Nostr notes by Broadwaybabyto

it’s sad how true this is. The article said she declined to ...

2024-06-14T10:17:13Z

In reply to nevent1q…u5v2
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it’s sad how true this is. The article said she declined to press charges but I would imagine law enforcement could have chosen to charge with or without her? Given it’s a clear violation of the law?

me too. I’m concerned and scared and angry. I’m sick of ...

2024-06-14T10:15:31Z

In reply to nevent1q…0ncr
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me too. I’m concerned and scared and angry. I’m sick of feeling like vulnerable people are bearing the brunt of people’s anger they had to mask for a brief period of time.

The idea that mask mandates designed to preserve life are even remotely similar to mask bans is appalling.

I see no way this won’t escalate to violence - it’s dangerous to embolden such angry people.

what city are you in? I’m encouraged hearing half the people ...

2024-06-14T10:13:22Z

In reply to nevent1q…e487
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what city are you in? I’m encouraged hearing half the people were masked!

I’m housebound now due to the severity of my disabilities so it ...

2024-06-14T04:41:22Z

In reply to nevent1q…wh2p
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I’m housebound now due to the severity of my disabilities so it limits the things I can do - but perhaps what I should have said was “masks shouldn’t be political”. Because they shouldn’t be. They weren’t prior to COVID and the fact that they’ve been politicized is causing tremendous harm. How to change that is a harder question and one that I’m still trying to figure out.

I still see masks downtown Toronto in & around the St ...

2024-06-14T04:39:27Z

In reply to nevent1q…9y6t
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I still see masks downtown Toronto in & around the St Lawrence and financial district … no way to know if it’s primarily tourists but at least I don’t feel like the only one!

North Carolina’s mask ban just passed this week - and New York ...

2024-06-13T22:29:36Z

North Carolina’s mask ban just passed this week - and New York is already considering following suit.

If we are going to refuse to mitigate Covid in ANY way - if people wish to remain in denial about its prevalence and severity - then we NEED the legal right to mask. It’s our only protection in public.

Making wearing a medical device illegal is effectively bringing back ugly laws - we’re moving into full blown eugenics and people are celebrating it. They’re happy they won’t see masks anymore.

Enough is enough. We really need to get loud on this. Contact local government and advise them you won’t stand for medical masks being made illegal. If you’re able to mask and aren’t - now is the time to mask up in solidarity! If we can normalize them - they’re less likely to be banned.

Transcript of NY Governor Hochul via Dr. Lucky Tran :verified: (npub1x3x…qwm0)

#CovidIsAirborne #CovidCautious #CovidIsNotOver #MaskBan #BoycottNC #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #NorthCarolina #NewYork #UglyLaws

I wish more people would start masking just to show it’s a ...

2024-06-13T09:38:23Z

In reply to nevent1q…egcu
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I wish more people would start masking just to show it’s a normal thing people do to avoid catching (or spreading) disease. Sadly it seems very few people are willing to do that even to fight back against such a discriminatory bill.

The North Carolina mask ban hasn’t been entered into law yet ...

2024-06-13T06:54:00Z

The North Carolina mask ban hasn’t been entered into law yet & already there’s a story of a woman being intentionally coughed on & harassed.

The man demanded she remove her mask, called her a Liberal and himself a Conservative and tried to tell her masks were illegal in public places. She explained she had stage 4 cancer and was immune compromise and he responded by purposefully coughing on her.

This is disgusting behaviour but make now mistake - lawmakers are effectively encouraging this type of harassment. Banning medical masks emboldens those who seek to harm high risk and disabled individuals. We are already seeing it.

It’s also fascinating that her attacker felt the need to call out his political affiliation (as well as make an assumption on hers).

I need people to understand masks aren’t political. Covid isn’t political. A virus is incapable of caring what side of the aisle you’re on - and a mask is a medical device to protect the health of the wearer (and others). This politicization of masks is mainly being driven by people who are angry about mandates at the height of the Covid pandemic - they consider the months they had to mask as the most egregious violation of their freedoms imaginable - and now they’re lashing out at those who remind them of that time in their lives. They don’t want to see masks (or disabled people) ever again.

Please keep pushing back. Speak out. Get loud. Let lawmakers know you won’t stand for bills that violate a person’s right to protect themselves and their health. The harassment will only get worse from here and we need to call out bad behaviour whenever it happens - and support each other through these difficult times.

https://www.wral.com/story/scared-to-put-on-my-mask-cancer-patient-says-she-was-intentionally-coughed-on-in-spat-over-mask/21478890/

#CovidIsAirborne #CovidCautious #CovidIsNotOver #MaskBan #BoycottNC #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #NorthCarolina

it so perfectly encapsulates where we are in the pandemic ...

2024-06-13T04:28:53Z

In reply to nevent1q…fxhj
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it so perfectly encapsulates where we are in the pandemic response. Only a patient masking - NOT the doctor. Respirator is upside down like our entire approach to infection control!

I’ve read the final bill - from my interpretation medical masks ...

2024-06-12T21:06:17Z

In reply to nevent1q…n7r3
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I’ve read the final bill - from my interpretation medical masks are ok to prevent spreading communicable disease - which means we don’t yet know if you have to already be sick to wear them. It excludes people needing them for smoke, pollen etc. It also allows literally ANY person to demand you take off your mask. So the medical exemption is effectively worthless if any person has the power to make you remove it.

I hope I’m wrong but the language was purposefully vague for a reason - and we likely won’t know its full impact until someone is arrested.

ha! I want to get one of those inflatable dinosaur costumes and ...

2024-06-12T09:23:08Z

In reply to nevent1q…vcrx
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ha! I want to get one of those inflatable dinosaur costumes and just walk around in it with my N95 on underneath!

In the last 4.5 years we’ve learned so much about Covid - how ...

2024-06-12T06:49:13Z

In the last 4.5 years we’ve learned so much about Covid - how it’s spread, what the virus can do to our bodies and how to prevent transmission. We HAD the tools to significantly change the course of the pandemic (and spare many lives).

Yet instead of using these tools - one by one governments have taken them away. Made accessing tests, treatments and vaccines harder. Failed to address & educate about airborne transmission. Lifted mask mandates and isolation requirements.

Then today the state of North Carolina passed a bill making medical masks illegal in public settings AND granting occupants of public places the power to demand you remove your mask (if you’re wearing one under the extremely narrow medical exemption).

It’s been a very tough day for disabled individuals. We’ve been knocked down time & time again… punished for pandemic policies that we had no say in developing or enforcing. The pendulum is swinging so far in the other direction that even healthcare workers seem uninterested in protecting their high risk patients.

