Musings

Stop Asian Hate
Image Description: A bundle of scallions sitting in a jar beside a bag of rice, with white text highlighted in black that reads “#StopAsianHate” overlaid in the center of the image. 2021.

Image Description: A bundle of scallions sitting in a jar beside a bag of rice, with white text highlighted in black that reads “#StopAsianHate” overlaid in the center of the image. 2021.

Despite being an English-speaking first-generation Canadian, I’ve experienced a lot of #racism and racial microaggressions in my life. Growing up in predominantly white cities made me feel embarrassed and ashamed for being Asian. I stood out amongst my peers which garnered negative attention for something I couldn’t help—my race and ethnicity. I’d get teased endlessly with stereotypical jokes and bc I felt inferior at that time, all I knew to do was to assimilate and laugh it off. I spent a lot of my youth trying to blend in, hoping to lessen the ridicule.

I will never forget when I first moved to Barrie, Ontario and I was thirteen years old; a couple of white girls welcomed me (unprovoked I should add) by doodling me in a grave, alongside a tombstone that read, “R.I.P. she choked on rice”, and a nearby speech bubble that said, “die b*tch!”. This particular experience stuck with me; it showed me very early on that racism can manifest in violent ways. There’s no denying it had malicious intent behind it, which I can only assume was learned behaviour. Barrie was also a city where I first learned the word, “chink”.

Today, more than ever I am extremely proud to be Asian, and it hurts to learn more each day that hate towards my people is increasing tenfold. We can always do better and be better, people. Let’s rise above this. #StopAsianHate #StandForAsians #RespectYourElders


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Birthday Girl
Image Description: Self-portrait of Kae staring into the camera, holding a book in her lap while sitting with one knee up, in front of a floor-to-ceiling condo window. The sun is casting a lens flare and warm glow behind her. 2021.

Image Description: Self-portrait of Kae staring into the camera, holding a book in her lap while sitting with one knee up, in front of a floor-to-ceiling condo window. The sun is casting a lens flare and warm glow behind her. 2021.

Hi. Did you know the amount of time it takes for a single trip around the sun is called a period of revolution? I’m welcoming entering my 30’s with a lot more self-assurance, self-discipline, and self-love. It hasn’t been an easy journey but I’m proud of who I’m continuously becoming. Bettering yourself takes time, reconnecting with your true self takes time, and loving yourself takes time; self-evolution is indefinite. I read somewhere: “dying is easy, it’s living that’s hard” and that stuck with me. Personal growth and development is so vital because we not only get to live the quality life we desire, but we have an overflowing abundance to give towards others...thus creating and experiencing more authenticity, meaning, and joy together! Life is wild, crazy, messy, and beautiful—and it’s short—so let’s live with more courage in our hearts and move forward with purpose. I’m grateful for each and every one of you I’ve crossed paths and formed connections with. You know who you are. Sending everyone lots of love and light.
- k
P.s. It’s in my best interest to not answer any emails today. You understand. ;)


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Baring it all.
Image Description: photo of me from behind, with my arms up washing my long hair in the shower. 2020.

Image Description: photo of me from behind, with my arms up washing my long hair in the shower. 2020.

Every time I take a shower, I think about how grateful I am to still be able to—for the most part—independently bathe myself; it’s an everyday action that we take for granted. Understandably, we don’t think much about until it becomes troublesome or next to impossible. i.e. injury, illness, etc. Shower time is private time and when that privacy is stripped away, you are left feeling especially vulnerable and helpless. Your cleanliness is dependent on someone else or completely dismissed altogether. To illustrate the gravity of this, I will openly admit I’ve gone days without showering somewhere because a bathroom/shower wasn’t #accessible to me. It’s a real f*cking bummer, and it deeply shows me cleanliness is a luxury, not a necessity.

Adding another layer to this, disabled/chronically-ill people have to be comfortable with being naked in front of someone they may/may not know well at all. It takes serious courage to not only accept but to trust that the person helping won’t take advantage. We have to learn to embrace being exposed in such a way. On the flip side, this allows us to develop the continuous strength and resilience that is needed to face these never-ending adversities. Essentially, our confidence resides in being able to laugh naked—both quite literally and figuratively—at life’s curveballs ;)

TLDR: Being comfortable naked is a superpower differently-abled people possess, showers are sacred, vulnerability is a strength, and please take extra care of your personal hygiene, ya filthy animals.


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Happy International Day of Persons with Disabilities (IDPD)
Image Description: Me marvelling at how small we are on this planet, somewhere in the middle a garden in BC, circa 2018.

