#Disabled and #FirstGen historian.
Research on #DisHist, #HistMed, and #VastEarlyAmerica. Assistant Prof at Kean University. Tweets = my views alone
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Dec 15 • 11 tweets • 3 min read
I live in an urban space where its been hard to get to nature (I dont have a car, and public transit is dismal here). So I challenged myself this year to take whatever photos I could in the few green spaces I can access. Theyre just phone photos, but I hope you enjoy! 1/11
Found this fierce hunter at the local park 2/11
Dec 9 • 12 tweets • 4 min read
This happens because people dont take disability seriously. They assume food requests are about preferences rather than life threatening allergies. And we see similar takes all across disability experiences. 1/11
Ive seen tons of posts from blaming and shaming to arguments we should all have epi pens. I just want to add: we need medical bystander training. Most people do not know what epi does, or how to use it, and our pens are difficult. 2/11
Dec 5 • 6 tweets • 2 min read
At 22 I had brain surgery for a Chairi Malformation and cervical kyphosis. My brain was slipping down my spinal column, and getting pinched off by vertebrae dislocating past one another. 1/6
Because I have EDS, I metabolize anesthesia quickly. My anesthesiologist confirmed this with me ahead of the surgery, and laid out a proper plan to make sure I was adequately medicated. We didnt know how long the surgery would take, so the plans were very detailed. 2/6
Dec 5 • 4 tweets • 1 min read
Lots of "activists" on here telling you to be quiet and play nice and accept your murder easily. Lots of people saying anger doesnt fuel rebellion. Lots of people claiming that calling people out for their behaviors is "bad" community behavior. This is all bs. 1/4
The whole system is designed to uplift people who are palatable. Whether its social media or politics or white collar jobs - every sector is going to uplift those who do not challenge the status quo. 2/4
Dec 2 • 5 tweets • 1 min read
I want everyone supporting assisted dying to read up on "utilitarian ethics." If med professionals deem you to have a "lower quality of life" you will be targeted by the state in public health crises. 1/5
What leads med professionals to believe you have a "lower quality of life"? Being disabled. Being a person of color. Being elderly. Experiencing poverty. Basically holding any marginalized identity whatsoever. 2/5
Nov 25 • 5 tweets • 1 min read
I used to believe in assisted dying, because I thought of it from a wholly selfish standpoint. I had seen loved onces face agony and suffering in death, with far too little medical support. I did not want to go through the same. 1/5
Then I learned that assisted dying wasnt JUST applied to cases like those of my family members. I learned about how unequally the law was applied, and I learned about how vulnerable people were coerced into accepting death before being offered life. 2/5
Nov 9 • 9 tweets • 2 min read
It is a really jarring moment to be a historian. To know what might be coming is alarming. To realize that no one around you sees it or acknowledges it is a weird place to be in. Its like time traveling without time traveling. 1/8
I study the 19th century and the 2020s look a lot like 1820s. Frequent epidemics? Check. Inflation? Check. Xenophobia and deportation schemes? Check. Womens rights losses? Check. Rampant backlash against womens economic freedoms and jobs outside the home? Check. 2/8
Oct 25 • 9 tweets • 2 min read
What's so stunning to me is that we have some data about how many people are disabled, permanently out of work, and continuing to struggle with long COVID. And people are still like "its not that many people." 1/9
I wouldnt say 14% of Americans out of work is low:
2/9news-medical.net/news/20240816/…
Aug 21 • 10 tweets • 2 min read
Your reminder that the accommodations process can be harmful to ANYONE! Ive been navigating accommodations in higher ed for years and I have never gotten what I need or heard of someone getting everything they need. 1/10
In order for me to get accomms, I need to 1. Get a dr to fill out paperwork recommending accoms 2. Report all my conditions AND medications to HR 3. Submit to an appt with a university-appointed physician (NOT one of my choosing) 4. Negotiate whatever accoms they offer me 2/10
Aug 6 • 4 tweets • 1 min read
The reality for many people is that: if we get COVID, we might die, find our current health conditions exacerbated, or develop new comorbidities that disable us further. 1/4
And maybe for some people who have money this outcome is not the end of the world. But those of us who dont have financial stability? Who cant rely on family? Who need access to private insurance just to get the treatments we currently rely on to survive? 2/4
Jun 27 • 10 tweets • 2 min read
If youre presenting at an in person conference, I really need you to show up for disabled people. How? Here are 10 options: 1. Wear a mask during all proceedings - yes even when youre at the podium, 6 ft doesnt matter, air doesnt work like that 1/10
2. If you know you'll be on the ground, did you offer to Zoom people into your panel? Did you tell organizers youd facilitate remote involvement? Did you offer to Zoom in other panelists? 2/10
Mar 30 • 5 tweets • 1 min read
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
Mar 10 • 5 tweets • 1 min read
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
Feb 10 • 5 tweets • 1 min read
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
Jan 10 • 5 tweets • 1 min read
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
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
Jan 4 • 11 tweets • 2 min read
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
Sep 24, 2023 • 6 tweets • 2 min read
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
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…
Aug 31, 2023 • 8 tweets • 2 min read
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
Jul 30, 2023 • 14 tweets • 3 min read
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/
Jul 10, 2023 • 5 tweets • 1 min read
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
May 11, 2023 • 4 tweets • 2 min read
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
