Today marks the five year anniversary of Covid being declared a pandemic. Some things I want people to remember:

The threat is not gone. People are still dying and becoming disabled every single day

COVID is airborne. It’s always been airborne. Droplet transmission was pushed incorrectly & then doubled down on for economic reasons. If governments admit it’s airborne, they have to spend money upgrading air quality and providing respirators etc.

The only way to avoid Long Covid is to not get Covid.

A well fitted respirator like an N95 offers excellent personal protection

Mask mandates belong in healthcare

If you’re not masking for your patient, you’re abdicating your responsibility to do no harm

It costs nothing to open a window and it will improve ventilation and reduce odds of viral spread. Air purifiers work well too

COVID is a social justice issue. Masks, tests, air filters, paid time off… these things all cost money. The disease disproportionately impacts those who are most vulnerable and multiple marginalized

Repeat infections don’t make you stronger. They don’t give you immunity. They actually harm your brain, heart and immune system. They’re also NOT inevitable

Kids are harmed by COVID too. They need the adults to protect them. We need clean in schools and on school buses

We went “back to normal” for capitalism. It wasn’t because it was safe. It wasn’t because there was a cure. Governments and those in power Are willing to sacrifice us to keep end stage capitalism afloat a little longer

Repeat infections are NOT inevitable. We can still curb the spread. We don’t have to accept constant sickness and disability as our new normal.

May we be in a much better place five years from now than we are today.

If you know someone suffering from Long Covid, reach out to them. Ask them how you can support them. Remind them they’ve not been forgotten. Wear a mask for them. They are counting on you.

#covidisairborne #covidisnotover #sarscov2 #longcovid #chronicillness #pandemic #longcovidawarenessweek

Watching people say about overt fascism "but that's illegal!" gives me such strong flashbacks to the billion times that disabled people talking about the patterns of discrimination we face have been met with similar shock and disbelief: surely "they" can't deny you jobs or an education or information in accessible formats, "that's illegal!"

The sooner you get past the shock, the sooner you can get to more useful reactions. Listening to your disabled comrades will make you harder to shock.

I love the #videos people share on #mastodon, and I love the fact that they're frequently not just links to #youtube .

I do not love
- No time indication in the web app (am I in for 30 seconds or 30 minutes?)
- No captions
- Posting vague titles like "Wow!" to a video of people talking

I'm hearing disabled so I skip about 95% of the videos I see posted without captions or a description of what's in the video. I know #alttext for videos is probably a ridiculous concept (done by individuals, by hand, anyway), but a brief summary of content or even a solid hint would help; at least I'd have an idea of whether it was worth finding headphones or earbuds, pairing them with the laptop or phone, and investing in that whole process. Without any info, it's rarely worth the effort.

#disability #hearingdisability

The early days of the pandemic were scary for everyone - but for many disabled people there were also rays of hope.

We saw the world become more inclusive seemingly overnight. Things we had spent years begging for - like telemedicine and remote work options - became possible. We made it easier for those who are housebound to access the services they need. We checked on our neighbours. We worked together to protect one another. We stopped vilifying and gaslighting housebound people like me - because suddenly EVERYONE was housebound.

I also had hope that we were finally going to make real progress on chronic illness. That Long Covid would be “too big to ignore.”

That we would start being proactive with our health and work towards keeping people healthy and really HELPING those who were chronically ill.

I genuinely still can’t believe that 400 million people are suffering from Long Covid. The numbers are growing every day and yet we do nothing to stop it (and very little to treat it).

No progress has been made on the comorbids either. I had POTS and MCAS before covid - and my treatments haven’t improved at all. In fact it’s harder to access the medical care I need because specialists treating these conditions are so overwhelmed by the rapid influx of new patients with Long Covid.

I have empathy for those who believed they would be the exception. Who thought that IF they were unlucky enough to be disabled by Covid - help would be there for them. Even though it’s never been there for the rest of us.

All these people are going through a very rude awakening right now - they’re being forced to confront the reality that patients like me have been dealing with for years.

No one is coming to save us. Our “sick” is permanent. No one is the exception.

Just like I have to deal with the pain of having the hope of a more inclusive and caring society ripped away - these newly disabled people have to deal with the pain of realizing they are in fact disabled. That they were lied to when they were told they didn’t have to worry. That they aren’t getting better.

