This morning at 7:50 a.m., about 43 (ish) people showed up to a theatre in Seattle for a private, Covid cautious screening of Hayao Miyazaki's latest film, The Boy and the Heron.
People took a rapid test and reported results to the organizers before arriving and wore high-quality masks at all times. Folks stayed home if they or anyone in their household felt unwell. Masks and tests were available on site if needed.
Cost was about $13 per ticket after donations from #CovidCautious community members who wanted to help make the event accessible to folks.
CO2 was monitored and never got over 900.
The film was incredible. Knowing there are folks in my community who are willing to wake up early af because they haven't been to the theater in years due to #COVID19 was just as incredible.
Covid safe events aren't just possible, they're desired. Imagine how many people would have attended if it could have been on a Saturday afternoon or evening?
I'm in a group of COVID-cautious #Boston area folks who organize COVID-safe outings to private theater showings. Everyone who attends is fully vaccinated and symptom-free, takes a rapid test beforehand, and wears a good mask for the entire movie. If you're interested, go to https://groups.google.com/g/boston-covid-safe-movies and click "Join group" near the top. We're currently organizing a Barbie outing; if you'd like to participate, see "COVID-safe Barbie showing" once you've joined the group. @universalhub#CovidCautious
I've told the story of how I got into #EmergencyPrep... Local govt held a community meeting about preparing for a 9.0+ #subduction zone #earthquake hitting the #PNW. Power co, water co, etc all gave useful advice.
People keep shouting that if disabled people can’t cook or clean they should be institutionalized. Apparently accommodating us so we can live independent lives is angering others. Setting aside how awful many care homes are - do you realize there aren’t nearly enough beds?
I get that many ppl seem to want to completely disappear us from society. Seem to think we would be “better off” institutionalized even though many homes are dangerous places for disabled ppl. Even IF they were all sunshine & lollipops …do you think there’s enough of them?
Do you think they accept people of all disabilities? This idea that we should all have families or full time caregivers to support us is nonsense. It’s unrealistic and in many cases unnecessary. Many of us can & do learn to adapt on our own with part time help where available
The reality is we don’t have enough long term care beds to support everyone who’s chronically ill. Many places won’t take you until you’re a certain age. Many deny if you’re too unstable or don’t have rehabilitation goals. I know. I tried to find one & was repeatedly denied.
Stop assuming there’s some society wide program that places disabled people in homes that suit their unique circumstances. Many congregate settings are vectors for disease and neglect. We have to beg for access to places that often make us worse & reduce our quality of life
When you’re tempted to shout that we belong in a home - consider if it’s where YOU would want to be. Also look around - many countries are rapidly expanding their euthanasia programs to include disabled people with non terminal illnesses. Why do you think that is?
We are seeing rising disability numbers due to Covid - and the sad fact is we didn’t have enough supports for disabled people before the pandemic. We certainly can’t support the influx that’s currently occurring. So we are offering DEATH instead. Dead people cost less money.
I know folks are stuck in denial. They don’t want to accept the society wide risk associated with unmitigated COVID spread. But we are begging you to try. Try and think critically about WHY governments are expanding euthanasia programs.
Believe us when we tell you the dire lack of support available. We aren’t shouting about this because we want sympathy or enjoy complaining - we’re shouting because we can see the writing on the wall. We know our systems can’t support this much disability & people will suffer 1/2
Back in 2010 I founded the #NonProfit@freetechproject which I still work for and thankfully enables me to #WFH#CovidCautious while caring for my partner who has #LongCovid -- facilitating #OnlineLearning via relaxed, fun and friendly video meetups with predominantly older people that have remained our only method of delivery since 2020. The organisation is seeking to add to its board of directors and it'd be great to have interest from UK folks passionate about increasing online engagement and tackling social isolation, as well as #EthicalTechnology#FOSS#fundraising#PublicHealth and, yes, the fact #CovidIsNotOver. Please spread the word, and/or get in touch if you're interested! Thanks! @onepict@privacydingus@kathimmel@crowgirl
My #CovidIsNotOver table at the Association for the Rhetoric of Science, Technology, and Medicine (ARSTM) at the Rhetoric Society (RSA)! Art by @JoBlakely and @violetblue ; zines by @hnewlevant ; flyers by @phpledge and bit.ly/lesscovid. Thanks to everyone for the suggestions on how to make it engaging--it's been lovely to meet other #CovidCautious people and create some visibility around #disability and #COVID .
