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”.

---

Image Description: A plate of fruit and veggies Kae has prepared, including half an avocado, red peppers, carrots, cucumbers, blueberries, clementines and kiwis.

Image Description: A photo of Kae holding two large collard green leaves with text overlaid in the centre. In white text on a black background, it says, “First it will feel like a sacrifice. Then it will feel like the grind. Then it will feel like life. Then it will feel like freedom.”

---

Part of honouring my body is continuously deepening my relationship with food and nutrition. I adore cooking for myself and try to eat most things homemade as this is how I take my power back. While self-initiated, I’ll often get teased for being stern with what I consume, but because it’s not prescribed, it somehow makes it less socially respected or understood. What isn’t appreciated is the amount of discipline needed to pursue this path. For me, it’s life or death if I don’t put in the extra work to give my body what it needs to thrive against the odds of life with a progressive neuromuscular disorder. 

A decade later, it’s second nature to eat the way I do. My tastebuds have changed drastically, and I genuinely feel good and enjoy eating simple whole foods. When I consume consciously, the emotions that arise from how I show up to food feel like a deeper alignment of gratitude and awe for being able to receive the highest form of nutrition intended to nourish us. Nature is incredible.

We also have more knowledge than ever today to be able to live a balanced life. The wellness industry, diets, and trends can be overwhelming and untrustworthy but not when you tune inwards and feel your inner guidance to make decisions that work best for you. Commitment to living your best life is more than survival—it’s a radical form of self-love. 

Image Description: screenshot of Kae’s phone’s photo album. They’re artsy shots of veggies on a cutting board, including cucumbers, yellow peppers, and carrots.

Image Description: Close-up photo of organic blue oyster mushrooms in a nonstick pan.

Image Description: An aerial photo of a dish Kae made. She made grass-fed ground beef with raw organic red cabbage on top of white rice with a side of hot sauce and fresh cilantro and sesame seeds for toppings.

---

I was logging into one of my accounts and this CAPTCHA popped up featuring stairs, then it occurred to me that they’ve never shown images of ramps—and I think that’s a missed opportunity for conditioning people to be more mindful of accessibility.

Image description: A screenshot of a CAPTCHA with an action to select all images with stairs. I write below it, “It’s always stairs and never ramps”.

Image description: Photo of Squidward from Sponge Bob Square Pants is in bed with a worried, uneasy face. In the background is a window looking out into an image of stairs that I superimposed.

That said, the photo I made above is a literal representation of how people like myself fear inaccessibility.

---

If it isn’t already apparent, the cost of living for people living with a chronic illness or disability is expensive. We spend more on medication, doctor/therapy/rehabilitation appointments, mobility aids, transportation, delivery services, specialized adaptive items, customizing spaces and clothing, etc, more than the average non-disabled person. All this money is spent just to survive and meet the bare minimum of living. Social assistance is hardly anything to live off of, and employers are still afraid to hire disabled people, often leaving our vulnerable community to fend for themselves.

This is your reminder to support disabled creators, disabled business owners and write to your local politicians to fight for our rights. 

#DisabilityAwareness #DisabilityJustice #DisabilityRights #Inclusion #MuscularDystrophy #ODSPoverty #MAiD #LegislatedPoverty #DoubleODSP #ONpoli #WeCanDoBetter #Mathmatician

---

View fullsize

I like to make a lot of memes…Is this how I cope with my neuromuscular disease or do I just have an elite sense of humour? Thinking about this fun one I made last year on my Instagram Story.

Image Description: A 9:16 aspect ratio image divided into 3 sections with the top being the dominant third, and it’s a photo of Kae resting her head on her hand and elbow on her knee. There is an eye emoji on Kae’s forehead.

The bottom left picture is a close-up of the arm pose with a red line tracing a triangle outline created from the negative space.

The last photo (bottom right) should be a photo of the Illuminati but instead is of a triangle divided into 4 smaller triangles: the top text says Usable, the bottom left text says Accessible, the bottom right text says Inclusive, and the middle triangle text says Universal Design with an eye emoji below it. The background is white.

---

Image Description: Full body shot of Kae holding her cane. She is posing against a blank white wall. She wears a black cropped tank top and high-waisted black baggy cargo-like pants. She also is wearing a black Apple watch. The image is overlaid a textured graphic background as the border. The Persons with Disabilities acronym “PWD” and Limb Girdle Muscular Dystrophy acronym “LGMD” text overlaid the portrait. Self-portrait was taken in November 2022.

