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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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.

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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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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.

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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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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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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.

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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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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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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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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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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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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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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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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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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.

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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. 😌💅🏼

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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. 🐌

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