Writer. Disabled (CP, RA, etc). Lifelong political nerd (US/UK/RoI/RU/other). Owned by cats. Yes, that's Paul McCartney in the profile pic (& me, left).
May 26, 2022 • 8 tweets • 2 min read
A small word on this, because it feels super important for white people like me to be honest about white people's blind spots (it's the first step toward being better *people*, not just anti-racist).
It took me a while to come around to *saying* "defund the police," not because I disagreed with it (I agreed strongly!) but because it felt so actively confrontational. Other white people would invariably challenge "and then what?!" but then didn't want to have the conversation.
Apr 30, 2022 • 4 tweets • 2 min read
Well, what little was left of my hair just slid off all in one piece, so I am officially and entirely bald. CT scan on Sunday to see if it'll show up any #LongCovid pulmonary damage. But hey - don't have to budget time/energy for braiding my hair anymore. That's a first!
Being abruptly bald when you've had long hair all your life is a *deeply* weird sensory experience. It might feel less weird if I'd actually shaved it, but I didn't - it slid away from my scalp like a poorly secured wig. Feels like there's a Poe-esque short story in that.
Feb 24, 2022 • 4 tweets • 2 min read
Malarkey is *done* with the fluids, the meds, the waving 18 cans of food under his nose every hour, the syringe feeding... we've done everything we can, he and I, and today, he told me he's done. Now I get to figure out how to scrape up the rest of the $ to send him off properly.
I have the money to take him to the vet, but *his* vet isn't in til Monday and he *hates* the car. I'd rather not traumatize him further. But the house call vets have raised their prices thanks to covid, and I won't have that kind of cash for another 2 weeks.
Feb 23, 2022 • 30 tweets • 6 min read
With precautions being lifted in several countries, vulnerable folks are afraid we’ll start seeing more violent behavior around masking. As a crip who has experience in being abruptly manhandled by strangers, here’s a “what to do if someone tries to rip your mask off” thread.
First, context – non-disabled/healthy people are often freaked out by visible/obvious reminders of illness/mortality. It’s why they say things like “are you sure you *need* that wheelchair?" or "If you tried a little harder, you would be less ill/sound more normal" etc.
Feb 18, 2022 • 8 tweets • 2 min read
Wow. That's an interesting first... someone thought they'd pick a fight with me, I replied, they realized that the argument they *thought* I was making was not the argument I made, and were so - embarrassed, I assume? That they blocked *me*. Ah, Twitter, you're a riot.
Oh god, I just figured out what happened... this particular dude was a "you're American, you're not allowed to *speak* about Ireland, and you can't *possibly* know anything, you plastic paddy" dude. Just in case anyone was curious. They're a goddamned delight, I can tell you.
Feb 18, 2022 • 10 tweets • 2 min read
Dear Google Maps: Northern Ireland is not "Ireland" and Ukraine is not "Russia." For further information, please consult any atlas produced after approx. 1991.
To be fair, this is as a result of me digging into the new global covid data layer in Maps and going "?!" every time I see that the US institution who complied the data failed geography class *and* history class. I hope their science knowledge is a bit more on point!
Feb 17, 2022 • 23 tweets • 7 min read
I want to talk about #LongCovid & #hypoxia & how my experience of it now is *drastically*, even *dangerously* different to what prior lung issues taught me.
I didn't plan to do this thread and I'm not thinking clearly atm, but it's important, so I'm going to give it a go.
Background: I was born prematurely & before synthetic surfactant, so I have asthma and temperamental lungs in general. I also have an extensive history of pneumonias that try to kill me (as in ICU stays). So I've had 40 years of knowing how to handle not being able to breathe.
Feb 16, 2022 • 8 tweets • 2 min read
#LongCovid is weird, part 4,792:
Mom: My covid toes are flaring up again. Are your toenails coming off in sheets, too?
Me: Like mica? Yes, it's a bit gruesome tbh.
Mom: They were back to normal for a bit!
Me: Yup. And now they're not.
"Like mica" sounds funny, but it's really becoming a safety issue in my case because my sensation in my feet is compromised enough that I can snag a layer, not feel it, and, well... have a bloody mess on my hands. And in my sock, come to that.
Feb 16, 2022 • 4 tweets • 1 min read
Person: Hey Meg, where can I find your writing?
Me: Erm... I yanked most of my writing off the net years ago, sorry.
Them: Why would you do that?!
Me: Because of nonsense like this. 👇
I don't have the energy to build out my own site right now, and I refuse to have my work hosted by a site that's constantly badgering me to sell myself harder for *their* profit. There's a word for what that is... starts with a p, ends with a p, there's an i and an m in there...
Feb 15, 2022 • 4 tweets • 1 min read
It continues to amuse me every time someone tries to snark "thanks for noticing, welcome to disability" at me because, uh... I was born disabled and I had ME by 1994, so everyone who assumes LC is my first rodeo in *any* respect is demonstrating they don't believe I can exist.
If when I say "Thanks, but I've been disabled all my life," your response is "Oh yeah, well not like *I* have!" I hear, "Oh yeah, well I'm so new to being part of the disabled community that I can't conceive anyone would have to live their whole lives like this."
Feb 3, 2022 • 5 tweets • 2 min read
Me, criplit author, to one of my writing pals: If I were writing out my own course of #LongCovid with the aim of sketching out a fictional character, I would 100% scratch it out as not plausible. "Tone down. This is verging on ludicrous. Pull back on the crises."
On a serious note, I think that is a factor in why it's so difficult to get doctors to believe us. Disbelieving patients is a feature of medicine, don't get me wrong, but as a medical geek, no other illness has caused me to keep checking the *instruments* due to wild readings.
Feb 2, 2022 • 18 tweets • 4 min read
Didn’t expect this comment to take off – I was lending support to a fellow chair user who’d had a traumatic experience many of us have, and this discussion arose. Since it seems to have shocked some bipeds, I want to talk about what to do if you see it.
The first thing to remember is, the vast majority of wheelchair users *cannot* afford to escalate confrontations in public. If you’re going to say *anything*, please make sure you’re not Hulking out on the perpetrator – they will take it out on *us*. Aim to defuse, not enflame.
My original life plan from ~8 was to be a pulmonologist specializing in cystic fibrosis. I spent all my free time at uni on an underground citizen research team dedicated to trying to crack the biochemistry.
israel21c.org/dont-invent-ne…
(2/9) We were on the right track, but ~20 years too early; our research was the very very VERY beginnings of what eventually led to ivacaftor (Kalydeco). So when I plow through a Covid abstract & break it down a bit, know that I have no qualifications, but it’s a lifelong hobby.
Dec 5, 2020 • 7 tweets • 2 min read
I had no idea Father and Son was originally written as part of a(n unfinished) musical set during the Russian revolution. Continue to be impressed by the fact that Yusef Islam/Cat Stevens voice hasn't changed a bit in 50 years. (Why do I care? Personal anecdote ahead.)
When I first transferred from segregated gimp school to tree hugging hippie school, folk/protest songs and guitar were part of the curriculum. We sang a lot of Cat Stevens (+ Jimmy Cliff, Peter Tosh, Pete Seeger... you get the idea). So, there's a certain subset of music...