Today is the official calendar day for International Day Of Persons with Disabilities (IDPD) promoted by the UN since ’92. It’s a day to celebrate, recognize, and raise awareness for the 15% of the world's population living with a #disability—a.k.a. the largest minority group that any of us can become a member of at any time.

I often emphasize the last part when sharing my story because while my disease is incredibly unique and rare, I know my journey to becoming disabled, accepting disability, and navigating life with one is not.

The reality is no one is safe from experiencing disability; it’s a natural part of life. We can’t control what happens to us but we can control how we show up and support each other. We need to reframe our perception of people with disabilities, and the word itself is not a bad word—something I wish I knew sooner.

I’m grateful to have finally found the strength to speak up for myself and for others in a world that was made to exclude us. Self-advocating started off as a necessity but it’s become my purpose. I will always use my platform to educate, advocate, and celebrate us. Being disabled has taught me so much about myself and the world, and it’s given me an amazing community; I’ve never been more proud to identify as disabled.

We have a long way to go but let’s keep having the important conversations beyond today. I won’t rest until people with disabilities can live with dignity in a barrier-free world and have access to equal rights. ♥️

Happy #IDPD!

x k

Also, Apple released this amazing ad for IDPD. No inspiration porn or sob story. Simply just humans with disabilities living their lives empowered through technology. Watch below:

---

Image Description: A black and white film portrait of Kae from the waist up. She is wearing a white tank top, black dress pants, holding her phone with both hands while resting on her black cane, looking into the camera, 2021. Photo by her dear friend Patrick Estebar.

View fullsize

View fullsize

View fullsize

View fullsize

View fullsize

View fullsize

View fullsize

View fullsize

Is advocacy fatigue a thing? Because I feel it sometimes. There are days when I feel like all the energy I put towards championing a greater cause goes unnoticed, especially by those who aren’t directly affected by what I fight and stand for. Should everyone become an activist? No, but I do expect allyship.

If we’re not sharing our truths, how can we ever make room for empathy to develop? The human experience is extremely diverse and uniquely individual, and we learn about our differences through people’s real lives and stories.

I’m no martyr, nor did I ever think I’d be in a public position of using my personal story and platform for a bigger purpose, but it found me. Resistance and cowering were always my instinct when it came to my diagnosis. I eventually embraced this path when I felt ready—but I knew I had to give to myself first. There are still shaky days but now it’s just a little wind; I’ve worked hard on building my cornerstone to be who I needed when I was younger. That is my gift to you, and your gifts to me are these beautiful messages as a reminder that not all hope is lost.

(I wish I could post them all but know that I see all of them, thank you). 🌹 x k

Photo by Patrick Estebar.

---

Well, well, well…if it isn’t me making memes as a coping mechanism again.

View fullsize

Image Description: Screengrab of Daniel Caesar’s song lyrics to ‘Please Do Not Lean’ on the Spotify app, with the world ‘Disabled’ replacing ‘unstable’ so it reads “Please do not lean on me, I’m disabled”.

View fullsize

Image Description: a side profile silhouette of a person’s head in white against a black background, with an outline of a brain divided into different compartments; Loved Ones, My Progressive Disease, My Future, Capitalism, Music, Sleeping, and Everything.

View fullsize

Image Description: An illustration of a boy and girl smiling and texting each other in bed. The speech bubble says “I like your passionate advocacy for change”, and the girl replies with “Thanks, it’s a cry for help.”

---

Today I’m celebrating Global #LGMD Awareness Day to wrap up the last day of #MuscularDystrophyAwarenessMonth. Limb-Girdle Muscular Dystrophy is the subtype I live with and there is currently no cure for it. LGMD is also an orphaned rare disease that doesn’t often get the attention of researchers, healthcare providers, and or the general public that it deserves. Here are some quick facts and a clinic poster I designed for @LgmdAwareness.

I’m hopeful there will be a breakthrough for the MD community one day but that won’t happen without proper funding, donations and education about this disease. Until then, thanks for all your support and love. 💚💚💚 & to my LGMD’ers, I’m proud of you. xx

---

A few weeks ago, I almost perished in a car accident—or so I thought. It happened in a flash. I vividly remember thinking all sorts of things, one of them being that I deeply believed my loved ones and I were all going to die. Although, now I reflect back in amazement because not only did we survive what could’ve been worse, but our fears and feelings had evidently survived with us. These newly formed memories echo within my flesh, and I now have a new understanding of trauma.