I wrote about the mask ban, why people all over the world should fight against it, why it’s ableist & discriminatory and HOW we can fight back. Because we CAN fight back. We have strength in numbers are our lives (and the lives of others) are worth fighting for. Read more here: https://disabledginger.substack.com/p/north-carolina-passes-hb-237-and

CovidIsAirborne #CovidIsNotOver #CovidCautious #ChronicIllness #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #NorthCarolina #directaction #MaskBans

A few weeks ago I wrote an article about North Carolina’s ...

2024-06-12T01:49:02Z

A few weeks ago I wrote an article about North Carolina’s proposal to ban medical masks and remove the existing medical exemption.

I was concerned the removal of the medical exemption was strategic - allowing them to put it back later and pretend they were doing the disability community a favour.

When the House rejected the bill and sent it back to the Senate for revisions - many disability advocates (myself included) expressed concern that it would end up revised to be MORE problematic.

That’s exactly what happened. The new bill that’s been passed TODAY is an egregious violation of an individuals right to protect themselves from a deadly & disabling virus (not to mention their right to protect others).

I wrote about what it means, how it will harm high risk & vulnerable individuals and what we can do to fight back. And we MUST fight back. You don’t have to be from North Carolina - or even American - to help. You can call, email and post that you won’t spend a dollar in that State until this law is reversed.

https://disabledginger.substack.com/p/north-carolina-passes-hb-237-and

#CovidIsAirborne #CovidIsNotOver #CovidCautious #ChronicIllness #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #NorthCarolina #directaction #MaskBans

It will never cease to amaze me how much death & disability ...

2024-06-09T04:44:16Z

It will never cease to amaze me how much death & disability people have been willing to accept, downplay and normalize just so they don’t have to adjust their way of life.

As Julia points out - Covid lulls are being bought by mass infection NOT by sound public health policy & effective mitigations. Mass infection means many dead & even more disabled and isn’t something that should be celebrated.

We could do so much more to control the spread of this disease. We’ve learned so much in the last 4 years and we know what works - but we need to push governments & public health to actually do it. We need to be honest with ourselves about what these lulls really mean & demand better from those in power.

We also need to push back against the constant removal of tools we had to address the COVID pandemic. We are literally going backwards. Tests & treatments are nearly impossible to access, booster uptake at an all time low, little to no reporting of hospitalizations, cases & deaths and now in North Carolina a bill to make masking illegal.

Covid is airborne. We all share the air. We need to care about the air we share and we will all be much healthier.

https://open.substack.com/pub/thegauntlet/p/covid-lulls-arent-being-earned-by?r=19dk2e&utm_medium=ios

#CovidIsAirborne #CovidIsNotOver #CovidCautious #ChronicIllness #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #NorthCarolina #directaction #MaskBans

It will never cease to amaze me how much death & disability ...

2024-06-09T04:43:22Z

ha! I love this. Sign me up! I used to be a theatre critic - I ...

2024-06-08T04:56:37Z

In reply to nevent1q…md86
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ha! I love this. Sign me up! I used to be a theatre critic - I will give you your first 5 star review.

What I find particularly galling about this bill is in theory it’ll make wearing a mask to a hospital illegal - and allow any owner (so doctor? Nurse?) to demand you remove it or leave. At a hospital!

I hope you’re right … but I know some advocates working in NC ...

2024-06-08T03:02:31Z

In reply to nevent1q…p9k9
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I hope you’re right … but I know some advocates working in NC are very concerned that it was intentional. And the fewer people masking and the more harassment about it the more people need to up their game. I’m relatively confident in an earloop N95 if everyone is masked - if no one is masked I would rather a half face respirator.

I would agree that’s likely what they mean - but I know some ...

2024-06-07T04:38:43Z

In reply to nevent1q…4sj0
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I would agree that’s likely what they mean - but I know some people in North Carolina aren’t comfortable and want it to be made clearer. N95s will likely be fine but I wouldn’t be surprised if half and full face respirators aren’t. Hope you can find a good mask to switch to!

A few week’s ago I wrote an article about North Carolina’s ...

2024-06-07T03:32:42Z

A few week’s ago I wrote an article about North Carolina’s proposal to ban medical masks in public places. My concern was that they were removing the medical exemption so that they could put it back at a later date and act as though they were doing the disability community a favour.

That later date has come. The Senate passed the revised bill today which allows medical masks for the purposes of avoiding spreading a communicable disease. It states medical & surgical masks … we don’t know if respirators like N95s and P100s will be permitted.

We also don’t know whether you will be able to wear a mask to avoid catching a disease. This language is purposefully and problematically vague and sounds as though you have to already BE COVID positive in order to mask.

Medical exemptions are extremely problematic in that they put undue burden on disabled individuals. We must get a medical note that not everyone can afford or access - and then if questioned by law enforcement may have to unmask while they assess the validity of our exemption. Covid can infect in seconds - if you’re immune compromised you can’t take that risk.

Medical exemptions also ignore the fact that disabled people don’t live in a vacuum. We have family, friends and caregivers who need to mask to avoid bringing COVID home to us.

And what about people who need to mask to avoid pollen, chemical scents or wildfire smoke? They won’t be able to either under this new bill.

Masks are politically unpopular right now - even though they should never have BEEN politicized. They’re a medical tool that’s needed in an airborne pandemic - especially now that most other tools have been dismantled. Making them illegal is discriminatory and reeks of ableism & eugenics.

Perhaps the most problematic part of the bill is the language that states that any member of the public can request you remove your mask. Best case this means private owners may ask you to remove mask for identification purposes - worst case anyone in public could legally start harassing and haranguing someone until they take off their mask. Imagine if we passed a law that allowed someone to demand another person abandon their wheelchair? We can’t let this happen.

I urge everyone to call their local officials and tell them they won’t stand for the banning of medical masks with or without an exemption. If you don’t live in North Carolina you can still call and say you will never visit or spend a single dollar in the State if this bill passes. We should ALL be pushing back because if this passes it will end up in other States - and it will embolden those who seek to harm people who are still masking and/or disabled. We need to say “enough is enough” and demand that we keep a critical tool to keep ourselves safe from COVID and other diseases. Together we can turn the tides on this but we have to get loud, work fast and make sure the powers that be know we see this for the ableist discriminatory garbage it is.

My original piece on the mask bans and eugenics is here for anyone who wants to read it: https://disabledginger.substack.com/p/we-are-witnessing-real-time-eugenics

I’m also attaching a screenshot of the bill as it currently stands so people can read the revised language for themselves. It’s NC HB 237

#CovidIsAirborne #CovidIsNotOver #CovidCautious #ChronicIllness #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #NorthCarolina #directaction #MaskBans

yes that’s definitely part of it. What’s interesting is I ...

