Musings

The Capitol Crawl Anniversary

34 years ago on March 12, a group of disability activists abandoned their mobility devices to climb, crawl, and edge up the steps of the U.S. Capitol in Washington, DC; forcing Congress to see the struggles that people with disabilities have to face day-to-day due to inaccessible infrastructures.

The “Capitol Crawl” protest spurred Congress to pass the ADA (Americans with Disabilities Act) which was signed into law on July 26, 1990. Incredible. Although I’m Canadian, this critical event in US history impacts and influences beyond borders as a legal framework to follow. 

Image description: Kae is smiling while sitting on the steps leading to the U.S. Capitol Building.

Image description: Kae is smiling while sitting in her wheelchair in front of the steps leading to the U.S. Capitol Building.

Last fall, I had the opportunity to see the Capitol building in person. I couldn’t be more proud and thankful to be part of an amazing, resilient community that fought for our rights before us. 

P.S. left a piece of me in DC. Shop #LetsEndMD here: www.kaetran.com/shop

Image description: Kae is standing by a wooden utility pole on the sidewalk, posing beside her small #LetsEndMD sticker that she stuck on the back of a street sign, with the Capitol building in view of the background.

Image description: A close up of Kae’s #LetsEndMD sticker on the back of the street sign on the utility post with the Capitol Building in view of the background.


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Rare Disease Day

Image description: A photo of Kae leaning on a shelf, wearing a white tank top, black belt and beige cargo pants. Both her hands loosely resting on her belt. She wears a neutral expression as she looks into the camera. Her straight hair is all moved to one side. Dark green lettering for “LGMD2B/R2” is broken into each corner of the image as a graphic design choice. “Limb Girdle Muscular Dystrophy 2B/R2” is also in green text, written out on the right-hand side of the image. A vertical strip of a white zebra pattern is behind Kae which is a symbol of rare disease patients.

Image description: A quote by Thomas Jefferson in 1786 in black text on a textured paper background, “Who then can so softly bind up the wound of another as he who has felt the same wound himself?”.

Today is Rare Disease Day. 🦓🧬

I live with Limb-Girdle Muscular Dystrophy, a progressive muscle-wasting disease with no known cure. I was diagnosed in my teenage years and hid it for as long as I could. Now, I intentionally have it in my bio and openly write about life with MD for everyone to see. I’ve come a long way since my days of internalized ableism; my formative years were full of fear, shame, anxiety, ignorance, and isolation. Eventually, I found the courage to share my story. Self-advocating began out of necessity but later grew into a passion for helping others to not feel alone—I never want anyone to endure what I had to go through.

The internet is the first place to start when seeking health/healthcare information, resources, and support, and people use social media to find others with the same health condition—which is how I found my community. Currently, approximately 1175 people worldwide are confirmed to have LGMD2B/R2, including myself (source: Jain Foundation). Rare disease patients are often neglected due to our limited patient population and therefore, funding is hard to secure. With more awareness and patient advocacy, it will incentivize pharma and biotech companies to focus on us. We matter, our numbers matter, and we can begin to close the funding gap to accelerate developing therapies.

TLDR: if you’re part of the rare disease community, find and sign up for your patient registry and stay connected. If you’re not, hear us and see us. Be our allies and support; we’re stronger together. 💚


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There's layers to this

Image Description: A Selfie of Kae lightly smiling in a car with the sun hitting her face; wearing a yellow ribbed beanie toque, red vintage Burberry sunglasses, and a black zip-up hoodie, underneath an army green quilted jacket.

Image description: photo taken from the internet of a yellow duck plushie bundled up in a scarf around its head, wearing cat-eyed shaped sunglasses, with its orange beak making a huge frown.

The feeling when you have to bundle up to brave the cold with a disability. As time passes, I’m finding I’m increasingly dreading getting dressed now as it exerts a lot out of me. Essentially, wearing less is becoming more accessible to me. Perhaps my sign to move somewhere warmer? Any suggestions? 

