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 💕🌸✨

---

There are over 30 subtypes identified and the colour lime green represents all LGMDs. I designed an LGMD subtype profile/identity card, inspired by the Pantone colour swatches/chips.

Learn more about Limb-Girdle Muscular Dystrophies here: www.limbgirdle.com/lgmd-subtypes

Image Description: A close-up photo of Kae, edited in a lime green/grey duotone colouring. She is wearing her #LetsEndMD enamel pin. Underneath her headshot image is a white background with bolded black sans serif text that reads: “Kae Tran” followed by “LGMD2B/R2 Miyoshi Myopathy”. The background is a lime green which is the colour for all LGMD subtypes.

---

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/

---

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.

---

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.

---

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”.

---

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. 

---

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%.

---

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.

---

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!

---

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%.

---

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

---

Image description: Close up of Kae holding an orange Suntouched bottle next to her smiling face.

Image description: Portrait of Kae looking into the distance, showing off her long, straight, newly lightened hair.

Image description: Portrait of Kae looking into the camera, showing off her long, straight, newly lightened hair.

Image Description: Photo of the side of a Suntouched packagaging where it displays product info and instructions.

Summer is finally here and as a disabled girly, you know I will be using @suntouched as much as I can. I live and swear by their lightening product because it’s so easy to use on myself in the comfort of my own home—and easy to maintain too! All of their products are colour safe and free of parabens, alcohol and harmful sulfates. I haven’t coloured my hair professionally since the fall of 2020 and I still get compliments to this day. I’ve also been embracing my wisdom highlights, a.k.a. greys with Suntouched. It’s easily one of the best, accessible hair products out there. Getting to see the results after a day in the sun is double the fun. And friends, don’t forget to wear SPF! 🌞 x k

Use coupon code: KAE10 to save 10% off your order.

Shop the affiliate link: here.

---

Image Description: Kae is in her new WHILL wheelchair.

Image Description: A photo of Kae’s old car sitting in the underground parking lot.

It was really difficult to part ways with not only my old car but to reconcile with the idea of never being able to drive again. Driving was my happy place.

Today, I have a new set of wheels. It’s been a long time coming. When I first got diagnosed with #MuscularDystrophy, I knew I would eventually end up needing one, and that was difficult to accept alongside the news of my body deteriorating.

I’m ashamed to admit there was a lot of resistance because society’s perception of mobility aids was domineering but over the past few years, I spent time unlearning that mobility aids are a sign of weakness. I now see them as an extension of our bodies—something to be respected and cherished.

I’ve also had many years to mentally prepare for this moment, and it feels easier to transition when you find a chair you like. It will be a work in progress with how this becomes a part of me and how I navigate the world on wheels but like anything, one day at a time!

Anyway, what should I name her? She’s really cute. 😌💅🏼

---

Been sitting with my darkness lately; the pain, the sorrow, the grief. I’m realizing none of it ever goes away. I actively choose to be content with the cards I’ve been dealt but it still catches up to me. With every new challenge, change or inability I experience, I subconsciously mourn my reality until suddenly I find myself sobbing uncontrollably. Confused by my own sudden outburst, I quickly recognize it’s my spirit forcing me to confront my fears and pain—and guilt. How can I feel guilty when I’m grateful to still be here? I can’t help but feel the inevitable struggle between gratitude and the will to keep going. How do I make room for these two conflicts to coexist in harmony within myself? It’s a weird place to be in. 

I want to believe that feeling trapped is a perspective or mindset but I can only see the light for so long before it becomes too heavy. Most of the hardship I endure is external and it feels like I’m doing a life sentence in this body. It’s a vicious cycle but I’ve been here before, each time a little different. 

With practice, I’ve learned to be a witness to what needs to flow through and out. I’ve learned to appreciate mundane moments as miracles. I’ve learned that this too shall pass. 

Our 24 hours are not the same. With adulting and aging alongside our respective daily health challenges, we are speeeent. We happen to inhabit a body (and/or mind) not free from dis-ease, and therefore our relationship with ourselves, time, and the world are forever changed. We have to share our time, waiting on others, waiting on ourselves, and waiting on the government to help us move.

In simpler terms: we’re forcibly moving at a much slower pace than everyone else but hey—at least we’re moving. We need extra time to perform a task and if everyone acknowledges Crip Time, it’ll allow us to gather our momentum to keep being here; one that respects and nurtures our individual needs while preparing and adapting to the unpredictability and inconsistency nature of our battles, including working around ableist barriers. 

Be patient with us, we’re a little tired. 🐌

---

Image Description: A black and whtie photo of activist Judy Heumann speaking into a microphone at a protest as seen in the award winning documentary ‘Crip Camp’ on Netflix.