2024-06-06T03:40:50Z

In reply to nevent1q…4hgd
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yes that’s definitely part of it. What’s interesting is I still see a lot of othering happening with covid but it’s mainly the vulnerable & elderly instead of homosexuals and drug users (the way it was with AIDS). I think whenever there’s strong government and public health messaging that “only” a certain group needs to worry… we will have a terribly difficult time controlling transmission.

POTS has significantly impacted my quality of life. It makes ...

2024-06-06T03:01:19Z

POTS has significantly impacted my quality of life. It makes seemingly simple activities nearly impossible & causes crushing fatigue.

I’ve had a number of bad falls & faints that have left me injured - and as a result have learned many tips & tricks to keep myself safe.

Dysautonomia is an umbrella term for conditions that cause malfunctioning of the autonomic nervous system - which is the system that controls all unconscious processes. Things like breathing, blood pressure, heart rate & temperature regulation.

POTS stands for Postural Orthostatic Tachycardia Syndrome and is the most common presentation. When a healthy person stands up - their blood vessels constrict & send blood upwards to the brain. In POTS this function is impaired.

When someone with POTS stands up - the blood pools in the lower half of their body. Their heart rate increases in an attempt to force blood up to the brain. This can leave them sweaty, breathless, dizzy & nauseous - and sometimes they faint.

The tachycardia that comes with POTS can significantly decrease overall quality of life. I tell people to think of their most difficult cardiac workout & how hard they have to push their body to get their heart rate into a fat burning zone.

Now imagine that happening when brushing your teeth or drying your hair. Imagine feeling like you’re running a marathon every time you try & stand up. It’s incredibly disconcerting and exhausting because we are basically getting a cardiac workout whenever we’re upright.

When POTS episodes become more severe - a patient will start to faint. I used to get early warning signs like blurred vision, nausea and headache… signs that my body needed me to sit immediately or it was going to force me to the ground.

These days I faint with very little warning - a combination of worsening tachycardia coupled with dangerously low blood pressure. But during the “warning years” I learned a lot of tips & tricks to stay safe & conscious.

First - if you feel faint you NEED to sit down. Laying down is preferable. It took me a long time to stop being embarassed about this & just sit down in public no matter where I was. I learned the hard way that if you don’t do it voluntarily - your body will force you.

Increasing fluid & salt intake helps a ton. I’m never without a bottle of water & salt tablets. If extra symptomatic I find drinking 500ml of ice cold water as quickly as possible can stave off a faint. Otherwise sipping water & electrolytes slowly throughout day works best.

Compression socks & abdominal binders make a big difference. When I got my first pair of compression socks I was covered in sweat & breathless from fighting to get them on. Solution? Put them on first thing in morning before you get out of bed! Your legs will be less swollen.

Speaking of bed - if you elevate the head of your bed it’ll help your body be less shocked by gravity when you get up in the morning. I sleep with head elevated & spend the rest of the day with my legs elevated as much as possible.

Keeping your legs & core strong is also important. While dysautonomia is not caused by deconditionning - losing muscle & strength can make it worse. If your legs are strong you can contract the muscles & have them do what your blood vessels are failing to do. 1/2

#CovidIsAirborne #CovidIsNotOver #CovidCautious #ChronicIllness #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #ChronicIllness #POTS #MCAS #Dysautonomia

Exercising with POTS can be a challenge - but there’s loads of ...

2024-06-06T03:01:19Z

In reply to nevent1q…uvt3
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Exercising with POTS can be a challenge - but there’s loads of activities you can do while horizontal. Ankle pumps, calf raises and butt squeezes have helped keep my legs strong without exhausting my heart. Swimming can be great for those who tolerate it.

Heavy meals high in carbohydrates can trigger tachycardia - so where possible I eat smaller meals with higher amounts of protein & fat. With MCAS mixed in this gets extra challenging but it’s worth the effort to avoid the post carb crash.

If you are experiencing severe tachycardia and dizziness - the best position to be in is legs up the wall. I will lay this way and put an ice pack on the back of my neck which helps to lower the heart rate quickly. Deep breathing & vagus nerve exercises help as well.

Standing still is always harder than walking. When we walk the motion keeps blood flowing. When standing still it pools faster & you get symptomatic quicker. Some of my worst fainting spells were after long waits in line or being on public transit unable to get a seat.

I found that learning creative ways to shuffle my weight in cramped spaces really helped reduce those episodes. If stuck in a crowded line I would stand on one leg or in yoga poses that engaged my leg muscles & kept the blood pumping.

It’s an awkward thing to do and people did sometimes stare - but what I learned over the years is they stare far more if you faint and an ambulance has to be called. So I put strangers staring out of my mind & stood whatever way resulted in the least amount of symptoms.

Remember that it’s always ok to sit down. It’s ok to take a break. You’re not being rude or weak - you’re respecting the limits of your body. Most people never have to think about their autonomic nervous system because it functions properly without effort.

As a result most people can’t understand the incredible difficulty of managing a malfunctioning autonomic nervous system. But the good news is it CAN be managed. These lifestyle tips make a big difference - and there’s a number of medications that can help as well.

Join patient support groups, find online communities that can help & adapt these tips to suit your personal circumstances. Your body will thank you. And never be afraid to lay down - wherever you are! Embrace the horizontal!

in some cases not even when they’re going to die sooner rather ...

2024-06-05T09:18:56Z

In reply to nevent1q…4k5j
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in some cases not even when they’re going to die sooner rather than later! In Canada it seems it’s being proactively suggested to disabled people who aren’t terminal & could have significant quality of life gains with better treatment. But they’re offered death instead. Truly awful.

exactly. I find most people either think we’re exaggerating how ...

2024-06-05T09:18:02Z

In reply to nevent1q…9cyw
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exactly. I find most people either think we’re exaggerating how sick/limited we are OR they’re certain if it’s that bad for them the doctors will just fix them. They’re never considering they could end up permanently sick & unable to live the way they used to.

I’m not American but I’m also in the murdered third and ...

2024-06-05T04:55:39Z

In reply to nevent1q…p8rl
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I’m not American but I’m also in the murdered third and raging with you. I’m desperately trying to wake more people up AND get them to care before it’s too late for us and those like us.

whoa whoa what? I would love more information on this! My throat ...

2024-06-05T04:53:18Z

In reply to nevent1q…ycye
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whoa whoa what? I would love more information on this! My throat is ALWAYS sore and dry and most masks seem to make that worse.

I frequently hear people say that having to take Covid ...