It’s a hard adjustment - one that I hope The Disabled Ginger can help with.

In the meantime the best thing we can do for our own health and the health of those around us is prevent the spread of Covid. Wear a mask. Clean the air. Test and isolate when sick. Get vaccinated. Don’t take your health for granted.

Even if YOU don’t think you’re high risk - it’s an airborne virus. You could pass your “mild” case to someone like me who ends up further disabled or dead.

We can do this - but we have to work together. “You do you” isn’t working. We have to remember what it felt like during those first few months of 2020 when we tried to work as a collective whole. Where we protected the vulnerable, took the virus seriously and made society more accessible and inclusive.

We can do it again. We just have to decide to try.

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans

I asked for feedback from healthcare workers who mask (or don’t mask) in preparation for an article I’m doing about masks in healthcare.

I asked them to tell me WHY they mask or conversely - why they don’t.

I had a number of great responses - various healthcare workers who said they mask to protect themselves, their communities and their patients. They mask so the patients don’t feel unsafe. They mask so the patients don’t have to ask. Some were even masking because they too had Long Covid and couldn’t risk reinfection.

Then there were the ones who said they didn’t mask. I had about 80% “don’t mask” and 20% “do mask”… but algos tend to favour division so it may be a bit skewed.

The reasons for not masking were what you expect:

😤 I don’t have to
😤 They don’t work
😤 They’re uncomfortable
😤 I’m not high risk
😤 COVID isn’t a threat anymore

Very few of the non maskers spoke of anything except their own feelings and viewpoints/risk factors. The patients didn’t seem to factor in at all.

But the one that knocked the wind out of me - the one that felt like a direct punch in the gut - came from an ONCOLOGIST (who gave me permission to share)

“I don’t mask because it is very inconvenient, in fact I hate it. I’m not afraid of any viral illness I can contract. If my patients want, they can wear N95 permanently. That’s all.”

This man spends ALL day with immune compromised people. With those who literally have had their entire immune systems wiped out by chemotherapy. Those who are already fighting for their lives. Yet HE wasn’t worried. How comforting.

I will admit I’m extra sensitive about this because three weeks ago I lost a friend and fierce advocate for masks in healthcare. She had cancer and Long Covid and caught Covid again while getting her chemotherapy. None of the staff would mask.

I just don’t get it. First of all - it’s cruel to assume that all cancer patients can “mask permanently”. Many need oxygen, trachs, feeding tubes etc. Some have oral or facial cancer which would prevent masking. Chemo and radiation can cause painful mouth ulcers and sore throats - patients are routinely given ice chips and popsicles. You can’t have those if you’re wearing a mask.

The bigger question I have is - if you care so little about your patients that you’re perfectly fine giving them a virus that may very well kill them… why are you treating the cancer? Why are you practicing medicine at all? Why are you going to such lengths to save a life when you’re going to turn around and put it in jeopardy.

I simply don’t get it. I asked him these questions and never got an answer. I was coldly told the patients could wear three masks if they wanted but he never would again.

I’m working on Part 1 in a three part series on masks in healthcare - so for now I will simply say this.

You CHOSE to be a doctor. Your patients didn’t choose to get sick. They would rather be anywhere than in the hospital. They’re weak, scared and have put their lives in your hands. Be better than this guy. Wear a mask. Respect the huge responsibility you’ve been entrusted with.

I hope to have Part One published within the next two days - it’ll be online at https://www.disabledginger.com/

#keepmasksinhealthcare #CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans

Maskless healthcare workers - would you be willing to tell me WHY you don’t mask?

I’m not looking for “because I don’t have to”. I want to know why you don’t mask mirror for patients and/or CHOOSE to take precautions?

Respectful answers only please. I’m genuinely asking.

I’m working on an article about this and I feel I’ve got a good grasp on the “why” for those who DO mask - but I genuinely don’t understand those who refuse.

You’re in a profession where people pit your lives in their hands - it seems nonsensical to put them at risk. You KNOW you’re dealing with the most vulnerable among us - yet opt not to protect them.

A mask won’t harm you in any way - so what reason is there NOT to do it?

I would appreciate boosts for visibility - and there may not be many maskless HCWs on here so I also invite people to share stories of times their HCW refused to mask for them (and why - if you know).

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans

Driving Under the Cognitive Influence of COVID-19: Exploring the Impact of Acute SARS-CoV-2 Infection on Road Safety.

