As someone living with a tiring, progressive disability working in the digital space for inclusion and accessibility, I’ve seen firsthand how AI can revolutionize the creation of alt-text. Alt-text (alternative text) is a short description added to images on websites or digital content to help people who use screen readers understand what the image shows—it makes visuals accessible to those who can’t see them.

AI tools streamline the process of generating accurate, descriptive alt-text for images, saving time and reducing the cognitive load of manual writing. This not only enhances accessibility for screen reader users but also ensures that digital content is more inclusive and compliant with accessibility standards.

By leveraging AI, we can focus more on strategic efforts to promote inclusion while ensuring that no one is left behind in the digital world. Below is an example of me using AI to write alt-text for my selfie posted on Instagram, alongside a background generated with AI in Photoshop (cue in efficiency and creativity).

Image Description: An East Asian woman with long, straight black, brown-blonde hair styled in a half-up, messy bun poses in front of a surreal background featuring floating spherical structures with wooden textures and circular windows. She is wearing a sheer white ribbed top over a black bralette. Her expression is neutral, and her makeup is subtle with defined eyebrows, winged eyeliner, and false eyelashes. The floating structures are suspended by thin cables, creating a futuristic, otherworldly atmosphere against a pale, cloudy sky.

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While AI handles the heavy lifting of generating alt-text, adding a human touch to review and refine the output ensures accuracy, context, and inclusivity. Combining AI efficiency with human insight creates the best of both worlds for truly accessible digital content. Remember, AI is a powerful tool to support accessibility efforts, but it’s not a replacement for the thoughtfulness and understanding that only humans can provide.

If you’d like to learn more about AI overall, I highly recommend listening to my pal Dre Labre, a creative futurist, talk about it on The Grain Podcast.

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Image Description: Kae’s black cane is resting at an angle on a white couch at the Cozey furniture showroom store in Toronto.

My home is my pride and joy—a safe, comfortable space I never had until recent years. Before that, finding an accessible and affordable place felt impossible, leaving me bouncing between temporary housing and never truly being able to settle. Now, having a home that meets my needs has given me a sense of stability, independence, and peace I never thought I’d get to have.

As my condition progresses, I continue adapting my space to support both my safety and autonomy. But here’s the challenge—most assistive and adaptive products look clinical, outdated, or uninviting. Nobody wants their home to feel like a hospital-style living environment. I constantly navigate the balance between creating a space that feels like me and ensuring it remains functional and accessible, all while juggling cost.

Being able to shape my environment to fit my needs has transformed my quality of life. Accessibility shouldn’t mean sacrificing style—safety and beauty can coexist. Yet, the industry often only offers the bare minimum when it comes to meeting disabled people’s needs. Thankfully, here are some companies proving that function, dignity, and great design can come together, making accessible living not just practical but joyful.

Image Description: A wall of picture frames with Capella Design’s ‘Selora Grab Bar Frame’, seamlessly blending in the middle amongst the other frames. It features a modern grab bar built-in underneath the frame.

Image Description: A black manual wheelchair is placed on the right-hand side of an ADA-compliant single sink vanity (made with Italian Carrera marble and black, durable steel), showing it can fit underneath comfortably. The mirror is pivoted as well. Both the vanity and mirror are made by Pottery Barn.

Image Description: A toilet is pictured with Kohler’s 3-inch ‘Hyten Elevated Toilet Seat’ installed, seamlessly blended in, virtually undetected, which looks like a normal toilet seat only it is taller.

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Pictured left to right:
1. Capella Design 🇨🇦
2. Pottery Barn x Michael Graves Design 🇺🇸🇨🇦
3. Kohler 🇺🇸🇨🇦

Know of any others? Tag them below! What’s one design or product that’s made your space feel more accessible and stylish?

