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	<title type="text">s.e. smith | The Verge</title>
	<subtitle type="text">The Verge is about technology and how it makes us feel. Founded in 2011, we offer our audience everything from breaking news to reviews to award-winning features and investigations, on our site, in video, and in podcasts.</subtitle>

	<updated>2026-04-01T16:07:04+00:00</updated>

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			<author>
				<name>s.e. smith</name>
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			<title type="html"><![CDATA[Doing it for themselves]]></title>
			<link rel="alternate" type="text/html" href="https://www.theverge.com/cs/features/798638/trans-resources-online-sharing" />
			<id>https://www.theverge.com/?post_type=vm_custom_story&#038;p=798638</id>
			<updated>2026-04-01T12:07:04-04:00</updated>
			<published>2025-10-15T08:00:03-04:00</published>
			<category scheme="https://www.theverge.com" term="Features" />
							<summary type="html"><![CDATA[In 2014, Time announced the “Transgender Tipping Point.” The perilous conditions trans people are facing right now probably weren’t the progress the publication had in mind. In the US, state legislators and even the president are on the attack, while in the UK, J.K. Rowling is proudly bankrolling hate campaigns and the government just issued [&#8230;]]]></summary>
			
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<p class="has-text-align-none">In 2014, <em>Time</em> announced the “<a href="https://time.com/135480/transgender-tipping-point/">Transgender Tipping Point</a>.” The perilous conditions trans people are facing right now probably weren’t the progress the publication had in mind. In the US, <a href="https://abcnews.go.com/US/states-move-restrict-transgender-adult-care-amid-gender/story?id=118733720">state legislators</a> and even the <a href="https://www.whitehouse.gov/presidential-actions/2025/01/defending-women-from-gender-ideology-extremism-and-restoring-biological-truth-to-the-federal-government/">president</a> are on the attack, while in the UK, J.K. Rowling is <a href="https://uk.news.yahoo.com/j-k-rowling-uses-harry-111221188.html">proudly bankrolling hate campaigns</a> and the government just issued the Cass Review, <a href="https://www.scientificamerican.com/article/the-u-k-s-cass-review-badly-fails-trans-children/">a sloppy and ideological hit piece targeting trans youth</a>.&nbsp;</p>

<p class="has-text-align-none">Trans people simply want to be left to their own devices and engage in boring activities such as using restrooms, <a href="https://www.reddit.com/r/transgenderUK/comments/1mtwx8t/ms_trans_employee/?utm_source=share&amp;utm_medium=mweb3x&amp;utm_name=mweb3xcss&amp;utm_term=1&amp;utm_content=share_button">being allowed to work in peace</a>, and <a href="https://www.advocate.com/transgender/bluesky-jk-rowling-2673905189">posting on social media</a>, but apparently, such is not to be.&nbsp;</p>

<p class="has-text-align-none">Trans joy, ingenuity, and pride are lifelines of survival. So is access to information about trans health, whether public or private, from openly on social media to locked away in encrypted Signal chats with disappearing messages. Trans people rely on that information to advocate for themselves with providers who are often not equipped to address their needs and are sometimes actively resistant to the notion that people with lived experience may have expertise that they lack.&nbsp;</p>

<p class="has-text-align-none">“People are taking science to their doctors who don’t know how to work with them,” a transgender health researcher told <em>The Verge</em>. “There’s no curriculum for [trans healthcare]. They’re teaching doctors. There’s always a lot of heavy lifting for a trans patient.”</p>

<p class="has-text-align-none">(Several of the researchers I talked to for this piece requested anonymity to protect themselves from harassment.)</p>

<p class="has-text-align-none">Online communities can be hubs of critical healthcare information and advice from lived experience, but without clear accountability, they also have the potential to harbor bad actors and bad data. The line between who is safe, what is real, and what is not is becoming increasingly hard to find. Trans people are looking out for one another not just with information, but with tools to verify sources, which can be incredibly challenging in an era of AI slop and misinformation.&nbsp;</p>

<p class="has-text-align-none">Avery Edenfield, a researcher who focuses on transgender communities and communication, <a href="http://dx.doi.org/10.1080/10572252.2019.1607906">reported in a 2019 paper</a> that the way trans people communicate in these spaces is distinctive. Edenfield found that many people engage in the time-honored internet practice of “tactical technical communication,” which includes sharing “medical information or instructions” rooted in personal experience as well as linking to similar resources, a form of lay expertise. He also, however, describes “tactical referrals,” which point people toward peer-reviewed professional resources.&nbsp;</p>

<figure class="wp-block-pullquote"><blockquote><p><strong>The current grift economy on social media in particular explicitly rewards people for spreading fear and confusion</strong></p></blockquote></figure>

