This thread talks about how society sees disabled people as "less than" and how COVID made this worse. Many believe we need fixing or full care, but most conditions are serious, chronic, and can’t be cured. People often say hurtful things, doubting our experience, which makes us feel lonely. The writer asks for understanding, support, and for everyone to wear masks to protect our community.
“If you were really THAT sick you’d be:”
In hospital
Have full time care
Be getting ‘fixed’
Trying harder
Getting financial help
Dead
The list goes on & on.
We ARE that sick & none of these options apply because our systems are broken & ableism is rampant. 🧵/1
I’ve known for a long time that ableism runs deep in society. People have forever viewed the disabled as “less than”. Many view our disabilities as our own fault - a moral failing. Others would be perfectly fine excluding us from society forever. /2
The pandemic has put these attitudes front and centre. While people held these views before - many were capable of at least attempting to hide them. Of pretending that they valued us the same as non-disabled people. /3
That veneer of pretending is gone. Replaced with hatred that ranges from subtle gaslighting to outright eugenics. People will tell us to “stay home forever” before they will even consider taking a small step to keep us safe. They support euthanasia policies that target us. /4
It’s been heartbreaking to watch. For me personally… the hardest part is when it comes from people who are meant to love you. People who’ve been in your life for ages and witnessed your struggles first hand. Who now doubt how sick you are. /5
I’ve long suspected this is a trauma response - that people are scared of the fact that COVID is a very real threat to their long term health. Scared of the state of our healthcare systems and how ill equipped they are to manage chronic illness. Scared to become “like us” /6
Unfortunately this fear drives them to be cruel. To make us justify the severity of our conditions over & over again. They tell us “if it were really that bad then….” And proceed to pitch a solution that is at best laughably unattainable & at worst… outright eugenics. /7
I’m here to beg people to stop making those statements. Stop telling people who are fighting for their literal lives that IF they were “really” sick something would be different. Stop acting as though we’ve brought it on ourselves /8
You have no idea how much these comments hurt. How deeply your words cut. It leaves a mark every time & we begin to pull away. Many of us are leading incredibly lonely lives because we have to set boundaries to avoid these hurtful & ignorant comments. /9
The reality is - many conditions are incredibly serious and have no cure. They won’t necessarily kill you but they can destroy your quality of life. They can leave you completely dependent on other people for help - with little to no hope of improvement. /10
This reality is difficult for many to face - so they double down on the blame. It’s not our fault that these conditions have no effective treatments. It’s not our fault our healthcare systems are too strained to care for us. It’s not our fault we aren’t getting better. /11
“You would be getting fixed”.
Where to even start with this one? First - it’s rude to tell someone they need to be fixed. Second - it’s short sighted to be unable to realize many things don’t have a fix. We aren’t cars - we can’t just go to the shop for a new part /14
“You would Have full time care”. Full time care is prohibitively expensive. Only the most financially well off can ever hope to afford it. If you don’t have family to provide for you - you will be stuck relying on government support that can’t meet complex needs. /13
Let’s quickly break down the most common remarks.
