Stephanie Ko
LightNews LightNews
banner
sinistralscribe.bsky.social
Stephanie Ko
@sinistralscribe.bsky.social
200 followers 460 following 49 posts
Disabled & chronically ill admin, advocate, pixel pusher, plant enjoyer, costumier. She/her/hers.
💙 #MECFS et al. | 🎭 GM at @operamariposa.bsky.social
📍MST Territories (Greater Vancouver, BC)

https://stephanieko.carrd.co
Posts Replies Media Videos
sinistralscribe.bsky.social
References:

Proposed 2026 budget: council.vancouver.ca/20251112/doc...

Appendices A & B, budget allocations: council.vancouver.ca/20251112/doc...

Appendix C, resident survey results: council.vancouver.ca/20251112/doc... (Note the preferences of residents, versus the Council decision.)
A screencap of survey results shows that 52% of residents support a property tax increase of 5% to maintain current level of services; 16% of residents support a property tax increase of 2.5% with some reductions and services; 12% of residents support a property tax increase of 1.5% with moderate reductions and services; and 10% of residents support of property tax increase of 0% with the most reductions in services. Red text indicates the option chosen by Council, pointing to the least popular option of a 0% property tax increase with the most reduction in services.
November 11, 2025 at 5:55 AM
sinistralscribe.bsky.social
Help needed for "e", a local organizer I know. After developing #LongCovid, e also lost housing & possessions when an oil refinery covered them w/ toxic fumes. They've finally secured new housing, but need help w/ rent & medical costs while long-term supports are pending. chuffed.org/project/supp...
graphic of clouds and sky, with a pink box containing the text, Support disabled QTPOC rebuilding after medical & housing crisis. chuffed.org/project/supportfore
September 21, 2025 at 1:16 AM
sinistralscribe.bsky.social
Then on Sunday Sept 14 - catch our hybrid Festival day on livestream, or mask up & join in at East Van’s Slocan Park. We have music, dancers, stage magic, freebies, & over 20 groups involved!

RSVP: www.tickettailor.com/events/clean....