I can’t wait to touch the grass again. ☀️


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Ride a horse, save MDC.

On behalf of myself and the Muscular Dystrophy community, one of my favourite humans, Kayla Welsh is raising money for Muscular Dystrophy Canada (MDC) by participating in the 2024 Guacho Derby; a 500 km race on horseback through the Patagonian wilderness. Very exciting and very Kayla, if you know her.

I’ve known Kayla since the ninth grade (circa 2005) which is the beginning of my symptoms, long before I was finally diagnosed with MD. To know someone who knew you before your life-changing diagnosis and decline is deeply special; a time in history I’ll cherish more than anything alongside our steady friendship. There aren’t many people besides family that know that side of me so her choosing MDC is very touching. (Love ya, Squelch!)

Please share and donate if you can, 100% goes to MDC. These funds help support MDC’s programs, services, research initiatives, and provide funding for life-changing equipment to enhance the lives of those affected by Neuromuscular Disorders.

Fundraiser link: https://www.gofundme.com/f/gaucho-derby-for-md-canada-lets-end-md

You can follow along on @gauchoderby’s Instagram to watch the race unfold from Feb 8-17! Go Kayla! 🇦🇷🐎✨ 

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Bubble Girl

Remember the movie, Bubble Boy? I finally got around to watching it this week while ironically, self-isolating and recovering from catching COVID. It was nostalgic, classically 2001, and eye-opening but sadly, the real story of David Vetter didn’t end with a happily-ever-after. The movie doesn’t accurately represent David’s story but it gives you something to think about and learn from. I’m truly in awe of the team that stepped up for this family.

In many ways, I felt I could relate to Jake Gyllenhaal’s character and thus David, not just in this moment as I recover at home but as a whole. There are many parallels between someone with a progressive disability and someone who lacks an immune system; both are deprived of the outdoors, participation in society, and human interaction but the main difference is I won’t die if I get exposed to germs. 

Today, there are still many people who are immunocompromised. Let this be a kind reminder to respect people’s decision to wear PPE, and do the same if you know it can save a life. 

Image Description: Kae takes a selfie of herself lying down on a physiotherapist table, wearing a black mask.

Image Description: Black sans serif text that reads “I can be in my bed and still be “busy” you know. Busy gathering strength” on a white background.

Image Description: A screenshot of a tweet by Nia (@chronicnotebook) that reads “One aspect of chronic illness that people don’t see is compromise. You’re constantly trying to figure out what kind of life you can lead, that will bring you joy without making you feel too sick. That’s really hard to do and it comes with a lot of grief, frustration and sadness”.

Image Description: A screenshot of Kae’s Threads post that reads “I looked up the real story behind David Vetter’s life and his bubble suit was designed by NASA, costing $50,000. I’ve so many questions. How did the hospital get NASA to care and fund this ultra-rare disease? What strings did this family have to pull to get people to care about David’s life? Did NASA only take this on because it gained international attention or did that happen after the fact? If they can do this back in the 70s, how can we get people to care about rare diseases today?”


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Crip Time Wrapped

I could go on about the disabled experience and how much of our energy and time is spent meeting the bare minimum of daily living, including the extra time spent performing tasks needed for our unique situations. It takes a lot for us to show up but the complexity and visibility of labour aren’t transparent to the public.

Our patience is truly unmatched. We experience time and space differently than able-bodied people do but there is more to life than just existing and getting by—we deserve to live life fully.

The Accessibility for Ontarians With Disabilities Act (AODA) was enacted almost 20 years ago to develop, implement, and enforce standards of #accessibility related to goods, services, facilities, employment, accommodation and buildings; the goal is to get the province fully accessible by 2025. We’re nowhere near that and we’re soon entering 2024. We still have a long way to go.


