Image Description: A sign that reads “Welcome to New York”.

Image Description: A photo taken from behind of a vehicle with a navy blue and deep yellow, New York license plate with the ISA symbol.

In my world, where every detail demands careful planning, the chance to take an impromptu day trip feels like a rare kind of freedom. It’s the thrill of a temporary illusion, but some things remain unchanged: new sights to take in, fresh air to breathe, and a break from the familiar rhythms of routine and the mundane. For a moment, the weight of everyday problems and preparation lifts, and I get to simply be—exploring, experiencing, and feeling alive in a way that’s both liberating and extraordinary. I’m much simpler now, and I’m just happy to come along for the ride.

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Image Description: A selfie of Kae in the passenger seat of a car. She is wearing sunglasses and posing with her head lightly resting on her hand. There is a lime green graphic logo cropped from a photo she took. It says “FREAK” with the Nike swoosh logo below it. On the bottom right corner, the word “Certified” is written in white sans-serif text”.

Historically, people with visible disabilities were labelled as “freaks” or part of “freak shows”, and having a rare and unique diagnosis can make you feel like one. No one can relate, which leaves you feeling abnormal and segregated. You know you will never get to live a normal life again, and that brings an unexplainable, isolating kind of grief.

Being different also chips away at your self-esteem; you’re not only battling external judgment and societal expectations but also fighting the endless noise of your inner critic. It’s as much a mental game as it is a physical one. It took me a long time to come to terms with accepting something beyond my control, and yet still, on my darkest days, I inevitably fall back into old habits and shrink. I don’t want to be perceived, and the future feels bleak. I am tired but I am trying.

I’ve learned that survival alone isn’t enough. It’s easy to get swept up in the present, overlooking the trail you’ve left behind but I realize I have to carve out intentional time to reflect and celebrate my wins, or I risk collapsing under the weight of it all.

My life isn’t normal, and it never will be—but normal isn’t the goal anymore. I’ve learned to risk being seen for all that I am, embracing the word “freak” as part of my story. It’s no longer shameful. It’s proof that I’ve survived, grown, and found meaning in a life I thought was over. It’s not, it just looks different—Happy late International Day of People with Disabilities (IDPD) to my people. I see you and I’m proud of us. 💙

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Image Description: a photo of Kae in 2016 dressed as Medusa at a Halloween party, she is holding both her hands upwards balancing the words “disability” and “barriers”, with “disability” being higher than “barriers”.

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This Halloween, let’s remember that for people with disabilities, the real horrors aren’t monsters or ghosts—they’re the barriers society creates. It’s not our bodies that haunt us but the inaccessible buildings, transportation, policies, and ableism that make life feel like a never-ending Halloween nightmare. Yet, we adapt, we resist, and we advocate, transforming society’s fears and limitations into fuel for a world that includes everyone—but it’s still scary out there. Stay safe y’all. 💙🎃👻

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Image Description: A photo of the Northern Lights with lavender purple and mint green colours in the night sky.

Seeing the Northern Lights has always been on my bucket list, and I’m still in awe that I got to experience it without having to travel far. I never thought I’d witness it in my lifetime, assuming it required travelling abroad (cue inaccessibility and air travel).

It started to feel a bit comical, as if we were being teased by news outlets every other week, but the KP Index forecast was strong on October 10th.

Mother Nature has been incredibly generous this year—I feel so lucky to have experienced both the Total Solar Eclipse and the Northern Lights.

For those who missed it, don’t feel bad; seeing the Northern Lights in person is much more subtle than photos suggest—it’s all in the photography but still something worth appreciating.

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Image Description: Kae is an East Asian woman sitting in her black powered wheelchair, wearing a black tank top, beige crossbody bag and cream coloured jeans with black opened toe sandals. She is posing in front of a mural done by the Deaf Artist, Christine Sun Kim. The wall is white with black handwritten text that reads “All Night Future” above a drawing of a visual arch that displays the ASL for “all night”.

Image Description: Blue text on a white rectangle text box reads: “Growing up with a disability is no piece of cake.” Below text is a birthday cake with a slice taken out. Where the slice should be is a pile of sprinkles. Sticking out of the sprinkles is a long to-do list. A blue circle graphic is in the bottom left corner, with white text that reads: “Get the facts to close the gap.”

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Transitioning into adult healthcare as a teenager with a rare muscle disease was isolating and overwhelming, especially without pediatric care or support. No one knew what to do with me or how to help. When I finally received a diagnosis, I was told there was no cure or treatment for my disease, and that there was “nothing they could do.” I entered the adult system without a care plan, without a family doctor, and with no clear path forward. I was left to manage my progressive symptoms on my own, all while navigating the challenges of growing up with a disability.

I became my own advocate out of necessity—repeatedly explaining my condition and symptoms to most providers who had never heard of it. Every time I sought help, it felt like starting from zero, and it still does to this day. For many disabled youth in Ontario, this lack of support and structured transition can result in poor health outcomes that follow them for life.

