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.
A tricky thing about working while chronically ill (and poor) is that when something goes wrong that fucks with my ability to get your work done, it's often not a single, simple, discrete thing.
Over the past few years, I've tried to get better about communicating when I'm falling behind on work (rather than just disappearing into a stress-induced shutdown).
I've also become more confident about being open about the specific barriers that are causing me to fall behind.
But when I'm communicating with abled folks, I often feel this pressure to provide a straightforward explanation. I feel like when I'm listing a whole catalogue of reasons for why I'm struggling, it's inevitably going to be perceived as "making excuses".
Me: "Accessibility limits where I can live, which is in turn professionally limiting."
Abled: "So ideally, where would you want to move for work?"
Me: "Practical limitations aside, probably London? Because-"
Abled: "No I mean within limitations."
For the abled folks in the audience, when you're disabled, questions that need to be answered before you can even consider moving out of province/state/country for a work opportunity include:
- Will I be able to get the meds I need covered by a health plan, or will I earn enough to cover potentially hundreds or thousands of dollars of OOP costs?
- Are the meds I need even available there?
Tomorrow is #BellLetsTalk Day, but I've got a bit of time so I'm going to share my story now.
Last week, a colleague phoned 911 because I disclosed that I was struggling with suicidal ideation. This is not a safe or helpful action for marginalized folks in crisis.
After I posted on Facebook about what had happened, a friend reached out and asked what you *should* do if you know someone in crisis, if not phone 911?
So let's break this down a bit.
What happened to me last week highlighted the fact that there's a mismatch between how people living on the margins of society experience civil authorities, versus how people living more normative lives experience them.
I've had to make a ton of phone calls today, which has me feeling exhausted, ill and grumpy as fuck, so (for the millionth time), I'm in the mood to talk about medication access in Canada (specifically Ontario).
I take 40mg cetirizine each morning to control my MCAD symptoms. After speaking with my immunologist yesterday I am going to be taking that dose at night and adding loratidine in the mornings.
It will be a process of trial and error to work out my correct dose, but considering that I'm still really struggling with a lot of symptoms (particularly in relation to my cholinergic triggers), I'm starting out at 20mg per day.
So, I saw a thread earlier that made me kind of uncomfortable in that it felt to me as though it was perpetuating some misconceptions about neurological sleep disorders.
The thread dealt with personal experiences of medical neglect, & I don't want to invalidate that. But I also struggle with stuff like this because sleep medicine is so poorly understood - by patients, laypeople, general practitioners, and medical specialists.
So, here comes a PSA thread on a few neurological sleep disorders: