“Why should a French or a German citizen be born with access to world-class services and well-protected rights (actual implementation on the basis of minority status may differ), while a Somalian citizen is not only denied those things, but also faces huge obstacles in becoming a citizen (or even a resident) of anywhere else? If you are born a citizen of Japan, there are 190 countries you can travel to freely without a visa; if you are a citizen of Afghanistan, there are only 25. If you are born a U.K. citizen, and feel like a change of scene, you can pay $7 for permission to go to Canada, hop on a flight, and stay for up to six months without anyone bothering you. If you are born in a refugee camp, it can take years before you even get a chance to live in a place like Canada. So how can we possibly consider ourselves to be people who care about freedom and autonomy, when thanks to borders our destinies are practically assigned to us at birth? Is it absurd to form your own state? Or is it more absurd to have states in the first place?”
TIL “Yankee Doodle” was written by the British to mock americans. “Doodle” is thought to come from the German “dödel”, meaning “fool” or “simpleton” and “macaroni,” a flamboyantly stylish type of dress, painting the Yankees as morons who thought placing a feather in one’s cap made them a “dandy.”
Ive been to this art installation when it was in Seattle it was made by an indigenous artist if I remember correctly it has small patches of astroturf in front of a black and white American flag with a sign that invites people “kneel and join in the screams of the American national anthem”
This piece is called Neon American Anthem bu indigenous artist Nicholas Galanin “to mourn the loss of lives, freedoms, and safety for people and lands subjected to American violence, and to protest continuing oppression.”
Text below the line to make it easier to read!
[Image 1 Text: I’VE COMPOSED A NEW AMERICAN NATIONAL ANTHEM TAKE A KNEE AND SCREAM UNTILL YOU CAN’T BREATHE /end]
[Image 2 Text: If we sen you our land, you must remember, and teach your children. that the mers are our brothers and yours, and you must henceforth sive the rivers the kindness you would give to any brother.
The vtite man does not understand. One portion of land is the same to his ss se met lar he is a wanderer who comes in the night and borrows from the land whatever he needs. The earth is not his brother, but his enemy and when he has won the struggle. he moves on. He leaves Is lathe's craves behind and he does not care. He kidnaps the earth tam is thiaten And he does not care. The father's graves and the childrents tirtright are forgotten by the white man, who treats his nother the eaith and his brother the sky as things to be bought. plackes, and sald. tike sheep, bread, or bright beads. In this way, tie dog al appelte will devour the rich earth and leave only a desert.
Neon American Anthem is a participatory installation designed to activate the American Art galleries at the Seattle Art Museum. The work offers visitors a place to kneel and follow the directive of a neon sign on the wall that reads, "I've composed a new American national anthem: take a knee and scream until you can't breathe." The work creates an intersectional space for catharsis; to mourn the loss of lives, freedoms, and safety for people and lands subjected to American violence, and to protest continuing oppression.
The neon sign embodies capitalism, its text a pointed reference to the murders of Eric Garner, George Floyd, Tyre Nichols and all people of color who have been murdered at the hands of police and agents of the American state. Asking participants to take a knee is a position of deference turned refusal; to scream until you can't breathe encompasses protest aimed at tearing down the systems built to enforce Whiteness, White privilege, heteropatriarchy and capitalist control. / end]
Made this post about 15 minutes after the repair guy who fixed the pump on my dishwasher packed up his tools and left, as the dishwasher was whirring along doing my dishes from that morning.
He said the exact same thing, which I did not know before that, so spreading this knowledge.
the ruler is hosting festivities in the capital while the nation collapses, and heretics have caused a schism in the catholic church. i love living in the middle ages.
did a bit of driving through the state of georgia today and wound up driving through a small town that i later discovered was called newborn, which is an odd name but doesn’t technically have anything wrong with it, except for the fact that i nearly gave myself whiplash doing a double-take at a building sign advertising NEWBORN TAXIDERMY
people vaguely saying 'the horrors' as shorthand for 'life problems, don't worry about it' in conversations where the problems are not going to be delved into has got to be one of my favorite new Ways Of Speaking that has emerged. like it's polite and vague and succinct enough for impersonal conversation but also extremely honest. it's very funny. The Horrors. we all know of them.
i think we should be talking about the semi-recent advancements in cystic fibrosis treatment like all the time every day. there hasn’t been a drug like this since AZT medications for HIV infection it is truly fucking miraculous and very important
basically: cystic fibrosis is a genetic disease which makes the mucous a person generates extra sticky. it used to kill people in infancy, then with advancements in medical tech it killed people in young childhood, and until very recently cystic fibrosis patients could expect to live until about thirty years old with consistent painful lung infections and complications.
in 2019 the FDA approved a drug called trikafta (which is really three drugs in one) for cystic fibrosis treatment. what it essentially does is patch up the malfunctioning proteins that cause the extra sticky mucus. trikafta is effective on about 90% of cystic fibrosis patients.
people who had spent their entire lives in and out of hospitals, on and off of ventilators, suffering from pneumonia and sometimes treated through painful procedures like intubation took this drug, got out of bed, coughed up an entire lifetimes worth of mucus out of their lungs over the course of a few hours, breathed clearly for perhaps the first time in their lives, and now go on to live well into their seventies.
like isn’t that insane. isn’t that amazing. doesn’t that give you hope for the future of medical advancements and treatment. fuck. i think about it all the time……
For the people asking "well how do we know people are living that long if it's so new????" Here's a page from the CF foundation about life expectancy.
Additionally, it should be noted that metrics like life expectancy are in no way a guarantee of... Anything. There are significant outlier CF patients who are at an advanced age now despite the odds due to a variety of different factors, having lived the majority of their lives before the development of modulators.
But the fact remains that the odds are better now than they have ever ever been before, by leaps and bounds. It isn't cured, and many patients still need significant treatment in addition to Trikafta, but it is so much better than anyone could have dreamed of twenty years ago, and that is a triumph.
Yes! My sister has a serious form of cf and finally is living a more comfortable and active life. She was also part of many of the clinical trials leading to these breakthroughs due to the nature of her cf. It's been very exciting to see.
That's absolutely incredible. Don't get me wrong. It's miraculous from a clinical standpoint. But, uhh. Not to be a downer but I need people to see this so they stay angry and stay real about what medical breakthroughs actually mean for patients. When I call something "survival gatekeeping", this is what I mean:
That is per month with the most common coupon people are likely to use.
But don't worry, there's grants and patient assistance programs you can apply for. 🤞🫠 Most people in high income countries like the USA can get it "covered" through insurance for fewer thousands of dollars. Or even less if your insurance is good or the manufacturer likes how poor and/or on Medicaid you are! A good social worker will help you with the process, and make sure your yearly reapplications and PAs are done a little early so they have time to think about it before you run out. Jesus Christ.
NEVER look at something like this and navigate away feeling better about things without asking how much it costs and who can get it. NEVER. It isn't revolutionary until poor people can access it without a struggle.
Vertex doesn't just charge a ton of money. They actively block generics and decline to make it available in developing nations.
Reshma Kewalramani, the current CEO of Vertex Pharmaceuticals, makes $20.6 million a year. The prior CEO, Jeffrey Leiden, is still on the board and makes $8.6 million a year.