Access & safety info: cleanairfestival.ca/en/safety-ac...
The Clean Air Festival logo is on a light purple, pink, and blue background with illustrated trees along the bottom border. Text reads: The 3rd Annual Clean Air Festival! A Covid-safer Hybrid Event. September 14 @ 1-7 PM PDT / 4-10 PM EDT. There is a cloud behind the text and the letter R is wearing a mask. Below that is the following text: “with performances by: Zeo Bookbinder, houseguest, Tiddley Cove Morris, Travis Bernhardt, and hosted by Mx Bukuru. There are two fluffy cloud graphics showcasing festival features. The left cloud is titled Community Care and lists the following: Building DIY Air Cleaners for high-risk community members, free N95 masks, rapid tests, DIY fit test kits, zines, and more. The right cloud is titled Fun & Games and lists the following: Arts, crafts & tabling, online games and social, and online and on-site prizes. Admission is free with donations welcome. Respirators (like N95 masks) are required and available on site. The festival takes place at Slocan Park in Vancouver, and on Zoom. The link to register and get safety and access info is cleanairfestival.ca The Clean Air Festival logo is on a light purple, pink, and blue background with illustrated trees along the bottom border. Text reads: The 3rd Annual Clean Air Festival! A Covid-safer Hybrid Event. September 14 @ 1-7 PM PDT / 4-10 PM EDT. There is a cloud behind the text and the letter R is wearing a mask. Below is a selection of logos. Featuring logos from the following participating organizations: Abolitionist Care and Belonging, Canadian Covid Society (online feature), Clean Air 604, Clean Air in BC Schools, CSSDP Vancouver, Devil's Club Street Medics, DoNoHarm BC, Dunbar Acupuncture, Dumpster Fire Distro, The Invisible Dream Caravan, Maskquerade Events, Masks4EastVan, Millions Missing BC, Public Health is Dead, Protect Our Province BC, SolidAIRity Greater Vancouver, Spring Magazine Vancouver, The Travelling Hygienist, Vancouver Still Cares, Vancouver Tenants Union - Joyce Collingwood chapter, Venturous Counselling + Consulting, Weaving Our Worlds Collective and logos from the following sponsors: Aranet, Baevocative Photography & Videography, Cosy Yoga Club, Essential Opera, Green Muse Herbs, Heart & Hands Health Collective, Live Educate Transform Society (LET’S), North Box Systems, Opera Mariposa, The Poster Guy, and Vitacore
August 30, 2025 at 8:29 PM
sinistralscribe.bsky.social
Excited to be lending a hand with the #CleanAirFestival again this year 🩵🪁 First up: a FREE webinar and Q&A on Sept 7, featuring certified air filter specialist Bryan Louis & sustainability-focussed architect Ian Robertson. Register & get access deets: www.tickettailor.com/events/clean...
Graphic for a webinar on a light purple, pink, and yellow background. Fluffy blue clouds features Clean Air Festival title design in white, pink, and blue. There is a cloud behind the text and the letter R is wearing a mask. Main text reads “Ask a Clean Air Nerd: a Webinar and Q&A” taking place at Sunday, September 7 from 4 to 5:30 pm Pacific / 7 to 8:30 pm Eastern on Zoom. Closed captioning provided. Featuring Bryan Louis (Dr.sc., CAFS) and Ian Robertson (M.Arch). Free to attend. There is a banner at the bottom that reads: Learn more and register today at cleanairfestival.ca
August 30, 2025 at 8:29 PM
sinistralscribe.bsky.social
Did you know? BC gov is now accepting written ideas from the public on what to include in the 2026 #BCBudget. Whether your priorities include health, housing, climate justice, arts funding, disability supports or more, you can have your say til June 20 at 2pm: consultation-portal.leg.bc.ca
Graphic with BC landscape images in blue, green and teal. White sans serif text reads: BC Budget 2026 Consultation. Share Your Views by June 20, 2025. Participate now and more information at: bcleg.ca/consultations Parliamentary Committees Office 250 356 2933 or toll-free 1 877 428 8337. In the corner is a teal logo for BC’s Select Standing Committee on Finance & Government Services.
June 12, 2025 at 3:04 AM
sinistralscribe.bsky.social
RSVP and find access info for @operamariposa.bsky.social & @mefmsocietyofbc.bsky.social's online tea party at bluesunday.operamariposa.com. And be sure to check out #BlueSunday2025 and #TeaPartyForME2025, to catch more people taking part in this beloved community celebration around the globe 🌎
Against a watercolour background of light blue, purple and teal is an image of a blue teacup and purple flowers. Next to Mariposa's red swallowtail butterfly, text reads, You are cordially invited to our Blue Sunday tea party social fundraiser, hosted by the ME | FM Society of BC. Join on Zoom, or follow along on socials. Sunday, May 18th at 1 pm PT / 4 pm ET. Register and find accessibility information: BlueSunday.OperaMariposa.com. Bring tea & a snack. Celebrate in community. Donate to support a great cause.
May 18, 2025 at 5:51 PM
sinistralscribe.bsky.social
Confession time: I actually took these photos months ago, since it’s physically impossible for me to manage every May Awareness activity in one month. To connect in realtime though, join @operamariposa.bsky.social & @mefmsocietyofbc.bsky.social for our Blue Sunday Tea Social at 1pm Pacific on Zoom!
Closeup of six macarons in rose pink and spring green, on an oval porcelain platter, next to a dish of scones and a rose-patterned porcelain teacup, creamer, and sugar bowl. They are all spread on a sea blue tablecloth with a faint damask pattern of butterflies. Framed diagonally, a table spread of porcelain dishes includes blue and purple flower-shaped cupcakes, pink and green macarons, croissants, scones and teacups, alongside a glass vase purple-blue hyacinths, all laid out across a blue damask tablecloth patterned with butterflies. Out of focus in the background is Stephanie, a Chinese-Canadian woman wearing a blue top and glasses, who sits at the table raising a porcelain teacup to her lips.
May 18, 2025 at 5:51 PM
sinistralscribe.bsky.social
Today's the #BlueSunday2025, the “tea party for ME”! The idea behind this annual community tradition is simple:

☕ Sip some tea
🤳 Snap some photos for socials
💙 Support an #MECFS charity if you can by donating what you’d have paid at a café!