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Image Description: Top left: a wide shot taken from the back of the speaking event with Molly Burke and CNIB’s President and CEO. Top right: A photo of Kae showing off her braille nails to Molly in front of a yellow nad black branded CNIB backdrop. Bottom left: A photo of Kae getting her nails done while Molly is in the background sharing her story. Bottom right: A photo of Kae posing with her friend, Mara Lauren, who is wearing sunglasses, a beige beanie, a black shirt and blue jean overalls, holding her white cane.

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Image description: A photo of Kae showing her new chrome coloured nails with the tactile braille nail designs in black, spelling her name “Kae” on 3 of her fingers.

Last week, I had an amazing time at the #BrailleNails event with @mollyburkeofficial. A huge thank you to CNIB Foundation for hosting such a fun, inspiring, and connection-filled day in honour of Braille Literacy Month at Majesty’s Pleasure in Yorkville, Toronto.

Meeting Molly was a full-circle moment for me. When I was starting to navigate being more visibly disabled, I discovered her YouTube channel, which offered me a glimpse into a future I didn’t know was possible for me. Fast forward to today, sharing space with her and the incredible disabled community felt truly special.

P.S. The #BrailleNails event has been the most accessible event I’ve attended to date! For me, a successful event means encountering no barriers and being able to show up as smoothly and naturally as everyone else—exactly the way it should be.

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Image Description: A white flower is half way dried, laying flat on a wooden kitchen table top.

I’ve been quiet—2025 hasn’t started as smoothly as I had hoped. There’s something about a new year that feels heavier when you’re living with a progressive disease. It’s not just the usual hopes and resolutions; it’s the quiet, unspoken worry about what might change—what I might lose. The calendar flipping forward can feel like both a fresh start and a ticking clock, each day a reminder that time moves on, even as my abilities fade. The thought of continuing an endless fight feels daunting. Living with a shifting 'normal' is exhausting, even in its simplest moments. The weight of the world and the pressure I put on myself can feel overwhelming. I know I should celebrate being here, but sometimes it’s hard when surviving feels like all I’ve been doing.

Still, I’m grateful. Life is unpredictable and it moves fast. Last year, I embraced as many ‘firsts’ as possible, driven by how LGMD continues to shape my world. This year, I’m holding onto that same goal. My world feels simpler now—not because it’s easy, but because this unique journey has uncovered the beauty in not taking anything for granted. That’s the silver lining I’m learning to cherish, one day at a time. 

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Image Description: A sign that reads “Welcome to New York”.

Image Description: A photo taken from behind of a vehicle with a navy blue and deep yellow, New York license plate with the ISA symbol.

In my world, where every detail demands careful planning, the chance to take an impromptu day trip feels like a rare kind of freedom. It’s the thrill of a temporary illusion, but some things remain unchanged: new sights to take in, fresh air to breathe, and a break from the familiar rhythms of routine and the mundane. For a moment, the weight of everyday problems and preparation lifts, and I get to simply be—exploring, experiencing, and feeling alive in a way that’s both liberating and extraordinary. I’m much simpler now, and I’m just happy to come along for the ride.

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Image Description: A selfie of Kae in the passenger seat of a car. She is wearing sunglasses and posing with her head lightly resting on her hand. There is a lime green graphic logo cropped from a photo she took. It says “FREAK” with the Nike swoosh logo below it. On the bottom right corner, the word “Certified” is written in white sans-serif text”.

Historically, people with visible disabilities were labelled as “freaks” or part of “freak shows”, and having a rare and unique diagnosis can make you feel like one. No one can relate, which leaves you feeling abnormal and segregated. You know you will never get to live a normal life again, and that brings an unexplainable, isolating kind of grief.

Being different also chips away at your self-esteem; you’re not only battling external judgment and societal expectations but also fighting the endless noise of your inner critic. It’s as much a mental game as it is a physical one. It took me a long time to come to terms with accepting something beyond my control, and yet still, on my darkest days, I inevitably fall back into old habits and shrink. I don’t want to be perceived, and the future feels bleak. I am tired but I am trying.

