People keep shouting that if disabled people can’t cook or clean they should be institutionalized. Apparently accommodating us so we can live independent lives is angering others. Setting aside how awful many care homes are - do you realize there aren’t nearly enough beds?
I get that many ppl seem to want to completely disappear us from society. Seem to think we would be “better off” institutionalized even though many homes are dangerous places for disabled ppl. Even IF they were all sunshine & lollipops …do you think there’s enough of them?
Do you think they accept people of all disabilities? This idea that we should all have families or full time caregivers to support us is nonsense. It’s unrealistic and in many cases unnecessary. Many of us can & do learn to adapt on our own with part time help where available
The reality is we don’t have enough long term care beds to support everyone who’s chronically ill. Many places won’t take you until you’re a certain age. Many deny if you’re too unstable or don’t have rehabilitation goals. I know. I tried to find one & was repeatedly denied.
Stop assuming there’s some society wide program that places disabled people in homes that suit their unique circumstances. Many congregate settings are vectors for disease and neglect. We have to beg for access to places that often make us worse & reduce our quality of life
When you’re tempted to shout that we belong in a home - consider if it’s where YOU would want to be. Also look around - many countries are rapidly expanding their euthanasia programs to include disabled people with non terminal illnesses. Why do you think that is?
We are seeing rising disability numbers due to Covid - and the sad fact is we didn’t have enough supports for disabled people before the pandemic. We certainly can’t support the influx that’s currently occurring. So we are offering DEATH instead. Dead people cost less money.
I know folks are stuck in denial. They don’t want to accept the society wide risk associated with unmitigated COVID spread. But we are begging you to try. Try and think critically about WHY governments are expanding euthanasia programs.
Believe us when we tell you the dire lack of support available. We aren’t shouting about this because we want sympathy or enjoy complaining - we’re shouting because we can see the writing on the wall. We know our systems can’t support this much disability & people will suffer 1/2
First, let me say that #covid19 is still “a thing”.
I have been taking this virus serious since Jan 2020 when the first rumblings were being heard in North America.
In late Feb 2020 I called my grandmother and parents to encourage them to take it seriously too, make sure they keep their “network” normal and don’t make any extra trips, new contacts, etc.
They humoured me, but I don’t think they did much.
Then in April 2020 I relayed to them that this was airborne and cloth masks probably don’t cut it and they should wear the n95 that my Dad wore for asbestos removal.
All this thread is to say, just because your family has decided that the risk of brain trauma for a shitty beer is worth it, you don’t have to.
Covid is dangerous and repeated infections should be avoided! Once a year is too much. And if you have kids they are going to have more time to get a disabling infection than you.
#CovidConscious crowd: I’m sure I saw some discussion of techniques for stapling excess #respirator material together under chin to improve fit on small faces …
But I can’t find it now and I don’t want to just start stapling willy-nilly!
One of our asks for #VulnerabilityIsntSeasonal is to require privately-run medical settings to meet the same minimum mask coverage as public facilities. This account from Lisa Sherwood (she/her) shows why it’s important.
🚨 Content warning: negligence, denial of care
“I was having problems with my heart in 2023 and was referred for testing to a private clinic. When I arrived, I found one medical office assistant (MOA) at the desk wearing a surgical mask under their nose, and the other MOA had their mask dangling from a single ear. When I asked the MOAs to please mask, they refused. I tried to prop the door open a little for better ventilation, but one of them told me it was too cold. The doctor was wandering around unmasked.
Upon the MOA’s suggestion, I waited outside for my appointment. The doctor came out and suggested I would be “happier getting tested elsewhere” and an MOA deposited my belongings outside.
I immediately got into my car and started phoning to determine how a mask requirement was enforced in private clinics. It became clear there was no process, and no enforcement. A complaint to the College of Physicians was my only option. I faced months of delay and increased heart irregularities before I was able to get testing in a hospital. As such, diagnosis and treatment were delayed. It’s clear that patients at private health care clinics are more susceptible to similar breaches in infection control practices for SARS-CoV-2 and other airborne illnesses.”
Level 10 #covid measures in effect thanks to some parent sending kid in to infect my kid. Here's a tour our #covidisairborne setup.