<p class="has-text-align-none">With tactical technical communication, trans people are directly talking about their own experience and providing information based on their lives, ranging from warnings about drug interactions to suggestions for questions to ask doctors. Many are offering lengthy, detailed, and constantly evolving guides to trans health; they are in a very real sense technical documents. With the high numbers of trans people in STEM and communications, it’s perhaps not surprising that engineers and communicators apply their talents to this particular arena. Many of these guides discuss the use of gender-affirming hormones, for example, with information on dosing and modes of delivery that patients can take to their doctors, who may take a conservative approach that some patients argue is outdated.&nbsp;</p>

<p class="has-text-align-none">TH, a trans person in the UK who spoke to <em>The Verge</em> via Signal, commented that after a lengthy waiting period to access care, “they didn’t prescribe me T until after March [2025], and even then, it was too low a level.” The guidance they accessed through online communities was extremely important when they pushed back on this dosing.</p>

<p class="has-text-align-none">Tactical referrals are links to vetted and reliable resources, including scientific research, guidelines to gender-affirming care, lists of providers, and information about laboratories. Trans people who are more comfortable slogging through academic papers and documentation use that skill to empower others. Some of these sources may come from transgender people who have lived experience, but those trans people are also professionals with scientific, medical, and other relevant training.&nbsp;&nbsp;</p>

<p class="has-text-align-none">Another researcher who studies communication and storytelling in healthcare contexts told <em>The Verge</em>, “A lot of the people in this community are very up on reading all kinds of scientific papers. They are smart, committed, loving people that are fighting to do good.”</p>

<p class="has-text-align-none">Sometimes you have to know a person who knows a person. These webs of care, which start with building trust through personal relationships, echo the <a href="https://www.smithsonianmag.com/history/the-underground-abortion-network-that-inspired-call-jane-180981032/">Jane Collective</a> of lay abortion providers that operated from 1969 to 1973. Trans people are relying on word of mouth to vouch for people, disseminating information in a highly distributed format that makes it effectively impossible to silence. Where one resource may fall, others rise, ensuring trans people can make informed choices about their transition and overall health. Seizing <a href="https://doi.org/10.1016/j.socscimed.2024.116681">autonomy and self-determination</a> in a culture that wants to kill you is a powerful application of lay expertise.&nbsp;</p>

<p class="has-text-align-none">Things aren’t all roses in these communities. The anonymity and pseudonymity some participants rely upon to stay safe can also obscure necessary information about someone’s background, especially with transphobes who may attempt to infiltrate to advance their agendas. Whether knowingly or accidentally, people may circulate misinformation — the current grift economy on social media in particular explicitly rewards people for spreading fear and confusion over those who are more measured and thoughtful, a failing of flash over substance. The spread of misinformation isn’t limited to bad intentions: People who mean well sometimes also share incorrect news, making it all the more important to provide people with the tools they need to verify information.&nbsp;</p>

<figure class="wp-block-pullquote"><blockquote><p><strong>A community with a deep history of bodyhacking and retaking control of their bodies believes that knowledge is power</strong></p></blockquote></figure>

<p class="has-text-align-none">Moderators do their best to identify and remove misinformation, or warn visitors about potentially unsafe recommendations or practices, users of several online resources told <em>The Verge</em>. In a closed community, some members may know each other offline, or have demonstrated that they are trustworthy. This word of mouth isn’t always enough to protect people, though. Many crowdsourced documents do note that they are not medical advice or replacement for seeing a doctor, but trans people used to <a href="https://ustranssurvey.org/report/health/">experiencing harassment and abuse in medical settings</a> may not be comfortable openly discussing their needs with care providers, counting on these resources to keep them safe.&nbsp;</p>

<p class="has-text-align-none">Ultimately, these resources play an important role in a culture where power imbalances in medicine, particularly when trans patients don’t know if they can trust a provider, can put trans patients in danger if they don’t have independent access to information about their health. With trans culture, and standards in trans health, moving faster than medical education, a community with a deep history of bodyhacking and retaking control of their bodies believes that knowledge is power.&nbsp;</p>

<p class="has-text-align-none">Q, a nonbinary trans person living in the UK, told <em>The Verge </em>via Signal that after fighting through NHS red tape and waiting lists, they discovered that providers had a very limited understanding of trans identity and relied on rigid, binaristic guidelines for gender-affirming care. “There’s also the thing of having to perform my transness to the satisfaction of (probably cis) medical professionals just so I can get some tits,” they said wryly, articulating a common problem for trans people who don’t have clearly defined binary outcomes in mind when they start hormones. Their understanding of the risks, benefits, and potential side effects of gender-affirming hormones, as well as awareness of the latest clinical recommendations for trans patients, was critically important for conversations about their care.&nbsp;</p>

