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.

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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.

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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!

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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.

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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”.

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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.”

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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.

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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.

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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

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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.

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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:

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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.

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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.

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

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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”.

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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.

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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.”

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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 LGMD Awareness Foundation.

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

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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”.

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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.'‘

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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”.

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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 💙💛🤍❤️💚♿️

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Image Description: Portrait of Kae sitting on a stool, against a beige tie-dye backdrop. She is wearing a white loose dress shirt and beige dress pants, holding a black cane with her right hand. Taken by Roland Guballa, 2022.

Image Description: Screengrab of Kae’s Petition banner and title on Change.org.

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Image Description: Screengrab of Kae’s written portion of her Petition on Change.org.

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Image Description: Screengrab of Kae’s written portion of her Petition on Change.org.

In honour of #DisabilityPrideMonth, I created a petition for y’all to sign. I realized we don’t have a flag emoji to represent us, so I plan on submitting a proposal to Unicode in the upcoming months. Please sign + share so we can get our ♿️ flag emojis! ♥️

ACTION REQUIRED: Please sign here.

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Image Description: Updated Disability Pride Flag by Ann Magill in 2022.

Having All Six "Standard" Flag Colors: signifying that Disability Community is pan-national, spanning borders between states and nations. The Black Field: Mourning and rage for victims of ableist violence and abuse. The Diagonal Band: "Cutting across" the walls and barriers that separate the disabled from normate society, also light and creativity cutting through the darkness. The White Stripe: Invisible and Undiagnosed Disabilities. The Red Stripe: Physical Disabilities. The Gold Stripe: Neurodivergence. The Blue Stripe: Psychiatric Disabilities. The Green Stripe: Sensory Disabilities.

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Update: Just learned there is a new pride flag design update by the designer herself. Read here.

Image Description: Old design of the Disability Pride Flag, created by disabled artist Ann Magill in 2019.

It’s officially Disability Pride Month! This is your much-needed reminder that our tenacious and unstoppable community is a natural and beautiful embodiment of the human experience; we are here, we exist, and we are no longer hiding in the shadows and depths of ableism and exclusion.

To my disabled community: our visibility matters more than ever as we are still fighting for basic human rights, accessibility & marriage equality today.

To my non-disabled friends: disability isn’t a bad word, and you bet your ass that our supportive community would be there for you in a heartbeat should you find yourself here. Be kind and support your fellow disabled friends, always.

Happy Disability Pride Month 💙💛🤍❤️💚♿️

with love, k.

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Image Description: Kae is sitting in her living room floor after a workout, basking in the evening sunlight.

Image Description: A close-up shot of Kae’s hand holding a philodendron vine against a white background, visibly showing new growth where the end has been cut off. The new growth starts on the left node instead, symbolizing perseverance and a new direction in life.

My body may be rooted here, but my spirit yearns to taste foreign land. I've always wanted to experience different parts of the world, and I naively thought I would get to...that is until life decided it would give me a major detour—or possibly a dead end.

After 31 years, I find myself still on the sidelines wondering when and how in this lifetime; the feeling I carry inside teeters between hope and looming despair.

My doctor once described #MuscularDystrophy as a form of accelerated aging, and while I know I’m still relatively young, I’ve often felt way beyond my years for most of my life. The silver lining in this figurative but insurmountable ticking clock has me saying, ‘if not now, when?’, as my guiding force for living a more present and fuller life.

All of this is to say that I’ve been working hard behind the scenes on lining all my ducks to make it happen someday. I’m not sure when but I trust that as long as I have a will, I will find a way. All in good timing. x

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Image Description: Kae is on her balcony with her back facing the camera, she is looking over her shoulder and smiling. It is sunny outside and she is wearing sunglasses and a black bikini. The skyline of Toronto is visible in the background and the word “Home” is written in white, all in capitals with a serif font and it’s overlaid in the sky to mimic a real estate magazine cover design.

See full Instagram post here.

I remember when I was looking for an accessible rental home, it was nearly impossible. I was often met with potential landlords turning me down due to my disability; it didn’t matter if I had excellent references or a high credit score. The lack of accessible/affordable housing options was very discouraging and exhausting. Accessible homes were usually overpriced condos and almost all real estate listings didn’t provide any accessibility information—and if they did, they were wrong. I would show up to the viewing only to learn I couldn’t get in; people need to know that accessibility misinformation is life or death for some of us. 

The need for accessible housing is a crisis. Despite 2.6 million Ontarians* being disabled, there is no policy requiring barrier-free housing and the accessible housing waitlist is very long or impossible to get onto because when people finally move into their accessible home, it’s for a lifetime. 

It took many years until I found my current home and every day, I thank the universe for giving me a break; I never want to go through that painful experience again. I already know I plan on staying here for as long as I can afford to because it is the most accessible home I’ve ever lived in that has allowed me to live with independence and dignity. Also, accessibility isn’t just about what’s built into the home but its location too, and I’m lucky to be situated in the most ideal spot. I hope one day I get to build my fully accessible dream home but for now, I’m grateful for a place I can finally enjoy and call safe haven ♥️.

*source: Accessibility for Ontarians with Disabilities Act Annual Report 2019

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