Nicole Lee Schroeder, PhD Profile picture
Sep 29, 2022 10 tweets 3 min read Read on X
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
I am constantly asking for permission to simply get into the room. And now let's compound that with masking. I'll use my own access needs as an example here. Just to get into the office to work I have to ask for so many things. 3/10
I have to ask for an entrance with automatic doors. I have to make sure the elevator is working. When it's not I have to ask for a fix. I have to ask for internal doors I can open. And when depressurized doors get "fixed" by unknowing maintenance teams I have to ask again. 4/10
I have to ask for a desk and chair because I'm expected to stand to teach and I can't do that for 3 hour seminars. I have to ask for captions in virtual meetings because I struggle with processing sometimes. I have to ask for work from home some days. 5/10
I have to ask for permission to inhabit the same spaces as my colleagues at least once a day if not more. And I have to ask other people to provide that access all the time. Now imagine if multiple people ask me "oh should I mask up?" 6/10
Every single time I have to gain the courage to say "yes please." And I am brave but it takes a LOT of courage and privilege to ask for access all the time. It also takes a lot of energy and labor. Some days I don't have it in me to ask permission for safety and security. 7/10
Access labor cannot ONLY be done by disabled people. We need you to alt text images, automatically turn on captions, host virtual/hybrid events that ENGAGE us. We need you to plan for us so we don't have to ask again and again for permission to inhabit the same space. 8/10
I want to be able to be less brave. I want to rest. I want to enter spaces where I don't need to ask, because someone has already taken into account universal design, and maybe even remembered my access needs. 9/10
I want academics to think about their complicity in access labor issues. Are you building access? For whom? Are you relying on someone to ask for access? Are you framing it as a favor? Are you unknowingly making someone feel shame/guilt? 10/10 #AcademicTwitter #AcademicChatter

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More from @Nicole_Lee_Sch

Aug 21
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
Read 10 tweets
Aug 6
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
Read 4 tweets
Jun 27
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
Read 10 tweets
Mar 30
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
Read 5 tweets
Mar 10
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
Read 5 tweets
Feb 10
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
Read 5 tweets

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