Living Extremophile: Life with Invisible Disability

(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.