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mostlysignssomeportents · 4 months ago

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Unpersoned

Support me this summer on the Clarion Write-A-Thon and help raise money for the Clarion Science Fiction and Fantasy Writers' Workshop!

My latest Locus Magazine column is "Unpersoned." It's about the implications of putting critical infrastructure into the private, unaccountable hands of tech giants:

https://locusmag.com/2024/07/cory-doctorow-unpersoned/

The column opens with the story of romance writer K Renee, as reported by Madeline Ashby for Wired:

https://www.wired.com/story/what-happens-when-a-romance-author-gets-locked-out-of-google-docs/

Renee is a prolific writer who used Google Docs to compose her books, and share them among early readers for feedback and revisions. Last March, Renee's Google account was locked, and she was no longer able to access ten manuscripts for her unfinished books, totaling over 220,000 words. Google's famously opaque customer service – a mix of indifferently monitored forums, AI chatbots, and buck-passing subcontractors – would not explain to her what rule she had violated, merely that her work had been deemed "inappropriate."

Renee discovered that she wasn't being singled out. Many of her peers had also seen their accounts frozen and their documents locked, and none of them were able to get an explanation out of Google. Renee and her similarly situated victims of Google lockouts were reduced to developing folk-theories of what they had done to be expelled from Google's walled garden; Renee came to believe that she had tripped an anti-spam system by inviting her community of early readers to access the books she was working on.

There's a normal way that these stories resolve themselves: a reporter like Ashby, writing for a widely read publication like Wired, contacts the company and triggers a review by one of the vanishingly small number of people with the authority to undo the determinations of the Kafka-as-a-service systems that underpin the big platforms. The system's victim gets their data back and the company mouths a few empty phrases about how they take something-or-other "very seriously" and so forth.

But in this case, Google broke the script. When Ashby contacted Google about Renee's situation, Google spokesperson Jenny Thomson insisted that the policies for Google accounts were "clear": "we may review and take action on any content that violates our policies." If Renee believed that she'd been wrongly flagged, she could "request an appeal."

But Renee didn't even know what policy she was meant to have broken, and the "appeals" went nowhere.

This is an underappreciated aspect of "software as a service" and "the cloud." As companies from Microsoft to Adobe to Google withdraw the option to use software that runs on your own computer to create files that live on that computer, control over our own lives is quietly slipping away. Sure, it's great to have all your legal documents scanned, encrypted and hosted on GDrive, where they can't be burned up in a house-fire. But if a Google subcontractor decides you've broken some unwritten rule, you can lose access to those docs forever, without appeal or recourse.

That's what happened to "Mark," a San Francisco tech workers whose toddler developed a UTI during the early covid lockdowns. The pediatrician's office told Mark to take a picture of his son's infected penis and transmit it to the practice using a secure medical app. However, Mark's phone was also set up to synch all his pictures to Google Photos (this is a default setting), and when the picture of Mark's son's penis hit Google's cloud, it was automatically scanned and flagged as Child Sex Abuse Material (CSAM, better known as "child porn"):

https://pluralistic.net/2022/08/22/allopathic-risk/#snitches-get-stitches

Without contacting Mark, Google sent a copy of all of his data – searches, emails, photos, cloud files, location history and more – to the SFPD, and then terminated his account. Mark lost his phone number (he was a Google Fi customer), his email archives, all the household and professional files he kept on GDrive, his stored passwords, his two-factor authentication via Google Authenticator, and every photo he'd ever taken of his young son.

The SFPD concluded that Mark hadn't done anything wrong, but it was too late. Google had permanently deleted all of Mark's data. The SFPD had to mail a physical letter to Mark telling him he wasn't in trouble, because he had no email and no phone.

Mark's not the only person this happened to. Writing about Mark for the New York Times, Kashmir Hill described other parents, like a Houston father identified as "Cassio," who also lost their accounts and found themselves blocked from fundamental participation in modern life:

https://www.nytimes.com/2022/08/21/technology/google-surveillance-toddler-photo.html

Note that in none of these cases did the problem arise from the fact that Google services are advertising-supported, and because these people weren't paying for the product, they were the product. Buying a $800 Pixel phone or paying more than $100/year for a Google Drive account means that you're definitely paying for the product, and you're still the product.