Energy efficiency out the window. CR-like fan for positive pressure (facing inward). MERV13+ filters on high in most rooms. Three 150 CFM ceiling/kitchen exhaust fans on high. Two Aranet4 always below 500. All in Flo masks. With Patient Zero at four neg tests over three full days (one Lucira PCR-"like") we're about ready to back off to heightened but "cold" level.
I’m hearing an increasing number of people say they won’t even discuss common sense Covid mitigations because they’re so angry about the restrictions placed on them at the beginning of the pandemic. Their anger is literally preventing them from protecting themselves and others.
I often ask if they’ve considered how angry they will be if Covid disables them and places permanent restrictions on their body? Especially knowing it was preventable. I’ve yet to get a good answer.
Vitacore's having a RIDICULOUS clearance sale on a few 3M respirators; in particular, a case of Aura 1870+ is as cheap as I've ever seen it (or any other Aura, for that matter) -- works out to $0.70/ea
Let’s talk about THAT NPR article. I’ve taken a few days to grieve for those forced into dangerous situations by spouses/family who would rather go back to normal than protect their vulnerable loved ones. Where has kindness gone & how do we stop treating ppl as disposable?
I wish I could say I was shocked to read that piece - but after 4 years of being abandoned by more people than I care to admit - little surprises me anymore. We were “all in this together” for a few weeks - and then people got sick of it.
People don’t want to change their behaviours. For many healthy & privileged people the pandemic was the first time they ever had to make sacrifices or change their “normal”. Most didn’t like it.
Some people were empathetic enough to see the isolation from stay at home orders and connect it to the lives of disabled people. I had a number of people reach out and say things like “wow is this what your life is always like?”
Of course my answer was “Yes”. My chronic illnesses isolated me long before the pandemic - Covid only intensified that isolation. When people would draw parallels I felt great hope - I imagined we would move forward to a more inclusive society.
Instead what has happened is people got tired of having to make sacrifices. Government & public health told them that they no longer had to protect the vulnerable & that it was OUR responsibility to shield & isolate.
So they stopped masking & went back to normal.
There were some holdouts - usually people who love or care for a vulnerable person. But as it became clear that herd immunity wasn’t coming, that Covid wasn’t going away…. Even those people grew resentful of the modifications to their daily lives.
They started pressuring their vulnerable loved ones to stop worrying so much & go “back to normal”. Many started doing high risk indoor actitivies and simply lying about it - while others wrote articles for NPR.
The sad reality is that people now view the vulnerable as THE people who ruined their lives. After all - mask mandates & stay at home orders were sold as a means of “protecting the vulnerable”. People are angry their “normal” was altered & they’re not being subtle about it.
I would argue they should take that anger and direct it where it belongs - at government and public health officials who’ve bungled the messaging around Covid from the very beginning. The people who lied & downplayed the risks & cost us our best chance of containing Covid
Of course most leaders and public health officials are telling people what they want to hear. That the threat has passed, that we’ve “defeated Covid” and that they can party like it’s 2019. As a result people aren’t angry at them - they’re angry at the vulnerable instead
They’re angry at disabled people for trying to protect themselves, at advocates for reminding them that we’re STILL in a pandemic and at the sight of a respirator. These things & people remind them of that time in their life when they couldn’t do what they wanted.
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They don’t want to be reminded of the few weeks or months they had to sacrifice for other people. They want their “normal” back. And they definitely don’t want to consider they too could end up disabled like us “vulnerable people”.
So they buy the lies despite overwhelming evidence that the threat is still with us. And they direct their anger towards disabled and vulnerable people instead. They put us at risk - often deliberately - so that they can stay in their denial bubble of normalcy.
I’m sick of it. It’s made life much harder for so many people and it didn’t have to be this way. We understand Covid & how it’s spread and we have the tools to keep everyone safe. The reason people don’t want to use them is that they fear change & adaptation.
They also don’t see themselves as vulnerable. They still see Covid as only an issue for those “other people” that they think they’re so much better than. So they do nothing to protect us.
How do we change this? I don’t know anymore. Given most of us can’t even get our loved ones & doctors to take steps to protect us… what chance do we have of convincing strangers?