Image Description: Me marvelling at how small we are on this planet, somewhere in the middle a garden in BC, circa 2018.

Today is International Day of Persons with Disabilities! I used to believe my condition was my weakness, my deeply human flaw but it has ultimately been my greatest strength and teacher. It doesn’t define me but it is a part of my identity/journey. Since I’ve surrendered and stopped internalizing #ableism, I have been met with such wonderful opportunities and connections I never thought possible. I let life happen. I radically shifted and stepped into my power; life flowed with ease. I now embrace everything that I am and can be, and I’ve never felt more liberated…more alive. Being a part of this community means so much to me. Be unapologetically yourself, no matter your ability. Acknowledge every inch of your being because there is only one of you in this lifetime—and be kind to yourself. Be ever so kind and gentle with yourself. You are loved, deserving, and valued. And the word “disabled” is not a word we should fear or let hold us back from living.

To my able-bodied friends, it’s important to note that we are no different than you. We have dreams. We have goals. We have needs. We have wants. We have sexual desires. We have feelings. We have personalities. We have rights. We are human, too. Be our ally. Celebrate not just today but every day. Life is precious. Cheers to more compassion, love, and kindness, always. xx


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Period.
Image ID: Self-portrait of Kae wearing high-waisted period underwear by Thinx, 2020.

Image ID: Self-portrait of Kae wearing high-waisted period underwear by Thinx, 2020.

Image ID: List of 4 purchased Thinx products in order from favourite to least favourite.

Image ID: List of 4 purchased Thinx products in order from favourite to least favourite.

Cramping and bleeding all the while being cooped up inside more than usual during a pandemic is not a fun time but at least I’m safe, comfortable, and…feelin’ myself? Feel good about not putting anything bad in my body or the Earth. These @shethinx undies save me from physically having to to go to the store to pick up feminine hygiene products. I did a poll last month asking if I should share my thoughts on them as a #disabled woman. Are they a game-changer for us? Sort of.

I think they are great for lounging around at home but they are kind of high-maintenance. Rinsing them by hand after use can be difficult for some disabled women and there’s the other physical labour of doing laundry afterwards. If you’re like me and need to sit down to change bottoms, these are not the most convenient to change into. They run tight so that also requires arm strength to pull upwards.

Overall, they take some time getting used to—you have to be really in tuned with your flow to avoid leakage (I haven’t experienced any yet). These are also on the pricier side but I think it’s worth it if it means reducing products in the landfill/trips to the store. I bought 4 pairs when they were on sale, as I anticipated wearing one per day for my cycle.

In conclusion: some situations and environments are better equipped for people with disabilities than others. I enjoy these undies, find them extremely comfortable and cute but would opt for a disposable period product if I’m going out somewhere new. Managing your period while being physically disabled is a whole other can of worms but to my ladies—do what works best for you that makes you feel most empowered and comfortable in your unique situation. You know your body best ;) DM if you have any questions!

*Not an ad, paid with my own money. Wearing the Super Hi-Waist.


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Footwear
Image Description: My point-of-view looking down at my new Reebok sneakers. Aug 2020

Image Description: My point-of-view looking down at my new Reebok sneakers. Aug 2020

As my mobility progressively declined, so did my footwear. That’s what MD does—it rids you of all your shoes deemed unsafe and unwearable: sandals, high-heels, boots, and surprisingly some sneakers—leaving you with very few options that are practical AND fashionable. It’s now function over form forever, and the search for shoes I can freely move in continues to be a very difficult, ugly, and expensive process. Ordering online is a huge gamble but it’s what I have to do if #inaccessibility and travel is the barrier. I can’t tell you the number of times I’ve purchased a pair, only to learn I can’t safely walk in them. Countless footwear have been thrown out, given away, and/or remain untouched in my closet. Over the last 6 years, I’ve had to wear the same pair of runners because they were the only ones I felt confident and safe enough to independently walk around in. I’m over the moon right now, I finally found a pair that meets both my needs and one that I can call pair number two.

#LifeWithMD #MuscularDystrophyAwarenessMonth #AccessForAll #DesignForEveryone #InclusionMatters #DesignForDisability #MuscularDystrophy #LGMD


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Feeling things with the beautiful APL

“It’s just really important for me to show people that you can be strong and powerful and steadfast but at the same time vulnerable and sensitive and in touch with your emotions. This idea that I can be myself and that I can be in touch with darker emotions too, and that those emotions are valid and important. You have to feel the darkest parts of yourself in order to heal and in order to feel better again. Being sad and feeling sadness is relevant”.

