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.
@seawall BSDCan have a mask mandate with no exceptions other than necessary ones (e.g. speakers and when eating or drinking). This does mean though that anyone who can’t wear a mask (as opposed to not wanting to) are excluded.
"A blueprint for radical inclusion and living a full, safer life within the context of Covid-19 exists.
Many mutual aid groups and initiatives advocating for clean air and continued Covid-19 safety are emerging all over the world using technology and layers of protection to help mitigate the spread of viruses."
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 .
Often the worst part of being #covidcautious is when plans go wrong. Was planning drinks with friends, insisted on outdoor seating, all good to go… then the bar was shut. Immediately, discussion moves to indoor only place. And I’m going home. 🙁
Judge me if you want, but after five years of being tossed aside by most of the people we thought of as friends, of being forgotten and limited and thought of as the crazy ones about #Covid, we are entitled to some Schadenfreude. I have not a single fuck left to give for people who won’t mask.
Fellow people who are still genuinely #CovidCautious, particularly those who are also single, live alone, and have basically lost your entire (already small) social circle over the last few years because no one else is taking any precautions anymore (...just me?).....: How are you keeping life worth living these days? I must admit I'm struggling.
A brief run-down of my standard practice for #COVIDcautious hairdresser housecalls etc.
The client and I both take RATs the morning of the appointment. I wear a mask, I recommend the client does too (although can be tricky with sideshaves et al), and ideally we work in a room where there's windows that open for ventilation.
On nice days I've cut hair on people's decks, wind permitting. 😂
I also have my CO2 monitor, and I am considering saving up for another #HEPA filter that I can bring +
#CovidCautious community, I’m tabling at an academic conference next month to spread awareness of both the Public Health Pledge (@phpledge) and #COVID19 precautions as paths toward inclusivity, and I’m trying to think of what would make this table both useful and appealing to passersby. Does anyone have suggestions on what else I can do, in terms of signage, giveaways, activities, etc.?
I’m currently planning to include printed copies of Hazel Newlevant’s 2024 COVID-19 zine (https://newlevant.com/COVIDzine) as well as materials on reducing transmission from https://bit.ly/lesscovid, but I know that good information alone will be not be enough to draw people in.
@ubikaritas
Thinking about the inclusion message - maybe you can prompt people to reflect on how many of their students
are immunocompromised or at higher risk bc of other conditions
live with/are in community with people who are at higher risk
already have Long COVID
can't afford to take time off work if/when they get sick
Sadly I'm not aware of a convenient interactive tool where you could look that up by metro area or institution or anything....
“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
I don't want to ever lose that empathy and compassion. High risk activities and unwillingness to mask aren't worth your health. They aren't worth potentially killing or disabling someone else.
I don't consider taking Covid precautions to be extreme - I consider it to be sensible and kind. If more people were doing it we would be in a much better place right now.
Unfortunately the world wants to go back to "normal" - even if that normal doesn't really exist.
I don't know how to get through to people like this relative. I've been trying for four years and most people are still sticking their heads in the sand. Most people are actively ignoring the threat & shunning people like me in the process.
So please - don't tell someone they need to try harder to be "normal". If you're someone who still can't understand the concept of disability and chronic illness? And you're refusing to take ANY Covid precautions? Think about whether that's a sensible approach.
If you can't understand how difficult it is to be chronically ill, if you can't comprehend a situation where you may become sick and never recover... You should be trying to avoid Covid. Because Long Covid is severe, debilitating and currently has no cure.
If you genuinely believe those of us who are chronically ill are simply not trying hard enough - you don’t truly understand what you’re risking. If you end up like us you will learn quickly that we’re telling the truth. We’re sick day in & day out with next to no support.
As always please remember everyone's life has value regardless of their health status. We all matter, we all love & contribute to this world in our own way. Care about the air we share & help us fight for a safer, more inclusive society. We will all be better off. 2/2
"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. "
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
I was about to place bets this was another 6 months off but I guess people are becoming disabled at alarming rates now. And about a thousand a week are still dying here in the US from the virus.
#CovidCautious#VictoriaBC group is hosting a #CovidSafe hangout at #VicWest Park (by the playground), on April 13, from 2pm-4pm.
Look for the folks wearing masks.
I'm swinging by there, after my para-dragonboating practice.
@willaful Aranet is probably the best, Vitalight is probably the cheapest. There are a few others that are decent. Definitely get one with an NDIR sensor.