2024-06-05T03:37:06Z

I frequently hear people say that having to take Covid mitigations is “too hard” or interferes with their ability to “live their lives.” The reality is you can do almost ALL activities in a way that is covid safe-er. People just have to want to put in the effort.

I became disabled before the COVID pandemic and my illnesses have cost me the ability to do MANY things I used to take for granted. Suffice it to say if wearing a respirator or cleaning the air could have changed things for me - I would have happily done it.

Here’s a small list of what I’ve lost:

- being a theatre critic & attending galas and red carpets
- travel
- seeing family & friends
- eating most food
- drinking anything but water
- sleeping through night
- ability to be upright/walk unassisted
- ability to wash hair unassisted
- ability to sit outside & enjoy fresh air
- ability to cook, clean & care for myself
- dating & intimacy
- yoga
- feeling safe in my body (the constant threat of anaphylaxis & cardiac arrhythmias will do a number on your overall safety& comfort)

On top of those things - society’s unwillingness to take Covid seriously has robbed me of safe healthcare & homecare, dignity & autonomy. In its place is medical assistance in dying. Disabled people who are “high cost health users” are finding they’re offered euthanasia more frequently than actual care to improve quality of life. My life as I knew it is over.

I don’t say this for pity - I’ve spent years working on acceptance & carving out a life that allows for joy amidst the suffering.

I simply want people to understand how much their lives can change - and how precious their health is. Once it’s gone you can’t always get it back.

#CovidIsAirborne #CovidIsNotOver #CovidCautious #ChronicIllness #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #ChronicIllness #POTS #MCAS #Dysautonomia

yeah she was a huge figure in the movement. Regularly ...

2024-06-05T02:34:23Z

In reply to nevent1q…jsmx
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yeah she was a huge figure in the movement. Regularly interviewed, had her own website/blog advising other HIV+ mothers… her high profile might be why they came so close to prosecuting her for Eliza’s death. I suspect she was responsible for quite a few children’s deaths unfortunately.

yes thanks so much!

2024-06-05T02:09:56Z

In reply to nevent1q…c2lr
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yes thanks so much!

you really can’t make it up. Do you know if AIDS denialism ever ...

2024-06-04T23:34:46Z

In reply to nevent1q…qy59
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you really can’t make it up. Do you know if AIDS denialism ever gained much ground outside of the U.S.? It’s scary how Americans seem far more likely to go for this rhetoric than other countries (but that’s just my own personal observation - I could be wrong)

this is incredibly kind - thank you. I’m quite ill so it’s ...

2024-06-04T22:22:29Z

In reply to nevent1q…l8np
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this is incredibly kind - thank you. I’m quite ill so it’s taken alot to get it off the ground - I was primarily writing in that “other place” and a number of people pointed out that I shouldn’t be just giving me content to you know who for free. Better to have my own platform somewhere but the learning curve has slowed me down.

what a great find! Can I share that other places? I clicked on ...

2024-06-04T22:21:14Z

In reply to nevent1q…fl2f
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what a great find! Can I share that other places? I clicked on the banner so I could read their full page on AIDS and yikes. Anyone know if they still believe that?

I feel like when everyone who led your movement dies it’s a pretty good sign the movement is misguided. But I’m relying on logic which seems woefully absent these days.

you’re welcome - thank you for reading. I’m childless myself ...

2024-06-04T09:41:41Z

In reply to nevent1q…20z3
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you’re welcome - thank you for reading. I’m childless myself but I was sick as a child and I know how miserable it was - I feel like kids are going to grow up with tons of preventable health issues and have very tough questions for the adults in their lives.

that’s interesting - thank you for sharing! It absolutely makes ...

2024-06-04T09:39:56Z

In reply to nevent1q…mfc0
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that’s interesting - thank you for sharing! It absolutely makes sense that it should be illegal but so many things don’t make sense any more.

jails should be a priority for clean air. So much disease spread ...

2024-06-04T04:56:00Z

In reply to nevent1q…asus
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jails should be a priority for clean air. So much disease spread and people who get no say in personal protection. I know they won’t be - but in a just & decent society they would be.

and people cheering when she announced it! What have we become?!?

2024-06-04T04:55:07Z

In reply to nevent1q…qlt2
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and people cheering when she announced it! What have we become?!?

some people are just completely incapable of caring about anyone ...

2024-06-04T04:35:07Z

In reply to nevent1q…rsfk
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some people are just completely incapable of caring about anyone other than themselves. Heck some people are incapable of caring about themselves too!

I know you can be charged with a crime for knowingly infecting someone with HIV but I’m very skeptical we will ever get there with COVID given it’s airborne. Too hard to prove where you got it. But when people purposefully cough on you in public or go into crowded places when they KNOW they’re positive? That really shouldn’t be allowed.

that’s incredibly disappointing. One of the saddest parts of ...

2024-06-04T04:12:07Z

In reply to nevent1q…3zlq
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that’s incredibly disappointing. One of the saddest parts of the covid pandemic for me has been watching more people find & embrace AIDS denialism. That movement had all but been completely quashed prior to the pandemic.

Denying the severity of Covid & how it’s transmitted has ...

2024-06-04T03:44:37Z

Denying the severity of Covid & how it’s transmitted has devastating consequences - especially for children.

I’m reminded of a prominent AIDS denialist who let her 3 year old daughter die and narrowly escaped felony charges.

A thread on denialism & how it can literally kill.

Christine Maggiore was a high profile AIDS denialist who was HIV positive but believed the virus didn’t cause AIDS. She blamed the HIV medications - and as a result refused to take them while pregnant and breastfeeding her children.

Her daughter Eliza became sick at 3 years old and died of an AIDS related pneumonia- without ever being tested for HIV. Doctors who weighed in on the case expressed concerns of negligence on behalf of both her parents & the pediatrians involved.

They explained that had Eliza been HIV+ her pneumonia would have been treated with a more aggressive antibiotic which could have changed the outcome. The police investigated Maggiore - but in the end the L.A. District Attorney declined to prosecute.

Christine did not change her stance and continued to promote her AIDS denialism - at one point bragging that at least 50 women had “come around to her point of view.” She literally lost her child and still couldn’t see past her dangerous anti science rhetoric.

How many children were needlessly infected with HIV and subsequently died of AIDS? We can never know for sure. People like Christine & other AIDS denialists preyed on people’s fear & their need to not be responsible for infecting their children. Easier to blame the drugs.

We’re in year five of a devastating global pandemic that is harming far more children than most people are willing to admit. We MUST look back and learn from history.

Denialism, minimizing and anti-science viewpoints are deadly.