I’ve learned that survival alone isn’t enough. It’s easy to get swept up in the present, overlooking the trail you’ve left behind but I realize I have to carve out intentional time to reflect and celebrate my wins, or I risk collapsing under the weight of it all.

My life isn’t normal, and it never will be—but normal isn’t the goal anymore. I’ve learned to risk being seen for all that I am, embracing the word “freak” as part of my story. It’s no longer shameful. It’s proof that I’ve survived, grown, and found meaning in a life I thought was over. It’s not, it just looks different—Happy late International Day of People with Disabilities (IDPD) to my people. I see you and I’m proud of us. 💙

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Image Description: a photo of Kae in 2016 dressed as Medusa at a Halloween party, she is holding both her hands upwards balancing the words “disability” and “barriers”, with “disability” being higher than “barriers”.

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This Halloween, let’s remember that for people with disabilities, the real horrors aren’t monsters or ghosts—they’re the barriers society creates. It’s not our bodies that haunt us but the inaccessible buildings, transportation, policies, and ableism that make life feel like a never-ending Halloween nightmare. Yet, we adapt, we resist, and we advocate, transforming society’s fears and limitations into fuel for a world that includes everyone—but it’s still scary out there. Stay safe y’all. 💙🎃👻

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Image Description: A photo of the Northern Lights with lavender purple and mint green colours in the night sky.

Seeing the Northern Lights has always been on my bucket list, and I’m still in awe that I got to experience it without having to travel far. I never thought I’d witness it in my lifetime, assuming it required travelling abroad (cue inaccessibility and air travel).

It started to feel a bit comical, as if we were being teased by news outlets every other week, but the KP Index forecast was strong on October 10th.

Mother Nature has been incredibly generous this year—I feel so lucky to have experienced both the Total Solar Eclipse and the Northern Lights.

For those who missed it, don’t feel bad; seeing the Northern Lights in person is much more subtle than photos suggest—it’s all in the photography but still something worth appreciating.

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Image Description: Kae is an East Asian woman sitting in her black powered wheelchair, wearing a black tank top, beige crossbody bag and cream coloured jeans with black opened toe sandals. She is posing in front of a mural done by the Deaf Artist, Christine Sun Kim. The wall is white with black handwritten text that reads “All Night Future” above a drawing of a visual arch that displays the ASL for “all night”.

Image Description: Blue text on a white rectangle text box reads: “Growing up with a disability is no piece of cake.” Below text is a birthday cake with a slice taken out. Where the slice should be is a pile of sprinkles. Sticking out of the sprinkles is a long to-do list. A blue circle graphic is in the bottom left corner, with white text that reads: “Get the facts to close the gap.”

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Transitioning into adult healthcare as a teenager with a rare muscle disease was isolating and overwhelming, especially without pediatric care or support. No one knew what to do with me or how to help. When I finally received a diagnosis, I was told there was no cure or treatment for my disease, and that there was “nothing they could do.” I entered the adult system without a care plan, without a family doctor, and with no clear path forward. I was left to manage my progressive symptoms on my own, all while navigating the challenges of growing up with a disability.

I became my own advocate out of necessity—repeatedly explaining my condition and symptoms to most providers who had never heard of it. Every time I sought help, it felt like starting from zero, and it still does to this day. For many disabled youth in Ontario, this lack of support and structured transition can result in poor health outcomes that follow them for life.

I’m excited to partner with Holland Bloorview Kids Rehabilitation Hospital to amplify their ‘No Piece of Cake’ campaign to raise awareness and push for change. We need programs that bridge the gap between pediatric and adult care so that no young person with a disability has to face adulthood alone and unsupported. I encourage everyone to get the facts to close the gap. Download Holland Bloorview Kids Rehabilitation Hospital Foundation's report and share it with your networks to help build a healthcare system that sees and supports disabled youth, equipping them with the care they need to thrive in adulthood. #NoPieceOfCake www.nopieceofcake.ca

Image Description/Alt-text L-R:

1. Blue text on a lighter blue background reads: "Challenges in the adult health-care system." Below text, to the left, additional text reads: "2/3 of young adults with disabilities report their health-care needs are not being met." To the right is a graphic of 9 blue people icons, arranged in a 3 x 3 grid, with the bottom row of three almost transparent. At the bottom of the graphic is the Holland Bloorview logo, centred.

