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🇦🇺AUSTRALIA weekly COVID update: 10 January 2025
#COVID19Australia #COVIDisntOVER #COVIDisAIRBORNE @auscovid19
#COVID19Australia #COVIDisntOVER #COVIDisAIRBORNE @auscovid19
I will never understand why more people aren’t angry and radicalized by the events of the last five years.
The anti mask, anti-vaxx crowd are angry… but they’re also terribly misinformed and on the wrong side of history.
Those of us with disabilities are livid … but we aren’t heard. We’re treated as even more invisible now than we were five years ago. An unwelcome reminder of Covid and the frail nature of the human condition.
But what about everyone else? The anti mask crowd may be the loudest, but they’re far from the majority.
Why aren’t the rest of you angry? Why are so many people content to accept and normalize mass death and disability?
An article came out in PBS today that puts the total COVID deaths at over 20 million.
20 million people. Those are fathers, mothers, spouses, grandparents, siblings and children. Each number represents a loved one to someone else.
Where’s the outcry?
400 million are dealing with Long Covid. That’s an obscene amount of people whose lives are forever changed. Who may never again know what it’s like to be healthy or exist in a body that isn’t rife with suffering.
Where’s the rage?
We know how to prevent covid. We’ve known for years. Yet rather than adapting our lifestyle and being humble in the face of a novel virus - we’ve given it the reins.
We’ve conceded defeat before we even put up a fight. Accepted repeat infections as inevitable. Shrugged our shoulders as we report more and more deaths. Aggressively minimized and disappeared those with Long Covid.
This should make you angry. It doesn’t need to be this way.
What would success look like? What would fighting back entail?
🫶Mandatory masking in all healthcare facilities (with respirators)
🫶Free tests and vaccines for everyone
🫶Better funding of anti virals and other treatments
🫶Clean air in all public spaces with transparent data visible to the public
🫶Clean air on school busses and anywhere that children congregate
🫶Paid time off for everyone who’s sick
🫶Free respirators in public places AND freely available to anyone who can’t afford precautions
🫶A robust public health campaign about how to properly wear a respirator
🫶A brutally honest public health campaign about the dangers of COVID. We have to stop treating it like a respiratory virus and make the public aware that it’s a multi system vascular virus with immune damaging capabilities
Doing even a few of those things would make a huge difference. Doing all of them would end the pandemic.
Get angry. Get loud. Demand better. Demand transparency.
Say that 20 million dead is not “mild”. That 900 dying every week in the U.S. is not “over”. That 400 million disabled will NOT be ignored.
#covidisairborne #covidisnotover #sarscov2 #longcovid #pandemic #cleanair #wearamask #disability #ableism #eugenics
The anti mask, anti-vaxx crowd are angry… but they’re also terribly misinformed and on the wrong side of history.
Those of us with disabilities are livid … but we aren’t heard. We’re treated as even more invisible now than we were five years ago. An unwelcome reminder of Covid and the frail nature of the human condition.
But what about everyone else? The anti mask crowd may be the loudest, but they’re far from the majority.
Why aren’t the rest of you angry? Why are so many people content to accept and normalize mass death and disability?
An article came out in PBS today that puts the total COVID deaths at over 20 million.
20 million people. Those are fathers, mothers, spouses, grandparents, siblings and children. Each number represents a loved one to someone else.
Where’s the outcry?
400 million are dealing with Long Covid. That’s an obscene amount of people whose lives are forever changed. Who may never again know what it’s like to be healthy or exist in a body that isn’t rife with suffering.
Where’s the rage?
We know how to prevent covid. We’ve known for years. Yet rather than adapting our lifestyle and being humble in the face of a novel virus - we’ve given it the reins.
We’ve conceded defeat before we even put up a fight. Accepted repeat infections as inevitable. Shrugged our shoulders as we report more and more deaths. Aggressively minimized and disappeared those with Long Covid.
This should make you angry. It doesn’t need to be this way.
What would success look like? What would fighting back entail?
🫶Mandatory masking in all healthcare facilities (with respirators)
🫶Free tests and vaccines for everyone
🫶Better funding of anti virals and other treatments
🫶Clean air in all public spaces with transparent data visible to the public
🫶Clean air on school busses and anywhere that children congregate
🫶Paid time off for everyone who’s sick
🫶Free respirators in public places AND freely available to anyone who can’t afford precautions
🫶A robust public health campaign about how to properly wear a respirator
🫶A brutally honest public health campaign about the dangers of COVID. We have to stop treating it like a respiratory virus and make the public aware that it’s a multi system vascular virus with immune damaging capabilities
Doing even a few of those things would make a huge difference. Doing all of them would end the pandemic.
Get angry. Get loud. Demand better. Demand transparency.
Say that 20 million dead is not “mild”. That 900 dying every week in the U.S. is not “over”. That 400 million disabled will NOT be ignored.
#covidisairborne #covidisnotover #sarscov2 #longcovid #pandemic #cleanair #wearamask #disability #ableism #eugenics
Thank you NYC for setting such a great example of public health messaging!
Respirators protect you from all kinds of airborne viruses - including Covid.
If you can’t afford one - check for a mask bloc in your area.
Make 2025 the year you up your mask game!
#maskup #CovidIsNotOver #covidisairborne #longcovid #publichealth
Respirators protect you from all kinds of airborne viruses - including Covid.
If you can’t afford one - check for a mask bloc in your area.
Make 2025 the year you up your mask game!
#maskup #CovidIsNotOver #covidisairborne #longcovid #publichealth
Today in “Samuel Pepys’ Diary reimagined”:
“Not even in doctors’ surgeries and hospitals masks are mandatory anymore. Meanwhile, patients keep dying of hospital-acquired illnesses, including pneumonia and other airborne infections.”
https://babumenos.com/SPDR/#a2024-12-28
#MaskUp #WearAMask #COVIDisAirborne #COVID19 #SARSCoV2 #HAI
“Not even in doctors’ surgeries and hospitals masks are mandatory anymore. Meanwhile, patients keep dying of hospital-acquired illnesses, including pneumonia and other airborne infections.”
https://babumenos.com/SPDR/#a2024-12-28
#MaskUp #WearAMask #COVIDisAirborne #COVID19 #SARSCoV2 #HAI
Samuel Pepys’ Diary Reimagined
A contemporary diary of current every-day events large and small, inspired by the work of 17th century writer and politician Samuel Pepys.babumenos.com
🇦🇺AUSTRALIA weekly COVID update: 27 December 2024
#COVID19Australia #COVIDisntOVER #COVIDisAIRBORNE @auscovid19
#COVID19Australia #COVIDisntOVER #COVIDisAIRBORNE @auscovid19
If you spent the holiday traveling, socializing etc with zero covid mitigations… You probably don’t have food poisoning. Or jet lag. Or allergies.
