If you believe your PCP will help you manage your symptoms if you get long COVID or even see you with any time sensitivity I hate to tell you this but they will just drop you. They will not read up on the literature. They will not even give meaningful referrals. 1/5 Theyll tell you to go to xyz whos in their network, youll pay another copay, wait 6 mo, and then be told by the specialist "oh I dont do that. Lets rule out xyz thing I do instead." Theyll order pointless tests. And theyll put a red flag in your notes if you refuse. 2/5

Some educators are so hung up on "pandemic learning loss." Yes we have to reset expectations. But maybe we should also talk about the fact that high risk students are being told "screw you go die" every day and a bunch of our students now have long term brain damage. 1/5 Maybe we should also talk about the fact that unis SHOULD be centers for research, meaningful science, and policy guidance, and yet higher ed has failed en masse at all three of those (not a great look). 2/5

I don't think drs understand whats at stake with misdx

If you misdx me, the worst thing that happens to you is you feel stupid for 5 minutes

If you misdx me, I lose time btw appts, I lose money on tests, I become more symptomatic, and sometimes I face irreversible damage 1/5 90% of drs I go to for the first time claim they know whats going on, even when I say no Ive already had that ruled out, no Ive already had the tests, yes I have the lab results to disprove, yes Ive already tried that drug, no it didnt help me then so it probably wont now 2/5

The frustrating thing is that drs wont question their training. They wont learn about disability or chronic illness. The profession doesnt value disabled people. From undergrad education through graduate work 1/5

https://twitter.com/inkblue01/status/1744708097535315980

How many drs get more than one unit on disability? How many schools have mandatory medical humanities by qualified educators? How many students get to read the perspectives of disabled people, hear disabled speakers, or engage with disabled faculty? 2/5

Here's to all the COVID conscious academics forced back in person during *another* COVID surge with no protections. And to all who have had to put their studies, research, and careers on hold because of the severe lack of solidarity. 1/11 I've been incredibly lucky - I haven't had a symptomatic COVID case since the start of the pandemic. I suspect this is a mix of sheer luck paired with heavy precautions. Here's how I'm approaching the new semester. 2/11

In my experience, med schools are all talk no action when it comes to disability representation in medical curriculum. Programs do not want to acknowledge the fact that doctors are trained to be ableist. 1/6

https://twitter.com/PENamerica/status/1705307234626855309

Most schools lack any sustained coursework in palliative care, patient autonomy, or cultural awareness when it comes to disabled patients. And it leads to terrible outcomes for patients. Studies show that drs actively turn disabled patients away: 2/6healthaffairs.org/doi/10.1377/hl…

So we'll just compound infections year after year until our already strained healthcare system breaks entirely? Finding a GP is already hard. Finding a specialist for any Long Covid issue is already hard. What happens 5 years in, 10 years in, 30 years in? 1/8 Nursing homes in the US are already wildly neglectful and abusive and suffer a severe lack of staffing. We know Covid can bring on neurological issues and can result in Alzheimers and dementia. So what happens to everyone who needs cognitive support? 2/8

Here are 10 things professional orgs could do instead of hosting in-person conferences that are sustainable, support community, and drive networking opps for early career scholars. This is focused on history but can easily be shifted to another discipline. 1/ 1. Ask early career scholars to prepare 3-5 min pitches on their research. Host live on Zoom, create breakout rooms featuring each scholar, and let attendees rotate between each to ask questions. Post clips online for those who cant make it synchronously but want to connect. 2/

I didnt think I could be much more disappointed in the US healthcare system, but now I am advocating for my grandmother to get at minimum humane care after developing vascular dementia and wow. Fuck the US. 1/5 Her drs have refused to call or inform her proxy of anything. She's routinely left unbathed, unchanged, in dirty sheets. The food is atrocious. PT/RT/OT take her for a handful of minutes, often less than 10, when sessions are supposed to be a half hour. 2/5

Medical professionals unmasking in light of recent political declarations that the "pandemic is over" just screams to me like a 21st c. replica of the Lister controversy. American drs refused to accept antiseptic practices for decades after it was discovered. 1/4 Despite an abundance of evidence that it saved lives, drs refused to incorporate antiseptic practices. Despite overwhelming data. Depsite clear outcomes. Despite published studies. Lister failed to convince other drs that germs were real, esp American trained drs. 2/4