2. Purple text on a lighter purple background reads: "Financial implications." Below text is a circle with some medical cross symbols and arrows in the middle. Below circle, text reads: "70% of young adults with disabilities face increased medical costs after transitioning to adult care." At the bottom of the graphic is the Holland Bloorview logo, centred. 

3. Orange text on a lighter orange background reads: "Participation and quality of life implications." Below text is a series of orange icons, including a flower, a brief case, people and a gear. At the bottom, text reads: "64% of young adults' participation in life is limited by their health-care needs." At the bottom of the graphic is the Holland Bloorview logo, centred.

4. Green text on a lighter green background reads: "Barriers to access: 77% of young adults with disabilities face one or more barriers when accessing medical care." Below text is a green graphic of 8 people icons arranged in a line, with the 2 on the right almost transparent. In front of people icons is a lighter green fence icon. At the bottom of the graphic is the Holland Bloorview logo, centred.

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This is what living with a muscle-wasting disease feels (and looks) like.

Image Description: A low-res image of 3 members of the Power Rangers surrounding an old lady, about to bully her. She is holding onto her rollator. Kae wrote “me” in white text over the old lady and had each Power Ranger representing the symptoms of Muscular Dystrophy. L-R: Weakness, Progression, and Atrophy.

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Image Description: "LMGD" is written in a black lowercase sans serif text in the middle of a lime green background square which is a play on Charli XCX's BRAT music album, designed by Kae.

Image description: A self portrait of Kae who is wearing lime green and black, showing off her royal blue nail polish which are the colours of LGMD Foundation. There is text that says LGMD2B and some transparent light green wavy graphic elements decorated across the image, designed by Kae.

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Oh you know, just casually serving LGMD brat. Today is #LGMDAwarenessDay and it’s dedicated to raising awareness for a subgroup within MD. There are over 30 different subtypes of LGMD alone and it progressively weakens the muscles, especially around the hips and shoulders. (Spoiler: This is the one I was diagnosed with).

Life with this orphaned rare disease is wild and unpredictable. Part of putting up a good fight is showing up, letting the angst out, accepting your imperfections, and embracing the chaos that comes with being different. There’s strength in our numbers and I plan on channelling my inner brat for as long as I can so I win and *it* doesn’t.

Happy LGMD Day, my warriors! Proud of you. 💚💚💚 I’m wearing lime green for us!

And a big shoutout to the dedicated researchers, healthcare professionals, and advocates working tirelessly to find treatments, raise awareness, and improve our quality of life.

Image Description: Top left corner says "LGMD" with "Subtype" underneath, both in dark green sans serif font, followed by all the LGMD subtype lettering system in a grid-like structure. The whole canvas is a lime green and there is a dark green thin-line wavy graphic in the background. Bottom right says "Limb-Girdle Muscular Dystrophy" in full. A bingo-identity like poster designed by Kae.

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Image Description: A 4:5 poster Kae designed to promote her new Amazon Storefront on Instagram. The background image is a lime green/royal blue duotone edit of a portrait of Kae who is sitting on a wooden stool, leaning on her black cane. Those are the colours for her rare disease, LGMD. On the left-hand side is an iPhone mockup with a white and lime green striped storefront canopy. The screen has a zoomed-in image of Kae’s hand and her cane from the portrait, overlaid with a transparent black background. White sans serif heading text reads “Kae’s Amazon Storefront”. Below is an Amazon teal brand colour button that says follow and a white arrow cursor hovering over it. On the top left-hand corner of the poster are three icons, L-R: Amazon’s icon, wheelchair symbol, and a wellness hand/lotus icon.

