People make insensitive comments about disability ALL the time. Implying we’re “lucky” that we don’t have to work, that they wish they could “lay around” etc.

They don’t understand the “crip tax”.

It’s expensive being chronically ill. And no one teaches you HOW to cope.

Even if you’re fortunate to have good insurance and/or live somewhere with universal healthcare (like Canada)… the costs add up quick.

Take Canada for example - seeing a doctor is covered - medications, dental and vision aren’t.

If you have complex chronic illness - prescription costs alone can quickly spiral out of control.

Even if you have private coverage - many things aren’t covered. Almost half of what I take wouldn’t be covered by insurance - even with specialist prescription.

Other costs people don’t consider:

💰 Special diet (mine is incredibly restrictive)

💰 Medical and first aid supplies, home healthcare supplies etc

💰 Delivery, homecare, cleaning services, transportation, mobility aids.

If you have MCAS and/or Long Covid or are covid cautious … you can add a whole bunch more expenses to the list:

💰Air purifiers
💰Specialized body & oral care products
💰MCAS safe cleaning products
💰Respirators
💰Rapid tests

The bottom line is being disabled is expensive. Losing your autonomy and independence costs money.

Juggling everything we need to stay alive and maintain a baseline while also trying to ensure we keep a roof over our heads is a full time job.

As if that wasn’t enough - we also have to chase down doctors, follow up on tests, deal with medical gaslighting, covid risk in hospitals, HCWs who won’t mask etc. We do this while suffering the pain of being abandoned by family, friends & society.

It’s not lucky. It’s hard.

There’s other costs people never even consider - like the cost of relying on delivery services that more often than not get it wrong.

In my case - my diet is so restrictive that if a shopper brings the wrong item - it’s going to go to waste.

When you only have about ten safe foods and your delivery screws up five of them - you’re either going to go hungry for a week OR you have to place another order.

But orders have minimum spends and you have to tip a shopper twice. That adds up FAST.

I can’t tell you how much I miss being able to just pop to the store and get my own groceries. Grab a single ingredient without having to meet a minimum spend.

Many non disabled people see grocery shopping as a chore - I see it as a luxury I no longer have.

These are the types of issues you have to deal with when you become disabled that NO ONE teaches you about. 1/2 🧵

#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 #criptax

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“You don’t look sick”

“Life is for living not laying in bed”

“If you were really THAT sick you would be getting help.”

“If you’re really THAT sick you should be in a care home/hospital”

“Aren’t you better YET?”

“If you’re THAT sick you would be dead”

If you live long enough with chronic illness - you’re gaslit because you haven’t died.

We aren’t rewarded for surviving - we’re punished.

People can’t fathom the grey that we exist in. They understand acute illness and they understand terminal illness - they don’t understand severe chronic illness where the suffering is relentless and extreme but won’t necessarily kill you.

I’m convinced this isn’t because they CAN’T understand it - but rather they simply don’t want to. It scares them because it makes them realize that life is fragile. That they too could end up getting sick one day and just never getting better. Abandoned by the medical system, friends and family and essentially left to rot.

It’s awful how little compassion we give to people suffering from these conditions - and I try and raise awareness about it in the hopes people will think before they judge us.

https://www.disabledginger.com/p/just-die-already

#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

Judge dismissed lawsuit filed by Disability Rights New York on behalf of two disabled individuals opposing Nassau County mask ban.

Reason? “There’s a medical exemption - you’ll be fine.”

If they thought they would be “fine” we wouldn’t need lawsuits!

This belies logic. We all know that not everyone will be considered “legit enough” to be masking. It’s not right to allow law enforcement to determine who can and can’t wear a mask.

This will also give police yet another reason to stop and harass people of colour.

For more on mask bans and why medical exemptions are NOT the answer: https://www.disabledginger.com/p/nassau-county-ny-makes-masking-illegal

Original news article on the lawsuit https://apnews.com/article/mask-ban-long-island-new-york-78dc727b3fe212014ef4371f3ad07417

#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

I just had my first doctor tell me to ‘take off your mask so I can see your pretty face.’

I was there for an issue with my FEET. There was absolutely no reason for me to remove my mask.

I don’t know how much of this was misogyny and how much was related to pandemic politics (ie perhaps this doctor resents having to mask)… but I was incredibly uncomfortable with his remark.

I declined - as politely as humanly possible - and the whole tone of the appointment changed. I didn’t even get a diagnosis - I was told that the issue on my ankles was ‘not as ugly as I think’ ( I didn’t think it WAS ugly) and sent on my way.

I waited 18 months for this appointment - and the ‘issue’ is likely related to my vEDS and possibly severe. Multiple other doctors have expressed concern but said I had to wait for a specialist.

When patients are treated this way - it causes harm. It causes a distrust of the medical system. I can’t just ‘get a second opinion’ when the first one took 18 months.

When I’m less angry I may write an article about this - because patients (especially female presenting) deal with this crap FAR too often.

In the meantime - this experience underscores why we must always have an advocate with us in healthcare settings. It shouldn’t be this way - but it is.

My article on how to be the best possible advocate for a disabled patient: https://www.disabledginger.com/p/how-to-be-an-effective-advocate-for

#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

When I was a little kid - I knew I was “different”. I didn’t know WHY - but I didn’t want to play with other kids. I begged my parents not to make me do sports, gym or extra-curricular activities. I spent weekends sleeping instead of going to parties or watching Saturday morning cartoons.

Kids who develop chronic illness or disability early in life won’t necessarily KNOW they’re sick. They’re just learning how to express themselves - and if the symptoms started young they can’t possibly know it’s not “normal.” All too often they’re pushed to do things that are harmful to them - because adults assume they’re faking or attention seeking.

In my case it turned out I had vEDS - the most severe form of Ehlers Danlos syndrome. Which is why I was in pain all the time. Why I was constantly injured, sick and exhausted.

I didn’t even realize I was sick until university - living with other kids my age was a shocking wake up call. Seeing what they could do versus what I could do made abundantly obvious that my “different” was actually some sort of serious health challenge.

It took almost two more decades to finally get diagnosed.

I wrote about my struggles to realize I was disabled in a personal essay about libraries. It might sound strange - but my local public library became my safe haven. It’s where I went to rest, recharge and avoid bullying and judgement. Books never let me down and they helped me explore life in a safe and accessible manner.

What a gift that was: https://www.disabledginger.com/p/libraries-my-safe-haven-as-a-chronically

#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 #booknerd #libraries #bibliophile

Disabled and high risk people aren’t safe anywhere because of people & stories like this one.

Even those who know & love someone vulnerable refuse to take precautions.

They don’t isolate or mask when they’re sick. They’re knowingly exposing vulnerable people and don’t care.

Perhaps the most frustrating part is that sometimes - in a very blue moon - a person will recognize and be grateful they didn’t expose YOU. If it’s someone who knows and loves you they will express relief that they didn’t get you sick.

But they can’t extend that compassion to anyone else in society. They act as if YOU are the only vulnerable person in the world.

https://www.disabledginger.com/p/covid-4-years-in

#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