What do we do about this? One answer would be to force the platforms to provide service to users who, in their judgment, might be engaged in fraud, or trafficking in CSAM, or arranging terrorist attacks. This is not my preferred solution, for reasons that I hope are obvious!

We can try to improve the decision-making processes at these giant platforms so that they catch fewer dolphins in their tuna-nets. The "first wave" of content moderation appeals focused on the establishment of oversight and review boards that wronged users could appeal their cases to. The idea was to establish these "paradigm cases" that would clarify the tricky aspects of content moderation decisions, like whether uploading a Nazi atrocity video in order to criticize it violated a rule against showing gore, Nazi paraphernalia, etc.

This hasn't worked very well. A proposal for "second wave" moderation oversight based on arms-length semi-employees at the platforms who gather and report statistics on moderation calls and complaints hasn't gelled either:

https://pluralistic.net/2022/03/12/move-slow-and-fix-things/#second-wave

Both the EU and California have privacy rules that allow users to demand their data back from platforms, but neither has proven very useful (yet) in situations where users have their accounts terminated because they are accused of committing gross violations of platform policy. You can see why this would be: if someone is accused of trafficking in child porn or running a pig-butchering scam, it would be perverse to shut down their account but give them all the data they need to go one committing these crimes elsewhere.

But even where you can invoke the EU's GDPR or California's CCPA to get your data, the platforms deliver that data in the most useless, complex blobs imaginable. For example, I recently used the CCPA to force Mailchimp to give me all the data they held on me. Mailchimp – a division of the monopolist and serial fraudster Intuit – is a favored platform for spammers, and I have been added to thousands of Mailchimp lists that bombard me with unsolicited press pitches and come-ons for scam products.

Mailchimp has spent a decade ignoring calls to allow users to see what mailing lists they've been added to, as a prelude to mass unsubscribing from those lists (for Mailchimp, the fact that spammers can pay it to send spam that users can't easily opt out of is a feature, not a bug). I thought that the CCPA might finally let me see the lists I'm on, but instead, Mailchimp sent me more than 5900 files, scattered through which were the internal serial numbers of the lists my name had been added to – but without the names of those lists any contact information for their owners. I can see that I'm on more than 1,000 mailing lists, but I can't do anything about it.

Mailchimp shows how a rule requiring platforms to furnish data-dumps can be easily subverted, and its conduct goes a long way to explaining why a decade of EU policy requiring these dumps has failed to make a dent in the market power of the Big Tech platforms.

The EU has a new solution to this problem. With its 2024 Digital Markets Act, the EU is requiring platforms to furnish APIs – programmatic ways for rivals to connect to their services. With the DMA, we might finally get something parallel to the cellular industry's "number portability" for other kinds of platforms.

If you've ever changed cellular platforms, you know how smooth this can be. When you get sick of your carrier, you set up an account with a new one and get a one-time code. Then you call your old carrier, endure their pathetic begging not to switch, give them that number and within a short time (sometimes only minutes), your phone is now on the new carrier's network, with your old phone-number intact.

This is a much better answer than forcing platforms to provide service to users whom they judge to be criminals or otherwise undesirable, but the platforms hate it. They say they hate it because it makes them complicit in crimes ("if we have to let an accused fraudster transfer their address book to a rival service, we abet the fraud"), but it's obvious that their objection is really about being forced to reduce the pain of switching to a rival.

There's a superficial reasonableness to the platforms' position, but only until you think about Mark, or K Renee, or the other people who've been "unpersonned" by the platforms with no explanation or appeal.

The platforms have rigged things so that you must have an account with them in order to function, but they also want to have the unilateral right to kick people off their systems. The combination of these demands represents more power than any company should have, and Big Tech has repeatedly demonstrated its unfitness to wield this kind of power.

This week, I lost an argument with my accountants about this. They provide me with my tax forms as links to a Microsoft Cloud file, and I need to have a Microsoft login in order to retrieve these files. This policy – and a prohibition on sending customer files as email attachments – came from their IT team, and it was in response to a requirement imposed by their insurer.

The problem here isn't merely that I must now enter into a contractual arrangement with Microsoft in order to do my taxes. It isn't just that Microsoft's terms of service are ghastly. It's not even that they could change those terms at any time, for example, to ingest my sensitive tax documents in order to train a large language model.