I'm joining in to celebrate, alongside #pwME worldwide.
Closeup of nine buttercream-frosted chocolate cupcakes by Maya's Cupcake Bouquets. They're decorated to look like elaborate flowers, including a variety of blue roses and dainty clusters of purple blossoms. The cupcakes sit on a porcelain rose-pattern plate, on a blue tablecloth with a faint butterfly pattern. In the background can be glimpsed croissants, another cupcake plate and a teacup, all out of focus. A closeup of Stephanie, seen past a screen of out-of-focus blue-purple hyacinth flowers. She is a disabled Chinese-Canadian woman with long dark hair, blue-rimmed glasses and a sea blue top, holding a porcelain teacup with a pink and silver rose pattern, glancing off to the side with a smile on her face. The background behind her is out of focus, with gleams of of light and green foliage glinting through a window.
May 18, 2025 at 5:51 PM
sinistralscribe.bsky.social
For more about some of the initiatives I've contributed to for May Awareness, check out:

@openmedf.bsky.social
@meactnet.bsky.social
@operamariposa.bsky.social
@mefmsocietyofbc.bsky.social
@berlin-buyers-club.bsky.social
@franhaddock.bsky.social
@christinabaltais.bsky.social #GoBlueForMECFS
An artistic portrait in blue and purple hues shows a woman in side profile from the chest up. Her figure is partly hidden by thick, cloud-like haze, and her silhouette includes images of tall wild grass and evergreen trees. Overlaid text reads: “Opera Mariposa’s Benefit + Awareness Month for the ME | FM Society of BC.” The image also includes two butterfly logos: a red one for Opera Mariposa, and a blue, purple, and teal one for the ME | FM Society of BC. Screencap of Open Medicine Foundation's May 12th newsletter, featuring a teal title bar reading, Amplifying community voices, above a series of photos of people including Stephanie who are holding signs. The signs read, "ME/CFS is...the disease with the lowest quality of life. Everything you used to love, makers you sick(er) now. Living in pain and fear. Bargaining, frozen on the outskirts of time and reality. Something anyone can get." Below that, newsletter text reads, "For ME/CFS Awareness Day, individuals around the world used their limited energy to take part in OMF’s social media campaign—sharing photos of themselves holding signs that complete the sentence: “ME/CFS is…” Each message is deeply personal and a powerful reminder that this disease can no longer be ignored. We invite you to visit our Community Voices page to see these moving posts. Please take a moment to read and share them with others. Every voice shared helps make ME/CFS visible." Against a watercolour background of light blue, purple and teal is an image of a blue teacup and purple flowers. Next to Mariposa's red swallowtail butterfly, text reads, You are cordially invited to our Blue Sunday tea party social fundraiser, hosted by the ME | FM Society of BC. Join on Zoom, or follow along on socials. Sunday, May 18th at 1 pm PT / 4 pm ET. Register and find accessibility information: BlueSunday.OperaMariposa.com. Bring tea & a snack. Celebrate in community. Donate to support a great cause. Cartoon protest art with detailed, dark lines depicting the Statue of Liberty sinking to her crown in bright red liquid. She holds her torch high above an ocean of red next to the words " I am one of the #Millions Missing. Save our Support Systems". S.O.S is boldly shown in red above her head. #MeActions logo is in the top left corner.
May 12, 2025 at 7:45 PM
sinistralscribe.bsky.social
Today’s #MECFS Awareness Day, and I have lots of thoughts but not enough energy to express all of them.

Instead, here are pics from just some of the Awareness initiatives I’m taking part in - plus eight reasons why, year after year, I raise awareness for ME & other complex chronic illnesses...
Stephanie, a disabled Chinese-Canadian woman, lies in bed in a room lit up blue for ME/CFS Awareness. Her black hair is spread around her face in waves and she has glasses, a blue top, and a serious expression. She is holding a sign with hand-written text reading, “ME/CFS is: something anyone can get” for Open Medicine Foundation’s #MECFSis campaign. Stephanie is shown from the waist up seated in front of a white wall and window blinds. She is wearing blue-framed glasses, a black N95-style mask, and a red tank top with a white slogan that reads, "Still Sick, Still Fighting" from ME Action’s #MillionsMissing campaign. Her hair is a bit wild like she just got out of bed, and she stares directly at the viewer, lit up with red-tinted light. Stephanie is seated in front of a white wall lit up with turquoise light, a tracery of green plant foliage visible out of focus behind her. She’s wearing blue-rimmed glasses and an ocean blue top with three quarter length sleeves, and is holding up a Go Blue for ME/CFS sign in one hand that reads, “I’m going blue for International ME/CFS Awareness Day because… we need more research, evidence-based care, and adequate supports NOW!” At the bottom of the sign is an illustrated blue ribbon surrounded by forget-me-not flowers, and the hashtags #GoBlueForMECFS and #GoBlueForACure. Within a Polaroid-style photo frame is a snapshot of Stephanie, lying in bed in a room lit up blue for ME Awareness. Her black hair is spread around her face, and she wears glasses, a blue top, and a serious expression. At the bottom of the photo frame is the hashtag #MEBCCommunityStrength, alongside the blue, purple, and teal butterfly logo for the ME | FM Society of BC.
May 12, 2025 at 7:45 PM
sinistralscribe.bsky.social
Just a few moments that stuck out to me from today's #MillionsMissing rally in Vancouver:

