I hate how gone most specialized telehealth is now. I need a virtual eye exam and no one does them anymore. I shouldn't have to risk Covid and injury for something that just needs a quick video look from a specialist on an existing issue that's flaring.
My first published poem in years is up on Eunoia Review. It's going to be in my forthcoming poetry book, release date TBA. eunoiareview.wordpress.com/2026/04/10/c...
Breaks my heart to see how many chronically ill and disabled people aren't masking even in crowds, at events, when traveling.
Obviously it bothers me that people in general aren't but when even the communities at highest risk and who should be setting the example don't, it hurts all of us.
We should be a marginalization that gets allies and activism in those circles yet I've been largely ignored and shut down by communities and individuals when I try to participate as a very chronically ill, disabled, non-toxic positive, and still Covid cautious person.
It's pretty incredible (but not surprising anymore) how almost any time I talk to somebody who claims to be really left-leaning and I mention I'm a disability rights activist and/or still Covid cautious, they completely ignore everything I say about that and change the subject.
Article: Chronic diseases misdiagnosed as psychosomatic can lead to long term damage
This happens to nearly all myalgic encephelomyelitis patients. It’s brutal, but validating and important to see the harm named and studied.
#GreatestMEdicalScandal
www.cam.ac.uk/research/new...
Agreed. Geez. That was not appropriate.
the science we learn from space exploration is far reaching. some of the earliest research on my health condition, POTS, came out of astronauts developing POTS-like symptoms of orthostatic intolerance and tachycardia due to deconditioning in low gravity.
painting of a capybara dressed as an astronaut in the space
astronaut capybara
There are also people who don't believe it's as serious as it is or they think there's going to be some medical advancement/miracle cure for me someday so I don't need to worry or they just think regardless, I should have a more positive hopeful attitude about my own suffering and limitations.
I shouldn't be surprised at the extent of ableism in this world but apparently I can have a diagnosis, imaging that proves it, a disease that's responding to immune suppression, become a full-time wheelchair user, physically look different and still have people question whether I'm actually sick.
I had to draw this cause it makes me very weepy 💖
#sailormoon #artemisii #fanart
🚨: NASA just dropped a full disk image of Earth taken by Artemis II 🤯
Screenshot from the NASA Artemis II launch livestream showing the core stage separation from a camera on the rocket.
What a fucking shot holy shit
Fun reminder disabled people generally cannot flee to other nations for sanctuary from increasing fascist dangers of eugenics. Including disabled people part of other marginalized communities (trans, otherwise queer, BIMPOC, etc.).
We are literally barred from immigration due to being “burdens”.
Do you know what "incentivises" a person (of any age) to seek a diagnosis of neurodiversity?
The fact that if you are neurodiverse, all the systems in this country have been made unbearable for you to function in.
I'm sorry if difference gives you the ick, but that's very much a you problem.
The gaslighting is unreal - about then and about now
Since it's still actively circulating, killing & disabling ppl, isolating already disabled ppl further, and mutating into new variants and mum's the word.
Yeah and it really tells me everything I need to know. I've never had a very positive interaction or friendship come after somebody has said something like that. They end up being apolitical or conservative usually and go on about how people are people and I don't see your whatever and no.
same
i really fucking need everyone who cares about me to care that i’m disabled. it dictates every aspect of my life. you can’t care about me without caring about my disability.
Ugh if one more person tells me they "don't care" that I'm disabled or chronically ill or queer etc.
I don't want them to not care, I want them to be accepting or open to learning and acceptance, not begrudgingly acknowledge my existence, pat themselves on the back, and never speak of it again.
I don't know how to convey how horrible it is to live in a world where my reasonable needs and accommodations around my health and safety have been dismissed my entire life by almost everybody that I needed to protect me.
And even with a diagnosis, that's still happening.
Covid can still kill you.
Covid can make it easier for other things to kill you.
Just because it doesn’t kill you right away doesn’t mean it won’t kill you or contribute to killing you.
Covid kills.
Long covid kills.
Immune damage kills.
Chronic inflammation kills.
parade.com/health/dange...
Disability and chronic illness can happen to anyone.
I think about this all the time. Masks - which are proven to work, btw! - have become so mocked and vilified by even ppl who call themselves progressives that any new pandemic with a slightly higher death rate is going to drop us all like flies
My life is not a fucking cozy fantasy novel. I'm in horrible pain all the time. I've lost basically everything. I'm medically fragile and bedbound. This is not fun or cute. I won't let people keep pretending it is so they feel less uncomfortable about my suffering.
I cannot reiterate enough with the frequency and gravity it deserves that every reinfection increases the cumulative risk of Long COVlD.
Our PMC survey data (n>2,000) suggest it is rare to avoid LC after 5+ known infections. I'll talk more about that again Sunday night in Becky's Space.
This is a graphic with yellow background and black text that reads: Alice’s Celebration of Life will happen on March 25th, 2026. While close friends & family will gather in-person in San Francisco, all of Alice’s many admirers, and friends from around the world will be able to join the celebration through livestream. More details about how to tune into the livestream, and other satellite locations for the celebration will be shared. We are mindful that in this moment of so many painful events going on that we continue to carry Alice’s enduring spirit for disabled rage and her maximalist love for life. Wherever and however you choose to celebrate and honor Alice in the coming months, we welcome all of these ways and the many more that will continue to keep Alice’s legacy with us. (Posted by Sandy Ho)
Sharing from Alice Wong's IG account. Alice's Celebration of Life will be on March 25, 2026.
Friendly reminder: both Trump and Biden had the same plan for Covid. Wait for a vaccine, declare victory. Change goalposts. Stop testing.
folks if the LA times is acknowledging covid as an ongoing mass disabling event it is definitely an ongoing mass disabling event
March is #LongCovidAwarenessMonth
Despite lack of information in the media about the harm SARSCOV2 infections are doing, especially these days when most countries have reduced access to boosters significantly, SARSCOV2 hasn't become milder and #LongCovid still happens. Millions are chronically ill.