEL GOOD on me.

(What a radical thought, no?)

And I’m having so much fun with it.

For example: I recently discovered straight leg jeans!

As a millennial, my teenage self was indoctrinated into the skinny jeans craze. But even after they started going out of style, I held onto them for dear life, because they were so good at hiding the fact that my thighs had lost their musculature and were a bit flat.

Any time I tried on other types of trousers, I got this knot in my stomach and immediate desire to change back into what felt familiar.

I thought these were the jeans for me. Forever.

But then I saw what other wheelchair users were wearing and I noticed that they actually looked GREAT. And that included straight leg jeans.

So I took the plunge, and tried on something different.

Folks. I’m in love with them.

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