What would happen if we stopped praising people for pushing through and started praising people for taking care of themselves and being mindful of the limits?
A decade ago I was hit by a car.
They REFUSED to give me anything for the pain until after I took a pregnancy test.
Because I was tied to a board & peed before, they had to double IV me, cut off my clothes, & use a bedpan to get a sample.
I had not had ANY sexual contact in 8 mos
I was not planning to vote for Biden because his administration has failed and harmed many people in many ways, but John Oliver’s recent episode on Trump and Project 2025 has me convinced that not voting for Biden could be incredibly dangerous.
I wish we had better options, but
People who aren’t afraid of long covid have NO IDEA how difficult it is to find good care when you have a complex, rare, or poorly understood disease.
They expect House when what they’ll get is more like Zoidberg.
This was in a liberal state at one of the only trauma hospitals in a large city.
This is how women are treated: as secondary to any potential life inside of them, even if it does not (rather could not) exist.
That was over a decade ago.
I am terrified for what the future holds.
And, before you ask, I was also on birth control and would have NEVER kept a child if I had gotten pregnant. I never wanted children or the damage it would inflict on my body. That did not matter. My well-being did not matter.
The hospital in question is a fairly large religious hospital.
In non-denominational or public hospitals you can usually sign a waiver stating you are not pregnant and/or understand/accept any risks involved with your care.
Religious hospitals should not have ERs!
I want to add that this applies to all uterus having (and even some non-uterus having) people, not just women. (I normally add a qualifier but sometimes forget in the heat of a rabid tweet. 😅)
Now that I have your attention, there’s a genocide going on in Gaza and the pandemic never ended. We’re actually in a surge right now. 1/37 people infected in the US. Nearly a million infected daily. Mask up.
I think the one thing most non-disabled people fail to recognize about the medical system is that as soon as they get sick, and I mean big sick, they most likely won’t be able to get adequate care unless their condition is common and obviously treatable.
This is incredibly problematic. Providers are NOT supposed to determine whether or not a patient is telling the truth. You are supposed to BELIEVE and help them.
It IS HARD to accurately recall anything when you feel like crap. Symptoms you are trying to recall can interfere with
All of this! This is why patient’s are asked to repeat their history as well. Because we don’t just want the words. We need the tone, the micro expressions as you say them, the bits you falter over or repeat. It all matters. Someone else’s history isn’t the same.
I have since routinely refused to take a pregnancy test for all procedures when it’s requested. I DEMAND the waiver (I only go to secular hospitals).
I have an IUD, should never give birth for health reasons, & spouse & I use protection.
Treat me, not some imaginary fetus.
Got an email from HR telling me my request to WFH is not “reasonable.”
My lab was fully remote for 5+ months in 2020. Most of our studies take place in other states.
What’s not reasonable is expecting a disabled academic to suffer just so you don’t have to endure Zoom meetings.
I love how newly disabled people are SHOCKED to learn that modern-day medicine doesn’t understand that much about the body and has seemingly very few highly effective treatments for most conditions after their first series of useless medical appointments.
After 5 months of waiting for unemployment because my former employer lied and said that I left willingly (rather than that they inappropriately fired me for being disabled), I finally won! There was a hearing last week, the judge asked a weird number of questions, but I won.
Also, I’d really like
@iamjohnoliver
and
@LastWeekTonight
to do a story on religious hospitals and how various churches are buying up hospitals all over the country which greatly impacts care for many. Please and thank you. I’d be forever grateful.
Pro tip: if you have the power to provide a disabled student or employee with accommodations for their disability you can just do it without requiring that they complete any paperwork or deal with HR.
😘
Oh my fucking god! The EEOC ruled in my favor! They said discrimination occurred! They found reasonable cause. It took 3 years but it is so validating. All of my efforts might actually have been worth it and hopefully I can use this to make change at the large academic medical
My MIL can only use one arm. I told her about one-arm wheelchair mods. She said her leading expert rehab told her they didn’t want to do that because it would more or less encourage her to give up or become reliant on it…
SHE CAN ONLY USE ONE ARM AND CAN’T WALK!
I am furious.
I had a someone apologize for showing up to a meeting with wet hair.
I have wet hair at work all the time. I never realized this was a thing worthy of apology and I now don’t have the spoons to do anything about it.
Is having wet hair rude or inappropriate?
I have been so spoiled by virtual care…
I had an in-person appointment at 10 AM today.