Alice Phoebe Lou

On repeat.


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I'm here
Image Description: Kae sitting on a stool, looking into the camera with her hair pushed to one side, wearing a white ribbed tube top and green wide legged pants. 2019.

Image Description: Kae sitting on a stool, looking into the camera with her hair pushed to one side, wearing a white ribbed tube top and green wide legged pants. 2019.

Before, I simply existed. I’ve never known stability. Only worry and fear, amplified by the multitude of hardships that came with having a degenerative disease. I was losing my mind alongside my body. Determined to save me, I started showing up for myself. I started making space for myself. I started giving myself permission and I started choosing myself—committed to creating myself anew.

Years later, I’m still dedicated to the practice of undoing, unlearning, and rewiring on a cellular level; it doesn’t stop. I’ve become a new person, both physically and emotionally, both personally and professionally—and my thirst for living my truth and potential continues to evolve. I’m not caught in the resistance anymore. I’ve learned to surrender; I’m soft and less contracted, enabling me to honour the highs and lows, and what is, with clarity.

I’ve essentially learned to enjoy the simple pleasure of being. You can make your own reality feel the way you want to by choosing to feel your best self. Your higher self. Your loving self, thus ending war in yourself. When you heal your own pain, you are not adding more suffering to the world—and you can show up more fully for others, creating harmony within and around. Take care of yourselves, people.

Here’s my self-portrait, undoing the wallflower narrative. I’m showing up, baring my inner blueprint for all to see. And I hope more of you will, too ♥️.


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I know a spot
8CD99AFF-8CCA-4614-A612-A4ECE335D9BE.JPG

Decided to have some fun with this trending Twitter joke and write my own version. I can’t tell you how many times I’ve called into a restaurant/venue to inquire about their #accessibility, only to later show up to a space I couldn’t physically enter. FYI, mindlessly slapping on a symbol and calling it accessible is extremely problematic and insulting. Educate yourselves. Advocate for disabled people even if you aren’t disabled. Make your shit accessible online and offline, and include us. Speak up for us. Make us a priority. Some day, you’ll understand first hand and wish you understood sooner.

Image Description: Screen grab of my tweet “accessibility be like “I know a spot” and then take you to the stairs”, overlaid an image of an incomplete accessible icon, white table top and my black cane. Slide photos: courtesy of Google Images.


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Global Accessibility Awareness Day
Image Description: Me sitting at a wooden tabletop, wearing a black turtle neck, hair pushed to one side, looking down at my iPhone. Photography by Tishan Baldeo, February 2019.

Image Description: Me sitting at a wooden tabletop, wearing a black turtle neck, hair pushed to one side, looking down at my iPhone. Photography by Tishan Baldeo, February 2019.

There are over one billion people with some form of disability worldwide. ONE BILLION. And not all have proper digital access, meaning their user experience is subpar or excluded altogether in the online space. Tech is life-changing for us. It lowers barriers that we encounter in our daily lives, making it easier and comfortable to live an independent + fulfilling life.

Without tech, I don’t know where I’d be. Every day I’m so grateful I have all my senses, and can access a laptop with high-speed internet. Having the space for an online community and tools for self-expression is what keeps me alive as a disabled person; it allows me to feel “normal”, independent, and equal. I can contribute under equal conditions and truly show my value to others. I’m also able to rely on tech for my livelihood in empowering ways that built environments don’t allow for—I get to participate and enjoy a digital society without barriers.

Fortunately #inaccessibility is a design problem and we can work at it through compassion + design thinking. Although disabilities are on a spectrum with different support needs, we can start by remembering to consider others when we do or use something. You don’t have to be a #designer or #developer to start implementing changes. There are little things we can start putting into practice, such as using ALT text each time we post on IG, as this helps describe our image to ppl with visual impairments. Or choosing a sans serif font over a cursive one. Or capitalizing each word in a #hashtag. These seemingly small actions make a huge difference in people’s lives. I hope everyone can start thinking about making digital accessibility + inclusion for disabled people a priority. Speak with them and include them because tech is for every body.