<p class="has-text-align-none">Users of these spaces face another risk. Lawmakers and others who influence policy, citing “<a href="https://www.heritage.org/gender/commentary/what-gender-ideology">transgender ideology</a>,” are pushing for a world where talking about transgender people in any context is being treated as “<a href="https://www.bbc.co.uk/news/articles/c15lpwzzzqgo">adult material</a>,” equating existing while trans to pornography, something that could put individual hosts and disseminators of information at risk as well as threatening the existence of these resources. Restricting the presence of, and access to, online trans culture through measures such as <a href="https://apnews.com/article/internet-age-verification-supreme-court-def346d7bf299566a3687d8c4f224fec">age verification laws</a> is designed to suppress transness itself.</p>

<p class="has-text-align-none">Being cut off from community, along with access to scientifically accurate and current medical information, certainly won’t stop people from being transgender, but it would make being trans even more dangerous, whether it means taking medical risks without accurate information or feeling hopeless and cut off from community. People fighting for survival deserve access to the tools to make that fight safer, whatever that looks like for them, argues OHSU-PSU School of Public Health professor <a href="https://alexisdinno.com/files/Full%20CV.pdf">Alexis Dinno</a>, who is transgender herself and collaborated on a <a href="https://web.pdx.edu/~adinno/DIYGAC.html">public guide to risk reduction for adults using self-managed hormones</a>.&nbsp;</p>

<p class="has-text-align-none">She told <em>The Verge </em>that “I am always going to try to be as out as possible, professionally and personally.” The ability to “tinker” hormones safely with accurate scientific information to support her was essential for her own gender expression and health. People in positions of relative privilege, particularly with so many trans people living at the margins of multiple identities, need to make sure everyone can access that information.</p>

<p class="has-text-align-none">As the community reckons with the increasing existential threat, nearly a dozen trans people told <em>The Verge </em>that they were nervous to talk about resources that allow people to share information about trans health, even as they felt that such spaces are more important than ever. Most also noted, though, that the trans underground has been a quintessential part of the trans experience for centuries, and while the present moment may force some to step into the shadows, it cannot eliminate the fundamental beauty, glory, and joy of being trans. One person told me being trans was too cool to give up on; besides, as Q put it, “trying to legislate it out of existence just doesn’t work.”&nbsp;</p>
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			<entry>
			
			<author>
				<name>s.e. smith</name>
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			<title type="html"><![CDATA[How to disappear completely]]></title>
			<link rel="alternate" type="text/html" href="https://www.theverge.com/24321569/internet-decay-link-rot-web-archive-deleted-culture" />
			<id>https://www.theverge.com/24321569/internet-decay-link-rot-web-archive-deleted-culture</id>
			<updated>2025-12-19T11:57:09-05:00</updated>
			<published>2024-12-18T08:00:00-05:00</published>
			<category scheme="https://www.theverge.com" term="Culture" /><category scheme="https://www.theverge.com" term="Entertainment" /><category scheme="https://www.theverge.com" term="Features" /><category scheme="https://www.theverge.com" term="Internet Culture" /><category scheme="https://www.theverge.com" term="Labor" /><category scheme="https://www.theverge.com" term="Tech" /><category scheme="https://www.theverge.com" term="Web" />
							<summary type="html"><![CDATA[Every few days, I open my inbox to an email from someone asking after an old article of mine that they can’t find. They’re graduate students, activists, teachers setting up their syllabus, researchers, fellow journalists, or simply people with a frequently revisited bookmark, not understanding why a link suddenly goes nowhere. They’re people who searched [&#8230;]]]></summary>
			
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<img alt="" data-caption="" data-portal-copyright="Michelle Rohn / The Verge" data-has-syndication-rights="1" src="https://platform.theverge.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/25793121/How_to_disappear_completely.gif?quality=90&#038;strip=all&#038;crop=0,0,100,100" />
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<p>Every few days, I open my inbox to an email from someone asking after an old article of mine that they can’t find. They’re graduate students, activists, teachers setting up their syllabus, researchers, fellow journalists, or simply people with a frequently revisited bookmark, not understanding why a link suddenly goes nowhere. They’re people who searched the internet and found references, but not the article itself, and are trying to track an idea down to its source. They’re readers trying to understand the throughlines of society and culture, ranging from peak feminist blogging of the 2010s to shifts in cultural attitudes about disability, but coming up empty.</p>