Christine’s behaviour is frighteningly similar to the “exercise your immune system” crowd. They fight against clean air, refuse vaccinations & rally against masks. They blame “big pharma” instead of considering Covid may be more dangerous than they realize.

Christine encouraged other mothers to avoid HIV meds and “trust their immune systems” & it had devastating consequences. Now we see parents encouraging repeat Covid infections as they chase elusive herd immunity. Refusing MMR vaccines. Organizing measles & chicken pox parties.

Children will become disabled and die - and just like Eliza - they deserve to be protected. We need clean air in schools (and school busses) and better public health guidance on masking. We need people acknowledging that COVID is anything but “mild” in children.

It’s worth noting that Maggiore died three years after her daughter Eliza of AIDS related pneumonia…. But never publically changed her stance on HIV. Denial is powerful & cognitive dissonance a hard nut to crack. But children are counting on us. They need us to do better.

We can’t wait 30+ years to decide to start taking Covid seriously. History will not look kindly on adults who could have done more to protect children from the harms of repeated COVID infections. Just as it doesn’t look kindly on Maggiore and the AIDS denialism movement.

#CovidIsAirborne #CovidIsNotOver #CovidCautious #ChronicIllness #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #AIDSDenialism #CleanAir #Pandemic #PublicHealth

so honoured you included me - thank you! That may also be the ...

2024-06-04T03:15:51Z

In reply to nevent1q…vky0
_________________________

so honoured you included me - thank you! That may also be the first time my publication has been linked elsewhere (it’s quite new). Great and incredibly thorough article!

yes I often think of HIV and how you can be charged with a crime ...

2024-05-30T09:55:12Z

In reply to nevent1q…4qrj
_________________________

yes I often think of HIV and how you can be charged with a crime if you infect someone and didn’t disclose your status beforehand. Given the airborne nature of COVID I’m not sure we would ever get to that point though… it’s too hard to prove who gave it to you.

PSA for Long Covid folks experiencing mast cell issues for the ...

2024-05-30T04:35:08Z

PSA for Long Covid folks experiencing mast cell issues for the first time - anaphylaxis is not JUST airway issues. Anaphylaxis can impact all major body symptoms & you can be having an attack with NO skin or airway involvement.

My anaphylaxis is almost always cardiac & GI.

I find that many people (including some HCWs) still associate anaphylaxis with throat closing and hives/rashes. While that may be the typical presentation (especially for food allergies)… patients with MCAS are anything but typical.

My very first anaphylaxis experience started with a sore throat & flushing but no noticeable breathing difficulties. I had terrible diarrhea & stomach cramps, a very low pulse & was pale and woozy. I chalked it up to a bug and tried to rest it off.

I didn’t go to the ER until more than 48 hours later when the sore throat had become so severe I could no longer swallow fluids. At that point I still thought it was strep or tonsillitis & was shocked when triage whisked me into a code room after administering Epi

It turns out I had been in anaphylaxis the whole time - but my body exhibited the cardiac and GI symptoms first. The airway symptoms developed slowly so my body had time to adjust and I didn’t realize how swollen my airway was.

The chart I posted shows all the different ways it can manifest - and it’s important to be educated on the various presentations so you recognize anaphylaxis & can get immediate treatment. Even uterine cramps can be a sign. If respiratory involvement is absent but two other systems are impacted - that meets criteria for anaphylaxis.

I’ve been dealing with MCAS for years and I’m still learning all my triggers as well as the strange early warning signs my body gives me. Lately it’s been a hoarse voice, raised rash on shoulder & severe vomiting. Teeth chattering, violent shaking & slurred speech also common

I share my experiences in an attempt to educate people on the varied nature of MCAS attacks and the fact that anaphylaxis is not always sudden or obvious. Once identified it’s important to treat & be monitored for rebound or biphasic reactions.

Lastly if you have significant cardiac involvement with your MCAS reactions - it’s important to be aware of a relatively rare condition called Kounis syndrome. It’s an acute coronary syndrome caused my mast cells/allergic reactions.

It can cause spasms in the arteries of the heart and possible breaking off of plaques leading to coronary artery blockage. While considered rare - in recent years there’s been speculation it’s more common & simply under diagnosed and/or misdiagnosed.

I keep copies of all my EKG rhythm strips when I need paramedics or the ER for my MCAS reactions. It can be critically important to have them reviewed by an MCAS savvy cardiologist.

If ever in doubt - seek medical attention. Speak to your medical team about carrying an Epi pen and go to hospital if you have to use it. Even if you feel better - rebound reactions can be incredibly severe.

While MCAS can be an absolute beast to manage - medications, lifestyle and dietary changes can make a tremendous difference in quality of life. Patient support groups are an excellent resource for teaching how to identify & and eliminate triggers.

They can also provide emotional support which is critical as MCAS can be isolating & lonely. Remember you’re not alone & reactions aren’t your fault. Even the most careful patient can end up in anaphylaxis & we must give ourselves grace. It’s not our fault - it’s the disease.

#ChronicIllness #MCAS #POTS #Dysautonomia #MastCells #Spoonie #chronicallyill #LongCOVID

#CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #N95s #Ableism #CommunityCare #CovidIsAirborne #CovidIsNotOver #Histamine

My last tip is deep breathing and meditation. When a late night ...

2024-05-27T02:55:57Z

In reply to nevent1q…uqu8
_________________________

My last tip is deep breathing and meditation. When a late night MCAS attack hits - it can feel almost identical to a panic attack. This is because of the adrenaline that’s being released along with histamine & other mediators. It’s incredibly scary until you get used to it

It’s important to remember that it’s an MCAS attack & it WILL pass. Keeping the brain calm is integral to calming the body. If prone to anaphylaxis you should have a safety plan with your medical team - but in the absence of life threatening symptoms I focus on being calm

Meditation, deep breathing, repeating a mantra… all of these things can be helpful. I focus on the breath & remind myself over and over that I’m safe & calm. Eventually my nervous system gets the message and begins to calm.

Meditation did not come easy - and there were times it felt futile and impossible. But I can promise the more you practice it the more effective it becomes. Most nights it’s second nature & I calm faster than I did without it.

MCAS can be a very difficult condition to manage and is highly individualized - so just remember what works for me may not work for others. There’s a lot of trial & error that’s required & being patient and kind to yourself is key to success

Remember that flares aren’t your fault - and sometimes we can do absolutely everything “right” and avoid every trigger and still end up in a flare cycle. It will pass. Remind yourself that. Reach out to friends & online community for support. It does get better

Epilogue: I wrote this after a week of nightly flares - I hope it helps others know they’re not alone but it was also to remind myself that this WILL pass. I’ve been dealing with it for years and it still overwhelms sometimes. 2/2

a national delusion sounds right to me. Whatever small protection ...

