🎉 Today marks my 33rd birthday! 🎂 Although I spent the day resting while my mom recovered from knee surgery, we celebrated a bit yesterday. We picked up food from a local steakhouse, Trail Boss Steak and Grill. While the steak was a bit tough and the truffle fries weren't quite right, the steak had great flavor, and I really enjoyed the gouda mac and salad! 🍽️

For the past several weeks, I've been sleeping in the recliner in the living room because my current wedge pillow is too firm, causing me to slide down when I lay on it. This makes it hard to find a comfortable position in bed, even with multiple pillows. Several of my health conditions improve if I sleep on an incline. My sister Lacie gifted me a new wedge pillow, which is much softer and should help me sleep comfortably in my bed again. It was one of the more expensive items on my wish list, so I wasn't expecting to receive it given her financial struggles. Her generosity means so much to me. She also gave me a fidget cube, which I already had, but that's okay.

I also received some gift cards, which I'm planning to use for an external hard drive and a few other computer essentials. A special thanks to my pastor, who's sending me a better USB hub and Bluetooth dongle as a Christmas gift, arriving on the 5th. Feeling grateful for all the love and support! ❤️

#Birthday #Grateful #Family #TechGifts #ChocolateLover #Foodie #Comfort #ChronicIllness

Before you tell a disabled person that they need to “just make the healthcare worker mask”… please understand the imbalance of power that exists in hospital settings.

We can’t “just make them” do anything. If they refuse -our options are to take the risk or go without care.

There’s little recourse when a HCW refuses to mask - there’s almost NO recourse that exists in the moment.

You can file a complaint after the fact - but if the care you require is urgent or an emergency - that won’t help you

Imagine you’re taken to the emergency room with an urgent (or life threatening) issue. The doctor comes in and refuses to wear a mask.

Do you walk out? Throw a fit? These are not good options

Even if you manage to keep your composure and strongly advocate for them to reconsider - the longer you argue the more potential virus you’re being exposed to.

The more you “annoy” the staff - the greater the odds of retaliation or reduction in care.

This isn’t like telling a friend or a colleague to mask. The dynamic is completely different.

HCWs have the ability to help you or harm you. You want them on your side.

A note in your chart indicating you’re anxious, difficult, non compliant etc can follow you around and impact all your care going forward. Getting charts corrected and notes removed is a time consuming and difficult process

As a result many patients don’t push the issue. They delay medical care as long as possible and then just cross their fingers they will get a compassionate HCW when they do finally go.

These delays can also cause harm - and shouldn’t be necessary.

Hospitals have never been terribly safe places. They’re where the strongest and most resistant bugs thrive. They’re also where the sickest and most vulnerable people are.

At least before Covid it felt like hospitals were TRYING to prevent infection.

These days it’s as though any amount of infection control is seen as weak. People are actually bragging about how many times they’ve had Covid or about the risks they’re taking with their health. Staff aren’t masking even around babies, cancer & transplant patients

We have to change course. Our healthcare systems could barely handle the amount of chronic illness they were facing before Covid - they certainly can’t handle the constant influx of disabled patients and staff that Covid is causing.

This is why we need mandatory masks in healthcare settings. The responsibility to keep themselves and others safe should NOT fall on the vulnerable patient.

Many are unable to advocate for themselves - and others are unable to mask.

Mandatory masking protects everyone

Lastly - the solution to this problem should not be “don’t go to the hospital”. It’s not right to make ANY patient feel like they’re wrong for seeking care. Like they’ve somehow “failed” if they end up with Covid.

Until you’re facing a life threatening emergency or serious health challenges - you can’t possibly know what you would do.

Is it scary to go to the hospital right now? Of course. Is it also necessary? Absolutely.

Patients should never be blamed for needing care or for being unable to get HCWs to mask. The system is failing us - we aren’t failing each other.

If you need the hospital - you have all my love & support. It’s impossibly hard - and I will keep fighting to make it better.

As long as hospitals refuse to do what’s right to prevent COVID (hello clean air & mandatory masking)… the onus is unfairly on the PATIENT to avoid COVID.

My guide offers tips to reduce your risk of hospital acquired COVID (and other HAIs)

disabledginger.com/p/how-to-st…

#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

How to Stay Covid Safe When in Hospital

A guide to navigating the risk of hospital acquired Covid - as well as how to manage overall risk of nosocomial infections and hospital derived complications.

^{Broadwaybabyto (The Disabled Ginger)}

Ugly laws will be enforced in Louisville. Medical masks will be allowed at “police discretion”.

Police chief says: “We do have to look at behavior of person, what they're doing at time, those kinds of things."

I have a disability that makes me LOOK nervous. I “appear” like I could be doing something wrong. As a result these bans terrify me.

Disabled people have been begging others to mask for years because we were afraid of this exact outcome.

Failure to normalize masking means those of us who NEED to wear them are seen as outliers. Deviants. Possibly criminals. There’s a target on our back.

Medical exemptions are not the answer - they leave too many people behind.

Everyone should have the right to protect themselves from a deadly & disabling virus. Whether already disabled or not.

Banning masks and then saying that the police will determine who is “legit” in wearing one based on their overall behaviour? Its terrifying.

This is exactly HOW profiling occurs. These bans will disproportionately impact marginalized individuals and people of colour.