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evolution of a progressive disease

Image Description: A 6-photo Instagram (IG) story prompt of Kae from 2018-2023, with the caption “RBF (Resting Bitch Face) is unfortunately permanent but everything else became softer”. She is referring to her hair colour, makeup, and jewelry change over the years.

Image Description: A screenshot of someone replying to my 6-photo evolution IG story prompt, saying “RBF in 2023 looks happier than previous years”.

For context:

In 2018, I was healing from a traumatic relationship, jumping from home to home, spending a lot of time in my car, escaping the harsh reality of living off ODSP and navigating an inaccessible job market — all the while dealing with #ableism, my declining health & mobility. I felt so alone. I wasn’t sure I would ever see better days.

In 2019, I started to share my story and advocate for rare diseases and the injustice People with Disabilities face. I was learning to find my voice. I was also finally able to find a long-term home that I shared with my new partner. Things were starting to look up.

In 2020, COVID-19 was declared a pandemic and we were in lockdown. My relationship ended during this time but I was lucky to keep the home and they moved out. I had no idea how I would afford things alone but I was grateful to not be on the streets. I no longer had my car to escape to either. 

In 2021, I make it work as I go and get the hang of living alone; finding ways to live independently. I still kept my social circle small to avoid catching COVID. I spent the year surviving & adapting to my new life alone.

In 2022, the lockdown is lifted and everyone moves on. Not me though, I still have to live in isolation bc of my disability & not having money. Living alone also meant not having support whenever I needed the help. The reality of my declining mobility takes a toll on my mental health but at least I’m not homeless. 

In 2023, I’m still here—making things work. My disease is still progressive, my mental health still wavers but I’ve got a stable home that I’m grateful for every day and that’s where I can continuously heal, rest, and grieve. I take it day by day. I’m so proud of myself. ♥️ 


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Alexa & Accessibility Event

Image Description: Kae and Mara pose together in front of an Amazon-branded backdrop.

Image Description: Joel Dembe and Kae pose together in front of an Amazon-branded backdrop.

Image Description: An image of a woman doing a live demo of Amazon’s products on stage.

I recently had the pleasure of attending Amazon Canada’s first-ever Alexa & Accessibility Event and it made me happy to witness not only a company trying to build an inclusive world but to also be in a room full of people with disabilities and hear their stories. It felt empowering to share space together because for once, we weren’t an afterthought; this was an event made with us in mind. 

New assistive technology aside, I was pleasantly surprised to bump into Mara (@atemara on Instagram), a disability advocate I had only known and resonated with online and yet here we are in this moment together. Our chance meeting validates our hard work in ensuring our disabled community is seen and represented. I’m proud of us and our community but this is only the beginning—we’re no longer taking a backseat.

Listen to disabled voices. Follow disabled content creators. Hire people with disabilities. Designing for disability first is designing for all.

Thanks for having us, Amazon! 💙


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2023 International LGMD Conference

The Speak Foundation’s International LGMD Conference was the reason I went to Washington, DC in the first place. It was my first time attending such an event. My disease is rare which makes getting together in person that much more meaningful. It was overwhelming in the best way. I left the conference more hopeful than afraid; knowing I wasn’t alone and that there *are* people and organizations out there thinking of us and prioritizing us. We just have to be patient and continue along our path of hope, which isn’t easy to do without having a community.

I ended up meeting so many lovely people, and knowing we’re all fighting the same fight is an incredible feeling and an instant bond I’ll always cherish. I don’t think I would’ve understood the power and importance of community if it weren’t for my disability. Community motivates and gives me strength. We don’t have to do things alone; no one can. I pray everyone can find their people in this lifetime.🧡

I had such a great time in DC. Hope to see y’all at the next conference! x


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Hold fast

Image Description: Photo of a class pic of Carey and Kae sitting one person apart from each other in the 6th grade. The name of the school and year 2002-2003 is on a sign at the front.