I made it to 30! Did not expect to survive this long or to spend a decade in the highest highs and the lowest lows. In my 20s I grew into my disabled identity, had brain surgery, got a PhD, completed 3 predocs and a postdoc, founded the DAC, and got a tt job here at Kean. 1/4 I also experienced incident after incident of ableism. From the faculty member at UVa who claimed I wasnt a good culture fit to the numerous committees I freely labored in only to see nothing change. From conferences to interviews to job training, ableism abounds. 2/4

"In an incredibly shortsighted approach, ignoring a prevalence of data stating otherwise, the US federal government removed all meaningful COVID protections, enacting widescale ableist policies reminiscent of the era of institutionalization." 1/4

https://twitter.com/NiallStanage/status/1645554863592316930

"At the same time, away from public eyes, leadership enacted clean air policies for those with wealth, while launching widespread misinformation tactics to keep the general public worry free and complacent. Hospitals were encouraged to end testing, and to stop reporting." 2/4

If youre a disabled student trying to choose a graduate program from those you were accepted to, here are some things I should have asked or negotiated in my acceptance 1/7 1. Housing. Ask upfront for accessible campus housing. If you can negotiate at all, tell your program you can't consider relocation without stable, affordable, accessible housing. 2/7

The past like 6 months I've had terrible urogyn care. I had a UTI, gyn didn't do a culture, gave me 3 day course of meds, I didn't get better. I waited weeks to get a simple appt to do a sample and see an NP. She dismissed my issues entirely. But culture comes back positive. 1/11 Then tells me I'm "too complex" and drops my care. I scramble and go with an infection for weeks waiting for urogyn opening. Surprise I still had the same infection, the 3 day course of meds didn't treat it bc I have a shitty immune system and it was already too severe. 2/11

There's ample evidence that clean air matters when it comes to COVID. And while we've long known this, we're getting more and more studies proving how important this is in #HigherEd. We can keep our classrooms safe with HVAC systems, HEPAs, masking, and other mitigations. 1/12 If you've seen me on campus this term, you will know me as "that lady wheeling around a cart." That is right. I am the lady wheeling around my own HEPA filter because I am high risk for COVID. So having clean air + masking in the classroom/office are vital for me. 2/12

I'm engaging in a lot of encounters lately where people see me masked and ask "oh should I grab a mask?" And I know it comes from a good place, but it can be really exhausting. Why? Let's talk about access labor. 1/10 Time and time again disabled people have to ask permission to be in the same spaces as non-disabled people. We need to ask for access to the building, we need to ask for layouts, we need to ask for captioning, we need to ask for interpreters. 2/10

Not wearing a mask indoors right now is the perfect analogy for ableism. When you don't wear a mask, and you look over and see me masked, here's what I can read in your action: 1/7 1. Annoyance. Maybe you think "wow that's excessive." Maybe you roll your eyes. You think I'm over exaggerating the risk and performing for attention. You might think I'm making up a threat that's not there. 2/7

If you're teaching this year - brush up on your emergency medic skills. We're seeing unprecedented rates of cardiac issues due to COVID. Do you have protocols in place for emergency med? 1/6 1. Know who to call and try to brush up on your campus/school map. Make sure you know who to call for what issue. Obv 911 will get you a team, but it's good to be generally aware of how close help may be. 2/6

Profs who complain that student accommodations are "hand outs" or "unfair advantages"? Please go back in time and prevent yourself from ever becoming an educator. 1/7 Seeing threads on my timeline of SO MANY disabled students struggling. Disabled students make up 15-20% of our college classrooms. They deserve to be there just like anyone else. And they have a LEGAL RIGHT to accommodations. 2/7

A while back I wrote about my medical binder and what I bring to appts as an individual with a complex, multi-systemic genetic disorder. Some people noted that a model could be helpful. As promised, here's a thread on my medical record binder with a model at the end. 1/17 On the first page you'll see a Table of Contents. I keep this at the start of my binder to remind myself where I've slotted in all my records, and I use colored divider tabs between sections and doctors. 2/17

We shouldn't be surprised when academic societies put people in power who have critically bad opinions. Obviously this isn't always the case, but most people gain power in the academy through complacency. Visionaries do not often make it. 1/4 Making it in the academy often means agreeing with the status quo, acknowledging existing harms but shrugging when it's your turn to resist discriminatory practices, and keeping hush hush when you see unprofessional behavior. 2/4