It took me about 45 mins to eat breakfast and get ready.
Then the drive plus getting in the building and finding the clinic took 1 hour and 15 minutes.
The waiting plus the actual appointment
In November 2020, I said “I am disabled” to my boss.
In response, she SCREAMED that she wished she never hired me, that she would get the university to fire me, and demanded I never speak to her about my being disabled.
I teared up.
She called it unprofessional & hung up on me.
It’s official:
After working fully remotely for almost a year, the university is terminating my contract a year early because I requested continued remote work as a reasonable accommodation.
Last day is June 30th.
How is this real?
I will fight. But, for now, I’m heartbroken.
Want to add that I get the anger and frustration people who are against voting for Biden are feeling. I was there!
But I pulled myself back after accepting that a third party just isn’t likely to win, not this year, and after realizing just how organized, coordinated, and violent
Why aren’t prescriptions for 31 days instead of 30? Really tired of the medication refill date constantly creeping earlier because they don’t give you enough for a full month about half of the months of the year…
My parents called on my birthday this week. My mom started making fun of my being disabled and unable to ride in cars etc. so I hung up. She called back and accidentally left a 3-minute voicemail where she continued to mock and laugh at MY LIFE while talking to my dad.
Probably also important:
They not only delayed pain meds, they delayed a CT of my spine (suspected spine injury, thus being tied to board) & brain (I had a TBI).
I am terrified of having to go to a religious hospital trauma center again, yet it’s still the closest one to me. 🫠
I don’t think non-disabled people realize that medical providers don’t truly manage your healthcare for you… the best you can hope for is that they clearly tell you how to manage it yourself. For many patients, managing their health is a full time, unpaid job.
@Suzycue681
I am too but pretty sure it’s just sexism. It honestly makes it harder I’d think becuase you need to keep in rhythm which means if you falter you have to catch up. And I’m guessing they also get points deducted for not being in rhythm with the music. So they need to control their
My best friend, someone I’ve known for 20 years, is getting married in the fall. I call her family my faux family because I love them all.
A few weeks ago, I asked her if she was OK with spouse and I wearing masks at her wedding…
She hasn’t responded or said a word to me since.
Just learned that people in my PhD cohort COMPLAINED about my receiving accommodations after I was hit by a car my first year in grad school. Apparently it was unfair to allow me to sit because I was in so much pain I could barely stand. Ableism is endemic in academia.
Just called to make an appointment with a new medical provider.
They said they don’t offer remote for first appointments so I asked if the staff and doctor would be willing to mask.
They told me that THEY ALL STILL WEAR MASKS!
I don’t have to beg for access!
I’m actually crying.
If you’re trying to find a way to communicate the severity of COVID to people, here’s an example of what I just said to my in laws that might be helpful. It was paired with a message my spouse sent them about this article published yesterday.
The research on COVID from the last year or so has really made it clear that those trying to avoid catching it are making the right decision.
You do NOT want what this virus can do to your neurons, lungs, immune system, heart, and really everything else in your body.
There’s a VERY simple reason that explains at least part of why physicians often gaslight and fail to properly care for complex patients…
It just doesn’t make them feel good.
Watching the world willingly catch COVID and disable themselves as a disabled person feels like you’re from the future and trying like hell to stop a catastrophe from happening, but no one believes you so you’re powerless and forced to just let it happen.
The ableism in the long covid community is so disheartening and hurtful.
We’re trying to welcome you into the disabled community. We get that you’d give anything not to be one of us, but treat us with some damn respect please. We’re trying to help. We’ve been fighting for years.
In grad school after I was hit by a car and my body was a mess, I had to take taxis to campus and ride laying flat because the pain was too extreme otherwise. When I was a bit better (and because cabs were too expensive), I started taking the train again. I would be SHAKING in
Healthy young people please fucking stop sitting in priority seats on tubes and buses also don’t sit in the seats where the mums with buggies need to sit - and if I ask you to move so a v old man can sit down - don’t tell me to fuck off - you can fuck off - ok
She couldn’t be kind to me for one phone call on my birthday. Just five minutes.
She’s been like this since I was young and clearly she isn’t OK, but that doesn’t make it hurt less.
My MIL & FIL’s house is a split level. My MIL had a stroke last year & uses a wheelchair. They hired an “aging in place” architect to design an accessible addition after failing to find an accessible home on the market.