When you’re on a life-long journey of healing and self-care, you tend to experiment on yourself which means many periods of trial and error. I’ve always wanted to share what works for me, what doesn’t, and any brilliant products I come across that may help improve someone’s quality of life and mindset. I’ve subsequently become my own occupational therapist over the years and given the progressive nature of my disease, will have to be for the rest of my life. There is no cure so lifestyle is very important to me; things will always be changing which makes me every marketer’s dream customer (lol) but it’s part of my personality anyway. I genuinely enjoy the discovery process and sharing my resources with the community. That said, I’ve finally set up an Amazon shop! I will be continuously updating it and hopefully, get a US shop for my American followers soon. 💚💚💚 (Not sponsored).

Shop here: www.amazon.ca/shop/lettereleven

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Image Description: A birds-eye-view of Kae holding a blue butterfly with a broken wing on her index finger, resting on her lap.

As my disease progresses, I’m hyper-aware of the timeline I’m on. Experiencing a decline in mobility and strength heightens the fear and anxiety in my situation. I can’t control the rate my body decides to deteriorate and I can’t stop time but I can begin to dream again. In my early years of diagnosis, I halted all visions I had of my future—I wasn’t sure I had one anymore. Eventually, though, I learned to change my tune. I started making bucket lists every year, grand and small, even if it seemed unobtainable. Sometimes I barely cross anything off but I write it down again the following year. 

Life is about doing what you can. I might not get to travel the world but I’m happy to participate in life doing even the mundane things. When you’ve been dealt challenging cards, you become simple like that. This disease has emphasized appreciating more presence and experience than material, and that feels like living. 

I finally got the chance to go to a butterfly conservatory! A kind stranger handed me her butterfly, which I later noticed had a broken wing. Undoubtedly a sign and no coincidence I was meant to meet and hold that disabled beauty. Butterflies are symbols of transformation, hope, and rebirth. We are the same. 🦋🤍

What’s on your bucket list?

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Image Description: The official movie poster for “Quad Gods” is titled in large white sans serif text. There is a subtext at the top that says “The world was not designed for them. So they created their own” and the HBO Original logo in white above the documentary title. The main image is of three Black disabled characters in their black power wheelchairs on the streets of New York, each wearing their Quad Gods team shirt. They wear expressions of joy, determination, and empowerment. The overall edit theme is dark and moody, mixed with green and orange hues. The text at the bottom of the poster reads in white sans serif text “New Documentary July 10|MAX”.

Image Description: Two photos taken by Kae’s phone of a scene from the documentary film, “Quad Gods” playing from her projector onto her wall, stitched together to show the subtitles of one of the main characters speaking, reflecting by the water. He says “I’m gonna celebrate the little accomplishments because those are the things you take for granted”.

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I really enjoyed watching HBO’s Quad Gods documentary. I appreciated all aspects of authentic storytelling and disability representation, especially through the lens of Black Disabled voices—which felt like a breath of fresh air.

Quad Gods is the first ever all-quadriplegic e-sports team. The film explores the world of gaming, Al, technology, community, and poetic reflections on living in a disabled body. Highly relatable despite different medical diagnoses' and an insightful, humanizing watch. Although, I would've liked to see and learn more about the impact gaming has on neuroscience and the gaming world for players with disabilities in general.

TLDR: recommend watching!

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Image description: Kae, an east asian woman with brown hair is sitting in her power wheelchair, leaning forward and looking over her shoulder, smiling with her teeth, posing in the paved pathway of a park in Toronto called High Park, with cherry blossoms blooming in the background. Large white sans-serif text is written over the photo reading “Happy Mobility Awareness Month”.

