currently: haunted / unwell & host of No End In Sight, creator of #NEISVoid, a keeper of @RTsFromTheVoid. she/her.
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Nov 26, 2022 • 8 tweets • 2 min read
hi friends just here to say that I’m still doing my normal twitter void stuff (just slowly because life has been 🫠) at this point, but there are other places to find us if/when you decide to leave and/or the lights go out.
I’ve spent a lot of time on twitter & I’ve never had any illusions that twitter the corporation gave a shit about me & losing the space we have built here will/would be devastating.
but I’m in like pretty extreme isolation so it’s not like I’m going to put my phone down.
Nov 21, 2022 • 5 tweets • 1 min read
the thing people are refusing to understand is that ableism is already present in basically any conversation about human behavior because it relates to the social & structural enforcement of what a “normal” bodymind “should” be able to do
see also:
sometimes [telling a person offering you free food that you can’t eat it for medical reasons] gets about the same response as [telling someone who’s pretending the pandemic is over that you wear a mask for medical reasons]: ableist hostility
that’s how ableism entered the convo
“I can’t believe disabled people are calmly discussing their real world preferences for receiving support & care when they have learned that intentions often don’t map well to impact in these sorts of situations”
Oct 20, 2022 • 8 tweets • 2 min read
the conversation I personally most want to be having about disability & labor is how to build communities & systems that normalize asynchronous remote participation & let sick people be sick for as long as they need to be w/o coercing independence during times of unstable health
“When you saw only one set of footprints, it was then that I told you to toughen up & build character.”
Oct 19, 2022 • 6 tweets • 2 min read
it’s also important to remember, at times like this, that different disabled people experience ableism in different ways & context is EVERYTHING.
if people are talking about a strain of ableism you don’t experience, it doesn’t mean they’re wrong; it means you’re missing context.
because almost every time the first thing happens, there will be a wave of disabled people who do not face the kind of ableism being discussed, who still think their disability qualifies them to weigh in on how NOT ABLEIST something is, which is just… lateral ableism.
Oct 18, 2022 • 4 tweets • 1 min read
like I didn’t want to wake up today and get angry about a series of things a fictional parasocial cat said on the internet, I had planned to be angry at something totally different
I get that it can be really hard to understand feedback on a surprise topic at the trolly scale of twitter but I also think that people’s feedback & accountability practices in small conflicts tell you a lot about who they do & do not consider themselves to be in community with.
over the course of the pandemic I’ve basically unfollowed a majority of progressive accounts who aren’t also mostly sick/homebound, because seeing the blatant disdain from supposed allies (including disabled people who easily/regularly leave the house) just isn’t worth it.
Oct 16, 2022 • 4 tweets • 1 min read
in customer service hell & literally just sent the message “Please do not send me the same suggestions a fourth time. What are our options now that we know that the standard steps aren’t helping?” which is not something I think I should have to say explicitly, actually.
I know society is collapsing but I rely on my commercial fitness tracker to manage my dysautonomia and I think it’s pretty fucked that it’s apparently impossible to get anybody to acknowledge that the product is malfunctioning.
if I wanted to be gaslit I’d just see a doctor
Oct 5, 2022 • 9 tweets • 2 min read
I spent all weekend reading about a psychological abuse framework that contends that abuse is essentially punishment for declining or refusing to participate in a pretend world somebody else has built in their thoughts and anyway that’s all I see now when people say covid is over
(this was the book by the way) bookshop.org/books/controll…
Sep 12, 2022 • 4 tweets • 1 min read
I’m sure it’s a coincidence that all these spoonie hit pieces are coming out just on the tails of that Brookings report about how many workers have been impacted by long covid
like it’s so embarrassing how often these unresearched & uncited articles come out because somebody saw a sick person’s instagram and immediately wrote some malicious and unsolicited RPF
Aug 7, 2022 • 5 tweets • 1 min read
is your specific body most like a haunted… ? 🎪
(I haven’t been in a public amusement type environment in a long time 👻)
Aug 6, 2022 • 4 tweets • 1 min read
love 2 tweet about difficult chronic illness experiences because 99 sick people will reply like “true 😭” and then some random person who has never ever thought about chronic illness before is like “well actually I disagree with your decision to criticize our healthcare heroes”
(still whining)
there’s just something about spending years interviewing sick people & reading theory & reading daily thoughts/questions in the void, and then sharing observations and learning how many people who are familiar with NONE of the evidence happen to ✨disagree✨
Apr 25, 2022 • 4 tweets • 1 min read
ok we are watching a scientology doc today. (hulu, Louis Theroux)
I have seen the hbo doc before, but years ago while very sick so it will all seem new I’m sure.