Covid is surging. RSV is too.
For the sake of everyone else - please stay home. If you can’t - wear a respirator.
Some of us spent our holidays alone. Isolated because no one will take precautions
Many of us have necessary hospital appointments and/or in person needs in the New Year
We don’t deserve to be infected because you took risks & then deluded yourself into believing you were “fine”.
Wear the mask.
#covidisairborne #covidisnotover #longcovid #sarscov2 #ableism #disability #wearamask
Covid is surging. RSV is too.
For the sake of everyone else - please stay home. If you can’t - wear a respirator.
Some of us spent our holidays alone. Isolated because no one will take precautions
Many of us have necessary hospital appointments and/or in person needs in the New Year
We don’t deserve to be infected because you took risks & then deluded yourself into believing you were “fine”.
Wear the mask.
#covidisairborne #covidisnotover #longcovid #sarscov2 #ableism #disability #wearamask
Today I heard the most disconnected justification for not masking
Someone told me their dad refused to mask because he wanted to “live his life fully”. He caught covid & died
This person genuinely seemed to believe that her Dad lived more fully than people who mask…because he died living the way HE wanted
Given they’re likely experiencing grief - I pushed back as gently as possible. I explained that you can do almost all activities while wearing a respirator - but you can’t live life if you’re dead.
There was zero recognition of the point I was trying to make. They stood their ground.
I don’t know how we reach people like that. They’re so entrenched in their beliefs that even losing a close family member wont shake their denial.
Because it’s an airborne virus - his choice likely harmed others.
Thats the reason I keep advocating. Your “freedom” to risk your health stops when it puts the lives of others at risk.
Perhaps you’re genuinely ok losing your life just to avoid wearing a mask - but don’t presume to make that decision for other people.
Masking is kindness. It saves lives.
#covidisairborne #CovidIsNotOver #sarscov2 #longcovid #wearamask #maskswork
Someone told me their dad refused to mask because he wanted to “live his life fully”. He caught covid & died
This person genuinely seemed to believe that her Dad lived more fully than people who mask…because he died living the way HE wanted
Given they’re likely experiencing grief - I pushed back as gently as possible. I explained that you can do almost all activities while wearing a respirator - but you can’t live life if you’re dead.
There was zero recognition of the point I was trying to make. They stood their ground.
I don’t know how we reach people like that. They’re so entrenched in their beliefs that even losing a close family member wont shake their denial.
Because it’s an airborne virus - his choice likely harmed others.
Thats the reason I keep advocating. Your “freedom” to risk your health stops when it puts the lives of others at risk.
Perhaps you’re genuinely ok losing your life just to avoid wearing a mask - but don’t presume to make that decision for other people.
Masking is kindness. It saves lives.
#covidisairborne #CovidIsNotOver #sarscov2 #longcovid #wearamask #maskswork
New introduction post - joined in Nov 2022 (as many did) and back now after a hiatus. I write about Covid, disability justice, ableism, eugenics, the experience of being chronically ill during a pandemic and life, loss and grief. Looking forward to connecting with people here again! #CovidIsNotOver #COVIDisAirborne #chronicillness #Ableism #DisabilityJustice #WearAMask #MaskUp #CleanAir #DisabilityRights
If you’re dealing with Long Covid - there’s a chance you’re also dealing with MCAS and/or POTS/Dysautonomia.
They’re common comorbids and can have a devastating impact on quality of life.
New allergies? Alcohol intolerance? Dizziness? Fatigue? Fainting? Hives? Neuropathy? GI issues? Unexplained tachycardia or blood pressure swings?
These can all be caused by POTS, MCAS or a combination of both.
Mega thread of resources and guides below:
I was dealing with both of these conditions before the pandemic - and when the first Long Covid cases started popping up I remember thinking “I need to make sure I avoid Covid - it’s already causing POTS and MCAS so it might make mine worse”
I shielded as soon as I was able (and haven’t been unable to stop).
I had hope that given the sheer size of the problem - we would see accelerated research and have better treatments and/or a cure.
Instead we’ve seen an increase in dismissal and psychologizing - with many people reporting it’s HARDER to get a diagnosis now than before the pandemic.
We don’t have anything new to offer patients despite the huge increase in people with these conditions - and the few doctors willing to treat us have wait lists which have tripled in size.
Patients have to wait longer to see a doctor - and get shockingly little time with them.
Basically - we are truly on our own.
As a result patient support groups and message boards are increasingly becoming a lifeline for those newly diagnosed.
I remember how scared and lost I was at the beginning of my chronic illness journey - so I’ve spent the last few months writing guides to help patients dealing with MCAS & POTS.
My hope is they will serve as a resource for the newly diagnosed as well as for people who suspect they may be dealing with these conditions.
You will find explanations of how they impact the body, tips for obtaining diagnosis, treatment options, lifestyle adjustments and more.
I hate having to go searching for something when I’m feeling really sick - so I thought it might be helpful to include everything I’ve written in one mega thread people could bookmark or save.
With that - the guides! (One per post below)
🧵
#longcovid #pots #mcas #dysautonomia #covidisairborne # covidisnotover #sarscov2 #wearamask #MECFS #chronicillness #spoonie #pandemic
They’re common comorbids and can have a devastating impact on quality of life.
New allergies? Alcohol intolerance? Dizziness? Fatigue? Fainting? Hives? Neuropathy? GI issues? Unexplained tachycardia or blood pressure swings?
These can all be caused by POTS, MCAS or a combination of both.
Mega thread of resources and guides below:
I was dealing with both of these conditions before the pandemic - and when the first Long Covid cases started popping up I remember thinking “I need to make sure I avoid Covid - it’s already causing POTS and MCAS so it might make mine worse”
I shielded as soon as I was able (and haven’t been unable to stop).
I had hope that given the sheer size of the problem - we would see accelerated research and have better treatments and/or a cure.
Instead we’ve seen an increase in dismissal and psychologizing - with many people reporting it’s HARDER to get a diagnosis now than before the pandemic.
We don’t have anything new to offer patients despite the huge increase in people with these conditions - and the few doctors willing to treat us have wait lists which have tripled in size.
Patients have to wait longer to see a doctor - and get shockingly little time with them.
Basically - we are truly on our own.
As a result patient support groups and message boards are increasingly becoming a lifeline for those newly diagnosed.
I remember how scared and lost I was at the beginning of my chronic illness journey - so I’ve spent the last few months writing guides to help patients dealing with MCAS & POTS.
