Things I did today: emailed HR about accommodations, printed off and wrote out comparison charts for medical plans for new job, wrote list of questions about the plans bc so far I haven't been given detailed info. 1/7
Searched for Drs in new area based on recommendation lists from rare disease communities. Mapped each doctor, put each in a spreadsheet, listed the insurance plans each takes. Cross referenced these with the plans being offered. 2/7
Researched a new diagnosis that I was given a half assed explanation for by my neurologist yesterday. Read articles on PubMed about it. Took notes on potential therapeutics. Cross referenced these recommendations with patient community data. 3/7
It's 11. I've spent the past 3 hours doing admin work that I need just to survive. That's what it's like being #Disabled. My academic work day hasn't even begun yet. It will compound on top of a frustrating morning in which I've had to coordinate my own care despite barriers. 4/7
All of these issues could have been avoided. All of them could be remedied by better healthcare policies. By streamlined healthcare that doesn't focus on in-network/out-of-network divides. By my Drs taking time to explain test results and not rushing my appts. 5/7
And by onboarding and HR teams recognizing that when you hire a disabled person, they have to pick up their whole medical team and build one anew. Which means they need clear details about the resources available to them, and clear information about policies. 6/7
I'm very tired of the casual and blase approach able-bodied people take towards this. When I send frequent emails, ask for clarification, call to get through to people, or cc higher ups I'm not being annoying. I'm trying not to die. 7/7 #AcademicChatter #AcademicTwitter
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