Apr 25, 2022 • 5 tweets • 2 min read
if you can comfortably spare some cash today, can you support sick folks directly by helping someone(s) in today’s #VoidGives thread get closer to their goal?
fundraising can be essential for survival & also exhausting, but we can help.
p.s. let us know you helped in the poll!
if you have any non-financial support requests/offerings for other sick folk, please reply to *this* tweet with details.
are you looking for someone to chat with while you fold laundry/watch a movie? do you need help doing online research? are you easily able to help with tasks?
Apr 24, 2022 • 11 tweets • 3 min read
the primary reason our medical system isn’t ready for long covid is that everyone working in our medical system has been trained to dismiss signs of complex chronic illness as entirely caused by stress or malingering.
addressing staffing & cost problems won’t fix this.
I get so sad when I read newly sick people talking about how systemic access issues prevent them seeing a doctor because
1. we need to fix those systemic access issues
2. fixing those operational issues won’t fix the culture of ableist dismissal across systems
Apr 24, 2022 • 6 tweets • 2 min read
if you can comfortably spare some cash today, can you support sick folks directly by helping someone(s) in today’s #VoidGives thread get closer to their goal?
fundraising can be essential for survival & also exhausting, but we can help.
p.s. let us know you helped in the poll!
if you have any non-financial support requests/offerings for other sick folk, please reply to *this* tweet with details.
are you looking for someone to chat with while you fold laundry/watch a movie? do you need help doing online research? are you easily able to help with tasks?
Apr 23, 2022 • 5 tweets • 2 min read
if you can comfortably spare some cash today, can you support sick folks directly by helping someone(s) in today’s #VoidGives thread get closer to their goal?
fundraising can be essential for survival & also exhausting, but we can help.
p.s. let us know you helped in the poll!
if you have any non-financial support requests/offerings for other sick folk, please reply to *this* tweet with details.
are you looking for someone to chat with while you fold laundry/watch a movie? do you need help doing online research? are you easily able to help with tasks?
Apr 22, 2022 • 5 tweets • 2 min read
if you can comfortably spare some cash today, can you support sick folks directly by helping someone(s) in today’s #VoidGives thread get closer to their goal?
fundraising can be essential for survival & also exhausting, but we can help.
p.s. let us know you helped in the poll!
if you have any non-financial support requests/offerings for other sick folk, please reply to *this* tweet with details.
are you looking for someone to chat with while you fold laundry/watch a movie? do you need help doing online research? are you easily able to help with tasks?
Apr 21, 2022 • 9 tweets • 2 min read
if you’re high-risk for covid complications, how do you think about wearing/not wearing a mask around other people?
what resources and data are informing your decisions?
(plz don’t tell people to just ask their doctor, we’re not in a timeline where that’s universally helpful.)
I don’t just mean like, generally in public, I also mean in private spaces, with individuals or small groups of people you know.
Apr 10, 2022 • 6 tweets • 2 min read
ok but do we have a specific word for the strain of ableism that is levied against people who live with fluctuating, complex & contested illness?
because it’s a distinct bias & I don’t think “healthism” fully covers it.
(regarding)
“computer, what is lateral ableism?”
(source: this post in r/disability, which now says the original r/wheelchairs post was deleted during the time I was adding alt text to my tweet)
(source: this post in r/disability, which now says the original r/wheelchairs post was deleted during the time I was adding alt text to my tweet)