In true disability justice fashion, we approach the Covid-19 pandemic centering those most affected. We believe in taking all precautions during this ongoing pandemic, including but not limited to communal masking, air filtration, vaccination, and more. The organized abandonment of disabled and chronically ill individuals by both the government and the general public is a eugenic move that bolsters the current rise of fascism both within our own country and across the globe. #CovidIsNotOver
That is not to say that individuals who have made choices not to mask any longer are eugenicists and fascists, as the human psyche is much more complex than that, but intention does not negate the impact. It is imperative that we combat the rise of fascism and eugenics with an ethic of care centering those most affected. We must orient ourselves towards living each aspect of our lives, to the best of our abilities, caring for those around us. #CovidIsNotOver#Niagara#DisabilityJustice
Since I have lots of new followers today, I think it's time to finally update my #introduction post!
My name is Borealis, but most online know me as the LiteralGrill! You can call me Allie or Grill for short. I'm trans and an Ursa, think of a gay bear but in a femme form. She/Her pronouns please!
I actively fight for disability justice and will discuss that here as much as I'll share my love for anime and manga (maybe a little more tbh). I often write essays analyzing media or discussing anime history and you'll find a surprising number of times that those two topics intertwine in my works.
I tend to dig old media formats in general and love weird retro tech! I still avidly enjoy my growing VHS and LaserDisc collections. I have quite the board game collection too with some real oddities in there.
While I am a big supporter of content warnings and you'll see me use them often, you won't find them on educational posts or on anything discussing the realities of my life as a disabled trans person. I will however, always make sure these posts have appropriate hashtags so you can filter them out of your feed. If you need to protect your peace by not following or blocking me, I take no offense and completely understand. I hope you'll understand that not censoring the realities of my life from the world is part of how I protect mine.
I'm often stuck inside as an immunocompromised person in an ongoing pandemic (COVID isn't over and I take it seriously) so I'll rarely turn down a good conversation! Or if you just want to hear me info dump on obscure trivia of some kind that I'm researching for my next big article.
Before I forget... Yes, I'm that bonkers grill that watched Groundhog Day 365 days in a row! So expect my knowledge of time loops to be oddly all encompassing.
Welcome to my little corner of the Fediverse, I hope you'll like it here!
If you are part of a non-profit in the U.S., disabled-led, and do TECH STUFF in some way that is also DISABILITY JUSTICE STUFF, please talk with me and have a look at the RFP. #DisabilityJustice#DIFxTech
CommunicationFIRST, an badass advocacy organization working to make assistive & augmented communication technologies more accessible - think legal tech and policy work that gives AAC users more control over their own hardware and software - #DisabilityJustice#DIFxTech
Autistic Women & Nonbinary Network, who write and translate digital organizing tools to increase accessibility for autistic and disabled people who do not speak English and/or have intellectual or cognitive disabilities: https://awnnetwork.org#DisabilityJustice#DifxTech
Important bit in this report: the U.S. Department of Transportation has proposed new standards for how airlines must accommodate passengers with disabilities.
The DOT has asked for comments on that NPRM, identified by the docket number DOT-OST-2022-0144, by May 13, 2024 (see link below).
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
Took some time this afternoon to organize my Covid-19 articles document, read the articles cued up in my tabs, & send an article on the intersection of disability justice & Covid-19 policy/attitudes to the folks who ask me if I will be masking forever.
I want a future where we protect everyone's health & safety. If that's something that you want, match your politics with real actions & mask up. You do you is eugenics.
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
♿ 🛏️
C'est jusqu'au 6 avril,
l'exposition "De la vie au lit",
à Montréal, mais proposant des modalités de retransmissions web,
et il s'agit du travail fondamental de l'excellente commissaire française Sarah Heussaff (qui est actuellement publiée dans le dernier Multitudes).
Je suis profondément heureux de ce travail, il correspond notamment à plein d'échanges entre Sarah et moi, et la continuité de son travail pointu dans les Disability Arts / Arts Handicapés.
C'est tout un pan de la culture handie & malades chroniques qui est étudiée via nos vies alitées puissantes. Nous existons allongé-es.
[Image is supposed to be robot hands pulling a plant from the ground but may still be a creepy ass array of stepford women with conspicuous complexion variation]