I don’t have the answers but I do know that writing articles shaming your vulnerable spouse is NOT the way. Lying & exposing vulnerable loved ones to reinfection is NOT the way. Refusing to take any precautions & getting Covid over & over is NOT the way.
We can clean & ventilate the air we share. We can mask in high risk settings. We can demand mask mandates in hospitals, free access to tests & better vaccines & treatments for Long Covid. There’s much we CAN do if we would stop othering people & admit there’s a serious threat
For now the best I can do is protect myself & those around me and continue to tell stories of challenges I face. I encourage others within the disability & Long Covid communities to be ready to welcome many new members - our ranks will keep growing in the ‘let ‘er rip” era
We need to remember how scary it can be when you first realize you’re chronically ill - and we need to have compassion for those joining us regardless of how or why they ended up here. When we figure out how to work together as a collective voice - we will be unstoppable.
Covid Research: Covid-19 infections leave a mark on the Brain
Dr Ziyad Al-Aly has authored an article including links to the associated research publications that indicate the different ways that covid-19 can effect the normal functioning of your brain. Worth a read for sure and bookmarking. You need to continue to avoid catching covid-19. Please help slow the spread by wearing a N95 respirator in public spaces.
Why should we care about a virus with a "99.8% survival rate"?
The article in the link below that I wrote highlights the actual impact a virus with a high survival rate can have on the population and why it is all the people who survive that we should be most worried about.
The web version of this article with a nice table of contents and easy to share with others can be found here ( https://tinyurl.com/COVIDrealImpact ). 🧵 1/2
I don’t know who needs to hear this - but it’s normal to be anxious if you’re at the ER. Especially during an airborne pandemic. HCW’s should not be slapping an anxiety label on patients who request they wear a mask.
A person sick enough to need the ER is too sick to handle Covid. Instead of judging them just put on a mask. It’s a kindness and it’ll protect you too!
This #LongCovidAwarenessDay I want to say sorry. I’m sorry to everyone who’s joined the ranks of the chronically ill & disabled because our leaders, public health and fellow citizens refuse to take Covid seriously.
Those of us who were disabled before the pandemic could see this wave of chronic illness coming - and many of us have been screaming from the top of our lungs the last 4 years. Begging people not to take their health for granted & to wear a mask and protect themselves. Warning them that there are no do-overs once you become chronically ill.
Unfortunately very few people are listening - and many won’t understand the true devastation of #LongCovid until it directly impacts them. At which point it’ll be too late.
Despite seeing these waves of disability as an inevitable consequence of “let er rip” Covid strategy - one thing I did not see coming was how many people would willingly embrace not only ableism - but full on eugenics.
People in my own life who were previously kind & supportive have become cruel and angry. The masks have been ripped off. They don’t hesitate to tell me that they blame me for the restrictions placed on them in the early days of Covid - and that they will never again allow their freedoms to be infringed on in the name of protecting the vulnerable. One even went as far as to say “you’ve been sick for years - just die already.”
People who say these things don’t understand what disabled people understand all too well - your health is not a permanent state. Everyone will become disabled eventually…. Some of us earlier than others. Also many people who think they’re invulnerable are already vulnerable and don’t even know it.
Yet rather than adapting behaviour and pushing for a new normal that makes the world safe for everyone - most temporarily abled people have instead doubled down on hateful eugenics talking points and want us to stay home forever (or worse - die). It needs to stop.
Covid is airborne and we all share the air. “You do you” individualism is quite literally killing people. We need to start caring about the air we share as this will lead to a healthier society for everyone. Until then we need to mask up. It’s not hard, it’s incredibly effective & it might save someone’s life.
If you want to read more about the “friend” who told me I should “just die already”… I wrote about it & the behaviour changes I’ve noticed throughout the pandemic here: https://disabledginger.substack.com/p/just-die-already
#COVIDIsNotOver and #COVIDIsAirborne, so I'm not boosting your unmasked transit or conference selfie. if you give a shit about people dying under the wheels of an SUV, you should give a shit about people dying of #COVID - and they still are, over a thousand people a day worldwide.
The ventilation on most #trains and buses is not good enough to clear out a full car's worth of exhales, and never has been. #WearAMask until we eradicate it!