Image description: Recent close-up photo of Kae on the left, beside her childhood best friend, Carey. Both are smiling into the camera, taken on a night out together.


We met in the fifth grade and became best friends the following year, and then I moved away to another city (numerous times) but we always kept in touch. I wasn’t sick then but eventually, upon entering high school, I would experience unexplainable symptoms.

In late 2008, I was officially diagnosed with #LGMD but none of us knew what that really meant. I didn’t talk about it. I didn’t know how to. My symptoms were also mild and easy to ignore then too. We managed to make many core memories together whenever I came back to visit, not knowing some of those moments would be the last.

Fast forward to the present day, we’re living in the same city and I’m still fighting the fight of my life but in a much more intense way. This disease is ruthless and unforgiving. It’s progressive and I long for my past self often but to know someone who knew the old me, accepts all of me, and has continued to evolve along with me on this challenging journey is truly something special. Our circumstances have changed but our bond hasn’t. Those who’ve witnessed our dynamic in person can attest to our unconditional love for one another. Happiest birthday to my childhood friend who has become family. I love you, Carey 💕🌸✨


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Happy Muscular Dystrophy Month

Image Description: Photo taken from behind/back of the room with the event’s attendees facing towards the front. Mike Moore who is Toronto’s Walk & Roll Ambassador this year is sitting at the front beside the host who is speaking into the mic.

Image Description: Kae is smiling and sitting in her wheelchair posing next to the Toronto Zoo sign welcoming Muscular Dystrophy Canada.

Image Description: A photo of 3 pin buttons given out at the event; starting clockwise, the top pin is the number 3 to represent my third event, the second one says “I (heart) someone with a NMD”, and last one is a Walk&Roll for MDC branded pin.

This Sunday the 24th was my third time attending Muscular Dystrophy Canada’s Walk & Roll event in person and it was so much fun. There is something extraordinarily powerful about being together in the flesh with those who are not only fighting the same fight but meeting allies showing solidarity for our #neuromuscular community.  

Jessica Oddi and I managed to raise $1705 for this year’s fundraiser. These funds help support MDC’s programs, services, and research initiatives, raise awareness, and provide funding for life-changing equipment to enhance the lives of those affected by neuromuscular disorders—a big thank you to everyone who donated or shared via social media. We are forever grateful for the power of community and will continue to advocate and raise awareness for rare diseases. 

I can’t wait for next year’s event 🥰 …team shirts, anyone?

If you’d still like to donate, here is the link: https://muscle.akaraisin.com/ui/WalkRollMDC23/p/kaetran

Watch the reel on Instagram here: https://www.instagram.com/p/CxyfRrcPgsK/


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Not just a symbol

Image Description:

Looking back, I barely acknowledged the International Symbol of Access (ISA) because it didn’t apply to me. When I got diagnosed with Muscular Dystrophy, I grew to fear it and everything it represented. It’s been a long and ongoing journey of finding myself and what it means to identify as a person with a progressive disability. Today, I can say I proudly embrace the symbol. It represents much more than access to me; it communicates our existence in society. The more I see the icon, the more I’m told that we’re not forgotten about and belong in spaces just like everybody else. Although I’m learning firsthand that the mere presence of the symbol doesn’t necessarily mean complete or proper access, I still get excited to see it. It feels like a little I-Spy game that also happens to itch my design brain. (Shoutout to Susanne Kofoed who first designed it in 1969). While the symbol isn't visually inclusive of the entire spectrum of disabilities, we, as a society, still have a lot of work to do, from unpacking ableism to understanding the value of accessibility and diversity within disabilities.


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Cyclical break (downs + through)

Image Description: POV of looking down at Kae’s legs using two TENS machine pads attached to her thighs.

Image Description: Meme from the internet that alternates between “I feel off” and “I’m back” using arrows moving clockwise in a circle to show it’s a cycle.