“You would be in hospital”. Hospitals are designed to treat acute & life threatening conditions. They treat, stabilize & discharge as fast as possible. “Stable” does not equal “better”. It just means not imminently dying /12
“You would be trying harder”. We try SO hard. Most non-disabled people have no earthly concept of how hard we have to work to hold onto our baseline. The number of hours I spend in a day just to keep from needing the ER would astound most people. All I do is try. /15
“You would be getting financial help”. Are ppl really so out of touch that they think money is just handed to disabled people? If you’re fortunate to qualify for government assistance (which is very hard)… it’s not enough to survive. You don’t get more when you get worse /16
“You would be dead”. This is where people have landed with me recently - and I’m beyond incensed. When did it become ok to tell people that they’re effectively lying about the severity of their conditions because if they were telling the truth - they would be dead? /17
This is never - and will never - be acceptable. The human body is an incredible thing & it can compensate to endure tremendous amounts of suffering. With chronic illness this often happens slowly over time. Your body gets used to the pain & disease process and learns to adapt /18
In my case - I have severely low blood pressure. I’ve always had low pressure and when it started to worsen my body tried to cope. It finally stopped coping at a BP of 60/30. That number would put most healthy people in the ICU. Yet I’m at home alone trying to function /19
When it became that bad - no additional help magically appeared. I wasn’t granted a full time carer or admitted to hospital. I wasn’t given additional financial support to hire help. The ONLY thing that changed was it became unsafe for me to do activities of daily living /20
I’ve sustained two serious injuries from fainting, I’m having a very difficult time eating (you don’t have excess energy to digest when your BP is that low) and my brain doesn’t function unless I’m upside down. But I’m still here. I’m not dead. Because my body is compensating /21
I share this to plead with ppl to stop assuming you know better than a disabled person who’s lived with their condition for years (or their entire life). Who’s spent all their energy looking for solutions & trying to find help. Who’s had to grieve the lack of help available /22
Instead ask us HOW you can support us. There’s many simple ways you could help make our reality a little easier. Help us not just survive - but thrive. Understand that all people become disabled eventually - and help us fight for better safety nets & social supports /23
Finally - wear a mask. Show us that you want to prevent catching (and spreading) covid. That you understand your good health is a gift and it’s not worth risking. That you care about your community. Fight with us - not against us. /end
“If you were really THAT sick you’d be:”
In hospital
Have full time care
Be getting ‘fixed’
Trying harder
Getting financial help
Dead
The list goes on & on.
We ARE that sick & none of these options apply because our systems are broken & ableism is rampant. 🧵/1I’ve known for a long time that ableism runs deep in society. People have forever viewed the disabled as “less than”. Many view our disabilities as our own fault - a moral failing. Others would be perfectly fine excluding us from society forever. /2The pandemic has put these attitudes front and centre. While people held these views before - many were capable of at least attempting to hide them. Of pretending that they valued us the same as non-disabled people. /3That veneer of pretending is gone. Replaced with hatred that ranges from subtle gaslighting to outright eugenics. People will tell us to “stay home forever” before they will even consider taking a small step to keep us safe. They support euthanasia policies that target us. /4It’s been heartbreaking to watch. For me personally… the hardest part is when it comes from people who are meant to love you. People who’ve been in your life for ages and witnessed your struggles first hand. Who now doubt how sick you are. /5I’ve long suspected this is a trauma response - that people are scared of the fact that COVID is a very real threat to their long term health. Scared of the state of our healthcare systems and how ill equipped they are to manage chronic illness. Scared to become “like us” /6Unfortunately this fear drives them to be cruel. To make us justify the severity of our conditions over & over again. They tell us “if it were really that bad then….” And proceed to pitch a solution that is at best laughably unattainable & at worst… outright eugenics. /7I’m here to beg people to stop making those statements. Stop telling people who are fighting for their literal lives that IF they were “really” sick something would be different. Stop acting as though we’ve brought it on ourselves /8You have no idea how much these comments hurt. How deeply your words cut. It leaves a mark every time & we begin to pull away. Many of us are leading incredibly lonely lives because we have to set boundaries to avoid these hurtful & ignorant comments. /9The reality is - many conditions are incredibly serious and have no cure. They won’t necessarily kill you but they can destroy your quality of life. They can leave you completely dependent on other people for help - with little to no hope of improvement. /10This reality is difficult for many to face - so they double down on the blame. It’s not our fault that these conditions have no effective treatments. It’s not our fault our healthcare systems are too strained to care for us. It’s not our fault we aren’t getting better. /11“You would be getting fixed”.