The existence of the term "con crud" really should have been a greater indicator of how spaces are constructed and managed to exacerbate or mitigate the spread of illness.
Boston peeps: There will be a #COVID-safe (masked, vaccination required, no COVID symptoms) screening of "Spider-Man: Across the Spider-Verse" at West Newton Cinema at 10am on Sunday, July 2. You need to reserve and pay in advance. DM me your email if you want to attend and I'll send you details. @universalhub#CovidCautious#Boston#BostonMA#movies#SpiderMan#Newton#NewtonMA
I went to buy groceries today and I did something different than I've done in the past.
Normally, when I'm wearing my mask (usually a Flo Mask), I keep my eyes down. I unconsciously make myself small to avoid conflict. I've done this for a while now and I think it's the wrong attitude for me to take.
So today I SWAGGERED my way through the aisles, chin held high, assured in the fact that I'm a fucking BOSS. I felt confident and I looked confident, as I should be.
Wearing a mask is sexy. Wearing a mask shows people you are a critical thinker and that you don't give a fuck what other's think. Wearing a mask is badass.
#Boston peeps: I am currently trying to figure out if we can get together enough #CovidCautious people who want to see "Spider-Man: Across the Spider-Verse" to make it affordable (about the same per person as tickets) to rent a theater at West Newton Cinema for a private masked showing. If you are interested please message me with how many people. Thanks! @universalhub can you boost for me? #COVID#CovidConscious#SpiderMan
#VoicesOfSolaria is a voice-oriented #cripplepunk / #solarpunk Discord server for those who are still looking to protect one another from airborne infections.
“Congrats - you’re old! Maybe this year you will try and be normal again.”
This was a birthday message I received from a relative. They’re referring to my disabilities and to my Covid caution. They consider both “abnormal”.
I’m sick & tired of the insinuation that being disabled means we’re abnormal. That we simply need to “try harder” and we will no longer be sick - or that our illnesses are a personal failing. Temporarily abled people always seem to think it’s OUR fault we are sick.
This assumption stems from people being unable to comprehend that certain illnesses can be permanent but not fatal.
People tend to see illness as two pronged - you get sick and die or you get sick and recover. They don't understand the spectrum that lies in between.
As a result if you become chronically ill - people may be supportive at first but that support wanes when you don't get better. They assume if you're not improving and you haven't died that you're either faking, not really "that sick" or that you don't want to get well.
It's incredibly hurtful considering most chronically ill people spend the vast majority of their energy trying to be well. We do so much to try and retain or improve our baseline - but most of it is stuff others will never see. Compromise & sacrifice are daily occurrences.
The reality is that you can't "try harder" your way out of chronic illness. If you could no one would be sick. We try very hard - but our bodies aren’t well. Just because something doesn't kill you doesn't mean it won't debilitate you and rob you of your quality of life.
I know that's unpleasant for many people to think about - but looking away & refusing to acknowledge our reality doesn't change our situation. It just hurts us and lets you remain in denial. As for faking? Most people are trying to fake being WELL.
Putting on a happy face to make others more comfortable. There's no benefit to faking disabilities. It's a hard life with very little support & many cruel comments like the one I received.
Finally let's consider the word "normal". This person was referring in part to my illnesses (as they see them as an abnormality) and in part to my COVID caution which they see as nonsensical & unnecessary.