Haven’t had much to say lately. The older I get, the more I feel like I’m susceptible to losing my mind. As my disease progresses, I inevitably lose parts of myself because some of it resides in movement; it’s speechless and nonverbal. My body is losing its expression.

Humans move, explore, and release emotions through their bodies but for me, I’m sinking my way in quicksand to a standstill. That’s how this disease works. I can put up a good fight but I don’t know if any amount of mental coping can replace the physiological benefits of movement. Words can’t always express the unspoken. My thoughts are becoming louder as my body becomes distant and I retreat into myself with a snowballing tension that has nowhere to go. 

While I am taking it day by day, grateful to still have my mind, I know it’s not realistic to be consistently sane with a progressive disability. It’s difficult to maintain as it requires a mountainous strength of resilience in the face of a seemingly insurmountable reality. A scream, a cry, or a punch in the pillow is cathartic and needed but only then am I reminded that if the phoenix bird can rise from the ashes again, we can too. 

Image Description: A screenshot of Kae’s Threads reply that says “Everyday I rip the band-aid off and fight for my life”, to an image of a person lying down with a giant band-aid covering their whole body with the text that reads “‘Put a bandaid over where it hurts’ me:’

Image Description: A photo of a bottle of MySupplyCo’s Brain Stack mushroom supplements on top of a journal. Use code “KAE15” to save 15% off your next order.


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how do you expect me to live, laugh, love in these conditions?

Image Description: 1. Photo of an aesthetic wooden homemade ramp outside a gothic-looking business storefront in Toronto that initially sparked Kae’s idea.

Image Description: A screenshot of Kae’s first Threads post that says “Give me access or give me death!!!”.

Image Description: “Give me access or give me death” is in white text beside a white triangle representing a ramp enclosed in a white border on a black background, presented against a light textured background.

Image Description: “Give me access or give me death” is in black text beside a black triangle representing a ramp enclosed in a black border on a white background, presented against a dark textured background.

Designed a thing based on what I first wrote on Threads. Ultimately, it’s a play on the infamous speech, “Give me liberty or give me death!” made by Patrick Henry in 1775, while nodding to the fact that inaccessibility is quite literally and figuratively violence against Persons with Disabilities—and of course, I had to throw in a meme. 

Image Description: A photo taken from Kae’s POV of her not being able to enter a path because it’s not paved.

Image Description: An adapted meme kae made of an illustrated couple with a girl on top of the guy with text that says “Watch Crip Camp with me and we’ll end up like this”.


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Summertime Sadness

Image Description: A selfie photo taken in 0.5 from the top of Kae in her black bikini, sitting on her condo balcony with a bowl of cherries and a book titled, 'The Wisdom of Your Body’ by Hillary L. McBride, resting on her lap with the golden hour shining on her.

Been hearing a lot of comments like “I’m noticing you’re going out a lot more now that you have your wheelchair. Nice! Good for you.” And while they probably don’t mean harm by it, it does come off somewhat patronizing. The truth is, it’s about the same but because it’s summertime, It might be more than usual. There are simply a lot more things happening within the city and the weather makes it easier to get around but also—isn’t everyone else doing the same and taking advantage of the warm, beautiful weather?

We have to remember social media is a glimpse into our lives and is almost never posted in real time. At least for me, I don’t post everything I do or feel at the exact moment it’s happening except for right now, I’m feeling the summertime sadness starting to creep in. When it gets cold, it’s extremely unpleasant to go outside, and a wheelchair simply can’t get me through the difficulties a harsh winter brings. It’s the reality for a lot of us.

Until then, I’ll try to subdue my anxiety and enjoy the remaining warmth summer has to offer. 


