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Miranda 🌸

@crookedneighbor.bsky.social
370 followers 505 following 1.6K posts

Long Covid patient and caregiver writing about homelessness, poverty, and administrative burden in ME/CFS. (she/her) LongCovidSafety.net

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Miranda 🌸 @crookedneighbor.bsky.social · 15h
Anyway should I mute the word "vote" or should I just go to sleep
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Miranda 🌸 @crookedneighbor.bsky.social · 15h
Well, I was wrong and that was extremely bleak
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Miranda 🌸 @crookedneighbor.bsky.social · 19h
Will save most of my thoughts for Signal, but I think we can expect this standoff to go into the night if not longer. Folks are needed in the Bronx now but ALSO please think about whether you can do a second/overnight shift because folks are going to run out of steam, need to go to work, etc.
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Miranda 🌸 @crookedneighbor.bsky.social · 23h
Hey quick question what the fuck
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Miranda 🌸 @crookedneighbor.bsky.social · 07/10/2026
WHOA Ngl though, if they can exempt a whole borough, they can exempt a disease that makes 75% of people unable to work #MECFS #FrailAndFurious @meactnet.bsky.social
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Tina Vasquez @tinavasquez.bsky.social · 05/10/2026
Since this story was published, I've learned of two farmworkers' deaths: a 24-year-old in MS and an H-2A worker in NC. I fear we are getting to a place where we simply accept these deaths each year, as if they aren't largely preventable with better workplace protections.
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Tina Vasquez @tinavasquez.bsky.social · 05/10/2026
On Sept. 29, @prismreports.org published my story about Carlos Vargas Moreno, an H-2A worker with a company called Florida Orange Gold who in 2022 experienced a heat stroke that left him disabled. Two years prior, another Florida Orange Gold H-2A worker died from heat stroke.
prismreports.org
Despite farmworker death and another disabled by heat stroke, employer keeps sending people to fields
Florida Orange Gold has exposed workers on H-2A visas to extreme heat, but continues to bring hundreds of migrants to North Carolina
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Miranda 🌸 @crookedneighbor.bsky.social · 05/10/2026
Weird anticlimactic ending to today’s ER saga, but the neighbor has been discharged and is not in custody. I think things would have turned out the same without me, but I cannot recommend rapid response trainings highly enough. All of the skills that I was able to use today have come from there.
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Miranda 🌸 @crookedneighbor.bsky.social · 04/10/2026
Oh hey this is my dream for #pwLC and #pwME 🏠🛌🐈
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Miranda 🌸 @crookedneighbor.bsky.social · 04/10/2026
Today was supposed to be a crash day but instead I am at the ER with a neighbor and like 4-6 cops (I’m fine, worried about him still)
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Miranda 🌸 @crookedneighbor.bsky.social · 01/10/2026
Well this is great and couldn't possibly cause any problems down the line /s
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Sylvia Chi 齊思涵 @sylviachi.bsky.social · 01/10/2026
They also propose restricting the Census count to citizens and green card-holders, leaving out visa-holders, refugees, undocumented folks, etc. That means less representation for the purposes of redistricting as well as for distributing funding for programs including SNAP, Medicaid, transit, etc.
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Arrianna Marie Planey, PhD MA @arrianna-planey.bsky.social · 01/10/2026
📢📢📢 If you do any kind of research relating to populations, this is salient:
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Miranda 🌸 @crookedneighbor.bsky.social · 01/10/2026
Sounds like this person is going through an extra bad stretch. If you can help, please do
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Miranda 🌸 @crookedneighbor.bsky.social · 30/09/2026
Swear jar for people who call and refuse to leave voicemails
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Miranda 🌸 @crookedneighbor.bsky.social · 30/09/2026
Call me the masked lesbian bar the way my virality persists for no good reason
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october "pre-order The Struggle Is Always Worth It now!" krausch @octoberk.bsky.social · 30/09/2026
💔 please read down for ways you can honor Curtis's incredible legacy
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Ghostly Bree @mostlybree.kitrocha.com · 17/02/2026
JCO is the only one who gets a free pass to stay on twitter because it's better for us, emotionally, if she's not here, but also it's worse for them, emotionally, if she's over there
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Miranda 🌸 @crookedneighbor.bsky.social · 29/09/2026
Giant sigh
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Miranda 🌸 @crookedneighbor.bsky.social · 29/09/2026
I wonder how much of this is because all of these people have already lived their lives like this via human "assistants" and "household managers"
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Miranda 🌸 @crookedneighbor.bsky.social · 28/09/2026
For NY state advocates: Short notice, but the "Most Integrated Setting Coordinating Council" is meeting this Wednesday 9/30 and looks like it will be covering several potentially relevant topics, including: --Olmstead Plan status --HCR housing accessibility initiatives --MTA accessibility updates
ny.gov
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Maelee @bakednbougie.bsky.social · 28/09/2026
Thank you for taking a moment to uplift this need for support to maintain housing & survival 🙏🏽💚 chuffed.org/project/savemae linktr.ee/Maelee21 gofund.me/fe1b68f08 #HelpFolksLive #Housingcrisis #MutualAidRequest #disability
chuffed.org
Help Disabled Organizer with Moving Expenses as She Escapes to Safety from Abusive Situation
Maelee is a multiply-disabled community organizer and the founder of ChronicLoaf. She currently lives with her disabled partner in an unsafe and abusive situation. Unfortunately, this living situation...