It's that Microsoft – like Google, Apple, Facebook and the other giants – routinely disconnects users for reasons it refuses to explain, and offers no meaningful appeal. Microsoft tells its business customers, "force your clients to get a Microsoft account in order to maintain communications security" but also reserves the right to unilaterally ban those clients from having a Microsoft account.

There are examples of this all over. Google recently flipped a switch so that you can't complete a Google Form without being logged into a Google account. Now, my ability to purse all kinds of matters both consequential and trivial turn on Google's good graces, which can change suddenly and arbitrarily. If I was like Mark, permanently banned from Google, I wouldn't have been able to complete Google Forms this week telling a conference organizer what sized t-shirt I wear, but also telling a friend that I could attend their wedding.

Now, perhaps some people really should be locked out of digital life. Maybe people who traffick in CSAM should be locked out of the cloud. But the entity that should make that determination is a court, not a Big Tech content moderator. It's fine for a platform to decide it doesn't want your business – but it shouldn't be up to the platform to decide that no one should be able to provide you with service.

This is especially salient in light of the chaos caused by Crowdstrike's catastrophic software update last week. Crowdstrike demonstrated what happens to users when a cloud provider accidentally terminates their account, but while we're thinking about reducing the likelihood of such accidents, we should really be thinking about what happens when you get Crowdstruck on purpose.

The wholesale chaos that Windows users and their clients, employees, users and stakeholders underwent last week could have been pieced out retail. It could have come as a court order (either by a US court or a foreign court) to disconnect a user and/or brick their computer. It could have come as an insider attack, undertaken by a vengeful employee, or one who was on the take from criminals or a foreign government. The ability to give anyone in the world a Blue Screen of Death could be a feature and not a bug.

It's not that companies are sadistic. When they mistreat us, it's nothing personal. They've just calculated that it would cost them more to run a good process than our business is worth to them. If they know we can't leave for a competitor, if they know we can't sue them, if they know that a tech rival can't give us a tool to get our data out of their silos, then the expected cost of mistreating us goes down. That makes it economically rational to seek out ever-more trivial sources of income that impose ever-more miserable conditions on us. When we can't leave without paying a very steep price, there's practically a fiduciary duty to find ways to upcharge, downgrade, scam, screw and enshittify us, right up to the point where we're so pissed that we quit.

Google could pay competent decision-makers to review every complaint about an account disconnection, but the cost of employing that large, skilled workforce vastly exceeds their expected lifetime revenue from a user like Mark. The fact that this results in the ruination of Mark's life isn't Google's problem – it's Mark's problem.

The cloud is many things, but most of all, it's a trap. When software is delivered as a service, when your data and the programs you use to read and write it live on computers that you don't control, your switching costs skyrocket. Think of Adobe, which no longer lets you buy programs at all, but instead insists that you run its software via the cloud. Adobe used the fact that you no longer own the tools you rely upon to cancel its Pantone color-matching license. One day, every Adobe customer in the world woke up to discover that the colors in their career-spanning file collections had all turned black, and would remain black until they paid an upcharge:

https://pluralistic.net/2022/10/28/fade-to-black/#trust-the-process

The cloud allows the companies whose products you rely on to alter the functioning and cost of those products unilaterally. Like mobile apps – which can't be reverse-engineered and modified without risking legal liability – cloud apps are built for enshittification. They are designed to shift power away from users to software companies. An app is just a web-page wrapped in enough IP to make it a felony to add an ad-blocker to it. A cloud app is some Javascript wrapped in enough terms of service clickthroughs to make it a felony to restore old features that the company now wants to upcharge you for.

Google's defenstration of K Renee, Mark and Cassio may have been accidental, but Google's capacity to defenstrate all of us, and the enormous cost we all bear if Google does so, has been carefully engineered into the system. Same goes for Apple, Microsoft, Adobe and anyone else who traps us in their silos. The lesson of the Crowdstrike catastrophe isn't merely that our IT systems are brittle and riddled with single points of failure: it's that these failure-points can be tripped deliberately, and that doing so could be in a company's best interests, no matter how devastating it would be to you or me.