Where to even start with this one? First - it’s rude to tell someone they need to be fixed. Second - it’s short sighted to be unable to realize many things don’t have a fix. We aren’t cars - we can’t just go to the shop for a new part /14“You would Have full time care”. Full time care is prohibitively expensive. Only the most financially well off can ever hope to afford it. If you don’t have family to provide for you - you will be stuck relying on government support that can’t meet complex needs. /13Let’s quickly break down the most common remarks.
“You would be in hospital”. Hospitals are designed to treat acute & life threatening conditions. They treat, stabilize & discharge as fast as possible. “Stable” does not equal “better”. It just means not imminently dying /12“You would be trying harder”. We try SO hard. Most non-disabled people have no earthly concept of how hard we have to work to hold onto our baseline. The number of hours I spend in a day just to keep from needing the ER would astound most people. All I do is try. /15“You would be getting financial help”. Are ppl really so out of touch that they think money is just handed to disabled people? If you’re fortunate to qualify for government assistance (which is very hard)… it’s not enough to survive. You don’t get more when you get worse /16“You would be dead”. This is where people have landed with me recently - and I’m beyond incensed. When did it become ok to tell people that they’re effectively lying about the severity of their conditions because if they were telling the truth - they would be dead? /17This is never - and will never - be acceptable. The human body is an incredible thing & it can compensate to endure tremendous amounts of suffering. With chronic illness this often happens slowly over time. Your body gets used to the pain & disease process and learns to adapt /18In my case - I have severely low blood pressure. I’ve always had low pressure and when it started to worsen my body tried to cope. It finally stopped coping at a BP of 60/30. That number would put most healthy people in the ICU. Yet I’m at home alone trying to function /19When it became that bad - no additional help magically appeared. I wasn’t granted a full time carer or admitted to hospital. I wasn’t given additional financial support to hire help. The ONLY thing that changed was it became unsafe for me to do activities of daily living /20I’ve sustained two serious injuries from fainting, I’m having a very difficult time eating (you don’t have excess energy to digest when your BP is that low) and my brain doesn’t function unless I’m upside down. But I’m still here. I’m not dead. Because my body is compensating /21I share this to plead with ppl to stop assuming you know better than a disabled person who’s lived with their condition for years (or their entire life). Who’s spent all their energy looking for solutions & trying to find help. Who’s had to grieve the lack of help available /22Instead ask us HOW you can support us. There’s many simple ways you could help make our reality a little easier. Help us not just survive - but thrive. Understand that all people become disabled eventually - and help us fight for better safety nets & social supports /23Finally - wear a mask. Show us that you want to prevent catching (and spreading) covid. That you understand your good health is a gift and it’s not worth risking. That you care about your community. Fight with us - not against us. /end
“If you were really THAT sick you’d be:”
In hospital
Have full time care
Be getting ‘fixed’
Trying harder
Getting financial help
Dead
The list goes on & on.
We ARE that sick & none of these options apply because our systems are broken & ableism is rampant. 🧵/1 ... I’ve known for a long time that ableism runs deep in society. People have forever viewed the disabled as “less than”. Many view our disabilities as our own fault - a moral failing. Others would be perfectly fine excluding us from society forever. /2 ... The pandemic has put these attitudes front and centre. While people held these views before - many were capable of at least attempting to hide them. Of pretending that they valued us the same as non-disabled people. /3 ... That veneer of pretending is gone. Replaced with hatred that ranges from subtle gaslighting to outright eugenics. People will tell us to “stay home forever” before they will even consider taking a small step to keep us safe. They support euthanasia policies that target us. /4 ... It’s been heartbreaking to watch. For me personally… the hardest part is when it comes from people who are meant to love you. People who’ve been in your life for ages and witnessed your struggles first hand. Who now doubt how sick you are. /5 ... I’ve long suspected this is a trauma response - that people are scared of the fact that COVID is a very real threat to their long term health. Scared of the state of our healthcare systems and how ill equipped they are to manage chronic illness. Scared to become “like us” /6 ... Unfortunately this fear drives them to be cruel. To make us justify the severity of our conditions over & over again. They tell us “if it were really that bad then….” And proceed to pitch a solution that is at best laughably unattainable & at worst… outright eugenics. /7 ... I’m here to beg people to stop making those statements. Stop telling people who are fighting for their literal lives that IF they were “really” sick something would be different. Stop acting as though we’ve brought it on ourselves /8 ... You have no idea how much these comments hurt. How deeply your words cut. It leaves a mark every time & we begin to pull away. Many of us are leading incredibly lonely lives because we have to set boundaries to avoid these hurtful & ignorant comments. /9 ... The reality is - many conditions are incredibly serious and have no cure. They won’t necessarily kill you but they can destroy your quality of life. They can leave you completely dependent on other people for help - with little to no hope of improvement. /10 ... This reality is difficult for many to face - so they double down on the blame. It’s not our fault that these conditions have no effective treatments. It’s not our fault our healthcare systems are too strained to care for us. It’s not our fault we aren’t getting better. /11 ... “You would be getting fixed”.