They could also impact someone with a condition like mine. I’m immune compromised and high risk for Covid complications - so I ALWAYS wear a fitted respirator when I’m outside my home.

I also have dysautonomia - a literal malfunctioning of my autonomic nervous system.

If I’m upright - I “look” nervous. I’m sweaty, shaky, twitchy and sometimes wobbling. I’ve been accused of being drunk in public on MANY occasions.

It’s not my fault - Dysautonomia means I can’t regulate my blood pressure, heart rate, sweating & even pupil dilation.

The things that cops are trained to look for and consider “suspicious” are all symptoms of my disease.

In the past - the worst thing I had to worry about was being accused of public drunkenness. Even THAT was scary for me.

Mask bans mean I could be arrested and charged with a crime. Just for trying to keep myself & others safe.

I tell this story to encourage others to speak up against mask bans. To mask up in solidarity and help us normalize them so they will be harder to ban.

To encourage people to stop assuming if you have a “legitimate medical reason” you won’t have to worry. We DO worry.

We need less judgement, assumptions and gaslighting and more allies. These laws are dangerous. They will lead to more death, disability AND division.

Many of us have difficulty convincing HCWs of our illnesses - what hope do we have with police?

Please - if you CAN mask - now is the time. You don’t have to wait for a mandate or permission. You can choose to say “enough is enough” & be part of the solution. Break chains of transmission. Protect the vulnerable. Don’t allow government to decide who is & isn’t expendable.

We all have power and agency and can choose to do the right thing. We don’t have to sit idly by and accept repeated covid infections & exclusion of disabled people from public life.

Let’s work together and stop these bans before it’s too late.

wdrb.com/news/louisville-polic…

#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 #UglyLaws

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sensitive content Click to open/close

Well, not the happiest intro but I’l cut/paste this here while I still remember then add a proper intro spoons allowing..⬇️

Please #boost and share to other platforms spoons allowing.

Seems I’m desperate enough to go to the media for help. Yes, the trapped woman in the article below is me.

My story: thecanary.co/global/world-anal…

More info on how to help:: buymeacoffee.com/halcionandon/…

I’ve tried every level of government and they simply won’t help. Please ask people if they have a spare room or somewhere to go. Maybe you have somewhere?

Is anybody a #DisabilityAdvocate? #SocialWorker? Need help.

Please don’t give me contacts for domestic violence orgs. They don’t help disabled people with housing & only offer counselling. Also, that list of disability advocates going around for #Melbourne #Australia (where I am) is outdated - there aren’t any in my catchment. So I’m looking for volunteers with some background.

Thanks for reading

#PwME #LongCovid #MECFS #Hypothyroidism #ChronicIllness #Neisvoid #NacissisticAbuse ##Housing #Dysautonomia #SocialWork #MedMastodon #PWLC #MutualAid
#HumanRights #Press

@mecfs @chronicillness @neisvoid
@disability @disabilityjustice @socialwork @dyssupport
@mutualaid

(If I’ve broken any rules in posting this, please let me know.)

Disability Rights New York has filed a class action lawsuit against Nassau County seeking an injunction to stop the enforcement of mask bans.

This is exactly the kind of action we need to see happen against discriminatory & ableist mask bans.

Law enforcement should not be the arbiter of who is “sick enough” to legally wear a mask. Many disabilities are invisible - and police are NOT doctors.

For more on the Nassau County mask ban and why it’s discriminatory - as well as why everyone (disabled or not) should be allowed to wear a mask - read my article here: disabledginger.com/p/nassau-co…

#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

med-mastodon.com/@luckytran/11…

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)}

I recently discovered Chronically Capable, a job board for people with disabilities or chronic illnesses: wearecapable.org

It’s mostly U.S. based for now, but there are ads for other countries, too. I want every one of us jobseekers to find the perfect position this year. 😊

Boosts are warmly welcomed to this post as are suggestions for other hashtags to include if I’m missing good ones.

#FediHired
#GetFediHired
#RemoteWork
#Hiring
#JobSearch
#Disability
#ChronicIllness

Chronically Capable | Flexible Jobs for the Chronically Ill

Chronically Capable is a platform that connects the 133+ million Americans who suffer from chronic illness with employers who offer remote work, great benefits, and flexible schedules.

^{www.wearecapable.org}

Gaslit as a patient with Ehlers-Danlos syndrome - a connective tissue disorder with many symptoms - Cortney Gensemer set out to publish about the disorder in top journals...and then send the results to the doctors who told her she wasn't really sick.

STAT's been doing some great work lately.

#medicine #genetics #ChronicIllness

statnews.com/2022/12/12/ehlers…

Revenge of the gaslit patients: Now they’re Ehlers-Danlos scientists

A generation of young patient-researchers are advancing the science of Ehlers-Danlos syndrome, which they had to fight to get recognized.

^{Isabella Cueto (STAT)}

#introduction post!

hey, I'm Dev, she/they. Huge #booknerd and creative, #esty shop owner, #vegan 8yrs ish, #chronicillness haver. these are hard to do so ill do a new one soon!

here's my links!
linktr.ee/devsea

devsea | Instagram, TikTok | Linktree

Linktree. Make your link do more.

^Linktree