My hope is they will serve as a resource for the newly diagnosed as well as for people who suspect they may be dealing with these conditions.
You will find explanations of how they impact the body, tips for obtaining diagnosis, treatment options, lifestyle adjustments and more.
I hate having to go searching for something when I’m feeling really sick - so I thought it might be helpful to include everything I’ve written in one mega thread people could bookmark or save.
With that - the guides! (One per post below)
🧵
#longcovid #pots #mcas #dysautonomia #covidisairborne # covidisnotover #sarscov2 #wearamask #MECFS #chronicillness #spoonie #pandemic
My latest article is about the shooting of CEO Brian Thompson and how NYC Mayor Adams seems poised to use it as an excuse to bring in a ban on masks (which he’s wanted to do for awhile).
Mask bans are discriminatory, ableist and put lives at risk.
We are still IN an airborne pandemic. Everyone - whether disabled or not - should have the legal right to protect themselves from infection.
People need masks for all kinds of reasons. Pollution, wildfire smoke, allergies AND Covid. No one should be forced to risk their health because a necessary medical device has been criminalized for absolutely no reason.
Make no mistake - these bans won’t stop crime. Studies have shown that sunglasses obscure identity more effectively.
The only reason to ban masks is to pander to those on the right still angry about mask mandates - and to make it easier for the government to surveil its citizens.
Ironically those who screamed the loudest about freedom and bodily autonomy during mask mandates are eerily quiet about mask bans - despite the fact that they represent escalating fascism and government overreach.
We really are on our own.
Please - mask up. Do it in solidarity with disabled people who NEED masks in order to safely access public spaces. Do it to support the Covid aware people who just want to avoid infection. Do it to send a message to the government that you don’t believe anyone is expendable. Do it to protect our right to mask in the future.
It’s not too late - but we must get loud, work fast and wear our masks.
https://www.disabledginger.com/p/nyc-mayor-wants-to-ban-masks-in-the
#maskbans #nomaskbans #noNYmaskban #covidisairborne #covidisnotover #sarscov2 #wearamask #respirator #brianthompson #luigimangione #ableism #discrimination #disabilityrights #disabilityjustice #maskup
Mask bans are discriminatory, ableist and put lives at risk.
We are still IN an airborne pandemic. Everyone - whether disabled or not - should have the legal right to protect themselves from infection.
People need masks for all kinds of reasons. Pollution, wildfire smoke, allergies AND Covid. No one should be forced to risk their health because a necessary medical device has been criminalized for absolutely no reason.
Make no mistake - these bans won’t stop crime. Studies have shown that sunglasses obscure identity more effectively.
The only reason to ban masks is to pander to those on the right still angry about mask mandates - and to make it easier for the government to surveil its citizens.
Ironically those who screamed the loudest about freedom and bodily autonomy during mask mandates are eerily quiet about mask bans - despite the fact that they represent escalating fascism and government overreach.
We really are on our own.
Please - mask up. Do it in solidarity with disabled people who NEED masks in order to safely access public spaces. Do it to support the Covid aware people who just want to avoid infection. Do it to send a message to the government that you don’t believe anyone is expendable. Do it to protect our right to mask in the future.
It’s not too late - but we must get loud, work fast and wear our masks.
https://www.disabledginger.com/p/nyc-mayor-wants-to-ban-masks-in-the
#maskbans #nomaskbans #noNYmaskban #covidisairborne #covidisnotover #sarscov2 #wearamask #respirator #brianthompson #luigimangione #ableism #discrimination #disabilityrights #disabilityjustice #maskup
NYC Mayor Wants to Ban Masks in the Wake of Shooting Death of CEO Brian Thompson
A look at how the shooting death of Brian Thompson is being used to re-ignite interest in banning masks in New York City - a move which would be a devastating blow to the disabled community.Broadwaybabyto (The Disabled Ginger)
I can’t believe this needs to be said - but masks don’t kill people. Guns do.
I find it extremely concerning that the media reports about Luigi Mangione say he had a gun, ammo and “box of masks” in his backpack. As though they’re the same.
Masks are a personal protective tool. They can’t harm anyone else.
The U.S. has a terrible problem with gun violence. Yet whenever a mass shooting occurs and someone suggests banning guns - they scream about their right to carry & “freedom” to protect themselves.
How far we’ve fallen that people are more concerned with banning masks than guns.
Masks bans won’t stop crimes. All they will do is fuel hateful anti-mask rhetoric and make public spaces even less safe for disabled and high risk individuals.
If the “freedom” to protect oneself is truly of paramount importance - the right to wear a mask needs to be preserved.
If you’ve stopped masking - please mask back up. We need you now more than ever. Send a loud and clear message that masking should not be considered a crime - and that you refuse to contribute to the spread of a dangerous virus.
#nomaskbans #noNYmaskbans #covidisairborne #covidisnotover #luigimangione #brianthompson #ericadams #ableism #discrimination #disability #disabilityjustice #sarscov2
I find it extremely concerning that the media reports about Luigi Mangione say he had a gun, ammo and “box of masks” in his backpack. As though they’re the same.
Masks are a personal protective tool. They can’t harm anyone else.
The U.S. has a terrible problem with gun violence. Yet whenever a mass shooting occurs and someone suggests banning guns - they scream about their right to carry & “freedom” to protect themselves.
How far we’ve fallen that people are more concerned with banning masks than guns.
Masks bans won’t stop crimes. All they will do is fuel hateful anti-mask rhetoric and make public spaces even less safe for disabled and high risk individuals.
If the “freedom” to protect oneself is truly of paramount importance - the right to wear a mask needs to be preserved.
If you’ve stopped masking - please mask back up. We need you now more than ever. Send a loud and clear message that masking should not be considered a crime - and that you refuse to contribute to the spread of a dangerous virus.
#nomaskbans #noNYmaskbans #covidisairborne #covidisnotover #luigimangione #brianthompson #ericadams #ableism #discrimination #disability #disabilityjustice #sarscov2
If you’re looking for resources to assist someone new to Long Covid, ME/CFS, POTS or MCAS - I’ve been slowly building guides that I hope will assist patients, caregivers AND healthcare workers who are willing to read them.
I’ve completed a three part series on MCAS and a separate three part series on POTS which I’ve compiled into a mega thread I will link below.
People have already provided great suggestions for a follow up series - including things like how to regulate temperature, how to handle dating and/or sex, how to discern which condition is driving which symptoms, how to talk to doctors in a way that will get them to understand, and how to cope with being a parent to a kiddo with these conditions.
If anyone has other suggestions - please reach out! I’m also working on a series about EDS which I hope will tie some of these topics together. As they say - when you can’t connect the issues think connective tissues!