Where to even start with this one? First - it’s rude to tell someone they need to be fixed. Second - it’s short sighted to be unable to realize many things don’t have a fix. We aren’t cars - we can’t just go to the shop for a new part /14 ... “You would Have full time care”. Full time care is prohibitively expensive. Only the most financially well off can ever hope to afford it. If you don’t have family to provide for you - you will be stuck relying on government support that can’t meet complex needs. /13 ... Let’s quickly break down the most common remarks.
“You would be in hospital”. Hospitals are designed to treat acute & life threatening conditions. They treat, stabilize & discharge as fast as possible. “Stable” does not equal “better”. It just means not imminently dying /12 ... “You would be trying harder”. We try SO hard. Most non-disabled people have no earthly concept of how hard we have to work to hold onto our baseline. The number of hours I spend in a day just to keep from needing the ER would astound most people. All I do is try. /15 ... “You would be getting financial help”. Are ppl really so out of touch that they think money is just handed to disabled people? If you’re fortunate to qualify for government assistance (which is very hard)… it’s not enough to survive. You don’t get more when you get worse /16 ... “You would be dead”. This is where people have landed with me recently - and I’m beyond incensed. When did it become ok to tell people that they’re effectively lying about the severity of their conditions because if they were telling the truth - they would be dead? /17 ... This is never - and will never - be acceptable. The human body is an incredible thing & it can compensate to endure tremendous amounts of suffering. With chronic illness this often happens slowly over time. Your body gets used to the pain & disease process and learns to adapt /18 ... In my case - I have severely low blood pressure. I’ve always had low pressure and when it started to worsen my body tried to cope. It finally stopped coping at a BP of 60/30. That number would put most healthy people in the ICU. Yet I’m at home alone trying to function /19 ... When it became that bad - no additional help magically appeared. I wasn’t granted a full time carer or admitted to hospital. I wasn’t given additional financial support to hire help. The ONLY thing that changed was it became unsafe for me to do activities of daily living /20 ... I’ve sustained two serious injuries from fainting, I’m having a very difficult time eating (you don’t have excess energy to digest when your BP is that low) and my brain doesn’t function unless I’m upside down. But I’m still here. I’m not dead. Because my body is compensating /21 ... I share this to plead with ppl to stop assuming you know better than a disabled person who’s lived with their condition for years (or their entire life). Who’s spent all their energy looking for solutions & trying to find help. Who’s had to grieve the lack of help available /22 ... Instead ask us HOW you can support us. There’s many simple ways you could help make our reality a little easier. Help us not just survive - but thrive. Understand that all people become disabled eventually - and help us fight for better safety nets & social supports /23 ... Finally - wear a mask. Show us that you want to prevent catching (and spreading) covid. That you understand your good health is a gift and it’s not worth risking. That you care about your community. Fight with us - not against us. /end
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