Disabled & chronically ill individuals are not abnormal. Health does not equal normalcy.
Health is a temporary state for everyone - not a bar to measure one's worth or commonality with others. It's discriminatory, ableist and cruel to suggest we are somehow abnormal.
As for the Covid caution - I look around at what we are doing and can't understand how anyone could think it abnormal that I'm trying to avoid catching (and spreading) this virus. When did it become "normal" to catch bugs all the time?
When did we decide it was "normal" to throw away our health, the health of the elderly, vulnerable and children? When did we stop caring for other people? We have become a society that looks down on people trying to protect themselves & others. That's ANYTHING but normal.
I don't think anything about the way society at large is responding to covid is “normal" but if it IS? I don't want any part of it. I'm proud to be someone who still cares about what's left of my health. Who cares about the health of others & breaking chains of transmission 1/2
An open call for submissions!
We are compiling a zine/collection of works of art.
Working title: "Testimonials of the collectively abandoned"
Our main theme is the isolation that comes from being #CovidAware and #CovidCautious in a world that has decided to abandon anyone who does not consent to infection.
We need our voices heard. We want to hear your voices and experiences.
The impact of neoliberal, hyper-individualistic thinking when "designing" "public health" policies is not abstract. It has very real impact on our lives, and we believe it needs to be documented.
We invite you to share your short stories/anecdotes soundscapes, paintings etc about the topic.
Anonymous or pseudonymous contributions are welcome. you can add a link/information on how to support your work, as well as how you want your work to be credited, or if you want it to be CC0 for example.
Send submissions to:
lettertoourcomrades [at] proton [.] me
Hey my fellow #covidCautious folks! I just found a website, www.covidmeetups.com, which is "a free service to find individuals, families and local businesses/services who take COVID precautions in your area."
It's a very basic website run as a public service and I'm not sure how many people use it (front page says ~13k members, but across 75 countries), but I have found a local dentist listed in the business directory there that offers covid-cautious, masks-required, no-overlapping-appointments once a week and last night I messaged ~8 people who are within a 20 mile radius of me who are taking similar precautions and seem potentially relatable.
For the personal side, you can indicate your level of covid precautions, if you have children and are looking for playdates, are just looking for friends, looking to date, etc.
#WashingtonDC knowers: seeking tips for a ~weeklong adults-only trip late June.
What not to miss (“Used Tissue Museum is amazing!”), what /to/ miss (“Postage Stamp Gallery overrated”), what /not/ to do (“avoid Metro on Tuesdays, when it's usually on fire”), etc.
Current plan: hotel in Dupont Circle, metro-or-drive as needed (eg: metro to Mall, drive to Udvar-Hazy).
A relative mocks me at Thanksgiving about being #CovidCautious: "I actually did the math. You're 100,000 times more likely to be injured riding a #motorcycle than to get #LongCOVID."
In fact, <1% of riders are injured each year, including the majority of accidents which involve drunk driving or unsafe speeds, neither of which I do.
In contrast, >6% (at least) and growing of the US population has Long #COVID.
But sure, she "did the math." #smdh
Awhile back I went to a specialist for unexplained & painful lower leg swelling. His diagnosis?
“Maybe your legs are just getting fat.”
Horrified…I asked how many people gain weight ONLY in their calves. He shrugged me off. A 🧵 on knowing your body & advocating for care
This doctor did NO tests before deciding it was weight gain. Wouldn’t discuss it with me further & wouldn’t permit me a second opinion. I went home completely dejected and also worried because I KNEW something was wrong.
For the next few days I elevated my legs as much as possible and tried to gently massage them to see if it helped. They just kept getting bigger. Eventually they started weeping (fluid was seeping out of my skin) and my ankles were dislocating from the pressure.
