In less than a month I'm moving to start my new postdoc. And I'm just not ready to be visibly disabled in public again. For years I struggled with my cane and my neck brace and the unrelenting stares and nosy questions of strangers. 1/7
During the pandemic I could brace at home without the weight of those looks. I could accommodate myself well enough that I didn't need my cane and I could rest my hypermobile joints more throughout the workday. 2/7
It is crushing to be stared at all the time when you're in public. And I know people don't even realize they're doing it, but it makes me feel so unsafe. As a woman, I already feel unsafe in the wider world. But my mobility devices add another layer of paranoia. 3/7
When people stare I have to think about what the weight of that gaze says. I have to keep in mind that I cant easily get away from someone with bad intentions. When men catcall it compounds another layer of unease. 4/7
No person should be made to feel unsafe in public. I constantly feel that way. And I constantly have to renegotiate the ways that women are told to protect themselves. I cant take a self defense class bc I can't find one adapted for disabled individuals. 5/7
I can't keep my keys in one hand while also juggling a work bag and a cane. I can't rush home. I can't take a different route every day, I need to shoot for the shortest one. It's exhausting and overwhelming and I thought I'd get better at negotiating these fears over time. 6/7
But they are very much still there. And that is hugely disappointing and exhausting. Another layer of labor and worry to add to the neverending list. All because able bodied people can't stop staring. 7/7 #DisabilityTwitter

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More from @Nicole_Lee_Sch

17 Jul
My parents were checking their retirement benefits today so I signed onto the Social Security website to check my own benefits. I don't even have enough work credits to apply for disability, all because I chose to do a PhD. 1/8
I've worked at least 2 jobs, oftentimes 3 at a time, since I turned 16. I've made myself so much more sick than I would be, just to scrape by. And I'm faced with the fact that I can give and give and give to the academy and it will give nothing back. 2/8
I worked at McDonalds at age 18 because I thought I "needed" to do an unpaid internship to get into grad school. I couldn't afford my car or my professional work wear, so I worked 40 hours a week at the American Antiquarian Society, and 20 at McDonalds. 3/8
Read 8 tweets
21 Jun
The good news: my symptoms of fatigue, fainting, low BP, GI issues, and brain fog aren't due to blood flow issues to my brain. And my nerves are mostly intact. 1/5
The bad news: this means all the above symptoms are secondary, not primary issues. Aka they're not caused by primary POTS, but they're secondary symptoms bc of #MCAS. 2/5
And there are no approved treatments for #MCAS specifically for the disorder. And the top specialists don't take insurance. And there is a whole lack of research. So I've essentially exhausted all the treatments I can afford. 3/5
Read 5 tweets
21 Jun
Tomorrow I find out if I have small fiber neuropathy, arthritis, if my orthostatic intolerance has gotten worse, if my fusion is continuing to allow proper blood flow to the brain, and if I have any other new diagnoses. 1/6
I also find out if I can finally, after 5 years, secure pain meds once again. If I can benefit from IVIG. And if I need to start taking more intensive MCAS meds. Along with potentially starting new treatments for new dx. 2/6
I consider myself a pretty direct, rational, and well informed patient. I have my questions, my talking points, and I'll be clear about follow up actions with my Dr. I waited a year for this. I need answers and care. 3/6
Read 6 tweets
9 May
32% of adults have adverse reactions to fragrance. If you care about making the world more accessible you can start by limiting or ending your use of scented products. That means no scented beauty products, laundry products, air fresheners, bathroom sprays, or scented cleansers.
Committing to being fragrance free is a healthy choice for you too! Fragrances are largely unregulated and are known to have carcinogens in them. google.com/amp/s/amp.theg…
Read 9 tweets
6 May
Once I went to class while not feeling well bc of the attendance policy. We had to give presentations in this course on Lores and Legends. I tried to sit through a talk on the myths behind vampirism and got super sick. 1/4
Because I don't deal well with stories/images/narratives about blood after almost dying post brain surgery. I went into the hall for air, my prof yelled at me for leaving the room, and then I woke up in his arms after having passed out in the hallway. 2/4
After that my accommodations were met regarding flexible attendance. But it could all have been avoided. Promoting trigger warnings, allowing students alt assignments if they miss class, or allowing students to step out of the room during class would have kept me safer. 3/4
Read 4 tweets
13 Feb
I was diagnosed with #EhlersDanlos and #ArnoldChiari in undergrad. The eds dx came the winter of sophomore year, and the Chiari dx the spring of senior year. I would have given anything to have disabled mentors through those years. 1/11
I care about disability representation in higher ed because I had to find my way into claiming a disabled identity. Alone. Because I didn't know what to read or who to reach out to or what to ask for. Representation leads to belonging. 2/11
In undergrad I had wonderful profs, some of whom privately disclosed medical issues, but none of whom were vocal and public about identifying as disabled. I didn't have a professor with mobility devices like I had. 3/11
Read 11 tweets

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