Fortunately, we’re okay but it has surprisingly been an unsettling time adjusting back to reality, the days and pain levels fluctuate, and the flashbacks like to keep me on my toes; another layer added to my daily challenges. While I consider myself resilient, strong-minded and good at coping, nothing could’ve prepared me for the range of emotions I felt seconds before the accident or the aftermath that followed—this was something new.

Physical pain aside, it’s left me in this weird limbo state of simultaneous questioning, gratitude, and empathy. I haven’t been able to fully process it as I’m still in grounding, trying to reconnect with a shifted reality and identity. I know this is a hiccup in the grand scheme of things but it has validated my desire to continue living presently and loving deeply. It’s shown me that I’m not quite ready to go yet. Life may be difficult, it is fragile and fleeting but it is also precious and fun. We are truly everything and nothing; how we choose to live our life and give meaning to it is up to us, until fate would have it. Be here now because tomorrow isn’t guaranteed. Love u🌹

Image Description: Selfie of Kae’s transparent reflection in the glass of her balcony window. She is sitting in a chair with her elbow resting on her knee. The Toronto skyline is visible in the background.

Image Description: Meme of a man standing in the middle of two opposite paths. The word “breakd” is overlaid the man in the center, with the word “ance” overlaid on the left path and the word “own” on the right path. The meme’s caption says: “everyday we make choices”.

---

Image Description: photograph of an orange full moon in the sky.

Image Description: Kae is smiling, leaning to to the side, holding a cocktail up to the camera.

Diary of a disabled introvert: I very much enjoy macro dosing moments with my loved ones, they help me overdose on life. I sit still with them, and they with me. We are here, together. Life with #MuscularDystrophy is tough but I likely wouldn’t be here if it weren’t for the energy and support I’m continuously surrounded by. You know who you are. Thank you 🌹

Image Description: Kae is smiling, looking to her left, holding a cocktail up to the camera.

Image Description: A text message I received, overlaid a black background that says ‘i send you nice waves and energy.'‘

---

There are many times throughout the day when I’m frustrated with my body; it’s progressively not doing what I want it to do anymore and yet at the same time, I’m amazed by all its remaining capabilities. I try to keep optimistic but the cooperation between myself and the 3D is continuously challenging. Most days, I feel like my old self and for a brief moment, I forget about my arduous, exhausting reality but then I’m quickly reminded and humbled by the movements I make (or lack of), and that’s what’s frustrating—I still remember. I remember what it was like to move without fear. I remember not having a care in the world. I remember the freedom. Now, my external being no longer matches my intention and I feel trapped within my own skin. The grim reality is that we’re all going to get there someday, I just might be there a lot sooner than most.

In truth, I innately feel this separation within that I can’t seem to fully mesh together yet with my evolving present circumstance; I’m learning it’s because grieving isn’t linear nor final. I will probably always long for the body I used to know but this is my vessel now, and part of being human is embracing all sides and states of (disabled) living, including the unsettled complexities of it in the past, present, & future.

Though the beauty in surviving is our amazing ability to adapt and conquer, and yet my brain (or MD) won’t let me forget; our memories and feelings never fully dissolve, for better or for worse, so it takes a lot more effort to live life. Regardless, I think we all strive to live from moment to moment, and if we can all do this, we’ll always be alright. ♥️

Image description: POV looking down at Kae’s legs resting next to her cane.

Image description: A vintage style comic illustration of a woman holding two diamonds with rainbow beams shooting upwards with text overlaid. Left side reads: “grateful to be here” and the other, “what the actual fuck”.

---

Knock knock, it’s #DisabilityPrideMonth! 

Make room, world. We exist and we’ve always been here. We make up 15% of the global population; the largest and only minority group that any of us can become a member of at any time. 

There are more of us than you know but without creating a safe environment for people to disclose their disability, we will always continue fostering shame, hiding, and exclusion.

#Disability makes us think about the idea of being human and how we relate to the world we live in. However, there is still deep-rooted fear and discomfort around what it means to be human or how we value people (see differences/relatability). Still, the more we’re able to educate + openly talk about it, the more we can normalize disability as a natural part of the human experience. 

We all need each other so we must work together on removing attitudinal barriers because it’s critical for society to change how we interact with, think (and talk) about disabilities if we want an inclusive future. Let’s begin by focusing on how multi-faceted humans are—we are more than our so-called disability. We still have a long way to go but at least we are finally making noise.

HDPM 💙💛🤍❤️💚♿️

---