So I went to the ER. I was actually nervous about going because I could only imagine what that doctor had put in my chart. Thankfully I had a doctor who took the swelling very seriously and ordered a wide range of tests (and immediately put me on bed rest to protect my ankles)
Turns out it was a combination of third spacing from my MCAS (when the fluid doesn’t stay in the vascular system & leaks out into the tissues - can be a big issue if you have POTS as well) and low albumin. Dangerously low albumin.
Needless to say I was suffering from malnutrition due to my extensive GI issues and that was causing the swelling. It most definitely wasn’t weight gain. I was underweight with the exception of my legs.
I never knew that low albumin could cause painful swelling like that - nor did I even think that I was suffering from malnutrition. But with both POTS & MCAS it makes sense.
Our digestive systems are controlled by the autonomic nervous system (the system malfunctioning when you have POTS) so it’s not uncommon to experience vomiting, diarrhea & other gastric complaints.
MCAS only compounds the issue by limiting the foods you can tolerate and also causing vomiting and diarrhea. The two conditions make getting adequate nutrition a challenge - especially if you’re on the severe end of the spectrum
I’m very grateful to the doctor who figured it out and helped me get homecare so I could get proper nutrition & stay off my feet while the swelling was at its worst. But it took a LOT of courage to go to the ER after being so rudely dismissed.
This is a lesson in the importance of knowing your own body & having an advocate with you whenever possible. I KNEW something serious was wrong but I had no one with me to challenge the first dismissive doctor. And he was completely unwilling to listen to me.
Don’t ever feel like you can’t get a second opinion or go to a different hospital if you feel you aren’t being taken seriously. And don’t ever apologize for advocating for your health. If you don’t have someone who can go with you - try & phone or video a friend.
Lastly can we please start listening more to patients? We know our bodies best and when you dismiss us it causes not only physical damage - but emotional damage too. You make it harder for us to seek care in the future.
Patients shouldn’t be dismissed without any tests being run. Had I not gone to the ER I could have ended up with life threatening cardiac issues from the electrolyte & fluid imbalance. A simple lab test would have confirmed the diagnosis had the first doctor cared to do them.
This experience was also an excellent reminder of the far reaching effects of dysautonomia & MCAS. It’s important to be as educated as possible in these conditions & the strange downstream complications they can cause.
And remember dismissal & gaslighting is often far worse for marginalized individuals. There’s a LOT of bias in medicine. If you’re someone in a position of privilege please call it out when you see it - and offer to be an ally to those who need support. Allies save lives
Voices of Solaria is a voice-oriented #cripplepunk / #solarpunk Discord server for those who are still looking to protect one another from airborne infections.
We know 4 tests per household is a shamefully low allotment, but everyone should still get theirs. It proves we still care that covid remains a concern and a threat and that we demand more and better official support and protection to survive it.
Even if you can afford to purchase tests yourself, you can share them to larger families and households, as well as give them to free pantries or directly to your unhoused neighbors.
And remember to check ALL rapid tests you acquire against the FDA extended shelf life list! Don't risk throwing away unexpired kits!
And remember to check ALL rapid tests you acquire against the FDA extended shelf life list! (Also on our Linktree for easy locating.)
Looks like my area will be back to dangerously unhealthy air quality levels tomorrow because of the #wildfires in Canada. The air is already getting hazy again. Sigh.
I'm weirdly grateful that being #CovidCautious has prepared me for this because I have N95 masks and air filters, but I also worry about those who aren't as privileged. I also think it's appalling how obvious the need for both #ClimateChange action and improved ventilation are, yet we seem to be sliding backwards on these issues instead of addressing them with the urgency we need.
Anyway, I hope everyone is staying safe, and #WearAMask!
Any Covid cautious people have any tips or warnings about flying? I have to fly for the first time since this started and am nervous about it. I know most people won’t be masked, that I should wear an n95 or better, I’ll have to lower it at security, to never remove it otherwise, but wondering about things like running the air on the plane. Is it better to keep it off or on? Any other suggestions appreciated. #Covid#Covid19#CovidIsNotOver#COVIDcautious