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.

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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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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“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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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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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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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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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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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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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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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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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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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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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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I’m just going to leave this here. NSFW.

Click here to read a Dazed Digital interview with the filmmakers of Yes, We F*ck.

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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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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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Yahoo Canada reached out and asked me to be apart of their IWD videos. I’m completely in awe, honoured and proud to be apart of a group of amazing and strong women, who get to share their stories with the world.

Behind the scenes w. Yahoo Canada, filmed by Tishan Baldeo, 2019.

L-R: Kawennáhere Devery Jacobs, Tessa Virtue, Samra Zafar, & yours truly.

As a complete video rookie, here are some things I’ve learned through the process of being interviewed, filmed and seeing the edited version afterwards:

1. The stuff they tell you they’ll ask beforehand won’t always be what they end up asking on the day of, and not everything you say will make the cut.

2. You can prepare all you want but if you overthink it, you’ll end up stumbling and sounding like a less refined version of yourself.

3. Don’t expect they’ll lead the interview so learn to lead and steer a conversation confidently because they just might throw you in front of the camera and press record.

4. Practice getting comfortable in front of the camera. People who make it look easy have been doing it for years. Don’t give into the pressure of comparison. It’s a learning process.

5. Know your message and what you’re really trying to say; there will be no hesitation when you’re speaking.

6. If you feel it didn’t turn out as smoothly as you had hoped, recognize that it also takes the other half (interviewer) to do their part in creating a comfortable space for flow of discussion. See #4.

7. Be extremely mindful of your subconscious body movements. That shit gets noticed on camera and takes away from your message.

8. Don’t assume they’ll do their research. They might not find all your information, so don’t be afraid to tell them your contact, social handles, or anything else about yourself that is important.

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Image Description: Me sitting submerged in salt water, in a dark room, with my naked back turned to the camera, hair pushed to the side. 2019.

Disease or dis-ease? The word refers to a lack of ease in our natural state. Instead of placing emphasis on a particular ailment, it’s about focusing on prevention rather than finding a cure. Since 2014, float therapy has helped me tremendously with healing in ways I didn’t think was possible in my situation. It not only relieves physical tension but it resets my mental state and I literally always leave feeling happier. I get to feel free and completely myself. Floating makes me feel empowered and safe. Highly, highly recommend it, it is truly something.

By the way, this one here isn’t sensory deprivation but still enjoyable. Take extra precaution because it is super slippery! It feels like death just to get to my float because I can easily (and likely) experience a damaging fall without being able to catch myself...but it’s still worth it. All in the name of healing🤘🏼

Float on, my dudes.

#happyplace

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Photography by Tishan Baldeo

My dear friend Emily and I worked on an article with NOW Magazine to shine light on the harsh reality of navigating sex and dating with a physical disability.

As someone experiencing this first hand, I finally speak my truth and share my story in hopes of opening minds and hearts everywhere.

There is a lot to be said on how often I experience ableism in all areas of my life. I know I’m not the only one. Though, I didn’t always feel this proactive. No one in my world had a disability, I was the first and people didn’t seem to know how to act or feel about it. I felt so alone and still, till this day, misunderstood.

By opening up, this means I can help fast track someone going through similar struggles as me. I want to ease their suffering by providing the tools I learned to help myself. I want to inspire them be proactive and informed. I want to help them take back control. If I can help them be more comfortable and empowered in their own skin, then it’s more than I’ve ever done.

I hope you enjoy this article because I am fiercely proud of Em and I for representing an overlooked community.

Please give it a read here and thank you for reading.

Kae

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I was recently asked if I listen to music for the energy high or to feel the emotion - good question. The answer to this has varying degrees of course. For example, this Bobono set makes me feel both! I was super lucky to catch Bonobo live last year at Danforth Music Hall.

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