2024-05-25T03:39:14Z

In reply to nevent1q…3t47
_________________________

a national delusion sounds right to me. Whatever small protection they offer is clearly outweighed by all the damage they do!

I really appreciate that explanation. Obviously I think people ...

2024-05-25T03:38:39Z

In reply to nevent1q…fwnl
_________________________

I really appreciate that explanation. Obviously I think people (and governments) need to adapt with the times and there’s something dreadfully wrong if you can open carry a gun but not wear a mask. But not much surprises me anymore!

sorry are we saying this is likely untrue ? Or just that they ...

2024-05-24T23:24:06Z

In reply to nevent1q…pss7
_________________________

sorry are we saying this is likely untrue ? Or just that they lean far left?

Seriously what the heck is happening in America? This article ...

2024-05-24T22:36:35Z

Seriously what the heck is happening in America? This article about abortion rights and fetal personhood is terrifying.

Women jailed for duration of pregnancy in horrible conditions. Women on life support forced to be incubaters against family’s wishes. Women charged with severe crimes for accidents while pregnant. Terminally ill women forced into c-sections. It goes on and on.

The overturning of Roe V Wade is very clearly not about JUST abortion. Women have no agency or control over their bodies anymore.

I would be genuinely terrified to become pregnant in States with these laws.

https://www.rollingstone.com/politics/politics-features/alabama-fetal-personhood-ivf-abortion-1235018366/

#WomensRights #DisabilityRights #Ableism #Pregnancy #Abortion #AbortionRights #roevwade #BodilyAutonomy #AbortionIsHealthcare #womenshealth

this is a great summary. I hear so often “I don’t care if I ...

2024-05-24T10:00:27Z

In reply to nevent1q…4mqc
_________________________

this is a great summary. I hear so often “I don’t care if I die” but as you said you try and bring up the possibility of disability and it does NOT go well. They act so brave in the face of death but they’re not considering all the other possibilities(and they probably don’t think they will die either - exception-itis is a real problem these days))

this is just… wow. I don’t even know when to begin with ...

2024-05-24T09:55:10Z

In reply to nevent1q…6fh4
_________________________

this is just… wow. I don’t even know when to begin with everything that’s wrong in this photo.

It’s all deeply sad. Will people have to make their masks into gun holsters to be allowed the freedom to wear them? I certainly hope not!

that’s the main reason I tried to show grace and patience - ...

2024-05-24T09:52:52Z

In reply to nevent1q…xfpt
_________________________

that’s the main reason I tried to show grace and patience - because they actually DID put in the effort. And I know many wouldn’t. They seemed genuinely frustrated and surprised at the lack of options - and my hope is that since they experienced it first hand perhaps they will be more understanding with the next disabled person they speak to.

I just can not comprehend how anyone could be ok with guns in ...

2024-05-24T04:49:31Z

In reply to nevent1q…d0rs
_________________________

I just can not comprehend how anyone could be ok with guns in public places but not an N95. There is no logic at play here whatsoever and it’s devastating to watch it play out and have all these freedom loving gun folks scream that it’s deserved.

I’m with you - I was shocked. I’ve come to realize there are ...

2024-05-24T04:39:49Z

In reply to nevent1q…upfy
_________________________

I’m with you - I was shocked. I’ve come to realize there are some people who just genuinely think that if you’re dependent on others for most activities of daily living (as I am) that naturally equals burden.

I don’t agree- I believe the people who help me do it because they love and care for me - but sadly not all people see it that way.

aww thank you! I’m in Canada but I appreciate the offer. It’s ...

2024-05-24T04:38:19Z

In reply to nevent1q…yqr7
_________________________

aww thank you! I’m in Canada but I appreciate the offer. It’s great when people realize that masking is for both people!

Canadian here so bear with me because I don’t fully understand ...

2024-05-24T04:23:36Z

Canadian here so bear with me because I don’t fully understand US gun laws (nor do I understand their attachment TO guns).

What I do know is whenever there’s a mass shooting someone will bring up stricter gun control and the Right wing gun lovers shout “my freedom! You can’t take away my right to protect myself!”

Yet we are seeing a U.S. State attempt to criminalize the wearing of medical masks in all public spaces. Something that is quite literally “personal protective tool”. Why doesn’t our freedom to protect ourselves from infection as much as their freedom to carry a gun?

I can’t see any scenario where someone else would be harmed by an N95 - the same is NOT true for any gun. Yet one is being criminalized and the other isn’t.

I sincerely hope we start hearing more people speak out against criminalizing medical masks if for no other reason than the violation of freedom and bodily autonomy. You don’t have to care about Covid to understand that some people need to wear masks.

It is a very sad example of the state of the world when a person can walk into a pharmacy or grocery store with a gun - but not wearing a medical respirator DURING A PANDEMIC

#CovidIsAirborne #CovidIsNotOver #CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #N95s #Ableism #CommunityCare #Eugenics #MaskBans

I’m immune compromised - would you mask for me? “No! Stay ...

2024-05-24T04:18:21Z

I’m immune compromised - would you mask for me?

“No! Stay home forever!”

I can’t stay home I need food - can I order in?

“Do it yourself! It’s entitled and privileged to get delivery! SURELY you can use a microwave!”

I’ve got a family member to help me.

“Don’t be a burden!”

I need the hospital so I’m going to wear a respirator.

“Haha that’s illegal now!”

This is genuinely how it feels to be a high risk disabled person in society right now. It’s not enough that the loudest voices won and governments basically dismantled all covid protections, reporting tools, testing etc… they still scream at us for trying to protect ourselves. We stay home and rely on gig economy & delivery services and we’re exploiting others. We ask people to mask and we’re tyrants. We try to mask ourselves and we’re mocked and teased and now at least one US State is actively trying to criminalize medical masks.

Yet whenever I bring up eugenics I’m shouted down and told I’m exaggerating - despite the fact that a large portion of society very clearly doesn’t want disabled people to survive (and they certainly won’t lift a finger to help us).

It feels terribly bleak and I wish the “my freedom” crowd would recognize that disabled people are the canaries in the coal mine. Governments won’t stop with us. We’re just unlucky enough to be first.

#CovidIsAirborne #CovidIsNotOver #CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #N95s #Ableism #CommunityCare #Eugenics #MaskBan

thank you so much. Really glad you’re doing better now & ...

2024-05-24T03:35:25Z

In reply to nevent1q…asm5
_________________________

thank you so much. Really glad you’re doing better now & that’s fascinating about your auto immune conditions. I guess the chemo took your immune system down a notch and settled those conditions too?