I’m excited to partner with Holland Bloorview Kids Rehabilitation Hospital to amplify their ‘No Piece of Cake’ campaign to raise awareness and push for change. We need programs that bridge the gap between pediatric and adult care so that no young person with a disability has to face adulthood alone and unsupported. I encourage everyone to get the facts to close the gap. Download Holland Bloorview Kids Rehabilitation Hospital Foundation's report and share it with your networks to help build a healthcare system that sees and supports disabled youth, equipping them with the care they need to thrive in adulthood. #NoPieceOfCake www.nopieceofcake.ca

Image Description/Alt-text L-R:

1. Blue text on a lighter blue background reads: "Challenges in the adult health-care system." Below text, to the left, additional text reads: "2/3 of young adults with disabilities report their health-care needs are not being met." To the right is a graphic of 9 blue people icons, arranged in a 3 x 3 grid, with the bottom row of three almost transparent. At the bottom of the graphic is the Holland Bloorview logo, centred.

2. Purple text on a lighter purple background reads: "Financial implications." Below text is a circle with some medical cross symbols and arrows in the middle. Below circle, text reads: "70% of young adults with disabilities face increased medical costs after transitioning to adult care." At the bottom of the graphic is the Holland Bloorview logo, centred. 

3. Orange text on a lighter orange background reads: "Participation and quality of life implications." Below text is a series of orange icons, including a flower, a brief case, people and a gear. At the bottom, text reads: "64% of young adults' participation in life is limited by their health-care needs." At the bottom of the graphic is the Holland Bloorview logo, centred.

4. Green text on a lighter green background reads: "Barriers to access: 77% of young adults with disabilities face one or more barriers when accessing medical care." Below text is a green graphic of 8 people icons arranged in a line, with the 2 on the right almost transparent. In front of people icons is a lighter green fence icon. At the bottom of the graphic is the Holland Bloorview logo, centred.

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This is what living with a muscle-wasting disease feels (and looks) like.

Image Description: A low-res image of 3 members of the Power Rangers surrounding an old lady, about to bully her. She is holding onto her rollator. Kae wrote “me” in white text over the old lady and had each Power Ranger representing the symptoms of Muscular Dystrophy. L-R: Weakness, Progression, and Atrophy.

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Image Description: "LMGD" is written in a black lowercase sans serif text in the middle of a lime green background square which is a play on Charli XCX's BRAT music album, designed by Kae.

Image description: A self portrait of Kae who is wearing lime green and black, showing off her royal blue nail polish which are the colours of LGMD Foundation. There is text that says LGMD2B and some transparent light green wavy graphic elements decorated across the image, designed by Kae.

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Oh you know, just casually serving LGMD brat. Today is #LGMDAwarenessDay and it’s dedicated to raising awareness for a subgroup within MD. There are over 30 different subtypes of LGMD alone and it progressively weakens the muscles, especially around the hips and shoulders. (Spoiler: This is the one I was diagnosed with).

Life with this orphaned rare disease is wild and unpredictable. Part of putting up a good fight is showing up, letting the angst out, accepting your imperfections, and embracing the chaos that comes with being different. There’s strength in our numbers and I plan on channelling my inner brat for as long as I can so I win and *it* doesn’t.

Happy LGMD Day, my warriors! Proud of you. 💚💚💚 I’m wearing lime green for us!

And a big shoutout to the dedicated researchers, healthcare professionals, and advocates working tirelessly to find treatments, raise awareness, and improve our quality of life.

Image Description: Top left corner says "LGMD" with "Subtype" underneath, both in dark green sans serif font, followed by all the LGMD subtype lettering system in a grid-like structure. The whole canvas is a lime green and there is a dark green thin-line wavy graphic in the background. Bottom right says "Limb-Girdle Muscular Dystrophy" in full. A bingo-identity like poster designed by Kae.

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Image Description: A 4:5 poster Kae designed to promote her new Amazon Storefront on Instagram. The background image is a lime green/royal blue duotone edit of a portrait of Kae who is sitting on a wooden stool, leaning on her black cane. Those are the colours for her rare disease, LGMD. On the left-hand side is an iPhone mockup with a white and lime green striped storefront canopy. The screen has a zoomed-in image of Kae’s hand and her cane from the portrait, overlaid with a transparent black background. White sans serif heading text reads “Kae’s Amazon Storefront”. Below is an Amazon teal brand colour button that says follow and a white arrow cursor hovering over it. On the top left-hand corner of the poster are three icons, L-R: Amazon’s icon, wheelchair symbol, and a wellness hand/lotus icon.