Dr. Susan Kuo from @protectbc.bsky.social, describing how the burden of disease & disability for #LongCovid has surpassed cancer & heart disease, without any commensurate investment in research or care.

1/8
The livestream of Millions Missing Vancouver 2025 plays on a large monitor, with a dim red-lit room behind it. On the screen, a speaker with long rainbow hair, a black respirator, red top, crochet sweater and blue jeans is holding a microphone and reads a speech. Around the speaker is a red millions missing banner, a sun shade, another speaker waiting, a sign saying We Are #MillionsMissing, and in the background, an awning with long garlands of red posters.
May 11, 2025 at 1:45 AM
sinistralscribe.bsky.social
Update: I’m going to speaking at this event by proxy! One of the #MillionsMissing BC organizers will be reading my speech.

Catch the event via livestream tomorrow (like I plan to), or mask up & head to Vancouver’s Jack Poole plaza, to show up in person for those of us who can’t.

#MECFS #pwME
Stephanie, a disabled Chinese-Canadian woman with wavy dark hair, is shown from the waist up seated in front of a white wall and window blinds. She is wearing blue-framed glasses, a black N95-equivalent mask (respirator), and a red tank top with a white slogan that reads. “Still Sick, Still Fighting". She stares directly at the viewer, lit up with red-tinted light.
May 9, 2025 at 9:59 PM
sinistralscribe.bsky.social
Anyone can develop #MECFS. I'm one of the people who already has. If you have capacity, please join me to demand policy-makers follow the recommendations of community members, experts, & their own committee to improve care for ME. Allies welcome!

RSVP or send a message: forms.gle/uWWfUx34VNNX...
closeup of a red sign on Premier David Eby's office window. Above a photo of a Chinese-Canadian woman's head resting on a pillow, a quote reads, "I've had ME/CFS since childhood, when I was infected with a respiratory virus at school. Over 25 years later I'm still mostly bedridden, and I've never had a doctor I didn't need to educate about this illness." Stephanie K., Vancouver. Sick since 1998. Millions Missing BC.
May 6, 2025 at 10:55 PM
sinistralscribe.bsky.social
Heads up, health justice allies! On May 10, #MillionsMissing BC is calling for improved #MECFS healthcare in BC. Don a mask & join in-person at Jack Poole Plaza at 1 pm, or submit a message online.

Details/access info: www.facebook.com/share/1AkW1E...
RSVP/send message: forms.gle/uWWfUx34VNNX...
Strung along a row of trees are many red Millions Missing posters, highlighting stories of people with ME/CFS who could not show up in person
May 6, 2025 at 10:55 PM
sinistralscribe.bsky.social
My friend Katie has an upcoming surgery (on her birthday, of all days!), and needs community support during her recovery. It would mean the world to me if you’d check out her surgery+birthday wish list or consider sharing: bit.ly/Katie-surger... 💜

#fibro #EDS #endo #MCAS #IIH #HighRiskCovid19
Peach and purple graphic with a photo of Katie, a white woman with curly brown hair, glasses, and a purple top. Header text reads, help Katie recover from surgery. Verified by sinistralscribe.bsky.social. Body text reads, Katie is a longtime arts volunteer, community advocate, caregiver, and cat parent who has become increasingly disabled & immunocompromised with fibromyalgia, EDS, endometriosis, MCAS, and intracranial hypertension. She’s getting a long-awaited surgery this March (on her birthday!), and needs community support during her recovery. Check out Katie’s surgery + birthday wish list today, and please share! bit.ly/Katie-surgery-birthday-list
February 18, 2025 at 6:10 PM