"The study suggests that acute COVID-19, regardless of Long COVID status, is linked to an increased risk of car crashes presumably due to neurologic changes caused by SARS-CoV-2"

Source: https://www.neurology.org/doi/10.1212/01.wnl.0001051276.37012.c2

@auscovid19

At ER with a POTS flare - heart rate is 180 at triage.

Nurse: “Are you fighting with your boyfriend sweetie?”

Me (somewhat indignant) “I don’t have a boyfriend. I have POTS.”

Doctor: “Single? At your age? How come? You don’t want to be married?”

This is misogyny in medicine. I had a cardiac issue which is clearly documented in my chart/medical history.

I showed up alone - having been brought in by paramedics after fainting from low blood pressure and high heart rate.

There was absolutely no reason to make it about my marital status, boyfriend or lack thereof.

Can you imagine if a man showed up at the ER after passing out and his heart rate was 180? Do you think for a second they would ask if he was fighting with his girlfriend?

It’s a rhetorical question - since studies have shown that men are treated faster and more seriously in healthcare settings.

POTS is particularly challenging because it can make a patient appear anxious. It causes high heart rate, shortness of breath, sweating and dizziness. It’s all too easy for healthcare workers to see those symptoms and psychologize the patient.

That was my reality for YEARS. Going to the ER because I had passed out somewhere - and being treated as though I was simply hysterical. Given IV fluids to placate me but never referred to cardiology and properly worked up.

Even once I finally received a diagnosis (more than a decade later) I would continue to encounter hurdles like the one described above.

We must do better. Patients deserve to have their issues taken seriously and their health protected. If you don’t know what’s wrong - admit it. Refer them to someone else. Don’t slap an “anxiety” label on them and send them on their way.

The amount of times I was either gaslit, misdiagnosed or mistreated in healthcare settings is a huge part of why I decided to start advocating. I want to raise awareness about the conditions I have so that patients might better recognize the symptoms within themselves.

I also want to try and change the culture of medicine. The default should be to believe patients. To protect them. To wear a mask around them during an airborne pandemic. It should NOT be to pry into their personal life, psychologize and dismiss them.

Now that I know and understand what’s wrong - I live my life upside down! Almost all my writing is done horizontally and/or with my legs up the wall - because it’s the only way I get enough blood flow to my brain.

POTS can be incredibly debilitating - but there is hope. Treatments and lifestyle modifications CAN help.

I’ve just finished part one of a three part guide into all things POTS/Dysautonomia. It’s my hope these articles will help patients lean into their condition, adapt and accommodate it so that they will suffer less than I did.

https://www.disabledginger.com/p/living-life-upside-down-an-intro

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells #DysautonomiaAwarenessMonth

I called EMS once and police showed up before paramedics (paramedics were busy).

The first thing they said? “You don’t look sick.”

They waited for paramedics who took me to hospital - but that initial response stuck with me.

It’s why mask bans are dangerous. Police aren’t trained to make medical decisions. They shouldn’t be the ones deciding who can and can’t legally wear a mask.

Many illnesses are invisible - you wouldn’t KNOW we’re disabled to look at us.

Most of us have experienced gaslighting from friends, family and even doctors - people are quick to judge and decide you’re “not that sick.”

So are we really expected to risk criminal charges by wearing a respirator & just HOPE police will believe we truly “need it”?

Not to mention that medical exemptions leave behind anyone who wants to mask to protect and preserve their health - as well as caregivers and family of disabled people.

We rely on them to keep us safe - we NEED them masking in public.

I sincerely hope more people join the fight against mask bans soon - because if we don’t fight against them - more cities and states will pass them and more people will suffer.

A good respirator is excellent protection against covid & other illnesses.

We shouldn’t be further excluding disabled and high risk people from public - but that’s exactly what these ugly laws do.

Call your elected officials - tell them medical masks can not and should not be banned.

Don’t embrace escalating fascism and eugenics just because you don’t think it will impact you.

Don’t celebrate it because you hold a grudge about mask mandates.

It won’t stop with disabled people. Help us now & your future self will thank you.

My full article on mask bans, medical exemptions and how we’re witnessing (and even welcoming) escalating eugenics and fascism: https://www.disabledginger.com/p/we-are-witnessing-real-time-eugenics

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #bullying #CleanAirClassrooms #UglyLaws