The designs he came up with are still inaccessible to her.🧵
My new boss said I can just put medical appointments in my calendar (without details) and she won’t schedule anything for those times.
Is this what inclusion is like? 😍
I think non-disabled people are less afraid of catching COVID-19 because they still truly believe they will receive TV-quality medical care.
Disabled people know better… 😉
People don’t want to accept that covid might actually be dangerous because then they have to reckon with all of the harm they’ve caused themselves and others by just lallygagging about unmasked over the last few years.
@EarnRespectDon
It really is disgusting and objectively terrifying. So much so that I’m genuinely confused about how it can exist. I feel like Biden needs to spend his time now trying to ensure that it cannot be carried out just in case, if there’s a way to do that.
People still protecting themselves from COVID are not the ones living in fear; we’re the ones living in reality and the rest of the world is terrified of the possibility of us being right.
My incredible spouse was fighting for a national organization with a massive conference to go virtual or at least offer virtual options for the last year. The conference was a few weeks ago and fully in-person. Guess what a bunch of the attendees came home with?
COVID
This is
If a medical appointment does not involve a physical evaluation it should ALWAYS be virtual (unless the patient requires in-person). Do physicians understand that getting to appointments is time-consuming, expensive, and, thanks to the lack of masks, needlessly risky?
I dislike that some people seem to use “chronically ill” instead of “disabled” because they are uncomfortable with disability. I see chronically ill as a descriptor of the specific course and type of impairment/disability. Are people using it to avoid saying “disabled?”
For the not-yet-disabled who are curious about what it’s like to navigate the medical system, here’s how most appointments go:
You: *explains various, concerning symptoms*
Them: Huh… Probably anxiety. Here’s an SSRI. Side effects are brutal but it might shut you up.
*fin*
Anyone else pretend to be oblivious when speaking to physicians because otherwise they assume you’re faking or some such and it’s best if you let them be the hero by gently guiding them to the correct diagnosis?
😅
@DrCarolineMWF
You look for patients faltering over their symptom history? You assume patients are lying? You understand that brain fog, pain, ADHD, and almost any symptom might interfere with recall, right? Have you ever had a complex medical issue and had to track the symptoms? It’s HARD. How
My heart is breaking.
The only event we’ve attended since 2020 was her sister’s (outdoor) wedding in 2021 (again, because they’re effectively family). Going to her wedding would be an exception made out of love. Masks: a way to make it safe for us.
No advice please. I just needed to vent to people that might understand. I know many have lost friends and family to the pandemic and resulting public health wars… it just hurts.
A year ago, I joined Twitter to scream into the void about discrimination I was facing at work.
My boss was trying to fire me for being disabled, OIE was gaslighting me, and then HR sent me an email telling me I was effectively demoted.
(Spoiler: she succeeded & I was fired)
🧵
Unnecessary in-person appointments are a large part of what makes healthcare inaccessible. Many people aren’t salaried or, even if they are, they have limited time off. Needing to go without work for a full day or to take PTO for an appointment that could have been done online in
If you’re a physician who has no problem putting a patient-reported anxiety, depression, or other mental health diagnosis into their chart, but you are hesitant to enter any patient-reported physical condition, please critically evaluate your practices and think deeply about how
It gets worse. The female athletes must also exhibit “feminine grace.”
Here’s the text from the section of the scoring rules for the Olympics women’s floor exercise for this year:
“Expression
Expression can be defined generally as the attitude and range of emotion exhibited by
The built environment is where humans spend approximately 90% of their lives. If most of that built environment is inaccessible to disabled people, even in their own homes, you are truly just excluding them from both society and the world.
3/
Having chronic pain is so freaking expensive. Not just the meds and appointments and impact on work, but the countless devices and creams and massagers and heating pads and thingamabobs that you collect in a never ending quest for a tiny bit of relief. It adds up so fast!
I’m holding onto a small sliver of hope that maybe, just maybe, she forgot to respond (I know she’s been busy & we both suck at texting).
But I am terrified that it’s actually because the answer is “no” and that “no” will break me. Not forever, but for a while.
The executive functioning drain of being covid cautious is EXTREME and particularly hard if you have ADHD. I’m tired and wish people around me cared more so that I could save even just a tiny bit of that brain energy for other things
Are you also keeping a mental record of what everyone in your life has ever said/is doing about covid so that you can assess risk? Isn't it exhausting?