<p>This is not a problem unique to me: a recent Pew Research Center study on digital decay found that <a href="https://www.pewresearch.org/data-labs/2024/05/17/when-online-content-disappears/">38 percent of webpages accessible in 2013 are not accessible today</a>. This happens because pages are taken down, URLs are changed, and entire websites vanish, as in the case of <a href="https://www.science.org/content/article/dozens-scientific-journals-have-vanished-internet-and-no-one-preserved-them">dozens of scientific journals</a> and all the critical research they contained. This is especially acute for news: researchers at Northwestern University estimate we will lose <a href="https://news.northwestern.edu/stories/2022/06/newspapers-close-decline-in-local-journalism/">one-third of local news sites</a> by 2025, and the digital-first properties that have risen and fallen are nearly impossible to count. The internet has become a series of lacunas, spaces where content used to be. Sometimes it is me searching for that content, spending an hour reverse engineering something in the Wayback Machine because I want to cite it, or read the whole article, not just a quote in another publication, an echo of an echo. It’s reached the point where I upload PDFs of my clips to <a href="https://www.realsesmith.com/clips">my personal website</a> in addition to linking to them to ensure they’ll remain accessible (until I stop paying my hosting fees, at least), thinking bitterly of the volume of work I’ve lost to shuttered websites, restructured links, hacks that were never repaired, servers disrupted, sometimes accompanied by false promises that an archive would be restored and maintained.</p>

<figure class="wp-block-pullquote alignleft"><blockquote><p>Who am I, if not my content?</p></blockquote></figure>

<p>When you describe yourself as a “writer” but your writing has become hard to find, it creates a crisis not just of profession, but identity. Who am I, if not my content? It is hard not to feel the disappearance of creative work as a different kind of death of the author, one in which readers can’t interpret my work because they can’t find it. It is a sort of fading away, of losing shape and relevance.</p>

<p>We live in a content era, the creator economy, in which everyone and their grandparent has turned into a “content creator.” We are watching the internet slip away as websites and apps rise and fall, swallowed by private equity, shuttered by burnout, or simply frozen in time — taking with it our memories, our cultural phenomena, our memes. In theory, as we like to tell Zoomers who are putting it all out there, “the internet is forever.” Employers and enemies can and will ferret out your worst moments on the internet, and even things that were, in theory, deleted can be resurfaced on mirrored sites and archives, with screenshots of half-forgotten forums. And yet, in reality, things can disappear as though they never were, sometimes quite suddenly. The same accessibility and low barriers to entry, that same easy come — I can set up a website in the time it takes me to finish this sentence — can also morph into an easy go. A social media account can be locked or banned for a real or perceived terms of service violation in the blink of an eye, a venerable feminist publication can <a href="https://www.opb.org/article/2022/04/17/portland-based-bitch-media-closing-doors-june-2022/">abruptly vanish</a>, a news startup can <a href="https://variety.com/2024/digital/news/the-messenger-shutting-down-effective-immediately-1235893470/">wink out of existence just as quickly as it rose</a> to prominence, and news organizations can nuke <a href="https://variety.com/2024/digital/news/mtv-news-website-archives-pulled-offline-1236047163/">decades of music journalism</a> or <a href="https://latenighter.com/news/paramount-axes-comedy-central-website-show-clips-library/">TV archives</a> at the flick of a switch. Restructured links and a <a href="https://www.wheresyoured.at/the-men-who-killed-google/">fundamentally broken search infrastructure</a> can shift an article out of view to all but the most determined. I wonder, for example, how long my <a href="https://magazine.catapult.co/column/stories/the-beauty-of-spaces-created-for-and-by-disabled-people">National Magazine Award-winning column</a> at <em>Catapult </em>will remain accessible online, living as it does <a href="https://www.nytimes.com/2023/02/23/business/elizabeth-koch-perception-box.html">at the whims of its owner, an eccentric billionaire</a>.</p>

<p>The loss of content is not a new phenomenon. It’s endemic to human societies, marked as we are by an ephemerality that can be hard to contextualize from a distance. For every Shakespeare, hundreds of other playwrights lived, wrote, and died, and we remember neither their names nor their words. (There is also, of course, a Marlowe, for the girlies who know.) For every Dickens, uncountable penny dreadfuls on cheap newsprint didn’t withstand the test of decades. For every iconic cuneiform tablet bemoaning poor customer service, countless more have been destroyed over the millennia.&nbsp;</p>

<p>This is a particularly complex problem for digital storage. For every painstakingly archived digital item, there are also hard drives corrupted, content wiped, media formats that are effectively unreadable and unusable, as I discovered recently when I went on a hunt for a reel-to-reel machine to recover some audio from the 1960s. Every digital media format, from the Bernoulli Box to the racks of servers <a href="https://www.hcn.org/articles/do-data-centers-mean-doomsville-for-renewable-energy/">slowly boiling the planet</a>, is ultimately doomed to obsolescence as it’s supplanted by the next innovation, with <a href="https://www.loc.gov/preservation/scientists/projects/cd_longevity.html">even the Library of Congress struggling to preserve digital archives</a>.&nbsp;&nbsp;</p>

<p>Historical content can be an incredibly informative resource, telling us how people lived and thought. But we must remember that it’s a small fraction of contemporaneous material that survives, even as we hope, of course, that it’s our own existence that is ultimately memorialized. Sometimes it is through the gaps that we read history or are forced to consider why some things are more likely to persist than others, are more remembered than others, why other histories are subject to active suppression, as we’re seeing across the United States with legislation targeting the accurate teaching of history.</p>

