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
There are so many ways this can go wrong. First of all, are doctors trained to write accom paperwork? No. Not part of med training curriculum. Do they know what to ask for? Also no. Can you get a long enough appt with them to actually discuss what you need? Also no. 3/10
Second of all, why does some random person in HR get a copy of my personal medical records, diagnoses, and medications? Why should they (someone with NO medical training) get access to these? 4/10
Why does that HR person get to determine whats medically necessary? Why does the uni do with a list of my meds? What happens if I need accoms for a condition thats regularly stigmatized? How do I know my med records are protected from other campus depts? 5/10
Finally, why do I have to undergo an inspection by a uni-appointed provider? The implication is that I am faking a disability and they are hired by the institution to "weed out" the fakers. This implies bad faith negotiation from the start. 6/10
Finally I have to negotiate with HR. Even after ALL that work, ALL that fighting against a system that doesnt understand my needs, I still have to negotiate. I am guaranteed nothing. 7/10
I am 31. I have had to do this every year since I was 19 JUST to be able to go to work. I am not healthy.
I am not supported. At my current institution, I refuse to go through this bullshit and just accommodate myself. 8/10
Im lucky that Ive cobbled together enough resources to accommodate myself. Im lucky that I have the money to do this. Im lucky that colleagues and students informally accommodate me. Others are not so lucky. 9/10
And if I, a pretty vocal person, who is quite aggressive when it comes to defending my access needs, has given up on the process then you can imagine how students feel. 10/10 #AcademicTwitter #DisabilityTwitter #AcademicChatter
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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
I practice strict, multilayered COVID protections because I am my only resource. I dont have a partner who can take care of me. I dont have family money to bail me out. I could not afford a caregiver or private nurse. My kin couldnt take extended time off to care for me. 3/4
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
3. Advocate on organizing committees for remote options. I dont want to volunteer for an organization that is actively harming me. I dont want to build my own access. Build it FOR me. Then I will want to pay dues, volunteer, etc bc I will feel I belong. 3/10
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
Unless youre wealthy, youre years away from meaningful care. Even if you pay out your ass for a PPO so you can choose your own specialists, youre years out from care. Everyone is going to the same handful of drs. 3/5
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
Perhaps we should talk about the fact that we teach about things like cognitive dissonance, and history of medicine, and public health approaches. We have the knowledge and yet in crisis the academy folded in an effort to cling to normalcy. Pot, kettle kind of praxis here. 3/5
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
If you dont know what to do, you could always idk ask me what support I'd like. I am probably in your office because I have a plan, even if you don't. I have questions, I have looked into dx or therapeutics and want someone to help me reason it out 3/5
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
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
We dont have positions in the US centered around chronic illness. Palliative care treats young disabled people like a mystery. There's a hyperfocus on the acture - healing/fixing/restoring. Which means no rotations in a unit where you focus entirely on disabled patients. 3/5