It’ll be a little over a year since I got my first power wheelchair and admittedly, I only recently named her…which says a lot about our budding relationship—and my acceptance. I knew she was important and would become a part of me but perhaps I didn’t want to get attached because subconsciously that meant I would always need her. I grapple with that dark truth but remind myself it’s about perspective. It took me a long time to come to terms with my prognosis of losing the ability to walk over time; transitioning from a healthy, able-bodied person to experiencing a gradual decline in strength and mobility is extremely challenging. That’s the thing about progression though, it’s not constant. I always have to find my new normal every time I notice a change in my body and abilities—and that’s what the fight is about. I must keep going. I must keep adapting. I must keep being here.

A wheelchair doesn’t solve all my problems. It helps but it also adds new problems to solve like how to travel with it, where to store it, how to use it in tight spaces, how to transfer safely, etc. Now that I’ve had Willow for a while and experienced more life with her, I reflect on how much easier life could’ve been if I had embraced mobility aids sooner. They are tools, not symbols of pity; they liberate people with mobility challenges. I still get shy being out in my wheelchair in social settings but freedom ultimately trumps the fear and awkwardness because I get to have some of my life and mobility back. To anyone transitioning into being a wheelchair user, you got this. 💙 Happy Mobility Awareness Month!

Love, K.

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34 years ago on March 12, a group of disability activists abandoned their mobility devices to climb, crawl, and edge up the steps of the U.S. Capitol in Washington, DC; forcing Congress to see the struggles that people with disabilities have to face day-to-day due to inaccessible infrastructures.

The “Capitol Crawl” protest spurred Congress to pass the ADA (Americans with Disabilities Act) which was signed into law on July 26, 1990. Incredible. Although I’m Canadian, this critical event in US history impacts and influences beyond borders as a legal framework to follow. 

Image description: Kae is smiling while sitting on the steps leading to the U.S. Capitol Building.

Image description: Kae is smiling while sitting in her wheelchair in front of the steps leading to the U.S. Capitol Building.

Last fall, I had the opportunity to see the Capitol building in person. I couldn’t be more proud and thankful to be part of an amazing, resilient community that fought for our rights before us. 

P.S. left a piece of me in DC. Shop #LetsEndMD here: www.kaetran.com/shop

Image description: Kae is standing by a wooden utility pole on the sidewalk, posing beside her small #LetsEndMD sticker that she stuck on the back of a street sign, with the Capitol building in view of the background.

Image description: A close up of Kae’s #LetsEndMD sticker on the back of the street sign on the utility post with the Capitol Building in view of the background.

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Image description: A photo of Kae leaning on a shelf, wearing a white tank top, black belt and beige cargo pants. Both her hands loosely resting on her belt. She wears a neutral expression as she looks into the camera. Her straight hair is all moved to one side. Dark green lettering for “LGMD2B/R2” is broken into each corner of the image as a graphic design choice. “Limb Girdle Muscular Dystrophy 2B/R2” is also in green text, written out on the right-hand side of the image. A vertical strip of a white zebra pattern is behind Kae which is a symbol of rare disease patients.

Image description: A quote by Thomas Jefferson in 1786 in black text on a textured paper background, “Who then can so softly bind up the wound of another as he who has felt the same wound himself?”.

Today is Rare Disease Day. 🦓🧬

I live with Limb-Girdle Muscular Dystrophy, a progressive muscle-wasting disease with no known cure. I was diagnosed in my teenage years and hid it for as long as I could. Now, I intentionally have it in my bio and openly write about life with MD for everyone to see. I’ve come a long way since my days of internalized ableism; my formative years were full of fear, shame, anxiety, ignorance, and isolation. Eventually, I found the courage to share my story. Self-advocating began out of necessity but later grew into a passion for helping others to not feel alone—I never want anyone to endure what I had to go through.

The internet is the first place to start when seeking health/healthcare information, resources, and support, and people use social media to find others with the same health condition—which is how I found my community. Currently, approximately 1175 people worldwide are confirmed to have LGMD2B/R2, including myself (source: Jain Foundation). Rare disease patients are often neglected due to our limited patient population and therefore, funding is hard to secure. With more awareness and patient advocacy, it will incentivize pharma and biotech companies to focus on us. We matter, our numbers matter, and we can begin to close the funding gap to accelerate developing therapies.