Also - if you’re a parent to someone with any of these difficult to manage conditions and want to provide feedback, suggestions or contribute - please get in touch. I would love to connect!
https://zeroes.ca/@broadwaybabyto/113615351711064251
#longcovid #mecfs #pots #mcas #EDS #chronicillness #spoonie #covidisairborne #covidisnotover #disability
I’ve completed a three part series on MCAS and a separate three part series on POTS which I’ve compiled into a mega thread I will link below.
People have already provided great suggestions for a follow up series - including things like how to regulate temperature, how to handle dating and/or sex, how to discern which condition is driving which symptoms, how to talk to doctors in a way that will get them to understand, and how to cope with being a parent to a kiddo with these conditions.
If anyone has other suggestions - please reach out! I’m also working on a series about EDS which I hope will tie some of these topics together. As they say - when you can’t connect the issues think connective tissues!
Also - if you’re a parent to someone with any of these difficult to manage conditions and want to provide feedback, suggestions or contribute - please get in touch. I would love to connect!
https://zeroes.ca/@broadwaybabyto/113615351711064251
#longcovid #mecfs #pots #mcas #EDS #chronicillness #spoonie #covidisairborne #covidisnotover #disability
Broadwaybabyto (@broadwaybabyto@zeroes.ca)
If you’re dealing with Long Covid - there’s a chance you’re also dealing with MCAS and/or POTS/Dysautonomia. They’re common comorbids and can have a devastating impact on quality of life.zeroes.ca
My mega guide to living with POTS/Dysautonomia is here!
I cover everything I learned the hard way over years of living with this condition.
Salt, fluids, compression, medication, mobility aids and all the lifestyle adjustments you can imagine.
Patients can wait years for a diagnosis - being gaslit and dismissed along the way. When they DO get diagnosed - they’re often not given much in the way of support or coping tools.
It can be devastating when you’ve spent years suffering and then assume you’re finally going to get the help you need.
Doctors don’t understand the condition very well - and as a result we learn a LOT from other patients and painful trial and error.
My hope is this guide can serve as a soft place to land and find support, tips and ways to cope and stay safe:
https://www.disabledginger.com/p/learning-to-live-horizontally-your
#pots #dysautonomia #chronicillness #spoonie #longcovid #MECFS #mcas #disability #accommodation #accessibility #covidisnotover #covidisairborne
I cover everything I learned the hard way over years of living with this condition.
Salt, fluids, compression, medication, mobility aids and all the lifestyle adjustments you can imagine.
Patients can wait years for a diagnosis - being gaslit and dismissed along the way. When they DO get diagnosed - they’re often not given much in the way of support or coping tools.
It can be devastating when you’ve spent years suffering and then assume you’re finally going to get the help you need.
Doctors don’t understand the condition very well - and as a result we learn a LOT from other patients and painful trial and error.
My hope is this guide can serve as a soft place to land and find support, tips and ways to cope and stay safe:
https://www.disabledginger.com/p/learning-to-live-horizontally-your
#pots #dysautonomia #chronicillness #spoonie #longcovid #MECFS #mcas #disability #accommodation #accessibility #covidisnotover #covidisairborne
Learning to Live Horizontally - Your Guide to All Things POTS
When you have POTS - being upright is a challenge. We deal with fatigue, tachycardia, dizziness, fainting and more. Adapting to living life horizontally can make symptoms more manageable.Broadwaybabyto (The Disabled Ginger)
Never underestimate the power of wearing a mask.
It’s an act of solidarity with disabled people.
It’s an act of resistance against governments trying to convince you the covid threat is over and that certain people are “expendable”.
It’s an act of compassion. You’re showing your unwillingness to be responsible for the death or disability of another person.
It’s self care. You’re protecting your health and the health of those around you.
We could have chosen to learn from the early period of the pandemic. We could have been excited about eradicating an entire strain of the flu - and adopted masking as a powerful public health tool.
Instead we made them political - and to this day people are willing to be repeatedly infected with Covid rather than do something different.
They cling to the narrative “we didn’t mask before Covid so why should we now?”
The answer is simple. When you know better - you do better.
We know Covid is a serious multi system virus that’s causing long term harm. We know a good respirator prevents catching or spreading it.
We need to adapt - and it’s not too late.
#covidisairborne #covidisnotover #sarscov2 #longcovid #wearamask #disability #ableism #cleanair
It’s an act of solidarity with disabled people.
It’s an act of resistance against governments trying to convince you the covid threat is over and that certain people are “expendable”.
It’s an act of compassion. You’re showing your unwillingness to be responsible for the death or disability of another person.
It’s self care. You’re protecting your health and the health of those around you.
We could have chosen to learn from the early period of the pandemic. We could have been excited about eradicating an entire strain of the flu - and adopted masking as a powerful public health tool.
Instead we made them political - and to this day people are willing to be repeatedly infected with Covid rather than do something different.
They cling to the narrative “we didn’t mask before Covid so why should we now?”
The answer is simple. When you know better - you do better.
We know Covid is a serious multi system virus that’s causing long term harm. We know a good respirator prevents catching or spreading it.
We need to adapt - and it’s not too late.
#covidisairborne #covidisnotover #sarscov2 #longcovid #wearamask #disability #ableism #cleanair
Covid News: Delay in JN1 covid-19 booster update.
I just saw this post on 🦋. Hiccup in the ordering process. We will not have it for Christmas.
#CovidIsNotOver #covidIsAirborne
@auscovid19
I just saw this post on 🦋. Hiccup in the ordering process. We will not have it for Christmas.
#CovidIsNotOver #covidIsAirborne
@auscovid19
The Covid response has been to say - at every available opportunity - that “only the vulnerable” need to worry.
If someone dies or becomes disabled - the first question is almost never a compassionate one. It’s “how many comorbids did they have?”
People desperately wanted to go back to normal - so they accepted the narrative that THEY were safe and only those “other” people would become disabled and die.
First - it’s not true. Covid is a risk to everyone.
Second - you can’t decide to toss entire groups of people to the wayside and not have it impact your moral compass.
It may be subconscious - but it IS happening.
You’re being taught that it’s ok to harm people as long as they belong to an undesirable group. You’re being conditioned to believe you’re superior.
It’s not at all hard to see how this can pave the way for authoritarianism.
https://www.disabledginger.com/p/how-did-we-get-here-and-what-comes
#covidisairborne #covidisnotover #eugenics #ableism #discrimination #disability #longcovid #fascism #authoritarianism
If someone dies or becomes disabled - the first question is almost never a compassionate one. It’s “how many comorbids did they have?”