If you'd like an e ssay-formatted version of this post to read or share, here's a link to it on pluralistic.net, my surveillance-free, ad-free, tracker-free blog:

https://pluralistic.net/2024/07/22/degoogled/#kafka-as-a-service

Image: Cryteria (modified) https://commons.wikimedia.org/wiki/File:HAL9000.svg

CC BY 3.0 https://creativecommons.org/licenses/by/3.0/deed.en

#pluralistic #google #monopoly #big tech #locus magazine #crowdstrike #single points of failure

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fatehbaz · 10 days ago

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About the entanglement of "science" and Empire. About geographic imaginaries. About how Empire appeals to and encourages children to participate in these scripts.

Was checking out this recent thing, from scavengedluxury's beloved series of posts looking at the archive of the Budapest Municipal Photography Company.

The caption reads: "Toys and board games, 1940."

And I think the text on the game-box in the back says something like "the whole world is yours", maybe?

(The use of appeals to science/progress in imperial narratives probably already well-known to many, especially for those familiar with Victorian era, Edwardian era, Gilded Age, early twentieth century, etc., in US and Europe.)

And was struck, because I had also recently gone looking through nemfrog's posts about the often-strange imagery of children's material in late nineteenth- and early twentieth-century US/Europe. And was disturbed/intrigued by this thing:

Caption here reads: "Game Board. Walter Mittelholzer's flight over Africa. [...] 1931. Commemorative game board map of Africa for a promotional game published for the N*stle Company, for tracking the trip of Walter Mittelholzer across Africa, the first pilot to fly a north-south route."

Hmm.

"Africa is for your consumption and pleasure! A special game celebrating German achievement, brought to you by the N*stle Company!"

1930s-era German national aspirations in Africa. A company which, in the preceding decade, had shifted focus to expand its cacao production (which would be dependent on tropical plantations). Adventure, excitement, knowledge, science, engineering prowess, etc. For kids!

Another, from a couple decades earlier, this time British.

Caption reads: "The "World's globe circler." A game board based on Nellie Bly's travels. 1890." At center, a trumpet, and a proclamation: "ALL RECORDS BROKEN".

Same year that the United States "closed the frontier" and conquered "the Wild West" (the massacre at Wounded Knee happened in December 1890). A couple years later, the US annexed Hawai'i; by decade's end, the US military was in both Cuba and the Philippines. The Scramble for Africa was taking place. At the time, Britain especially already had a culture of "travel writing" or "travel fiction" or whatever we want to call it, wherein domestic residents of the metropole back home could read about travel, tourism, expeditions, adventures, etc. on the peripheries of the Empire. Concurrent with the advent of popular novels, magazines, mass-market print media, etc. Intrepid explorers rescuing Indigenous peoples from their own backwardness. Many tales of exotic allure set in South Asia. Heroic white hunters taking down scary tigers. Elegant Englishwomen sipping tea in the shade of an umbrella, giggling at the elephants, the local customs, the strange sights. Orientalism, tropicality, othering.

I'd lately been looking at a lot of work on race/racism and imperative-of-empire in British scientific and pop-sci literature, especially involving South and Southeast Asia. (From scholars like Varun Sharma, Rohan Deb Roy, Ezra Rashkow, Jonathan Saha, Pratik Chakrabarti.) But I'd also lately been looking at Mashid Mayar's work, which I think closely suits this kinda thing with the board games. Some of her publications:

"From Tools to Toys: American Dissected Maps and Geographic Knowledge at the Turn of the Twentieth Century". In: Knowledge Landscapes North America, edited by Kloeckner et al., 2016.

"What on Earth! Slated Globes, School Geography and Imperial Pedagogy". European Journal of American Studies 16, number 3, Summer 2020.

Citizens and Rulers of the World: The American Child and the Cartographic Pedagogies of Empire, 2022.