<p>So why does the present situation feel so severe? The shortest and most obvious answer is that things feel more real when we are living through them and they affect us directly; what we understand intellectually about history hits different when we’re living it, especially for the “Extremely Online” among us who are constantly saturated in a steady supply of mourning over the death of the internet and “you might be a millennial if [you recognize a floppy disc / landline phone / LAN party]” memes.&nbsp;</p>

<p>The longer answer speaks to the arc of historical trends that are fundamentally reshaping humanity, with the boom in artificial intelligence standing out as a particularly brutal contributor to our present state. While many have been enjoying a little AI, as a treat, dabbling in ChatGPT to help draft an angry letter to the utility company, or goofing around with increasingly unhinged Midjourney prompts, we are unwittingly contributing to the engine of our own despair.&nbsp;</p>

<p>There’s a phenomenon that happens where I live along the rugged coastline of Northern California, when conditions are right, or more accurately, wrong: a layer of green, foamy scum clings to the surface of the ocean so that when the waves wash your footprints away, they are replaced by a layer of vile, reeking slime dotted by writhing marine organisms. This is, at times, how the internet feels right now. We are being slowly erased, but instead of passing peacefully into the vale with the ebb and flow of soothing waves, we are being actively replaced by garbage.&nbsp;</p>

<figure class="wp-block-pullquote alignleft"><blockquote><p>How comfortable are we with the disappearance of entire swaths of careers and artistic pursuits?</p></blockquote></figure>

<p>Garbage created by an industry broadly referring to itself as “artificial intelligence” —&nbsp;a term so overused that it is starting to lose all meaning — devouring and then regurgitating our content, a froth of green, smelly foulness that rests on the sands where people once walked. I am starting to disassociate every time I get a new notification about terms of service in which I learn that my content will be used to train yet another large language model designed to replace me, as corporations attempt to replace creativity and joy with a mountain of trash. I attempt to negotiate for protective clauses in contracts and am rejected, lie awake at night wondering how much of my work has already been folded into systems generating billions in profits for their makers on the backs of our labor, sigh every time I log in to LinkedIn and all the writing jobs are actually advertisements for training the latest AI hotness.&nbsp;</p>

<p>The comparison with our green tides runs deeper than that, as AI is literally <a href="https://www.nature.com/articles/d41586-023-00843-2">burning up the world</a> in the name of profits, driving the climate change that <a href="https://www.nature.com/articles/nature.2017.21884">causes toxic algae blooms</a>. Much like the British tossing papyrus and mummies into the hungry maws of steam engines, we are destroying history and culture to fuel the empire, and the empire is profit. The result is <a href="https://www.technologyreview.com/2022/12/20/1065667/how-ai-generated-text-is-poisoning-the-internet/">internet poisoning</a>, a landscape saturated in misinformation and AI garbage — at best <a href="https://www.theverge.com/2024/5/24/24164176/theyre-eating-the-damn-glue-pizza">comical</a>, at worst, <a href="https://gizmodo.com/ai-mushroom-id-dangerous-consumer-advocates-warn-1851355484">lethal</a>. For future generations interested in knowing more about the world we live in, it has the potential to make it nearly impossible to untangle fact from fiction, art from fakery. There is something deeply offensive in knowing not only that hundreds of thousands of my words have vanished, but that some LLM is probably crawling through the tattered fragments to churn out mockeries of the very real sources, research, and energy that once backed those words. They’ll be vomited back on the shores of my browser, squirming and stinking.&nbsp;</p>

<p>There is also a strange and bitter loss of autonomy in watching humans slowly disappear beyond a veil of AI murk and inherently unstable digital storage, a dark twist at a moment when so many of us are fighting for our right to exist in our own bodies. We have come to accept, without reading, the terms of service that assign the rights of our content to the platforms we post on, and when those platforms abruptly close or <a href="https://slate.com/technology/2022/10/instagram-account-deleted-no-warning-digital-rights.html">delete our content</a> or lock us out of our accounts, we mourn the loss as we receive a firsthand lesson in what it means to sign our digital rights away. When I choose to delete my tweets, take my self-hosted blog off the internet, or set up a finsta, I’m in control of my data destiny, but the loss of control when archives are maintained by the winners serves to make me feel small, forgotten, easily disposed of.</p>

<p>The notion that everything that ever has been and ever will be on the internet will always be there — potentially to haunt us — feels less true in an era when data is constantly disappearing. The internet is not, in fact, forever; sometimes the zombie of a bad take will linger, sure, but just as probably, we’ll vanish, as I recently discovered when I realized that one of my Twitter accounts, active from 2009–2023, had been wiped because I hadn’t logged in recently. An untold number of bon mots, educational threads, exchanges with fellow users, photographs, and of course, misinformed, shitty opinions I’d rather forget, simply gone, into the ether. It felt, perhaps irrationally, like being erased, like that person had never been.&nbsp;</p>