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Healthy Aging with Muscular Dystrophy

I didn’t choose this life, it chose me. Living with an incurable, degenerative disease means taking my power back by adopting healthier habits. While they don’t combat #MuscularDystrophy itself, they will influence healthy aging which will then lessen the burden of aging alongside my MD symptoms. Doing the work now is doing it for my future self so I can continue feeling good from the inside out ♥️ 

P.s. those who know me know I’m a huge advocate for connecting the mind + body holistically through nature’s gifts. My Supply Co is a great 🇨🇦🍄🌿 company inspired by nature, informed by tradition, and led by science.

Use code: KAE15 to save 15%.


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Out 'n Aboot

Image Description: Photo of Kae smiling and posing in her power wheelchair at the Toronto Festival of Beer.

Image Description: POV photo of Kae in her power wheelchair, looking down at her legs going up the accessible stage area.

Two weeks ago, I attended my first big outing using my wheelchair. I like to avoid crowded places for both personal and practical reasons but I knew I couldn’t avoid discomfort and continue to miss out on experiences forever. I was both simultaneously excited and nervous but the Toronto Festival of Beer was not only accessible, they provided me accommodations when requested! To feel relief is an understatement. It was refreshing to experience customer service that was actually helpful; they had evidently thought of inclusion while planning this event—and that’s how it should be. I was able to relax and enjoy my time out. It also helped me to attend with people I trusted so I could build the confidence and knowledge I’ll need to navigate my new life on wheels. 

It takes more than just a mobility aid and ramp; it takes a whole damn interconnected support system to aid in one’s transition and evolution with a disability. 

Moreover, I was the only wheelchair user at this event but my main takeaway from this new path of being visibly disabled is it’s teaching me to show up unapologetically. To my disabled friends, don’t be shy. Don’t be ashamed. Go out and take up space because we deserve to have a good time and be as unserious as @tpain ♥️

Image Description: POV of Kae’s hand holding up her TFOB mug, giving cheers with her two companions.

Image Description: Photo of a ADA Cable Cover ramp on the grounds of TFOB.


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This is normal

Image Description: a collage of various mobility and assistive devices on a white background.

This is your loud reminder that mobility aids are more than okay and nothing to be ashamed of. There is no right age that one should start using one. You have to do what you can to help you live your life, and no one should make you feel less than for being proactive in retaining your independence. What’s debilitating to people with disabilities is not the body itself but society’s attitude and inaccessible built environments that make it much more difficult to start using one. Disability representation is pivotal to our self-acceptance as seeing others like ourselves, not only existing but thriving would make the idea of needing mobility aids/assistive technology a lot less daunting. Be proud of how far you’ve come in a world not built for us. ♥️

Happy Disability Pride Month!


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Responsible Luxury

Image description: A selfie of Kae wearing a black tube top in the golden evening light with her hair tucked behind her, visibly showing off her two new silver rings by Monica Vinader.

Gold is always tempting but I can’t deny I’ll always be a silver girly. I like to wear the same jewelry and I’m excited to be adding these Monica Vinader pieces to my capsule collection; made with 100% recycled silver. I like supporting companies doing great things for the earth, and you should too!

I’m wearing the Siren Muse Wide Ring & the Deia Domed Ring, both in sterling silver.

Shop here. Use code: US20RAFINSIDER-CF34 to save 20%.


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When I grow up

Watch the Mexican Radio Audio Trend video here.

I never imagined my life would turn out the way it did. I remember when I was little, I couldn’t wait to grow up and do all the things. I had aspirations to travel and experience the world’s offerings as soon as I left the nest.

I also looked forward to trying more trivial things like snowboarding, aerial silks, and dancing my heart out at a music festival,  just to name a few, but my time never came. I naively believed I had all the time in the world to plan and live out my future but the universe had other plans. 

Despair and devastation took over as my body started to betray me, and I was losing myself before I ever found myself—I was just a kid whose life had barely begun.

Life isn’t always kind or fair and yet time has shown me that it’s still possible to live a good life even if it’s different than you expected. We can’t control what happens to us but we can enjoy it with more community support, empathy, acceptance, and celebration of diversity amongst us. xx


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