Discussing her book, Mayar was interviewed by LA Review of Books in 2022. She says:

[Quote.] Growing up at the turn of the 20th century, for many American children, also meant learning to view the world through the lens of "home geography." [...] [T]hey inevitably responded to the transnational whims of an empire that had stretched its dominion across the globe [recent forays into Panama, Cuba, Hawai'i, the Philippines] [...]. [W]hite, well-to-do, literate American children [...] learned how to identify and imagine “homes” on the map of the world. [...] [T]he cognitive maps children developed, to which we have access through the scant archival records they left behind (i.e., geographical puzzles they designed and printed in juvenile periodicals) [...] mixed nativism and the logic of colonization with playful, appropriative scalar confusion, and an intimate, often unquestioned sense of belonging to the global expanse of an empire [...]. Dissected maps - that is, maps mounted on cardboard or wood and then cut into smaller pieces that children were to put back together - are a generative example of the ways imperial pedagogy [...] found its place outside formal education, in children's lives outside the classroom. [...] [W]ell before having been adopted as playthings in the United States, dissected maps had been designed to entertain and teach the children of King George III about the global spatial affairs of the British Empire. […] [J]uvenile periodicals of the time printed child-made geographical puzzles [...]. [I]t was their assumption that "(un)charted," non-American spaces (both inside and outside the national borders) sought legibility as potential homes, [...] and that, if they did not do so, they were bound to recede into ruin/"savagery," meaning that it would become the colonizers' responsibility/burden to "restore" them [...]. [E]mpires learn from and owe to childhood in their attempts at survival and growth over generations [...]. [These] "multigenerational power constellations" [...] survived, by making accessible pedagogical scripts that children of the white and wealthy could learn from and appropriate as times changed [...]. [End quote.] Source: Words of Mashid Mayar, as transcribed in an interviewed conducted and published by M. Buna. "Children's Maps of the American Empire: A Conversation with Mashid Mayar". LA Review of Books. 11 July 2022.

Some other stuff I was recently looking at, specifically about European (especially German) geographic imaginaries of globe-as-playground:

The Play World: Toys, Texts, and the Transatlantic German Childhood (Patricia Anne Simpson, 2020) /// "19th-Century Board Game Offers a Tour of the German Colonies" (Sarah Zabrodski, 2016) /// Advertising Empire: Race and Visual Culture in Imperial Germany (David Ciarlo, 2011) /// Learning Empire: Globalization and the German Quest for World Status, 1875-1919 (Erik Grimmer-Solem, 2019) /// “Ruling Africa: Science as Sovereignty in the German Colonial Empire and Its Aftermath” (Andrew Zimmerman. In: German Colonialism in a Global Age, 2014) /// "Exotic Education: Writing Empire for German Boys and Girls, 1884-1914". (Jeffrey Bowersox. In: German Colonialism and National Identity, 2017) /// Raising Germans in the Age of Empire: Youth and Colonial Culture, 1871-1914 (Jeff Bowersox, 2013) /// "[Translation:] (Educating Modernism: A Trade-Specific Portrait of the German Toy Industry in the Developing Mass-Market Society)" (Heike Hoffmann, PhD dissertation, Tubingen, 2000) /// Home and Harem: Nature, Gender, Empire, and the Cultures of Travel (Inderpal Grewal, 1996) /// "'Le rix d'Indochine' at the French Table: Representation of Food, Race and the Vietnamese in a Colonial-Era Board Game" (Elizabeth Collins, 2021) /// "The Beast in a Box: Playing with Empire in Early Nineteenth-Century Britain" (Romita Ray, 2006) /// Playing Oppression: The Legacy of Conquest and Empire in Colonialist Board Games (Mary Flanagan and Mikael Jakobsson, 2023)

#mashid mayar book is useful also the Playing Oppression book is open access online if you want #in her article on slated globes mayar also mentions how european maps by 1890s provoked a sort of replete homogenous filling in of globe #where european metropole thought of itself as having sufficiently mapped the planet by now knit into neat web of interimperial trade #and so european apparent knowledge of globe provided apparently enlightened position of educating or subjugating the masses #whereas US at time was more interested in remapping at their discretion #a thing which relates to what we were talking about in posts earlier today where elizabeth deloughrey describes twentieth century US #and its aerial photographic and satellite perspectives especially of Oceania and Pacific as if it now understood the totality of the planet #ecologies #tidalectics #geographic imaginaries #mashid mayar

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leothil · 4 months ago

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fic recs: archive edition 30

I was considering putting this project on hiatus over the summer, especially as I'm away at our summer cottage for several weeks now, but I've gotten asked if new rec lists will be out and that made me quite happy! :) So here you go! We're moving into 2022 now and the fandom was slowly starting to see some hints of where 5B would be taking us.

