We’re doing social model discourse tonight so here’s some stuff to know:
a) the social model, as originally formulated, explicitly defined disability as the oppression that is experienced by those whose bodies/minds are *perceived* as deviant...
...which, intentionally or not, leaves out a lot of disabled people. While there have been attempts to rehabilitate the model to address the experiences of those with chronic pain, as far as I have been able to find, there has been no attempt to comprehensively resolve...
...the problem that medically invisible disability poses to the model’s assumptions, or to contend with the impact that those assumptions have had on the advocacy and policy shaped by the social model.
b) the social model was created by a bunch of white cis folks, mostly dudes, with “accredited,” medically visible, physical disabilities. As such, it reflects their particular experiences of ableist oppression.
c) as recently as 2019 one of those dudes wrote in the Routledge Handbook for Disability Studies that “to claim that the impairment/disability distinction is false is to suggest that the division between the biological and the social is false” which is frankly some TERFy bullshit
d) Mike Oliver, who is credited with formalizing the social model, has explicitly said the model was never intended to be a rigorous theoretical explanation of what disability is or how it operates; it was intended to be a blunt political tool.
I am inclined toward the latter but at the bare minimum any attempts to rehabilitate the social model need to explicitly grapple with whom it has historically excluded, and how and why, andhwat harms have come from those exclusions. /fin
*should have said chronic pain and chronic illness
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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.
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.