#GAAD #BridgeTheDigitalGap #Inclusion #WebAccessibility #SoftwareAccessibility #MobileAccessibility #DeafBlindAwareness #DisabilityVisibility #AccessForAll #AODA #DisabilityTech #AdaptiveTechnology


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Checking in and feeling into now - an update

As an introvert, an artist, and a differently-abled human, this lockdown hasn’t affected my lifestyle all that much. I’m used to being a homebody—and I’m good at it too. I’m used to working from home, used to missing out on things, and used to having to stay home because of xyz. Nothing new. What’s interesting though is that this lockdown has given able-bodied ppl an opportunity to experience the gravity of chronically-ill/old/disabled’s reality—one with many conditions and no guarantees—but the major difference? Most ppl can go outside for a walk or run to cope/maintain sanity during this global state of flux. For others, sometimes it’s not possible. Sometimes life doesn’t go beyond 4 walls, and imagination is our only survival tool for carrying us to other worlds. This pandemic has made my walls feel smaller; the little bit of freedom I did have is taken away. Unsurprisingly, the feeling of displacement is amplified and yet somehow I feel less alone than I ever have. While physical movement is a privilege not everyone has, there is great comfort in knowing we’re in this together; an honour to be a speck of dust in this boundless universe we get to call home.


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World Rare Disease Day
Image Description: Me smiling and standing in the middle of a garden nursery, wearing a black jacket, blue Levi jeans, holding a black cane in one hand and a mini cactus in the other. Taken in November ’19 by Tishan Baldeo Photography

Image Description: Me smiling and standing in the middle of a garden nursery, wearing a black jacket, blue Levi jeans, holding a black cane in one hand and a mini cactus in the other. Taken in November ’19 by Tishan Baldeo Photography

Today is #RareDiseaseDay, a special day to shine light on the ~7000 rare diseases affecting more than 250 million ppl worldwide. It’s a day to educate the general public and to encourage researchers and decision makers about ways to improve and understand the lives of those affected.

I think the concept of ‘rare’ is generally perceived as a positive thing, as something remarkable, something few and far between, thus deeming to have more value, desirability and uniqueness. (Hell, even Selena Gomez recently released a song title called ‘Rare’). So, it should feel good to be labelled that, right? (See: #adjective goals). Now put the words ‘rare’ and ‘disease’ together, you’ll find yourself no longer wanting to be rare. You’ll want to be commonplace so badly, it’d be the first time you’re begging to be #basic.

Being rare comes at a cost—it means being overlooked because there aren’t enough ppl affected by your disease; it’s being told there’s not much research or information on your diagnosis and you’re on your own. It means being scared, confused, lonely, exhausted, in pain, misunderstood, misjudged, misdiagnosed, and misrepresented. It means fighting an uphill battle, every moment for the rest of your life, repeatedly being forced to confront your own mortality. It means consciously choosing to transform sadness, anger, grief and loss over your former self, into acceptance and empowerment. It means fighting for your needs to be validated and respected in a world you don’t fit in.

Being rare—in many ways—is something to strive for, you can say you’re one in a million, but if you’re living with a one-in-a-million disease, you’ll be damned your spirit can’t and won’t break. Happy World Rare Disease Day, my strong chronic-illness/disease fighting warriors ♥️


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29
Image Description: Photo of Kae at a restaurant, smiling and looking down at her birthday cake. Jan 2020.

Image Description: Photo of Kae at a restaurant, smiling and looking down at her birthday cake. Jan 2020.

Birthdays are usually a weird time for me. There’s this innate expectation (and obligation) to celebrate you—and sometimes it can feel superficial. I know we know it’s our day but do we truly understand what it means to be celebrated? In no way am I saying I’m ungrateful for each passing year but what i think I’m trying to describe is this feeling of being subconsciously numb. It’s like no amount of attention and birthday wishes can ignite your being alive.

But you know, this birthday hit different. Aging makes us all a little nervous and more grateful to be here but for me, aging along with a muscle-wasting disease is next level nerve-wracking and a force to be reckoned with. My life is a very time-sensitive situation. Things move really fast and slow at the same time: fast because one moment I’m able to lift a cup to my mouth and the next moment I’m unable to lift my arms up to tie my hair. Slow because I’m forced to physically slow down and take up more time to do simple, mundane tasks but hidden within that is the gift of presence. I’m a much more mindful, grateful and present person that lives day-to-day, moment-to-moment and my heart only gets fuller and fuller because I don’t take anything for granted. Life really is so precious.

For those who’ve asked how I remain positive: I work at it everyday to find and hold onto that perspective—and I always want more for myself. When you have to fight for yourself everyday, and go after living a better life than you’ve been dealt, birthdays will finally make sense. 29 was a really special birthday. I was surrounded by the ones that not only wanted to celebrate me but they are also ones I choose to share my heart, growth and authentic self with.