People desperately wanted to go back to normal - so they accepted the narrative that THEY were safe and only those “other” people would become disabled and die.
First - it’s not true. Covid is a risk to everyone.
Second - you can’t decide to toss entire groups of people to the wayside and not have it impact your moral compass.
It may be subconscious - but it IS happening.
You’re being taught that it’s ok to harm people as long as they belong to an undesirable group. You’re being conditioned to believe you’re superior.
It’s not at all hard to see how this can pave the way for authoritarianism.
https://www.disabledginger.com/p/how-did-we-get-here-and-what-comes
#covidisairborne #covidisnotover #eugenics #ableism #discrimination #disability #longcovid #fascism #authoritarianism
How Did We Get Here and What Comes Next?
Disabled people have been warning others for nearly 5 years that eugenicist Covid policies would lead to a rise of fascist, racist, bigoted, misogynistic hatred. It's here now. So what’s next?Broadwaybabyto (The Disabled Ginger)
Finishing mega article about POTS & Dysautonomia & feeling I’ve forgotten something
I tackle hydration, compression, lifestyle modifications, mobility aids, pacing, importance of rest, knowing your baseline and medications.
Anything I’ve missed? What do you wish you had known?
If you missed my introduction to POTS/Dysautonomia - it covers a lot of the bases. One reader took it to their doctor and it convinced them to order tests and pursue diagnosis!
https://www.disabledginger.com/p/living-life-upside-down-an-intro
#pots #dysautonomia #longcovid #chronicillness #spoonie #covidisairborne #disability
I tackle hydration, compression, lifestyle modifications, mobility aids, pacing, importance of rest, knowing your baseline and medications.
Anything I’ve missed? What do you wish you had known?
If you missed my introduction to POTS/Dysautonomia - it covers a lot of the bases. One reader took it to their doctor and it convinced them to order tests and pursue diagnosis!
https://www.disabledginger.com/p/living-life-upside-down-an-intro
#pots #dysautonomia #longcovid #chronicillness #spoonie #covidisairborne #disability
Living Life Upside Down - An Intro to POTS/Dysautonomia
I live my life horizontally thanks to a condition called POTS (Postural Orthostatic Tachycardia Syndrome). It's poorly understood, often misdiagnosed and can be devastating to quality of life.Broadwaybabyto (The Disabled Ginger)
Whenever I catch up on the UK Covid inquiry - I’m horrified by how much denial and ignorance is on display.
By the fact that they’re discussing the death and disability of millions - yet continue to refer to the pandemic in the past tense.
The only mask I’ve seen was on Cathy Finnis - a clinically vulnerable patient who testified as to how difficult it is to access safe care. No one else in the room masked to protect HER.
Perhaps the most galling example of denial is this video of Matt Hancock - where he talks about the importance of vaccination because without it healthcare workers may unintentionally infect someone in their care.
They’re literally infecting people in their care now. The NHS has discouraged healthcare workers from testing - and IF they do test positive they don’t have to isolate. There’s no requirement to test negative before returning to work. They can treat patients knowing they have covid - and they aren’t even required to wear a respirator.
Hospital acquired covid has a 10% fatality rate and yet many facilities are doing absolutely nothing to protect the most vulnerable among us.
Patients like me didn’t ask to be clinically vulnerable. We didn’t get a choice in being high risk. We can’t “stay home” from the hospital. We go for life saving care - only to have our lives and baselines put at risk because no one is mitigating the spread of Covid.
It would be so easy to mandate masks in healthcare. To upgrade air quality and ventilation to reduce the spread. To have regular testing and ensure those who are positive are isolated.
They just don’t want to. We’re acceptable losses. Expendable. Not worthy of protection.
After all - how many times have we heard “only the vulnerable are at risk” as a means of justifying a whole host of risky and unjustifiable behaviour?
At this point I find it hard to say that infecting patients is “unintentional”. I desperately want to give people the benefit of the doubt - but we are five years into this and we KNOW it’s airborne.
If you’re working in healthcare and choosing not to test, isolate or mask - is it unintentional when you infect a patient? Or inevitable?
These questions keep me up at night.
I feel absolutely sick knowing people like me can no longer access safe healthcare. I feel deep unyielding pain when I think of all those we’ve already lost. I feel anger and rage when I consider how easy it would be to change course - and how few people care enough to even bother to try.
We can do better. We must do better. We all share the air - we’re not safe until everyone is safe.
#ukcovidinquiry #masksinhealthcare #sarscov2 #pandemic #covidisairborne #covidisnotover #keepmasksinhealthcare #WearARespie #ableism #eugenics #disability #clinicallyvulnerable #LongCOVID #chronicillness
By the fact that they’re discussing the death and disability of millions - yet continue to refer to the pandemic in the past tense.
The only mask I’ve seen was on Cathy Finnis - a clinically vulnerable patient who testified as to how difficult it is to access safe care. No one else in the room masked to protect HER.
Perhaps the most galling example of denial is this video of Matt Hancock - where he talks about the importance of vaccination because without it healthcare workers may unintentionally infect someone in their care.
They’re literally infecting people in their care now. The NHS has discouraged healthcare workers from testing - and IF they do test positive they don’t have to isolate. There’s no requirement to test negative before returning to work. They can treat patients knowing they have covid - and they aren’t even required to wear a respirator.
Hospital acquired covid has a 10% fatality rate and yet many facilities are doing absolutely nothing to protect the most vulnerable among us.
Patients like me didn’t ask to be clinically vulnerable. We didn’t get a choice in being high risk. We can’t “stay home” from the hospital. We go for life saving care - only to have our lives and baselines put at risk because no one is mitigating the spread of Covid.
It would be so easy to mandate masks in healthcare. To upgrade air quality and ventilation to reduce the spread. To have regular testing and ensure those who are positive are isolated.
They just don’t want to. We’re acceptable losses. Expendable. Not worthy of protection.
After all - how many times have we heard “only the vulnerable are at risk” as a means of justifying a whole host of risky and unjustifiable behaviour?
At this point I find it hard to say that infecting patients is “unintentional”. I desperately want to give people the benefit of the doubt - but we are five years into this and we KNOW it’s airborne.
If you’re working in healthcare and choosing not to test, isolate or mask - is it unintentional when you infect a patient? Or inevitable?
These questions keep me up at night.
I feel absolutely sick knowing people like me can no longer access safe healthcare. I feel deep unyielding pain when I think of all those we’ve already lost. I feel anger and rage when I consider how easy it would be to change course - and how few people care enough to even bother to try.
We can do better. We must do better. We all share the air - we’re not safe until everyone is safe.