I find in general people don’t recognize a lot of the ways they ...

2024-05-24T03:34:30Z

In reply to nevent1q…pdlg
_________________________

I find in general people don’t recognize a lot of the ways they could be high risk for LC. It’s terribly disappointing.

MCAS is another big impediment to getting the vaccine - higher risk of injury and of course anaphylaxis

I also wish I knew why it’s so difficult for people. Just to ...

2024-05-24T02:43:21Z

In reply to nevent1q…ygqy
_________________________

I also wish I knew why it’s so difficult for people. Just to give love, be a listening ear… stop the judgement. That’s all many of us need.

they really are. Just complete denial about the state of ...

2024-05-24T02:41:21Z

In reply to nevent1q…wv69
_________________________

they really are. Just complete denial about the state of healthcare, disability services, social services etc etc

that’s a fantastic way of looking at it. I hope your clients ...

2024-05-24T02:40:51Z

In reply to nevent1q…q8qt
_________________________

that’s a fantastic way of looking at it. I hope your clients appreciate it!

exactly - people want things neat & tidy. They want ...

2024-05-24T01:48:03Z

In reply to nevent1q…jgsh
_________________________

exactly - people want things neat & tidy. They want solutions. They don’t like thinking that sometimes there aren’t solutions and people do fall through the cracks.

I hope eventually we have a society and world where people don’t fall through the cracks. But it’s a long ways away.

our friendship has dwindled considerably since then - though I ...

2024-05-24T01:40:01Z

In reply to nevent1q…746e
_________________________

our friendship has dwindled considerably since then - though I desperately hope she learned something from the exercise. she was so cocky and certain I just didn’t WANT to go into a home. I’m glad she saw for herself there are no options.

A few months ago a friend told me I needed to stop “being a ...

2024-05-23T23:24:47Z

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

A friend of mine made this fantastic respirator graphic with a QR ...

2024-05-23T22:28:32Z

A friend of mine made this fantastic respirator graphic with a QR code that links to the huge study on efficacy of masks & respirators that came out yesterday.

I love that’s it’s eye catching - but the best part is the QR code takes you straight to the study! He’s not on here (yet) but says people are welcome to save & share!

CovidIsAirborne #CovidIsNotOver #CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #N95s #respirators

I’m Canadian so I’m not the best person to ask - though I ...

2024-05-23T21:46:09Z

In reply to nevent1q…9rw2
_________________________

I’m Canadian so I’m not the best person to ask - though I will say that people have tried to use federal EMTALA law to target abortion bans in certain states - arguing that EMTALA should supercede the State law & doctors should be able to intervene when a pregnant woman’s life is at stake. And they lost. Which is horrifying.

In case anyone missed it - @npub1dcm…dgz4 dropped a HUGE multi ...

2024-05-23T21:04:21Z

In case anyone missed it - npub1dcm5984yyxeedt03w3apwqg6d00rgcaxsmaq6cx5gedunl9eutks2hdgz4 (npub1dcm…dgz4) dropped a HUGE multi disciplinary study on masks & respirators yesterday.

This study involved people from all over the world and tackled everything from are masks effective against COVID (spoiler -
They are), why were there bad RCTs saying the opposite and what were their flaws, what are the sociological barriers to masking (with input from Deborah Lupton (npub1fqg…4dal)).

It was exactly the kind of gold standard, irrefutable study on masks and respirators that we need to counter the “masks don’t work” crowd. Unfortunately I realize many of them won’t ever read it - but it still feels wonderful to see it laid out so clearly.

If any of the other contributors are on here - please drop a comment so I can find & follow you!

https://journals.asm.org/doi/10.1128/cmr.00124-23

#CovidIsAirborne #CovidIsNotOver #CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #N95s

you’re welcome! Yes I’ve asked friends to just say things ...

2024-05-23T09:41:08Z

In reply to nevent1q…us3r
_________________________

you’re welcome! Yes I’ve asked friends to just say things like “what’s going on today?” I prefer that so much more!

I think it would… but not many legal experts have weighed in. ...

2024-05-23T09:39:00Z

In reply to nevent1q…38dh
_________________________

I think it would… but not many legal experts have weighed in. It would probably end up being a situation where someone is arrested & charged and fights it in court using the ADA. But their life could easily be ruined in the process.

it really feels that way sometimes. I’m just disgusted by the ...

2024-05-23T09:38:03Z

In reply to nevent1q…nuec
_________________________

it really feels that way sometimes. I’m just disgusted by the whole thing. No one should be denied personal credit protective equipment

it’s incredibly sad that this wouldn’t even surprise me at ...

2024-05-23T09:31:30Z

In reply to nevent1q…uxzh
_________________________

it’s incredibly sad that this wouldn’t even surprise me at this point. Someone replied to my post on another site and basically said disabled people shouldn’t expect any help unless they can show what they have to offer. If they have nothing to offer then too bad. It’s such a gross and transactional way of thinking.

I’m so sorry! Are you doing better now? I’ve had a few people ...

2024-05-23T09:26:43Z

In reply to nevent1q…r84s
_________________________

I’m so sorry! Are you doing better now?

I’ve had a few people respond and share similar experiences with cancer … in my life I’ve found people more accepting of cancer and terminal illnesses versus chronic but non terminal - but that’s of course just my anecdotal experience. I was just reading the other day how many men leave their wives when they receive a cancer diagnosis … it was incredibly disheartening. Very sad the expectation is that he would leave.

North Carolina proposed a bill that would turn people wearing ...

2024-05-23T04:34:30Z

North Carolina proposed a bill that would turn people wearing medical masks into criminals.
The disability community are rightfully angered & protesting against it.... But non-disabled people should be equally outraged.

Everyone needs the right to protect their health.

The proposed bill would make wearing a medical mask in public a class 1 misdemeanour - and they are trying to remove the exemption to wear one if you’re vulnerable or high risk.

When I first heard about this I said I was worried they were specifically targeting the medical exemption as a way of passing a hugely problematic bill with a built in “gimme" for the disability community. They would eventually leave medical exemption in place to "placate" us.

It's a psychological tool meant to distract or scare you so that you end up thinking they've done you a huge favour. Similar to how people are often overcharged with more severe crimes to pressure them into taking a lesser plea.

By targeting the medical exemption they've created an environment where people MAY see it as a "win" if they agree to leave the exemption in place. The problem is that the world has changed since Covid and this will no longer be a win.

Medical exemptions are highly problematic.
They require a doctors note when not everyone has a doctor who's willing to write one, not everyone can afford one, not everyone has insurance that will cover one.
Also vulnerable people don't exist in a vacuum.