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DJ Plague Mouse 💎🐁 @rhinestonemice.wtf · 25/09/2026
The Greenfield Recorder, the town paper where the last ditch bar is is the most truthful transparent coverage I’ve found, they even write about why masking is important may they always have water and shade 🙏 @greenfieldrecorder.bsky.social
recorder.com
Greenfield takes stock of viral attention: Businesses, officials weigh in after coverage of lesbian bar Last Ditch takes national spotlight - Greenfield Recorder
Local leaders and business owners defend Greenfield's Last Ditch bar amid a viral dispute over Saturday night masking policies.
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Miranda 🌸 @crookedneighbor.bsky.social · 24/09/2026
This is right up there with dudes telling the press that they don't wash their ass
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Marianne Dhenin @mariannedhe.bsky.social · 24/09/2026
Disabled, ill, and aging Americans are facing a broken system that’s now harder to navigate than ever. One benefits specialist told me, "It just feels like you’re banging your head against the wall."
newsletter.mariannedhenin.com
DOGE Attacks on Social Security Have Left Millions in the Lurch
Disabled, ill, and aging Americans are facing a broken system that’s now harder to navigate than ever.
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Miranda 🌸 @crookedneighbor.bsky.social · 24/09/2026
RECOVER TLC registration is live! If you're planning to attend in person, please mention in the accessibility section that we need a dedicated space to eat (and network) outdoors! Last year there were 10-20 of us who consistently wound up having to sit on the sidewalk to eat fnih.org/our-programs...
A group of masked advocates with Long COVID who attended the RECOVER-TLC workshop on new Long COVID clinical trials (photo from The Sick Times)
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robin finn @robinfinnart.bsky.social · 24/09/2026
If you wanna support mask-required queer spaces in Western Mass, check out Comics N' More in Easthampton! 🔗 comicsmongers.com
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Miranda 🌸 @crookedneighbor.bsky.social · 23/09/2026
The Venn diagram is a circle etc. etc.
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Erin Biba @erinbiba.bsky.social · 23/09/2026
Like this is deeply bad and fucked up actually??? Making disabled, chronically ill, and marginalized people a national laughing stock?? Cause we don’t have enough trouble existing already?? Y’all already forced us out of your communities how about now just leave us alone? bsky.app/profile/yash...
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Miranda 🌸 @crookedneighbor.bsky.social · 23/09/2026
Oh god we have broken containment so bad
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Nicole Chung @nicolechung.bsky.social · 18/09/2026
Periplus, a mentorship collective serving US-based early-career writers of color, is now accepting applications for our 2027 class of fellows! Apply by Oct. 11: docs.google.com/forms/d/e/1F... You can learn more about Periplus (including fellowship eligibility requirements) at bit.ly/periplusfaq
docs.google.com
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ashley fairbanks @ziibiing.com · 22/09/2026
Rachel is in need of support and really gave her whole heart to paying people’s rent this year, so let’s make sure we take care of her, please!