When you’re on a life-long journey of healing and self-care, you tend to experiment on yourself which means many periods of trial and error. I’ve always wanted to share what works for me, what doesn’t, and any brilliant products I come across that may help improve someone’s quality of life and mindset. I’ve subsequently become my own occupational therapist over the years and given the progressive nature of my disease, will have to be for the rest of my life. There is no cure so lifestyle is very important to me; things will always be changing which makes me every marketer’s dream customer (lol) but it’s part of my personality anyway. I genuinely enjoy the discovery process and sharing my resources with the community. That said, I’ve finally set up an Amazon shop! I will be continuously updating it and hopefully, get a US shop for my American followers soon. 💚💚💚 (Not sponsored).

Shop here: www.amazon.ca/shop/lettereleven

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Image Description: A birds-eye-view of Kae holding a blue butterfly with a broken wing on her index finger, resting on her lap.

As my disease progresses, I’m hyper-aware of the timeline I’m on. Experiencing a decline in mobility and strength heightens the fear and anxiety in my situation. I can’t control the rate my body decides to deteriorate and I can’t stop time but I can begin to dream again. In my early years of diagnosis, I halted all visions I had of my future—I wasn’t sure I had one anymore. Eventually, though, I learned to change my tune. I started making bucket lists every year, grand and small, even if it seemed unobtainable. Sometimes I barely cross anything off but I write it down again the following year. 

Life is about doing what you can. I might not get to travel the world but I’m happy to participate in life doing even the mundane things. When you’ve been dealt challenging cards, you become simple like that. This disease has emphasized appreciating more presence and experience than material, and that feels like living. 

I finally got the chance to go to a butterfly conservatory! A kind stranger handed me her butterfly, which I later noticed had a broken wing. Undoubtedly a sign and no coincidence I was meant to meet and hold that disabled beauty. Butterflies are symbols of transformation, hope, and rebirth. We are the same. 🦋🤍

What’s on your bucket list?

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Image Description: The official movie poster for “Quad Gods” is titled in large white sans serif text. There is a subtext at the top that says “The world was not designed for them. So they created their own” and the HBO Original logo in white above the documentary title. The main image is of three Black disabled characters in their black power wheelchairs on the streets of New York, each wearing their Quad Gods team shirt. They wear expressions of joy, determination, and empowerment. The overall edit theme is dark and moody, mixed with green and orange hues. The text at the bottom of the poster reads in white sans serif text “New Documentary July 10|MAX”.

Image Description: Two photos taken by Kae’s phone of a scene from the documentary film, “Quad Gods” playing from her projector onto her wall, stitched together to show the subtitles of one of the main characters speaking, reflecting by the water. He says “I’m gonna celebrate the little accomplishments because those are the things you take for granted”.

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I really enjoyed watching HBO’s Quad Gods documentary. I appreciated all aspects of authentic storytelling and disability representation, especially through the lens of Black Disabled voices—which felt like a breath of fresh air.

Quad Gods is the first ever all-quadriplegic e-sports team. The film explores the world of gaming, Al, technology, community, and poetic reflections on living in a disabled body. Highly relatable despite different medical diagnoses' and an insightful, humanizing watch. Although, I would've liked to see and learn more about the impact gaming has on neuroscience and the gaming world for players with disabilities in general.

TLDR: recommend watching!

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Image description: Kae, an east asian woman with brown hair is sitting in her power wheelchair, leaning forward and looking over her shoulder, smiling with her teeth, posing in the paved pathway of a park in Toronto called High Park, with cherry blossoms blooming in the background. Large white sans-serif text is written over the photo reading “Happy Mobility Awareness Month”.

It’ll be a little over a year since I got my first power wheelchair and admittedly, I only recently named her…which says a lot about our budding relationship—and my acceptance. I knew she was important and would become a part of me but perhaps I didn’t want to get attached because subconsciously that meant I would always need her. I grapple with that dark truth but remind myself it’s about perspective. It took me a long time to come to terms with my prognosis of losing the ability to walk over time; transitioning from a healthy, able-bodied person to experiencing a gradual decline in strength and mobility is extremely challenging. That’s the thing about progression though, it’s not constant. I always have to find my new normal every time I notice a change in my body and abilities—and that’s what the fight is about. I must keep going. I must keep adapting. I must keep being here.

A wheelchair doesn’t solve all my problems. It helps but it also adds new problems to solve like how to travel with it, where to store it, how to use it in tight spaces, how to transfer safely, etc. Now that I’ve had Willow for a while and experienced more life with her, I reflect on how much easier life could’ve been if I had embraced mobility aids sooner. They are tools, not symbols of pity; they liberate people with mobility challenges. I still get shy being out in my wheelchair in social settings but freedom ultimately trumps the fear and awkwardness because I get to have some of my life and mobility back. To anyone transitioning into being a wheelchair user, you got this. 💙 Happy Mobility Awareness Month!

Love, K.

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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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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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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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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! 🇦🇷🐎✨ 

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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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 accessibility standards 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.

I took a Spotify Wrapped meme and added various versions of copywriting based on my lived experiences written after the heading “You spent 525,600 minutes this year…”. Click on the arrow on the side of the image boxes to view.

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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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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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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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