“ We will no longer allow the government to oppress disabled individuals. We want the law enforced. We want no more segregation.”

— Judy Heumann

Activist Judy Heumann led the fight for disability rights; a true queen, trailblazer, and icon to remember forever.

Dec. 18, 1947 - March 4, 2023

Rest in Power.

---

P.S. If you haven’t seen this powerful documentary, ‘Crip Camp: A Disability Revolution’, you’re doing Judy and other disabled activists a huge disservice.

Image Description: The title cover for ‘Crip Camp’ featured on Netflix.

Thank you to everyone who paved the way before us and fought so hard to make the world a more accessible place for people with disabilities to exist in. I highly, highly recommend it as an absolute must-watch for disabled people and their allies; everyone needs to witness the incredible change made in US history. We are forever grateful.

Watch the full movie here on Youtube.

---

Image Description: Kae is smiling while sitting in a manual wheelchair in the accessible section of a concert venue, 2019.

I’m an ambulatory wheelchair user, which means I use one even though I may still have some capacity to walk. I use them in instances where I need to manage my energy levels and reduce strain, like when going to an art gallery or park that requires walking for a longer time and distance. Wheelchairs bring freedom and safety, nothing to be ashamed of—something I wish I understood and used sooner!

Happy Wheelchair Day!

---

Image description: Kae is on the right side, linking her left arm with her friend walking down an accessible beach ramp in Toronto, while using a cane with her right hand.

Today, we celebrate those living with rare diseases and people who advocate for them, including researchers and scientists helping to find a cure. It feels like a lifetime ago that I felt shy or ashamed to talk openly about my journey with MD. If you told me four years ago that I would ultimately end up dedicating my platform to it, I would’ve snarked at you.

It took me a long time to get here, not only because I wasn’t ready to talk about it but because it felt like I was speaking a foreign language. No one had heard of Muscular Dystrophy, and no one seemed to know how to respond or care. I was on my own.

My struggles stayed silent with me for a long time, and I internalized ableism alongside society until recent years. I never want anyone to feel the way I felt for most of my life. I guess you can say raising awareness is part of my life’s purpose now, and I won’t stop educating because ignorance breeds prejudice. Being diagnosed with a rare disease feels like a big f*ck you; it constantly tests your will and it makes your journey to finding the right education, health and care support much more difficult. Well, whatever your truth is, you have to make it a big deal because it goes beyond your own ego and existence—it can save a life, including your own.

Happy Rare Disease Day, friends. Stay strong. Stay hopeful. Being rare doesn’t have to mean being alone.❤️‍🔥

Image Description: Image of large, black, bold, repeat text that says “we cannot stay silent about things that actually matter” against a light beige background.

Image Description: A black and white illustrated meme image of a guy in the corner at a party, with text that reads, “they don’t know I’m living with a rare disease”, edited by Kae.

---

Image Description: Modelling digitals of Kae. Left: close up, Right: full body.

Growing up, I never thought I could be a model; I wasn’t tall, had body hair, got teased for being Asian (or not Asian enough), and later became disabled. All of this really affected my self-esteem and identity; experiencing racism and the early onset of MD shaped me tremendously. I didn’t want to be perceived and I didn’t want to meet new people. Admittedly, I’m still like this sometimes. 

I spent the majority of my life not understanding those were interconnected until recent years but I am who I am and none of the barriers and hardships I endured was inherently my fault or flaw—it’s society’s perception and mistreatment of others that are taught through media and culture. I’m guilty of this too because I saw myself in a negative light. 

We can’t escape our bodies but we can make peace with them. I intentionally take photos with my cane now, and I’m signed with an agency that truly believes in diversity and inclusion. The courage to step in front of the lens goes beyond taking a pretty photo; it’s about showing up unapologetically as yourself in a vulnerable way so the world can hear our stories and recognize marginalized communities as real people. Thank you to my wonderful agency BNM Models for believing in me. #RepresentationMatters

Image Description: A collage image featuring cut-out images of Triple Cripples, Alice Wong, Frida Kahlo, Harriet Tubman, and Judy Heumann, Also included is an image of a disability rights protest. The banner the protesters are holding up says “injustice anywhere is a threat to justice everywhere - Martin Luther King Jr.” Written in the middle of the image in yellow text it says “living a disabled life without shame is a radical act.”, designed by @youlookokaytome.

Image Description: Screenshot of a tweet by Gregory Mansfield on a solid black background, it says “Telling a disabled person that you don’t see their disability is not the compliment you think it is. The unwillingness to see disability is a devaluation of disability”.

---