I can't begin to explain the amount of anxiety and backtracking that I have experienced when I moved for grad school and I lost a whole team of doctors. Doctors who had helped me make sense of my comorbid conditions for 8 years. 1/10
I lost them because I had the audacity to move for graduate school to a part of the country that BCBS New England did not cover. So I started the hunt again. But it was both unaffordable and a waste of time. I needed a GI, cardio, allergist, neurologist, PCP, and PT. 2/10
I was able to get a cardiologist because of an emergency room trip and referral. I wasn't able to find anyone else who treated my conditions at my uni. And I thought fine, I can make do as I did in undergrad by going on Christmas break and summer break back home for care. 3/10
For years I made the trek from VA to MA just for specialized medical care twice a year. As you can imagine it wasn't sustainable or smooth or easy. Then when I won fellowships and moved to Philadelphia in my third year of school and turned 26 the hunt started all over again. 4/10
My 20s have been defined by hunting for the right medical team, finding decent practitioners, and then watching them disappear because I dared to move. Because time is linear and I turned 26. 5/10
I entered the academy because it offered a flexible schedule, time for treatments, and individual accommodations in a way I couldn't imagine a 9-5 job doing at the time. 6/10
I need national health care because I need stability. I need accessibility. I need to have choices. I need to be able to secure specialists regardless of where I live. I now have constant anxiety about losing my care team. 7/10
I am continually worried about graduating and switching insurance with the start of a new career. Because that switch means losing my team again AND losing access to the treatments I'm currently on. 8/10
I'm so tired of my health deteriorating because of an insurance switch. Or because a referral wasn't approved. I get monthly immunotherapy treatments and I'm worried that graduating grad school means losing immunotherapy while insurance sorts itself out. 9/10
That is absurd. That I am about to reach this huge milestone, and I don't even want to hit it, because it means loss of healthcare. That shouldn't even be on the table. I shouldn't have to worry about that at all. 10/10 #AcademicChatter#Medicare4All#DisabilityTwitter
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I mentioned I was looking into DEI jobs and a colleague told me "burn out in those jobs is like two years."
I've been in the academy for 10 years as a disabled academic. I hate the term burn out. It doesn't convey the reality that disabled scholars face - discrimination. 1/4
It's about advocating for yourself and others and being told to your face that your needs don't matter and you're not worth the cost. I hate the term "burn out." Let's not use a vague phrase for something far more underhanded and harmful. 2/4
I'm tired of promoting my humanity in the face of a capitalist society that tells me my needs are too expensive so I don't deserve shit. But I don't have the choice to do DEI work. I already have to do that work just to survive in the academy. 3/4
This year is a good reminder that some students don't return to spring semester "refreshed" or ready to go. For students with complex chronic illnesses and disabilities, winter break is often a time to play catch up with their medical team or a time to try to secure a dx. 1/9
Students need those dx to get accommodations, but it's incredibly hard to get them. The costs for testing and appts can be excessive, specialists may be far away, and getting the right Dr is hard. These extended hospital closures are creating new barriers as well. 2/9
Over break so far I have 1. Fainted during bloodwork 2. Found I have double the inflammatory markers of an average person (Drs still not totally sure why) 3. Been dx with small fiber neuropathy 4. Undergone a punch biopsy 5. Been given a preliminary RA dx. 3/9
So floored to see so many new followers! I'm @Nicole_Lee_Sch and I (for now) run the social media acct for the DAC. Collectively, our membership provides support to disabled individuals of higher ed. If you'd like a link to our server feel free to DM 1/7
Also check out our website where we have basic resources on accessibility and guest blog posts written by our membership. If you'd like to write something about disability and higher ed feel free to reach out! 2/7
Hopefully our membership will continue to grow throughout 2021. As the founder of the DAC I am so excited to see all that we have done, and to imagine all that we might do. Our members have supported one another in so many ways! 3/7
I'm not celebrating #DisabilityDay today. I'm not going to post stats again or raise awareness about inequality in higher ed. I'm not going to write again and again about how every disabled student faces discriminatory processes in higher ed and the job market. 1/4
Quite frankly I'm tired of awareness days. I'm tired of proving my humanity. I'm tired of compiling evidence of my oppression to try to convince you to care. As a disabled person, I deal with ableism every single day. I don't want to partake in a day of awareness. 2/4
Because for me awareness needs to happen every single day. Because for me awareness doesn't better my life. I need allies to take action. I need allies who recognize my oppression before it happens and call it out when it happens. 3/4
Boosting so all our members can answer! I have #EhlersDanlos so I have a really hard time hand writing. I try to limit my writing tasks because my hands cramp a lot. Investing in silver ring splints made it so so so much easier for me to type comfortably without dislocating.
I also was incredibly lucky to have a friend offer to help build me a desktop! Throughout grad school I had a $150 acer chromebook that I'd take to class with me. I loved it - it could be switched to tablet mode, it was fine for attendance and class discussion when teaching.
And it was lightweight. Made such a huge difference when traversing my campus. Then I have a nice desktop at home that's built to run with my access needs in mind. My friend recommended decent screens, and I set it up as a dual monitor.