Living Extremophile: Life with Invisible Disability

No, I don't literally survive and thrive in alkaline, acidic, frozen, or extremely hot environments. According to Britannica's online and free encyclopedia, though, extremophiles are tolerant to and find ways to thrive within extreme environments. This I have to do. This is survival for me!

(Editing to say that I have since received communication from the person involved that they were honestly trying to hash out responses to a legitimate accommodations request on this issue. Which is interesting to me both in that the person's tone of voice when saying this didn't feel consistent with this and leaves me questioning my perceptions, but also in that it still baffles me that that conversation wasn't short and sweet to the tune of "well, we should accommodate when needed." Leaving the rest of the post since there are many relevant issues and attitudes discussed in it whatever the original conversation may have been) In doing advocacy for remote access at KU, one member of the IOA revealed to me that they were working on the issue of remote access, but were currently hashing out, what seemed to her a very reasonable and realistic fear: that after COVID-19 some student would try to unfairly secure remote access by claiming they were more vulnerable to the...

On this sunny, way too-hot summer day, I can picture you, reader. Perhaps you are curled up on a couch, or finishing up your work-day dreaming of a nice sit, walk, or bike ride in a sunny park thinking, "Thank God on a day like this, no one would be mean enough to write an essay incorporating everything from the history of hysteria, neurologists like Charcot, neuroscience developments, authors such as Alice James, the James family, syringomyelia, multiple sclerosis AND hypermobile Ehlers Danlos syndrome! 

And now, after all of that buildup...the example.

Photo by  Jilbert Ebrahimi  on  Unsplash Let me be clear here about one thing before getting into the meat of White Fragility and why I feel like there is an argument to be made that Able Fragility might exist. Ableism and Racism are not the same thing. They are not the same experience. Though ableism and racism share in categorizing and leading actions towards people in systemic discriminatory, prejudicial and marginalizing ways based on an a perceived bodily difference (disability or skin color) the results and experiences of the communities affected are fundamentally different (with the exception of intersectional identities).

I hesitate to use these words to describe the phenomenon. It is there, it is so very similar and so very predictable in its responses. Yet, I do not want to co-opt or move attention away from the idea of White Fragility, which is finally getting some traction in white spaces and with white people, so that we are starting to see and learn how we have been harmful to Black People and People of Color, even when we have not been meaning to be. I'm open to other terms and ways to call what I'm writing about if people have them. So this post will go in several parts. It may take me a minute to get through writing each part of it. Also, I am so open other language ideas to describe it.

(Note: I began writing this piece on the dangers of diagnoses and legitimacy  about a year ago, and never got back to it. So the reeling phase is pretty well past!  Also, early in December of 2019, the geneticist I saw diagnosed me with Hypermobile Ehlers-Danlos Syndrome. So new reeling process in progress.

On yet another sick day due to URI (upper respiratory infection) exposure, I’ve been tossing around an idea about Western medicine. At first I thought that Western medicine’s conception of germs and microbes had completely divorced any concept of personal responsibility from illness. But I was wrong. It just allowed it to be misplaced.

There is a sunlit staircase I can see vividly in my mind, made of the light-colored stone that so much University architecture uses. To this day, I can’t remember if it was Watson or Anschutz (probably Anschutz after a Psychology class), but I remember the warmth of the sun spreading between my shoulder blades. I remember how my energy that day felt like the ground was nudging me up with every step. I jogged up the steps to the top and blew through the door of the library to study something clinical and science-like that really interests me but probably would bore most readers (really admittedly, I am pretty dull unless you somehow break through my shell, which can be difficult!). It was one of those few perfect days without pain or fatigue enough to really break consciousness. It was a day I felt so free and untethered that it felt like if I just jumped a small way in the air, maybe for a second, I could fly. Or maybe for me, being able to run up some steps was being able to...

In class the other day, one of our guest panel speakers asked four questions, and asked us to raise our hands if the answer was yes. These questions often are part of measures of inclusion and can be used to reveal barriers to access.

In the fall of 2017, I took a class in Disability Studies. I took this class, in part, to find ideas and tips for how, "they" managed. They. They managed. How people with disabiltiies--who weren't me, because I wasn't disabled (feel free to insert eye-roll here, because when looking back on myself at this time, I totally do!). Not me. Them.

So I know that I haven't written for several weeks now. I have been busy with starting graduate school while sick. As I am still fighting the bronchitis two days away from a full month since I first came down with it, I also have another infection from the Prednisone to treat the bronchitis. I want to revisit this issue of systemic violence in ableism.

It is extremely typical of me to dive right in to discussion and completely neglect important things like introductions for those who might not know me personally, and answers to basic questions they might have like: "Who are you", "Why should I be reading this?", "Why should I care?" and "Good Lord your grammar is atrocious, when are you going to do something about that?"

Ableism is violence. Sit with that a minute. Give it fair contemplation before dismissing it.