#ukcovidinquiry #masksinhealthcare #sarscov2 #pandemic #covidisairborne #covidisnotover #keepmasksinhealthcare #WearARespie #ableism #eugenics #disability #clinicallyvulnerable #LongCOVID #chronicillness
UK Covid Inquiry: Adam Wagner asks Eluned Morgan if she agrees air filtration should be investigated for use against COVID in hospitals.
She says "yes" but laments her air purifier was worst present she ever got, she barely uses it & has "no idea" if it made any difference.
Good grief - you have to use it for it to work!
This response was so privileged and callous. I wonder if she realizes how many people would LOVE to be gifted an air purifier or desperately wish healthcare facilities cared enough about their patients to clean the air?
#UKCovidInquiry #cleanair #COVIDisAirborne #CovidIsNotOver #clinicallyvulnerable #keepmasksinhealthcare #ableism #privilege #eugenics
She says "yes" but laments her air purifier was worst present she ever got, she barely uses it & has "no idea" if it made any difference.
Good grief - you have to use it for it to work!
This response was so privileged and callous. I wonder if she realizes how many people would LOVE to be gifted an air purifier or desperately wish healthcare facilities cared enough about their patients to clean the air?
#UKCovidInquiry #cleanair #COVIDisAirborne #CovidIsNotOver #clinicallyvulnerable #keepmasksinhealthcare #ableism #privilege #eugenics
🇦🇺AUS weekly COVID update: 15 November 2024
#COVID19Australia #COVIDisntOVER #COVIDisAIRBORNE @auscovid19
#COVID19Australia #COVIDisntOVER #COVIDisAIRBORNE @auscovid19
I’ve had people ask me why I’m concerned about mask bans given there’s a “medical exemption”
Mask bans are a return to ugly laws that will further isolate & exclude disabled people from society.
Medical exemptions are inadequate & leave many people behind (like healthy covid cautious people)
My article goes into it in more detail - but police are NOT medical professionals. It shouldn’t be up to them to determine who’s “medically justified” in wearing a mask
Many of us have invisible illnesses & struggle to convince our doctors to take us seriously
What hope do we have with police?
Moreover - disabled people don’t exist in a vacuum. We have friends, family and caregivers who we rely on to mask to protect us. They don’t qualify under most medical exemptions.
If you’re non disabled and want to stay that way? If you’re trying to avoid covid? That also doesn’t qualify.
These bans represent escalating fascism. They’re preying on people’s hatred for the disabled as well as their anger over mask mandates and covid policies.
The best way to push back? Wear a mask. Right now.
Call local lawmakers & tell them you won’t visit any state or county with a ban.
The Governor of North Carolina vetoed the bill - but the senate super majority overrode his veto.
Right after the mask ban bill passed - a woman with stage 4 cancer was accosted for masking.
The man called her a liberal, identified himself as a conservative & coughed on her.
What’s even more appalling - is that if you read the language of the North Carolina bill - it says any OCCUPANT of a public space can legally demand you remove your mask.
Its essentially deputizing the public to enforce mask bans - and designed to dissuade people from masking in the first place
Given these bans have been pushed by Republicans - and JD Vance spearheaded the federal ban on mask mandates - it’s prudent to fight back now while we still can.
Wearing a mask in public shows solidarity. It helps normalize them as a medical device. It will make them harder to ban.
My full article on the Nassau County ban and why medical exemptions aren’t the answer is below - I just found out Facebook has removed it for “disinformation”. And we wonder why more people don’t know mask bans have already happened 😞
https://www.disabledginger.com/p/nassau-county-ny-makes-masking-illegal
#nomaskbans #maskbans #wearamask #CovidIsNotOver #covidisairborne #ableism #eugenics #discrimination #disability
Mask bans are a return to ugly laws that will further isolate & exclude disabled people from society.
Medical exemptions are inadequate & leave many people behind (like healthy covid cautious people)
My article goes into it in more detail - but police are NOT medical professionals. It shouldn’t be up to them to determine who’s “medically justified” in wearing a mask
Many of us have invisible illnesses & struggle to convince our doctors to take us seriously
What hope do we have with police?
Moreover - disabled people don’t exist in a vacuum. We have friends, family and caregivers who we rely on to mask to protect us. They don’t qualify under most medical exemptions.
If you’re non disabled and want to stay that way? If you’re trying to avoid covid? That also doesn’t qualify.
These bans represent escalating fascism. They’re preying on people’s hatred for the disabled as well as their anger over mask mandates and covid policies.
The best way to push back? Wear a mask. Right now.
Call local lawmakers & tell them you won’t visit any state or county with a ban.
The Governor of North Carolina vetoed the bill - but the senate super majority overrode his veto.
Right after the mask ban bill passed - a woman with stage 4 cancer was accosted for masking.
The man called her a liberal, identified himself as a conservative & coughed on her.
What’s even more appalling - is that if you read the language of the North Carolina bill - it says any OCCUPANT of a public space can legally demand you remove your mask.
Its essentially deputizing the public to enforce mask bans - and designed to dissuade people from masking in the first place
Given these bans have been pushed by Republicans - and JD Vance spearheaded the federal ban on mask mandates - it’s prudent to fight back now while we still can.
Wearing a mask in public shows solidarity. It helps normalize them as a medical device. It will make them harder to ban.
My full article on the Nassau County ban and why medical exemptions aren’t the answer is below - I just found out Facebook has removed it for “disinformation”. And we wonder why more people don’t know mask bans have already happened 😞
https://www.disabledginger.com/p/nassau-county-ny-makes-masking-illegal
#nomaskbans #maskbans #wearamask #CovidIsNotOver #covidisairborne #ableism #eugenics #discrimination #disability
Nassau County, NY Makes Masking Illegal - Why Medical Exemptions Aren't the Answer
Defendants of mask bans point to medical exemptions as proof that disabled people have nothing to worry about. They're wrong. A look at why bans are ableist, discriminatory and dangerous.Broadwaybabyto (The Disabled Ginger)
By Pete 😷 #COVIDisAirborne @PeteUK7
"I never expected we'd reach a situation where people are more concerned about getting a virus on their PC or mobile device than they are about getting a virus that infects their own body - one which can significantly change their quality of life, or even end it. Yet here we are."
Source: https://x.com/PeteUK7/status/1856730786696716593
"I never expected we'd reach a situation where people are more concerned about getting a virus on their PC or mobile device than they are about getting a virus that infects their own body - one which can significantly change their quality of life, or even end it. Yet here we are."
Source: https://x.com/PeteUK7/status/1856730786696716593
“If you’ve been fighting for Covid mitigations for the last five years - you more than likely saw this coming. It was painfully obvious when the great unmasking occurred that many people on BOTH sides of the aisle didn’t care about the “vulnerable”. Didn’t care about community or protecting their neighbours. Didn’t care about anything other than their own ability to go to brunch, travel, socialize and get ‘back to normal.’