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Jennifer Oliva @jennoliva.bsky.social · 22/09/2026
More importantly, we can prove that there is little fraud in these programs. The real issue is that creating administrative burdens on top of administrative burdens in the programs results in individuals who are totally entitled to benefits losing those resources. pubmed.ncbi.nlm.nih.gov/39327781/
pubmed.ncbi.nlm.nih.gov
Rationing Rights: Administrative Burden in Medicaid Long-Term Care Programs - PubMed
Administrative burdens impede disabled people's efforts to exercise their right to live in the community as afforded to them under the American with Disabilities Act. The opaqueness and associated burdens with waiver programs are a way to conceal these burdens, thereby demonstrating how burdens "nea …
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Miranda 🌸 @crookedneighbor.bsky.social · 19/09/2026
In honor of Lorem's 30th birthday, and with the blessing of his loved ones, I'm sharing this piece that I wrote, somewhat by accident. It's about Lorem, but also about turning disabled grief into action. Please take the trigger warnings (at the top) seriously, but I hope you will read if you can.
just-following-up.ghost.io
Some thoughts on direct action, and my friend Lorem, on his 30th birthday
My friend Lorem died this week. A few days later, I was supposed to speak to a group of community organizers as part of a panel about Long Covid and direct action, and how we can center access for tho...
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Miranda 🌸 @crookedneighbor.bsky.social · 18/09/2026
Oh this is so so lovely
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 18/09/2026
Last day to complete the Understanding Post-Exertional Symptom Worsening in ME/CFS survey. Your responses go directly into CTN Lite trial design — shaping the terminology, outcome measures, and how crashes are defined and measured. 👉 Take the Survey: ow.ly/AVBY50ZPaJM
Open Medicine Foundation announces last day to participate in ME/CFS post-exertional symptom worsening study closing September 18.
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Julia Métraux @juliametraux.bsky.social · 17/09/2026
If you're a parent of a kid with health issues who can't get their Covid shot through Vaccines for Children right now please reach out at jmetraux@motherjones.com
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Miranda 🌸 @crookedneighbor.bsky.social · 17/09/2026
This is a super cool framework that I think could be very useful for ME and Long Covid activists @viralpersistence.bsky.social @chromatowski.bsky.social
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Miranda 🌸 @crookedneighbor.bsky.social · 15/09/2026
This dunk (and some of the comments) are not quite it to me, but I think the takeaway really is that if he had any meaningful understanding of his Belfast heritage, he would be standing with Palestine like the other Irish artists who have pulled out of his tour
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Miranda 🌸 @crookedneighbor.bsky.social · 15/09/2026
Here's the Aaron Rowe statement with alt text!
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Miranda 🌸 @crookedneighbor.bsky.social · 15/09/2026
Another one 🇮🇪🇵🇸
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Miranda 🌸 @crookedneighbor.bsky.social · 15/09/2026
Now THIS is how you do it (Btw if someone has energy to type out the statement so it can be reshared with alt text, that would be lovely! Have a migraine right now)
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Marianne Dhenin @mariannedhe.bsky.social · 15/09/2026
I am looking for work in mid-October and beyond. I'd particularly love to take on some editing projects during that period, so please reach out if you have an article or book manuscript that could use an expert look! 👀 RTs appreciated.
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 14/09/2026
The deadline is *this Friday* so while I do NOT recommend you push (MEAction and I'm sure other orgs are going to submit!) if commenting personally is important to you, that's your timeframe.
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 14/09/2026
Article incoming from #MEAction on this, but for now I need y'all to know that while the comment box isn't marked at all, it has a character or word limit: about 4000 characters (or 525 words) seems to be it. Just so you don't write a huge thing and end up chopping it down, like I did.
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Miranda 🌸 @crookedneighbor.bsky.social · 14/09/2026
Oh also everyone please go read this impossibly beautiful essay by @mileswgriffis.bsky.social, which captures the massive losses of the last 6+ years against the visceral backdrop of climate grief. Truly one of the best pieces of writing that I've read in years, and I hope it will be widely shared.
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Miranda 🌸 @crookedneighbor.bsky.social · 14/09/2026
Good morning from the grief and rage cafe 🌷 Not to lean too heavily into consumption as self-care, but I am taking this morning to appreciate the very simple freedoms that I have as a disabled person, and to dream of a world where these freedoms are realized for everyone. (thread)
Photograph of an open laptop (with some hopefully not-very-readable text of an essay draft!) sitting on an outdoor coffee shop table. Next to the laptop are a large pink pill container, an Aura N95, a plastic cup of ice water, and a hot latte topped with cinnamon in a Scandi-style floral mug. In the background you can see a small shrub and part of an urban street.
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Miranda 🌸 @crookedneighbor.bsky.social · 14/09/2026
I did this in my 20s and it was very easy! As well as giving me some closure with regards to my antivax/medically neglected childhood. If you do not have full immunity, you can get boosters (or the original series if you never had it as a child).
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