Thanks for all the birthday love near and far, I feel connected inside and out. ♥️


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Inner Blueprint + Purpose
Image Description: Me standing outside in front of Nellies, in the hot sun, wearing a white t-shirt, muted green flowy pants, holding a cane smiling at the camera. Toronto, Ontario. 2019.

Image Description: Me standing outside in front of Nellies, in the hot sun, wearing a white t-shirt, muted green flowy pants, holding a cane smiling at the camera. Toronto, Ontario. 2019.

What you heal in yourself becomes the blueprint that others can use.
— Maryam Hasnaa

As my disease progressed, I struggled with deeper feelings of self doubt. The influence of my surroundings kept whittling away at my existence, purpose + self worth. Was our value truly only based on our physical capabilities/potential? I have been shown repeatedly there was no room for the sick/disabled and I succumbed to feeling like I wasn’t enough. Conditioning taught me life would be easier if I didn’t get in anyone’s way and I confused being a wallflower by force with being one by choice; staying quiet seemed like the answer. I then furthered this ableist thinking by closing in on myself—until I couldn’t.

Many negative experiences later, I’ve had enough. Now I move with purpose and continuously demand a better life for myself + for others. Holding space is a learned tool, powerful force and a practice I honour; I’m still learning to be seen, to speak my truth and to understand the space I occupy as a differently-abled person.

Today, I get to lead the conversation around the misunderstood, the overlooked and the unspoken. I get to teach* others that they are enough, deserving + loveable. I teach how to make space and to hold space for oneself bc our mind is more powerful than the influence of our surroundings. When love conquers all, you can make it through anything ♥️

*Photos are prohibited inside Nellies + I definitely do not teach the importance of ironing pants.


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Some things are better left unsaid
Image Description: Photo of a makeup brush being suspended against a black background, tied in the style of a shibari knot, made of jute material. 2019.

Image Description: Photo of a makeup brush being suspended against a black background, tied in the style of a shibari knot, made of jute material. 2019.

// BTS

Throwback to one of my favourite photos. I taught myself a simple #shibari knot 20 minutes before we shot on set that day, done with jute twine—which is not an easy material to present neatly by the way. Earlier this year, our client had initially been on board with my concept, until later I told him the inspiration behind it. He then retracted saying it was too risky and inappropriate for their brand and we had to reshoot.

FYI, the art of Shibari is a well respected craft; objectively, simple knots suspending products wouldn’t necessarily scream what a quick Google search would tell you. I was simply drawing inspiration. The client didn’t know what it was until I told him the name of the practice—I guess for some, it’s difficult to remove perverseness out of things.

There’s more to why I went in this direction but I’ll spare details; all I’m saying is they missed out and I got a pretty photo out of it.

Photo + lighting by the talented Tishan Baldeo. Art Direction by yours truly.


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Reminder

One of my favourite quotes:

People will forget what you said, people will forget what you did but people will never forget how you made them feel.
— Maya Angelou

Take that in. It’s a powerful reminder that one of the beauties of being human is to have an open mind and heart. So, let’s be kind, be present and love hard in this lifetime together. x


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Mind Over Matter
Image Description: Me staring at the camera, leaning back on a grey couch, arms behind my head, hands linked together, wearing a white top and grey knitted tights. Self portrait, May 2019.

Image Description: Me staring at the camera, leaning back on a grey couch, arms behind my head, hands linked together, wearing a white top and grey knitted tights. Self portrait, May 2019.

Watching your body deteriorate before your eyes isn’t fun. Losing control each passing day creates all sorts of tension. Having to always adapt to your new ability and environment gets really tiring. And when science tells you there is no cure for your declining health, there is nothing you can do but to continuously nurture your inner state, and find alternative ways to move ahead.

One of the main tools I use is to practice meditation until my whole being is in love with life — that’s my secret to coping and thriving. The mind is a powerful thing; you can train your brain and the body will follow, where the mind is sick, the body is sick and vice versa. So when life gives you lemons, work on becoming a human pretzel.

TLDR: With anything in life, it’s mind over matter.

Now, go do yer stretches! 💪🏼 .

x


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Is this heaven?

Wow. This is perfection. Although I may not be able to physically dance anymore, I feel my spirit lift and tango within. Thanks Cercle + FKJ.


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Essence

Cellophane is an Icarus tale: a dance-of-death striving toward unattainable perfection, the fall from grace and the fragility of putting yourself back together.

- Andrew Thomas Huang

I felt this. Forever enamoured with FKA twigs; the way she expresses her whole being throughout her storytelling and craft is everything. It’s truly inspiring and aspiring. Thank you twigs + her team, this was a moving piece.


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