I’m not saying people should have shuttered inside their homes forever. None of us are. But they should have kept masking. There was no reason to stop. Respirators are highly effective at stopping the spread of Covid. The vast majority of people CAN wear them. We have mask blocs all over the world to provide masks to people who can’t afford them. It’s a simple thing you can do to protect yourself and - perhaps more importantly - protect others.”
If you missed my latest - it’s about the U.S. election, disability rights, eugenics, fascism and how we got to where we are. Perhaps more importantly - it’s about what comes next.
https://www.disabledginger.com/p/how-did-we-get-here-and-what-comes
#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 #fascism #election2024
I’m not saying people should have shuttered inside their homes forever. None of us are. But they should have kept masking. There was no reason to stop. Respirators are highly effective at stopping the spread of Covid. The vast majority of people CAN wear them. We have mask blocs all over the world to provide masks to people who can’t afford them. It’s a simple thing you can do to protect yourself and - perhaps more importantly - protect others.”
If you missed my latest - it’s about the U.S. election, disability rights, eugenics, fascism and how we got to where we are. Perhaps more importantly - it’s about what comes next.
https://www.disabledginger.com/p/how-did-we-get-here-and-what-comes
#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 #fascism #election2024
How Did We Get Here and What Comes Next?
Disabled people have been warning others for nearly 5 years that eugenicist Covid policies would lead to a rise of fascist, racist, bigoted, misogynistic hatred. It's here now. So what’s next?Broadwaybabyto (The Disabled Ginger)
Some good news for Qld
#CovidIsAirborne
#CovidUsNotOver
@auscovid19
https://www.abc.net.au/news/2024-11-08/queensland-chief-health-officer-john-gerrard-to-step-down/104577432?utm_source=abc_news_app&utm_medium=content_shared&utm_campaign=abc_news_app&utm_content=other
#CovidIsAirborne
#CovidUsNotOver
@auscovid19
https://www.abc.net.au/news/2024-11-08/queensland-chief-health-officer-john-gerrard-to-step-down/104577432?utm_source=abc_news_app&utm_medium=content_shared&utm_campaign=abc_news_app&utm_content=other
Queensland Chief Health Officer Dr John Gerrard to step down from top job
The 62-year-old, who took on the job after Jeannette Young's 15-year stint, will return to the Gold Coast University Hospital as an infectious disease physician.Janelle Miles (ABC News)
People spend their lives running from suffering. Doing whatever they can to avoid feeling pain. The idea of “forever suffering” is terrifying to them. I think this fear is behind a lot of the disdain we see directed at disabled people.
We remind others that suffering can be permanent. That it can’t always be outrun.
We exist in the grey. Our illnesses won’t kill us - but they also won’t ever get better. There’s no cure on the horizon. No “are you better yet?”
This reality scares the crap out of people.
As such - they pull away from us. They abandon us or treat us with such disdain that we walk away from them. The ones that stay often expect us to hide how sick we are. To plaster a smile on our face and say we’re “fine” so that they don’t have to feel uncomfortable.
When they ask how we’re feeling or if we’re “any better”… they don’t want to hear the truth. In fact - if you tell them the truth you could find yourself facing a lecture on “positive thinking” or how you just need to “try harder” and you will suddenly overcome your illnesses.
People are unable or unwilling to face the realities of chronic illness - so they make it harder for us to face it as well. They treat it like it’s our fault. Like we did something to become ill or like we could get better if we “really wanted to”.
They will push our boundaries, gaslight us and yes - put us at risk for covid. So this is your reminder that it is ok to set and hold boundaries. It’s ok to protect yourself. If someone won’t be there at your worst - they don’t deserve you.
https://www.disabledginger.com/p/we-dont-do-sick-if-you-cant-hide
#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
We remind others that suffering can be permanent. That it can’t always be outrun.
We exist in the grey. Our illnesses won’t kill us - but they also won’t ever get better. There’s no cure on the horizon. No “are you better yet?”
This reality scares the crap out of people.
As such - they pull away from us. They abandon us or treat us with such disdain that we walk away from them. The ones that stay often expect us to hide how sick we are. To plaster a smile on our face and say we’re “fine” so that they don’t have to feel uncomfortable.
When they ask how we’re feeling or if we’re “any better”… they don’t want to hear the truth. In fact - if you tell them the truth you could find yourself facing a lecture on “positive thinking” or how you just need to “try harder” and you will suddenly overcome your illnesses.
People are unable or unwilling to face the realities of chronic illness - so they make it harder for us to face it as well. They treat it like it’s our fault. Like we did something to become ill or like we could get better if we “really wanted to”.
They will push our boundaries, gaslight us and yes - put us at risk for covid. So this is your reminder that it is ok to set and hold boundaries. It’s ok to protect yourself. If someone won’t be there at your worst - they don’t deserve you.
https://www.disabledginger.com/p/we-dont-do-sick-if-you-cant-hide
#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
Family Abandonment During Covid Pandemic. They 'Don't Do Sick'.
A look at relationship dynamics, ableism and the importance of setting (and sticking) to personal boundariesBroadwaybabyto (The Disabled Ginger)
People are angry that hospitals are bringing back mask mandates due to COVID outbreaks.
Patients like me are angry that we have to risk infection to get medical care. Some of us have died due to hospital acquired COVID.
Masks make sense in hospitals - why oppose them?
I’ve yet to hear a decent argument against mask mandates in hospitals.
The people who oppose them are almost always the ones screaming about how strong and healthy their immune systems are - so theoretically they never spend any time IN a hospital. Why do they care?
Inevitably people just trot out the tired “if your mask works then no one else needs one”… which just highlights that they’ve never spent any significant time in the hospital.
If you’re sick enough to need the hospital there’s decent odds something might prevent you from masking.
Even if you CAN mask - if you’re admitted what do you do when you need to eat, drink or brush your teeth? What if you require oxygen, having vomiting or airway complications?
The responsibility to stay covid safe shouldn’t be left to the patient.
It’s cruel and unusual punishment.
Mandatory masks mean that patients are protected by those around them - which is how it should be.
No one should have to risk covid to get care - and the normalization of hospital acquired covid needs to stop.
If you’re someone who opposes masks in healthcare - or who doesn’t understand WHY they’re necessary - please read my plea to healthcare workers.
Vulnerable patients feel unsafe. Expendable. Terrified.
