Disabled people are not ok. The pandemic has turned society against us (even more than before).
People were quietly ableist before. Now they’re openly hateful.
It was hard to access healthcare before. Now it’s impossible.
It was lonely before. Now it’s a pit of despair
It’s been an incredibly difficult 4 years for disabled and vulnerable individuals. We’ve had to endure terror of knowing we will be triaged out of medical care if system is overwhelmed, have DNRs forced on us & are witnessing aggressive expansion of medically assisted death
We’ve watched as the world clamours to get “back to normal” while completely leaving us behind. We are told to “just stay home” because people don’t want to push for clean air initiatives and can’t be bothered to mask.
Even in hospitals - the one place we have no choice but to go - masking is not required & you run the risk of being labeled difficult or anxious for requesting a HCW mask in your presence. We’re expected to just go along and risk our health & baseline for the comfort of others
When we speak up - we’re shouted down by people who are utterly convinced that the pandemic is over and there’s no risk. We’re told we’re wrong, exaggerating, hypochondriacs or worse. We endure endless trolling & criticism for just wanting to survive.
It didn’t used to be like this. Ableism has always existed - but it was never as aggressively in your face as it is now. People are experiencing trauma from Covid… and rather than cope with it they seem to be lashing out at disabled individuals.
I don’t know if it’s because many mitigations were sold as a means of protecting the vulnerable - or maybe it’s just because we represent a reality people can’t face.
That health is not a permanent state. That Covid is not over and that anyone can become disabled at any time
Whatever the reason - the result is the same. A society that treats disabled people as “less than”. That wants us out of sight & out of mind and that won’t do the bare minimum to protect us. That look the other way when we tell them eugenicist policies are going to end lives
It’s exhausting and terrifying and sad. I’m tired. We are ALL tired. Yet so many of us spend whatever incredibly limited energy we have continuing to advocate for safe public spaces, safe healthcare and an end to eugenics. We fight for equality. And we need allies.
Please remember this the next time you’re entering a public space without a mask. Or tempted to mock a vulnerable person for wearing one. Or accessing healthcare. If it’s easy for you access care - try and imagine how scary it would be if it wasn’t.
Try and have compassion and empathy for people who are different than you. Try and face the difficult truth that one day you too will be disabled - and when that day comes you will want to be treated better than we are currently being treated.
I promise you it’s far easier to advocate from a position of health & strength… so join us. Be our allies. Listen & believe us when we tell stories of unsafe spaces, eugenics and discrimination. Help us change things so that everyone will be better off. /end
Awhile back I went to a specialist for unexplained & painful lower leg swelling. His diagnosis?
“Maybe your legs are just getting fat.”
Horrified…I asked how many people gain weight ONLY in their calves. He shrugged me off. A 🧵 on knowing your body & advocating for care
This doctor did NO tests before deciding it was weight gain. Wouldn’t discuss it with me further & wouldn’t permit me a second opinion. I went home completely dejected and also worried because I KNEW something was wrong.
For the next few days I elevated my legs as much as possible and tried to gently massage them to see if it helped. They just kept getting bigger. Eventually they started weeping (fluid was seeping out of my skin) and my ankles were dislocating from the pressure.
So I went to the ER. I was actually nervous about going because I could only imagine what that doctor had put in my chart. Thankfully I had a doctor who took the swelling very seriously and ordered a wide range of tests (and immediately put me on bed rest to protect my ankles)
Turns out it was a combination of third spacing from my MCAS (when the fluid doesn’t stay in the vascular system & leaks out into the tissues - can be a big issue if you have POTS as well) and low albumin. Dangerously low albumin.
Needless to say I was suffering from malnutrition due to my extensive GI issues and that was causing the swelling. It most definitely wasn’t weight gain. I was underweight with the exception of my legs.
I never knew that low albumin could cause painful swelling like that - nor did I even think that I was suffering from malnutrition. But with both POTS & MCAS it makes sense.
Our digestive systems are controlled by the autonomic nervous system (the system malfunctioning when you have POTS) so it’s not uncommon to experience vomiting, diarrhea & other gastric complaints.
MCAS only compounds the issue by limiting the foods you can tolerate and also causing vomiting and diarrhea. The two conditions make getting adequate nutrition a challenge - especially if you’re on the severe end of the spectrum
I’m very grateful to the doctor who figured it out and helped me get homecare so I could get proper nutrition & stay off my feet while the swelling was at its worst. But it took a LOT of courage to go to the ER after being so rudely dismissed.
This is a lesson in the importance of knowing your own body & having an advocate with you whenever possible. I KNEW something serious was wrong but I had no one with me to challenge the first dismissive doctor. And he was completely unwilling to listen to me.
Don’t ever feel like you can’t get a second opinion or go to a different hospital if you feel you aren’t being taken seriously. And don’t ever apologize for advocating for your health. If you don’t have someone who can go with you - try & phone or video a friend.
Lastly can we please start listening more to patients? We know our bodies best and when you dismiss us it causes not only physical damage - but emotional damage too. You make it harder for us to seek care in the future.
Patients shouldn’t be dismissed without any tests being run. Had I not gone to the ER I could have ended up with life threatening cardiac issues from the electrolyte & fluid imbalance. A simple lab test would have confirmed the diagnosis had the first doctor cared to do them.
This experience was also an excellent reminder of the far reaching effects of dysautonomia & MCAS. It’s important to be as educated as possible in these conditions & the strange downstream complications they can cause.
And remember dismissal & gaslighting is often far worse for marginalized individuals. There’s a LOT of bias in medicine. If you’re someone in a position of privilege please call it out when you see it - and offer to be an ally to those who need support. Allies save lives
People keep shouting that if disabled people can’t cook or clean they should be institutionalized. Apparently accommodating us so we can live independent lives is angering others. Setting aside how awful many care homes are - do you realize there aren’t nearly enough beds?
I get that many ppl seem to want to completely disappear us from society. Seem to think we would be “better off” institutionalized even though many homes are dangerous places for disabled ppl. Even IF they were all sunshine & lollipops …do you think there’s enough of them?
Do you think they accept people of all disabilities? This idea that we should all have families or full time caregivers to support us is nonsense. It’s unrealistic and in many cases unnecessary. Many of us can & do learn to adapt on our own with part time help where available
The reality is we don’t have enough long term care beds to support everyone who’s chronically ill. Many places won’t take you until you’re a certain age. Many deny if you’re too unstable or don’t have rehabilitation goals. I know. I tried to find one & was repeatedly denied.
Stop assuming there’s some society wide program that places disabled people in homes that suit their unique circumstances. Many congregate settings are vectors for disease and neglect. We have to beg for access to places that often make us worse & reduce our quality of life
When you’re tempted to shout that we belong in a home - consider if it’s where YOU would want to be. Also look around - many countries are rapidly expanding their euthanasia programs to include disabled people with non terminal illnesses. Why do you think that is?
We are seeing rising disability numbers due to Covid - and the sad fact is we didn’t have enough supports for disabled people before the pandemic. We certainly can’t support the influx that’s currently occurring. So we are offering DEATH instead. Dead people cost less money.
I know folks are stuck in denial. They don’t want to accept the society wide risk associated with unmitigated COVID spread. But we are begging you to try. Try and think critically about WHY governments are expanding euthanasia programs.
Believe us when we tell you the dire lack of support available. We aren’t shouting about this because we want sympathy or enjoy complaining - we’re shouting because we can see the writing on the wall. We know our systems can’t support this much disability & people will suffer 1/2
what the fuck do we do. theyve destroyed communication in gaza. they keep bombing. we don't even know how bad it is. if it was that bad when the world was watching. Jesus.