TLDR: if you’re part of the rare disease community, find and sign up for your patient registry and stay connected. If you’re not, hear us and see us. Be our allies and support; we’re stronger together. 💚

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Image Description: A Selfie of Kae lightly smiling in a car with the sun hitting her face; wearing a yellow ribbed beanie toque, red vintage Burberry sunglasses, and a black zip-up hoodie, underneath an army green quilted jacket.

Image description: photo taken from the internet of a yellow duck plushie bundled up in a scarf around its head, wearing cat-eyed shaped sunglasses, with its orange beak making a huge frown.

The feeling when you have to bundle up to brave the cold with a disability. As time passes, I’m finding I’m increasingly dreading getting dressed now as it exerts a lot out of me. Essentially, wearing less is becoming more accessible to me. Perhaps my sign to move somewhere warmer? Any suggestions? 

I can’t wait to touch the grass again. ☀️

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On behalf of myself and the Muscular Dystrophy community, one of my favourite humans, Kayla Welsh is raising money for Muscular Dystrophy Canada (MDC) by participating in the 2024 Guacho Derby; a 500 km race on horseback through the Patagonian wilderness. Very exciting and very Kayla, if you know her.

I’ve known Kayla since the ninth grade (circa 2005) which is the beginning of my symptoms, long before I was finally diagnosed with MD. To know someone who knew you before your life-changing diagnosis and decline is deeply special; a time in history I’ll cherish more than anything alongside our steady friendship. There aren’t many people besides family that know that side of me so her choosing MDC is very touching. (Love ya, Squelch!)

Please share and donate if you can, 100% goes to MDC. These funds help support MDC’s programs, services, research initiatives, and provide funding for life-changing equipment to enhance the lives of those affected by Neuromuscular Disorders.

Fundraiser link: https://www.gofundme.com/f/gaucho-derby-for-md-canada-lets-end-md

You can follow along on @gauchoderby’s Instagram to watch the race unfold from Feb 8-17! Go Kayla! 🇦🇷🐎✨ 

Remember the movie, Bubble Boy? I finally got around to watching it this week while ironically, self-isolating and recovering from catching COVID. It was nostalgic, classically 2001, and eye-opening but sadly, the real story of David Vetter didn’t end with a happily-ever-after. The movie doesn’t accurately represent David’s story but it gives you something to think about and learn from. I’m truly in awe of the team that stepped up for this family.

In many ways, I felt I could relate to Jake Gyllenhaal’s character and thus David, not just in this moment as I recover at home but as a whole. There are many parallels between someone with a progressive disability and someone who lacks an immune system; both are deprived of the outdoors, participation in society, and human interaction but the main difference is I won’t die if I get exposed to germs. 

Today, there are still many people who are immunocompromised. Let this be a kind reminder to respect people’s decision to wear PPE, and do the same if you know it can save a life. 

Image Description: Kae takes a selfie of herself lying down on a physiotherapist table, wearing a black mask.

Image Description: Black sans serif text that reads “I can be in my bed and still be “busy” you know. Busy gathering strength” on a white background.

Image Description: A screenshot of a tweet by Nia (@chronicnotebook) that reads “One aspect of chronic illness that people don’t see is compromise. You’re constantly trying to figure out what kind of life you can lead, that will bring you joy without making you feel too sick. That’s really hard to do and it comes with a lot of grief, frustration and sadness”.

Image Description: A screenshot of Kae’s Threads post that reads “I looked up the real story behind David Vetter’s life and his bubble suit was designed by NASA, costing $50,000. I’ve so many questions. How did the hospital get NASA to care and fund this ultra-rare disease? What strings did this family have to pull to get people to care about David’s life? Did NASA only take this on because it gained international attention or did that happen after the fact? If they can do this back in the 70s, how can we get people to care about rare diseases today?”

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