Needing the hospital is scary enough - we shouldn’t have to worry about forced infection too:
https://www.disabledginger.com/p/a-plea-to-maskless-healthcare-workers
#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 #keepmasksinhe
Patients like me are angry that we have to risk infection to get medical care. Some of us have died due to hospital acquired COVID.
Masks make sense in hospitals - why oppose them?
I’ve yet to hear a decent argument against mask mandates in hospitals.
The people who oppose them are almost always the ones screaming about how strong and healthy their immune systems are - so theoretically they never spend any time IN a hospital. Why do they care?
Inevitably people just trot out the tired “if your mask works then no one else needs one”… which just highlights that they’ve never spent any significant time in the hospital.
If you’re sick enough to need the hospital there’s decent odds something might prevent you from masking.
Even if you CAN mask - if you’re admitted what do you do when you need to eat, drink or brush your teeth? What if you require oxygen, having vomiting or airway complications?
The responsibility to stay covid safe shouldn’t be left to the patient.
It’s cruel and unusual punishment.
Mandatory masks mean that patients are protected by those around them - which is how it should be.
No one should have to risk covid to get care - and the normalization of hospital acquired covid needs to stop.
If you’re someone who opposes masks in healthcare - or who doesn’t understand WHY they’re necessary - please read my plea to healthcare workers.
Vulnerable patients feel unsafe. Expendable. Terrified.
Needing the hospital is scary enough - we shouldn’t have to worry about forced infection too:
https://www.disabledginger.com/p/a-plea-to-maskless-healthcare-workers
#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 #keepmasksinhe
A Plea to Maskless Healthcare Workers from Vulnerable Patients
If you see a mask - wear a mask. Better yet - wear a mask all the time and show us you understand that we're still IN a pandemic. We are depending on you to keep us safe - please don't betray that.Broadwaybabyto (The Disabled Ginger)
A few months ago a friend told me I needed to stop “being a burden” on those around me & find somewhere with round the clock care to live & accommodate my disabilities. Knowing no such place exists for someone like me - I gave them a challenge.
I told them that I had looked for such a place many times - and I’ve come up empty because people like me (relatively young with unstable chronic illnesses) fall through the cracks. We aren’t considered when care homes are being established.
We have homes for the elderly, rehab centres and hospices but almost nothing for a young person who isn’t imminently dying but also has no expectation of improvement. I challenged this friend to find me a place - within a reasonable budget - and said if they did I would move.
Of course they were unable to find anything - and in fact even when they tripled their budget they came up empty. There was one contender that provided a brief glimmer of hope - but as soon as they discovered my heart condition they said no.
The reason? “She’s too unstable and we don’t have adequate monitoring. She should be in hospital or try hospice.” Most chronically ill people know that hospitals are short term solutions & will often discharge you before you’re strong enough to be on your own.
And hospice? You can’t enter hospice unless you are imminently dying. So around & around this friend went… hitting all the same roadblocks I’ve hit time and time again. Finally they asked if I considered private in home nursing?
In home nurses where I am start at around $36/hour. If you need round the clock care that’s just over $6000 a week. Clearly not an option for the vast majority of people.
Finally my friend conceded that I was right and there was no magical place where I could have round the clock care & cease being a “burden” to those around me. They were flustered and apologetic & kept saying “I just assumed you hadn’t really looked”.
Therein lies the problem for so many of us - our friends & family always seem to assume they know better and/or that we have simply failed and not “tried hard enough”. The reality is we often spend all our energy looking for solutions - but those solutions simply don’t exist.
I thanked my friend for apologizing & for their efforts in trying to find a place - but I also asked them to consider how it feels to be called a “burden” just for needing support to survive. To be told you needed to go away & stop “bothering” friends & family?
Of course my friend didn’t have an answer - just uncomfortable silence followed by some muffled apologies. I share this story to implore people to stop assuming disabled people haven’t already tried the things you’re suggesting.
This doesn’t mean it’s wrong to make suggestions. But if we tell you we’ve already tried it and it’s not an option - believe us. It’s exhausting spending your days dealing with chronic illness - we don’t need to be explaining ourselves to people who should have our back.
Lastly - disabled people are NOT a burden. There’s nothing wrong with needing help to survive. Telling someone they should feel bad about receiving that help is an unkind thing to do. Please offer help or keep quiet. Most importantly - believe us when we say we’ve tried.
#CovidIsAirborne #CovidIsNotOver #CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #N95s #Ableism #CommunityCare #Eugenics
I told them that I had looked for such a place many times - and I’ve come up empty because people like me (relatively young with unstable chronic illnesses) fall through the cracks. We aren’t considered when care homes are being established.
We have homes for the elderly, rehab centres and hospices but almost nothing for a young person who isn’t imminently dying but also has no expectation of improvement. I challenged this friend to find me a place - within a reasonable budget - and said if they did I would move.
Of course they were unable to find anything - and in fact even when they tripled their budget they came up empty. There was one contender that provided a brief glimmer of hope - but as soon as they discovered my heart condition they said no.
The reason? “She’s too unstable and we don’t have adequate monitoring. She should be in hospital or try hospice.” Most chronically ill people know that hospitals are short term solutions & will often discharge you before you’re strong enough to be on your own.
And hospice? You can’t enter hospice unless you are imminently dying. So around & around this friend went… hitting all the same roadblocks I’ve hit time and time again. Finally they asked if I considered private in home nursing?
In home nurses where I am start at around $36/hour. If you need round the clock care that’s just over $6000 a week. Clearly not an option for the vast majority of people.
Finally my friend conceded that I was right and there was no magical place where I could have round the clock care & cease being a “burden” to those around me. They were flustered and apologetic & kept saying “I just assumed you hadn’t really looked”.
Therein lies the problem for so many of us - our friends & family always seem to assume they know better and/or that we have simply failed and not “tried hard enough”. The reality is we often spend all our energy looking for solutions - but those solutions simply don’t exist.
I thanked my friend for apologizing & for their efforts in trying to find a place - but I also asked them to consider how it feels to be called a “burden” just for needing support to survive. To be told you needed to go away & stop “bothering” friends & family?
Of course my friend didn’t have an answer - just uncomfortable silence followed by some muffled apologies. I share this story to implore people to stop assuming disabled people haven’t already tried the things you’re suggesting.
This doesn’t mean it’s wrong to make suggestions. But if we tell you we’ve already tried it and it’s not an option - believe us. It’s exhausting spending your days dealing with chronic illness - we don’t need to be explaining ourselves to people who should have our back.
Lastly - disabled people are NOT a burden. There’s nothing wrong with needing help to survive. Telling someone they should feel bad about receiving that help is an unkind thing to do. Please offer help or keep quiet. Most importantly - believe us when we say we’ve tried.
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