<p>I think sometimes of the <a href="https://science.nasa.gov/mission/voyager/voyager-golden-record-overview/">Voyager Golden Records</a>, spinning endlessly into eternity, a cry into the void that features a selection of carefully curated human experiences in an attempt to communicate the vastness of Earth’s history and culture to other beings. The offerings, selected by a committee led by Carl Sagan, include a photograph of a woman in a grocery store, the sound of footsteps, a sampling from <em>The Magic Flute, </em>an image of an astronaut in space, a human heartbeat. The process of picking and choosing what to include must have been agonizing and fraught, limited not just by storage considerations, but politics, pressure, and cultural hegemony. The result is a highly fragmented, erratic, selective view of what it means to be human, more a testimony of our limitations than of our potential, a reminder that archival work is not neutral, and a powerful case for diversifying the way we preserve information.&nbsp;</p>

<p class="has-end-mark">We can’t hope to capture every single fragment of the internet, from the first lagging days of DARPA to the videos attached to each TikTok sound, to preserve the fire hose of content we are all wallowing in. But we can have a conversation about which things we value and believe should be kept, which things should be allowed to disappear into the waves, and who among us stands to be remembered, echoing, like Sagan’s laughter, into the future. How comfortable are we with the disappearance of entire swaths of careers and artistic pursuits? And who is making these decisions — private equity or journalists, AI or archivists, billionaires or workers? The answers to these questions, and the way we define ourselves today, will shape our culture of the future.</p>
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			<entry>
			
			<author>
				<name>s.e. smith</name>
			</author>
			
			<title type="html"><![CDATA[Automating ableism]]></title>
			<link rel="alternate" type="text/html" href="https://www.theverge.com/24066641/disability-ableism-ai-census-qalys" />
			<id>https://www.theverge.com/24066641/disability-ableism-ai-census-qalys</id>
			<updated>2024-02-14T09:30:00-05:00</updated>
			<published>2024-02-14T09:30:00-05:00</published>
			<category scheme="https://www.theverge.com" term="AI" /><category scheme="https://www.theverge.com" term="Health" /><category scheme="https://www.theverge.com" term="Policy" /><category scheme="https://www.theverge.com" term="Politics" /><category scheme="https://www.theverge.com" term="Regulation" /><category scheme="https://www.theverge.com" term="Science" /><category scheme="https://www.theverge.com" term="Tech" />
							<summary type="html"><![CDATA[In December, the US Census proposed changes to how it categorizes disability. If implemented, the changes would have slashed the number of Americans who are counted as disabled, when experts say that disabled people are already undercounted.&#160; The Census opened its proposal to public comment; anyone can submit a comment on a federal agency rulemaking [&#8230;]]]></summary>
			
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<p>In December, the US Census proposed changes to <a href="https://nationalpartnership.org/new-census-proposal-would-reduce-disabled-women-girls-counted-nearly-10-million/">how it categorizes disability</a>. If implemented, the changes would have slashed the number of Americans who are counted as disabled, when experts say that disabled people are <a href="https://nlihc.org/resource/people-disabilities-and-2020-census">already undercounted</a>.&nbsp;</p>

<p>The Census opened its proposal to public comment; anyone can submit a comment on a federal agency rulemaking on their own. But in this specific case, the people who were most affected by the proposal had more obstacles in the way of giving their input.&nbsp;&nbsp;</p>

<p>&ldquo;It was really important to me to try to figure out how to enable those folks as best I could to be able to write and submit a comment,&rdquo; said Matthew Cortland, a senior fellow at Data for Progress. With that in mind, they created a GPT-4 bot assistant for people who wanted to submit their own comments. Cortland has run commenting campaigns targeting disability-related regulations in the past, but this was their first with the assistance of AI.&nbsp;</p>

<p>&nbsp;&ldquo;Thank you, this enabled me to produce the kind of comment I&rsquo;ve always wanted to produce,&rdquo; one person told them. &ldquo;There&rsquo;s too much <a href="https://www.health.harvard.edu/blog/what-is-covid-19-brain-fog-and-how-can-you-clear-it-2021030822076">brain fog</a> for me to do this right now.&rdquo;</p>

<p>Depending on who&rsquo;s counting, <a href="https://www.census.gov/newsroom/facts-for-features/2020/disabilities-act.html">12.6 percent</a> or even <a href="https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html">25 percent</a> of the population has disabilities. Disability itself is defined in myriad ways, but broadly encompasses physical, intellectual, and cognitive impairments along with chronic illnesses; a person with physical disabilities may use a wheelchair, while a severe, energy-limiting illness such as long covid might make it challenging for people to manage tasks of daily living.</p>