Previous rec lists are found here!

kiss me, kiss me (i don't know if i can let you go) by ipretendtobesane (@usereddie) As Buck is leaving one evening, Eddie kisses him goodbye without thinking about it. And Buck gives him a kiss back. And then it keeps happening, but they keep not talking about what it is. There's not way that can lead to any misunderstandings. 10.3k words, rated G

Come then, and be broken by @unintentionalgenius During a call Buck disappears without a trace, and a detective thinks it fits the pattern of a killer who seems to target first responders. Eddie does not handle it well, and we get to see him, Maddie, Bobby, and Chimney try to process their fear and grief. Heed the warnings and tags. 98.2k words, rated E

am i more than you bargained for yet? by lecornergirl (@clusterbuck) Or, what happens when I wax poetic about Eddie in eyeliner to Emma one too many times. The 118 put together a charity talent show, and if Eddie is going to perform an alt rock song, Buck will damn well make sure he looks the part too. 4.1k words, rated E

your voice as my lullaby by talktothesky (@thatbuddie) Soft established relationship fluff where Buck comes home a little drunk from a wine night with Maddie. 1.5k words, rated G

i'm headed to the mountains by hammersmiths (@henswilsons) Abby POV fic mostly during and after 3x18, of her trying to deal with Sam getting hurt in the train derailment and what she did to Buck, and why. 7.8k words, rated G

Happy reading, and thank you for the continued engagement with my posts!

#frida's archive project #fic rec #buddie fic rec #911 fic rec #buddie fic #911 fic #buddie fanfiction #911 fanfiction

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covid-safer-hotties · 4 months ago

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“You may now become who you thought was disposable”: COVID-19 Politics and Ableism - Published July 4, 2024

Unpaywalled link available in the link to our archive! A taste below!

“You may now become who you thought was disposable”: COVID-19 Politics and Ableism Andrea Kitta Journal of American Folklore, Volume 137, Number 545, Summer 2024, pp. 321-330 (Article) Published by American Folklore Society For additional information about this article muse.jhu.edu/article/931461[37.228.238.33] Project MUSE (2024-07-09 12:59 GMT) American Folklore Society

This essay critically examines the intersection of COVID-19, Long COVID, ableism, and health care disparities in the United States, emphasizing the transformative impact of COVID-19 as a mass disabling event with a disproportionate impact on marginalized communities. I also bring an autoethnographic lens to my experi- ence of COVID-19 and Long COVID, underscoring the importance of recognizing the diverse and often untellable experiences of individuals with disabilities and challenging the prevailing ableist perspectives embedded in society. I raise ethical considerations of storytelling in the context of Long COVID and urge researchers to embrace empathy and a more inclusive approach that challenges traditional notions of objectivity and distancing within academic research. I call for a collaborative approach between disability studies and folklore studies, encouraging scholars to interrogate and explore the traditions shaped by experiences of disability.

On December 13, 2020, disability advocate Imani Barbarin created a TikTok where she stated in the caption: “COVID is a mass disabling event. Things will never be the same. Never. You may now become who you thought was disposable” (Barbarin 2020). Barbarin was not overstating what is happening in the United States. In addition to the overwhelming number of US-based COVID-19 deaths (1.07 million as of November 1, 2022, according to the New York Times COVID-19 Tracker [New York Times 2023]), there is also an alarming number of cases of post-acute sequelae SARS-CoV-2 infection (PASC) or, as it’s more commonly known, Long COVID. Long COVID happens in anywhere from 5 percent to 50 percent of COVID-19 infections (although most medical experts agree the rate of Long COVID is somewhere around 20–30 percent of all infections). Long COVID affects women at a 22 percent higher rate than men (Sylvester et al. 2022:1391), and one study of Long COVID listed over 200 symptoms (Davis et al. 2021). The most common symptoms are fatigue, shortness of breath, cough, chest pain, brain fog, sleep disturbances, depression, joint pain, and dysautonomia (a dysfunction of the autonomic nervous system that typically presents as the inability to control temperature, breathing issues, and other things the body normally controls automatically).

