I know one of the reasons so many non-disabled people could care less about COVID is because they are truly under the false impression that there is a social safety net should they become disabled. So I’ll say it again, there isn’t one. If you become disabled you are on your own
These are the people who say things like “what about SSI/SSDI?”And “surely doctors are aware of how to recognize and treat Long COVID by now?” And any disabled person can tell you how ludicrous those statements are. Good luck waiting YEARS for disability approval or medical care
That is *if* you even can get approved for disability. People die waiting to get approved, literally. And you will probably be gaslit to high heaven and medically neglected for YEARS before you even get diagnosed, and forget about accessing treatments (all while feeling so ill)
It just goes to show how little non-disabled people listen to us too, because disabled ppl and activists have been shouting this into the void for years yet the false belief that if you get sick you will have support persists.
And if you develop a medically neglected illness like #MECFS from COVID? Well sadly you will enter the ranks with those of use who have been discarded into an indefinite limbo waiting for official recognition, access to medical care, and disease altering treatments
So idk, in light of all of that I would opt for some basic COVID precautions if I were you. If not for the sake of those around you, then at the very least for your own sake. But all I see is brazen carelessness, ignorance, and complete lack of caution. It’s truly baffling
All the people replying being like “well you shouldn’t have to rely on others for anything anyways” in my mentions with their toxic hyper-individualism I guess you won’t ever need the fire dept., or medical care, or to have your mail delivered, or get food grown by other ppl
Also y’all I’m well aware ppl don’t think it’ll happen to them in the first place, but I’ve had enough conversations about this to know that people *also* think these mythical services and supports currently exist for disabled people, and that’s a part of it too
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Something I’ve foreseen since the beginning of the pandemic is that we’re gonna be seeing lots of newly disabled folks who are incredibly ableist and/or in complete denial about their disability status. These ppl can be incredibly laterally ableist for a few reasons 🧵 /1
When ppl become disabled they often don’t immediately identify that way. And whether these ppl had a temporary disability or have a permanent one, they can be in denial about this experience for years. I get it, it’s hard to comes to terms with. But they often then use this /2
Brief experience with disability against other disabled ppl. We can see this in ppl who maybe had post-viral fatigue that didn’t develop into full blown post-viral illness saying they were cured w/ diet or exercise to shame & invalidate those w/ incurable post-viral illness /3
I am constantly reminded how living with #MECFS is like being frozen in time. The world moves past us so quickly, people move in with their lives, and we’re stuck in a cruel and unforgiving stasis as we are slowly forgotten 1/?
This illness warps time as much as it warps our body. Everything about my life has slowed to a halt. This is very literal in a way- I move slowly to prevent PEM and from the pain of my creaky joint & muscles. I am wrapped in stillness, resting & pacing & waiting 2/?
I wait for “better” days, when I might be able to do more. I wait for medicine to make advances. I wait in doctors offices and on hold w/ the pharmacy or insurance. And while I wait the world outside doesn’t stop. Ppl keep going, keep working, buy houses, make advances 3/?
I have something I need to get off my chest re: masks as a disabled person. If I know you irl, and you don’t wear a mask around me or in that photo you post at a crowded event, I might not say anything, but believe me I notice 🧵
I’m not fond of calling people out or shaming them, but when you don’t wear a mask, believe me, I notice it. I might not say anything but I immediately mark you as an unsafe person in my mind, someone to stay away from, and not let close 2/
I might not ask you to put a mask on if I see you without one (although I may have to start) but I will decline the invitation to be anywhere in close proximity with you where I could be exposed. You are limiting our relationship, and risking my safety, by not wearing a mask 3/
I wish more people talked about how chronic illness is it’s own form of complex trauma. And I’m not just talking about medical trauma & mistreatment although that’s part of it. I’m talking about the trauma of losing your health, passions, future, relationships, ability to work 1/
Chronic illness is traumatic. It means losing hope, losing yourself, losing economic stability, losing choice and agency. And yet this aspect of it is rarely mentioned. Much of the trauma from being sick is due to lack of societal supports as well 2/
We know from studying trauma that one of the biggest indicators of developing PTSD is whether someone has community and support which mitigates the risk factors and facilitates healing. I’ve never been more alone since getting sick (during a pandemic no less) 3/