<p>AI &mdash;&nbsp;whether in the form of natural language processing, computer vision, or generative AI like GPT-4 &mdash;&nbsp;can have positive effects on the disability community,&nbsp;but generally, <a href="https://ainowinstitute.org/publication/disabilitybiasai-2019">the future of AI and disability</a> is looking fairly grim.&nbsp;</p>

<p>&ldquo;The way that AI is often kind of dealt with and used is essentially phrenology with math,&rdquo; says Joshua Earle, an assistant professor at the University of Virginia who connects the history of eugenics with technology. People who are unfamiliar with disability have negative views shaped by <a href="https://www.cjr.org/the_feature/journalism-disability-beat.php">media</a>, <a href="https://www.theguardian.com/commentisfree/2022/aug/02/beyonce-lizzo-ableism">pop culture</a>, <a href="https://www.bazelon.org/wp-content/uploads/2022/12/NYC-statement-final-12-12-22.pdf">regulatory frameworks</a>, and the people around them, viewing disability as a deficit rather than a <a href="https://disability.ucsf.edu/overview-disability-culture-and-identity">cultural identity</a>. A system that devalues disabled lives by custom and design is one that will <a href="https://civilrights.org/resource/next-steps-to-advance-equity-and-civil-rights-in-artificial-intelligence-and-technology-policy/">continue to repeat those errors in technical products</a>.&nbsp;</p>
<figure class="wp-block-pullquote alignleft"><blockquote><p>“The way that AI is often kind of dealt with and used is essentially phrenology with math”</p></blockquote></figure>
<p>This attitude is sharply illustrated in the debates over <a href="https://www.npr.org/2020/12/14/945056176/as-hospitals-fear-being-overwhelmed-by-covid-19-do-the-disabled-get-the-same-acc">care rationing at the height of the covid-19 pandemic</a>. It also shows up in the form of quality-adjusted life years (QALYs), an AI-assisted &ldquo;<a href="https://icer.org/our-approach/methods-process/cost-effectiveness-the-qaly-and-the-evlyg/">cost effectiveness</a>&rdquo; tool used in health care settings to determine &ldquo;quality of life&rdquo; via external metrics, not the intrinsic value of someone&rsquo;s life. For example, the inability to leave the home might be counted as a point against someone, as would a degenerative illness that limits physical activity or <a href="https://dsq-sds.org/index.php/dsq/article/view/9652">employability</a>. A low score may result in rejection of a given medical intervention in cost-benefit analyses; why engage in costly treatments for someone deemed likely to live a shorter life marred by disability?</p>

<p>The promise of AI is that automation will make work easier, but what exactly is being made easier? In 2023, a <a href="https://www.propublica.org/article/cigna-pxdx-medical-health-insurance-rejection-claims">ProPublica investigation</a> revealed that insurance giant Cigna was using an internal algorithm that automatically flagged coverage claims, allowing doctors to sign off on mass denials, which disproportionately targeted disabled people with complex medical needs. The <a href="https://www.theverge.com/2018/3/21/17144260/healthcare-medicaid-algorithm-arkansas-cerebral-palsy">health care system</a> is not the only arena in which algorithmic tools and AI can function against disabled people. It&rsquo;s a <a href="https://www.brookings.edu/articles/for-some-employment-algorithms-disability-discrimination-by-default/">growing commonality in employment</a>, where tools to screen job applicants can <a href="https://www.eeoc.gov/laws/guidance/americans-disabilities-act-and-use-software-algorithms-and-artificial-intelligence">introduce biases</a>, as can the <a href="https://www.technologyreview.com/2021/07/21/1029860/disability-rights-employment-discrimination-ai-hiring/">logic puzzles and games used by some recruiters</a>, or the <a href="https://blog.dol.gov/2021/11/01/how-artificial-intelligence-affects-workers-with-disabilities-a-new-toolkit-for-businesses">eye and expression tracking</a> that accompanies some interviews. More generally, says Ashley Shew, an associate professor at Virginia Tech who specializes in disability and technology, it &ldquo;feeds into extra surveillance on disabled people&rdquo; via technologies that single them out.</p>

<p>Technologies such as these often rely on two assumptions:&nbsp;that many people are <a href="https://archive.nytimes.com/takingnote.blogs.nytimes.com/2015/09/08/busting-the-myths-about-disability-fraud/">faking or exaggerating their disabilities</a>, making <a href="https://www.crfb.org/blogs/ideas-reduce-fraud-disability-system">fraud prevention</a> critical, and that a life with disability is <a href="https://www.nytimes.com/2016/10/05/opinion/a-disabled-life-is-a-life-worth-living.html">not a life worth living</a>. Therefore, decisions about resource allocation and social inclusion &mdash; whether <a href="https://www.theverge.com/2018/3/21/17144260/healthcare-medicaid-algorithm-arkansas-cerebral-palsy">home care services</a>, <a href="https://askjan.org/articles/Undue-Hardship-is-a-Process.cfm">access to the workplace</a>, or ability to reach people on social media &mdash; do not need to view disabled people as equal to nondisabled people. That attitude is reflected in the artificial intelligence tools society builds.&nbsp;</p>