Because I am sick of the comments about this, let me specify: I am NOT asking for permission to mask. I never would. I am asking whether or not I should even consider going. If she isn’t OK with it, her wedding isn’t worth my time.
This is an ongoing thread of fundraisers for Palestinians in Gaza. Feel free to add to it. No one should have to crowdfund to escape a genocide. Free Palestine
Why do companies assume all disabled people magically have a medical provider who understands their condition, work functions, possible accommodations, and has the time to write up a letter?
Did you know the ADA does not require a physician to sign off on accommodation requests?
Medical ableism is so pernicious and violent.
They are supposed to help disabled people, not reinforce harmful beliefs about disability being the result of laziness or lack of effort.
GIVE US ACCESS.
We are obviously at different places w/COVID. Her jobs don’t allow for remote work or many precautions. I guess I just hoped (& am hoping) she’ll understand our need to protect ourselves… but I’m starting to suspect she won’t & I’m worried it will mean the end of our friendship.
I wish I knew academic Twitter existed while I was doing my PhD. My first generation ass could have learned in a few months what it took me about a decade to learn within that system.
The hidden academic curriculum is real and violent.
This is actually a huge problem in the medical system as a whole. I’ve had to cancel or delay multiple surgeries because I didn’t have family nearby to help or even drive me home. Our entire medical system is reliant on unpaid labor and caretaking from family and friends.
Who remembers when the CDC or NIH (I can’t recall which) suggested newly-disabled American LongCovid patients can simply rely on friends & family for survival & assistance, since the government refuses to help? I swear I recall posting about this, but I can’t find it.
It’s laughable (& terrifying) that many non-disabled people are quick to assume disabled people are “faking” it or not trying hard enough, yet they also assume that if they go to a med provider for help that the provider won’t assume THEY are faking it too (spoiler: they will).
Unpopular opinion: People with visible privilege prefer in-person events because it favors their privilege.
Virtual, assuming everyone has access to a decent computer, internet connection, and any needed accommodations, levels the playing field.
Why are almost all of my patients this week getting covid or being exposed to it? I thought we were in a low transmission period (and I know almost no one is actually testing)… what’s going on? What am I missing?
And, honestly, the fact that we’re still learning about so much makes the bombastic confidence of some physicians and providers seem completely unfounded. Look for the ones who are willing to say “I don’t know” or acknowledge the limitations of the science. They’re the gems.
Told a pregnant patient that it’s the second highest COVID wave per wastewater data and that flu and RSV are circulating and suggested she wear a mask when indoors. She had NO idea. She’s been going to her OB/GYN every other week or so. Clearly they forgot to tell her, right? 😒
I just got blocked from a disabled healthcare provider support group for telling someone who said “we are only as disabled as we choose to be” that they are struggling with internalized ableism and that their statements were hurtful. Holy shit.
I’ll write something more formal and appropriate about this later, but, for now, i’m a puddle of tears. There’s so much emotion behind this. I don’t even have words.
I wish people understood that the reason I won’t do things like eat indoors in a restaurant isn’t because I’m afraid of living, it’s because I’m afraid of no longer being able to live life in the way I am now.
I spent hours yesterday creating an alternative floor plan that is actually accessible from a wheelchair and then my architect spouse drew it up formally.
That was the only architect they could find in a large metropolitan area that was at all familiar with accessible design.
2/
I think many in the long covid community still believe Dr. House (or some scientist version of him) will eventually come to save them. I wish I could plug them into my brain and show them the reality that most doctors are more like Zoidberg and that we know so little about the
Please no advice. It might be well intended, but this is a complex situation and I am not in need of assistance with navigating it; I have that part under control. 😊
It was just hurtful so I shared and I’m very grateful for all of the support and kind words!
I’m so sick of playing nice with physicians/providers and acting like they understand science when they don’t. Dancing around their egos is so draining. If they had adequate scientific training (or any decent scientific training) maybe they’d understand the limitations of their
After I was fired for being disabled, I met with a prof about a postdoc position funded by the NIDILRR that could have been appropriate.
Despite being entirely remote most of 2020, that DISABILITY study postdoc could not accommodate my needing remote work due to disability.
A maskless, indoor, person-first language only disability event is not, in fact, inclusive. Disability organizations need to do better or they need to disappear. If they aren’t including us properly, they set the example that it’s OK to exclude us elsewhere.
The PWDA team were at the South West Sydney Disability Expo last weekend to connect with our members and the community. Thank you to everyone who visited.
To find out more about us head to: or