I’ve been thinking a lot about all the labor behind-the-scenes people don’t see when you’re chronically ill: the applications, intake forms, doctors appointments, note taking, emails, phone calls with pharmacies/insurance, etc.
All the while your body is already worn down. #MHAM
When chronically ill people talk about it being like a full-time job in and of itself, it really is. But when you can’t physically work for capital, the outside perception that you do “nothing” is all too pervasive.
Writing this to affirm to any chronically ill/disabled person who needs to hear it (myself included): regularly navigating ever-increasing hostile systems and finding worth in yourself outside of capitalism are major wins on their own.
Keep going.
One last thing: a cruel irony of being so sick is wanting to do more advocacy for the very condition that vexes you but being too ill to participate as fully as you may like.
I hope you can be gentle with yourself instead of mentally beating yourself up over it. #MHAM
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It feels like the pandemic has pushed us very close to a major reckoning on ableism, but we’re not quite there yet cuz that would require society at-large to look in the mirror that is being reflected back at them. Some of my thoughts/observations:
Before the pandemic, I feel like it was “easier” for nondisabled people to simply ignore disabled folks if they wanted to. And to a certain extent, that remains the case.
That being said: as the pandemic has raged on for ~3 years and leaders have clearly signaled that medically vulnerable groups are “acceptable” collateral damage and key protections keep getting lifted…disabled voices have only gotten louder and are becoming harder to ignore.
One thing I’ve been thinking about a lot is how disabled people are left out entirely of the mental health conversation as it relates to the pandemic.
The pandemic has been hard on everyone in myriad ways, but when the topic of mental health is brought up in the context of COVID, it feels like disabled people don’t exist.
So I’d like to use this opportunity to shed some light on areas where your disabled friends may be struggling amidst this ongoing public health crisis:
I’m gonna give my own little chronically ill/disabled perspective into why “just stay home” doesn’t work.
First off, there are places I do need to go. I know this might shock some folks, but disabled people are [checks notes] part of society.
For example, there’s a medication that isn’t eligible for delivery; it needs to be picked up at the pharmacy itself. This means without mask mandates that even with my N95, I’m inside a crowded store with people who don’t have to/choose not to mask.
Alice Wong is right and, she should say it. So many chronically ill and disabled people feel the exact same way — that we’re seen as “disposable.” This pandemic has been an especially brutal daily reminder of this lived reality. tampabay.com/news/health/20…
.@SFdirewolf: “My critique is…about these institutions that historically devalued and excluded people. We’re just trying to say, ‘Your messaging is incredibly harmful; your decisions are incredibly harmful.’” tampabay.com/news/health/20…
Q: Why do you often refer to people with disabilities as oracles?
@SFdirewolf: “Disabled people have always lived on the margins. And people on the margins really notice what’s going on, having to navigate through systems and institutions, not being understood.”
Because my health and disability status should not make my inherent worthiness as a human being constantly up for “debate.” #MyDisabledLifeIsWorthy
I never thought I’d share this publicly & frankly I might delete:
When my ex (who I was with for 10 years) broke up with me, the underlying reason why was cuz we weren’t a “normal couple” anymore. I.e. he saw my somewhat newly chronically ill/disabled self as not normal.
That was the first time I deeply understood in a gut-wrenching, beyond heartbreaking way that even the people who you thought loved & cared about you the most will dehumanize you and deem you “disposable.”
I wasn’t able-bodied anymore, therefore I was tossed aside.
I still remember when the CDC told vaccinated people they didn’t have to mask anymore and the folks who pushed back were called “pandemic addicts.” Then that strawman wE cAn’T sTaY iNsIdE fOrEvEr.
So yeah the government has failed us. But y’all need to listen to disabled people.
If there’s one thing the pandemic has been consistently serving, it’s eugenics.
I place most of the COVID crisis blame on government failures, but I’m not giving certain folks a free pass for the role they’ve also played.
Shaming people who consistently took the pandemic seriously. Signaling that disabled people are acceptable collateral damage. Etc, etc.