Winter’s awesome because literally every time I walk the dog I end up wanting to cry out of exasperation and pain because everything is so goddamn inaccessible #NEISvoid
I just got stuck on a patch of black ice for about five minutes because these assholes who can afford a $500,000 house apparently can’t afford a snow shovel and sand.
Then I got stuck at an intersection because the pedestrian button stops working in subzero temps and the lights won’t change at night without it. So I had to cross the other way and jump a curb cut that’s hazardous when it’s not covered in snow, to try the opposite button.
This was all on top of the thumb I’d already dislocated twice today from wheeling along sidewalks that have only been cleared wide enough for a single ambulatory pedestrian.
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Pretty sure @bennessb has talked about this before, but I’ve been thinking a lot lately about how symptomatic (descriptive) diagnoses do very different things than etiological (mechanistic) diagnoses, and how rarely that difference is acknowledged in clinical practice. #NEISvoid
Symptomatic diagnoses are valid and important to accessing things like disabilities accommodations and palliative care. But they’re often treated as an endpoint in the diagnostic process, while etiological diagnoses are important in accessing effective treatment -
- especially when a single symptomatic diagnosis can result from a variety of different etiologies.
Moreover, symptomatic diagnoses are linked to the phenomenon of medically invisible disability:
That is to say, I can only explain things in excruciating levels of detail, otherwise I end up getting confused by whatever I’m trying to explain because it requires me to flatten complexities that feel essential to a thorough understanding of what I’m trying to describe.
But neurotypicals quickly disengage from those lengthy explanations and if they do read or listen the whole thing, often end up becoming more confused than they were to start with.
Been thinking a lot lately about what gets "counted" as disability under the gaze of universal/inclusive/accessible design and what gets relegated to fields like "health tech" and why, so I've got a thought experiment for you all... (1/n)
As a community we know, almost instinctively, what a #DisabilityDongle looks like as applied to wheelchair users, Deaf folks, blind and low vision folks, Autistic folks. And we can generally think of social model-based alternatives pretty readily. (2/n)
Can we think of any #DisabilityDongles designed "for" chronically ill people, and if so what would be the obvious social model-based alternatives to those
designs? (3/n)
Okay, found my words. And surprise, surprise, they have to do with medical invisibility.
The body of the article clarifies the guidelines are in regard to "primary chronic pain," which it fails to define but which means "chronic pain as a disease in itself"...
...that is, pain that is not determined to be secondary to any other condition. That is, pain that cannot be situated in relation to a site of pathology that is visible/legible to the medical gaze.
And it's interesting (and infuriating) how "we cannot trace this set of symptoms to a specific pathology"
is reframed as "this set of symptoms lacks a (somatic) pathology"
which is in turn reframed as "this set of symptoms is psychological in origin."
Been thinking a lot lately about the construction of disability along lines of in/visibility to the medical gaze and I figure I may as well compile these fragmentary thoughts into a meta-thread for now since I know there are a few folks who are also pondering this stuff:
Whether a person's disability is visible or invisible has to do with whether the clinic has localized it to a particular site of pathology (i.e., whether it is visible to the medical gaze or not).
This is important to recognize not as a validation of the medical gaze but to acknowledge the different ways in which medically visible and medically invisible disabilities are constructed within society, and the very distinct histories that they have.
@elizejackson@besswww So, there's honestly not a lot that directly covers what I've been talking about but the direction I've been really interested in has been the construction of medically invisible disability as moral/psychosomatic, and alongside this the historical evolution of hypochondria...
@elizejackson@besswww ...which in early modernity became framed as a phenomenon of wealthy people who didn't have enough to occupy them and so became "overly concerned" with thinking about their health.
@elizejackson@besswww Which is interesting to me given how closely it mirrors the way in which medically invisible disability is constructed.