We have family & friends, caregivers and other people who are in our lives and represent a potential point of infection.
Under a medical exemption policy people who share a household with a vulnerable person would not be permitted to mask.

Lastly - we need to acknowledge there's value in being proactive with your health.
Masking to avoid repeated covid infections, exposure to wildfire smoke or pollen is a smart thing to do. Many non vulnerable people simply want to remain that way.
They don't WANT to get sick

This law would turn them into criminals. Just because they're smart enough to recognize that health is our greatest asset and something that should be protected at all costs.

So while I agree we can absolutely celebrate the fact that some Republicans are saying they're committed to keeping the medical exemption in place - let's NOT lose sight of all the people that policy will leave behind.

Let's not lose sight of the fact this could very well have been a strategy the entire time so the disability community would back down & take this draconian and cruel mask ban as a "win"

Also let's be realistic about what it'll look like for a vulnerable person out in public in a mask WITH a medical exemption. Law enforcement stops them & asks to see it. Do you really think they will let them keep their mask on while they assess its legitimacy?

There's an excellent chance the high risk individual will be forced to unmask and risk infection. Marginalized & POC will be stopped & harassed far more often. Situations will escalate & at some point it's inevitably going to cost someone their life.

Keep pushing back. Make noise. Tell politicians that medical masks should never be criminalized. They're a personal protective tool that ALL people deserve access to. If you're not masking - now is the time to start. Normalizing masking makes these bills harder to pass.

#CovidIsAirborne #CovidIsNotOver #CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #ableism #Eugenics #MaskBans

thank you - me too. It would make things much better for so many ...

2024-05-22T09:48:36Z

In reply to nevent1q…9uss
_________________________

thank you - me too. It would make things much better for so many of us if people would understand this & behave accordingly.

so sorry you’ve experienced this too! The “if it’s that bad ...

2024-05-22T09:45:15Z

In reply to nevent1q…82dv
_________________________

so sorry you’ve experienced this too! The “if it’s that bad they would fix you” is one of the most infuriating things to me. Not everything can be fixed and not all doctors make the right call. This is life - just because you want something to be a certain way doesn’t mean it will be!

Being disabled & chronically ill is beyond lonely. Far too ...

2024-05-22T04:30:55Z

Being disabled & chronically ill is beyond lonely. Far too many people in society can’t comprehend illnesses which are permanent & unrelenting but don’t necessarily kill you. As a result they EXPECT you to get better.

When you don’t - they abandon you.

People understand illnesses like cancer - you get sick & get better or you die. They can support & empathize with that.

When it comes to chronic illness … that support & empathy dries up. The idea that someone could be sick FOREVER & not die is too much for people.

I understand it’s not something anyone wants to think about. The idea of being sick forever with no end in sight is understandably scary. But just because something is scary doesn’t mean it’s not real. It doesn’t mean it’s fake or an exaggeration.

The unwillingness of people to confront their own frailty - to consider the possibility that they could lose their health one day - leads them to isolate those of us who are chronically ill. They disappear us so they don’t have to face it.

It often starts with comments like “I’m sure it can’t be THAT bad” or “you just need to try harder”.

Gaslighting remarks that are disguised as kindess when in reality they tell us you don’t believe us. Then people start asking “are you better YET?”

That one really hurts because the emphasis is always on the “yet”. It’s as though our still being sick is an inconvenience to THEM. No thought is ever given to how awful it makes us feel to have to explain for the millionth time that we aren’t ever getting better.

These exchanges go on for awhile until they succeed in either pushing us away - or they inevitably ghost us. But the result is always the same. Friends and family lost from our lives & us facing our illness alone.

This loneliness drives a lot of people to look for community on social media. It’s an invaluable place to connect because we can find like minded people & engage without ever getting out of bed. We don’t have to shower or try and look “our best”. We just have to show up.

Unfortunately there’s people who seek to tear down the connections you make online - either by invalidating them or by incessant trolling which render it nearly impossible to use the website. This has gotten much worse since Covid.

All of these things lead to an isolated and lonely life - one where there’s a lot of longing. I long for someone who will show up for me & help me without judgement. Without dismissing my concerns or insinuating I’m not really “that sick”. I long for safe & loving connection.

I worry that Covid has only intensified the loneliness for the vast majority of chronically ill people. Those who are desperate to believe Covid is over NEED us disappeared. We are a constant reminder of the fact that they’re risking their health - and they don’t like it.

I understand why they don’t want to face us. No one wants to face a reality of lifelong chronic illness. But turning away won’t save you. We can HELP protect your health. We can help build better safety nets so if you ever DO become sick you won’t struggle the way we do.

Plus you can help us. We’ve already lost so much. Our health. Our independence. Our agency in many healthcare decisions. Our ability to safely access public spaces. Our friends and family.

We need allies we can count on to be there to support us. Who believe us.

My ask of all people tonight is to take a moment and think of the sickest you ever were - whether that be a flu or Covid, food poisoning or surgery recovery - and imagine feeling that way for the rest of your life. Imagine knowing there was no end in sight.

Once you imagine that - consider how hard that reality might be in a world that’s screaming at you to “just stay home” or blaming you incessantly for covid mitigations. In a world that doesn’t even think you deserve safe access to healthcare. In a world embracing euthanasia.

Now reach out to a disabled or chronically ill person in your life. Tell them they’re cared for. Ask if they need any support. If you don’t know any disabled people …
Find an account on here & follow and amplify them. I promise we need that support now more than ever.

#CovidIsAirborne #CovidIsNotOver #CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #ableism #Eugenics #kindness #Community #Loneliness

The idea that it’s entitled for a sick & vulnerable patient ...

2024-05-20T09:55:14Z

The idea that it’s entitled for a sick & vulnerable patient to request a HCW to mask… is a perfect example of how little people think of disabled people. It’s not entitlement to want to avoid worsening illness and death. We need to be protected.

#CovidIsAirborne #CovidIsNotOver #CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #ableism #Eugenics #MaskBans

The proposed mask ban in North Carolina will turn people who are ...

2024-05-18T23:51:49Z

The proposed mask ban in North Carolina will turn people who are trying to protect their health (and the health of others) into criminals.

While the action of the government doesn’t surprise me - the response of the public does. I expected most people to find this type of law appalling - and instead I’m seeing people celebrating what I consider to be eugenics in action.

I wrote about the proposed bill, the public response and the disability community’s right to survive:

https://open.substack.com/pub/disabledginger/p/we-are-witnessing-real-time-eugenics?r=19dk2e&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true

#CovidIsAirborne #CovidIsNotOver #CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #ableism #Eugenics #MaskBans