Current estimates of those affected by Long COVID in the United States are between twenty and forty million. COVID-19 has also been shown to reactivate other viruses (Gold et al. 2021; Chen et al. 2022; Su et al. 2022), and one current theory is that Long COVID is the result of the COVID-19 virus continually being reactivated in the body (Klein et al. 2022). The latest research out of Yale University shows that COVID-19 cases entail cellular changes to the B and T cells, lower levels of cortisol, and that the virus can reactivate other viruses (Su et al. 2022:891–2). A recent study with more than 154,068 participants showed that “in the post-acute phase of COVID-19, there was increased risk of an array of incident neurologic sequelae including ischemic and hemorrhagic stroke, cognition and memory disorders, peripheral nervous system disorders, episodic disorders (for example, migraine and seizures), extrapyramidal and movement disorders, men tal health disorders, musculoskeletal disorders, sensory disorders, Guillain–Barré syndrome, and encephalitis or encephalopathy” (Xu, Xie, and Al-Aly 2022:2406).

Both COVID-19 and Long COVID exposed inequities in the US health care system, with Black, Indigenous, and people of color (BIPOC) populations dying from COVID-19 at much higher rates than White people at the beginning of the pandemic. Compared to White people, Alaskan Indian or Alaskan Natives died at 2.1 times the rate, Black people at 1.7 times the rate, Hispanic or Latinx people at 1.8 the rate, and Asian Americans at 0.8 times the rate (CDC 2023). According to the Washington Post’s analysis of CDC’s statistics, the rate of White people dying from COVID-19 became equal to the rate of other groups beginning in October 2021, then (except for the Omicron wave) increased, primarily due to White people being unvaccinated. Strangely enough, the equalizing trend wasn’t because death rates dropped for BIPOC people, but rather was due to the rise of the White death rate. Tasleem Padamsee, Assistant Professor at The Ohio State University who researched vaccine use and who is a member of the Ohio Department of Health’s work group on health equity, stated: “Usually, when we say a health disparity is disappearing, what we mean is that . . . the worse-off group is getting better. . . . We don’t usually mean that the group that had a systematic advantage got worse” (quoted in Johnson and Keating 2022).

Additionally, at the time of this writing in Spring 2023, the pandemic has been declared as “over” despite the fact that around 400 people are still dying per day in the United States and that those dying tend to be people with disabilities and the elderly (New York Times 2023). It’s difficult to imagine a situation where 400 deaths a day are deemed acceptable, yet here we are. Many people are desperate to “get back to normal” and seem to care more about going maskless or dining indoors than they do about those who are dying of COVID-19. Those who are unvaccinated and unmasked also seem to not understand (or not care) that the longer they continue on that path, the longer the pandemic will take to dissipate. Simply put, the majority of people do not seem to care about people with disabilities, including those who are immunocompromised, and their increased health risks due to the pandemic.

People with disabilities are an unrecognized health disparity population, and they died at much higher rates during COVID-19 (Krahn, Walker, and Correa-de-Araujo 2015). The National Council on Disability found that 181,000 people with disabilities in long-term care facilities died from COVID-19 in the first year of the pandemic, making up one-third of COVID-19 deaths at that time (National Council of Disabilities 2021). The report is worth quoting at length.

In addition to disproportionate fatalities, key findings of the report include:

People with disabilities faced a high risk of being triaged out of COVID-19 treatment when hospital beds, supplies, and personnel were scarce; were denied the use of their personal ventilator devices after admission to a hospital; and at times, were denied the assistance of critical support persons during hospital stays. Informal and formal Crisis Standards of Care (CSC), pronouncements that guided the provision of scarce health care resources in surge situations, targeted people with certain disabilities for denial of care (National Council of Disabilities 2021).

Students with disabilities were denied necessary educational services and supports during the pandemic and have experienced disruption and regression in their behavioral and educational goals (National Council of Disabilities 2021).

The growing shortage of direct care workers in existence prior to the pandemic became worse during the pandemic. Many such workers, who are women of color earning less than a living wage and lacking health benefits, left their positions for fear of contracting and spreading the virus, leaving people with disabilities and their caregivers without aid and some at risk of losing their independence or being institutionalized (National Council of Disabilities 2021).

Deaf, Hard of Hearing, Deaf-Blind, and Blind persons faced a profound communication gulf as masks became commonplace, making lip-reading impossible and sign language harder (National Council of Disabilities 2021).

#disability justice #disability politics #covid pandemic #covidー19 #mask up #covid #pandemic #covid 19 #coronavirus #wear a mask #sars cov 2 #still coviding #public health #wear a respirator #ableism #covid eugenics

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