<p>It doesn&rsquo;t have to be this way.</p>

<p>Cortland&rsquo;s creative use of GPT-4 to help disabled people engage in the political process is illustrative of how, in the right hands, AI can become a valuable accessibility tool. There are countless examples of this if you look in the right places &mdash;&nbsp;for instance, in early 2023, Midjourney released a feature that would <a href="https://twitter.com/midjourney/status/1643053450501169157">generate alt text for images</a>, increasing accessibility for blind and low-vision people.&nbsp;</p>

<p>Amy Gaeta, an academic and poet who specializes in interactions between humans and technology, also sees potential for AI that &ldquo;can take really tedious tasks for [disabled people] who are already overworked, extremely tired&rdquo; and automate them, filling out forms, for example, or offering practice conversations for job interviews and social settings. The same technologies could be used for activities such as fighting insurance companies over unjust denials.</p>

<p class="has-end-mark">&ldquo;The people who are going to be using it are probably going to be the ones who are best suited to understanding when it&rsquo;s doing something wrong,&rdquo; remarks Earle in the context of technologies developed around or for, but not with, disabled people. For a truly bright future in AI, the tech community needs to <a href="https://link.springer.com/article/10.1007/s43681-020-00004-5">embrace disabled people from the start</a> as innovators, programmers, designers, creators, and, yes, users in their own right who can materially shape the technologies that mediate the world around them.&nbsp;</p>
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			<entry>
			
			<author>
				<name>s.e. smith</name>
			</author>
			
			<title type="html"><![CDATA[Why disabled users joined the Reddit blackout]]></title>
			<link rel="alternate" type="text/html" href="https://www.theverge.com/2023/6/13/23759761/reddit-disability-accessibility-blackout-api-blind" />
			<id>https://www.theverge.com/2023/6/13/23759761/reddit-disability-accessibility-blackout-api-blind</id>
			<updated>2023-06-13T16:49:43-04:00</updated>
			<published>2023-06-13T16:49:43-04:00</published>
			<category scheme="https://www.theverge.com" term="Apps" /><category scheme="https://www.theverge.com" term="Creators" /><category scheme="https://www.theverge.com" term="Culture" /><category scheme="https://www.theverge.com" term="Entertainment" /><category scheme="https://www.theverge.com" term="Internet Culture" /><category scheme="https://www.theverge.com" term="News" /><category scheme="https://www.theverge.com" term="Reddit" /><category scheme="https://www.theverge.com" term="Tech" /><category scheme="https://www.theverge.com" term="Web" />
							<summary type="html"><![CDATA[The Reddit blackout is in its second day as more than 8,000 communities go dark to protest the tech giant&#8217;s plans to implement API pricing that users say is too high, too fast. It&#8217;s created a ripple effect from bored people not being able to access r/relationships to academics missing r/AskHistorians. In the process, it&#8217;s [&#8230;]]]></summary>
			
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<p>The Reddit blackout is in its second day as more than 8,000 communities go dark to protest the tech giant&rsquo;s <a href="https://reddit.com/r/modnews/comments/13wshdp/api_update_continued_access_to_our_api_for/">plans to implement API pricing</a> that users say is <a href="https://www.reddit.com/r/apolloapp/comments/144f6xm/apollo_will_close_down_on_june_30th_reddits/">too high, too fast</a>. It&rsquo;s created a ripple effect from bored people not being able to access r/relationships to academics missing r/AskHistorians. In the process, it&rsquo;s also highlighted an issue that often lurks in the darkness: accessibility.&nbsp;</p>

<p>Subreddits like r/blind, r/HardofHearing, and r/deaf are relatively small, but their concerns loom large in the protest. Some disabled users fear the API changes will threaten their ability to access the site. Because both Reddit&rsquo;s website and its official app fall short of their needs, they rely on third-party applications to navigate Reddit. Those third-party applications can&rsquo;t afford the API fees, and some, such as Apollo, are already <a href="https://www.reddit.com/r/apolloapp/comments/144f6xm/apollo_will_close_down_on_june_30th_reddits/">announcing that they&rsquo;re shutting down</a>.&nbsp;</p>

<p>Accessibility, broadly, includes the implementation of features that allow disabled people to access a built environment, whether physical or digital. <a href="https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html">One in four Americans are disabled</a> and have varying access needs, such as ramps, ASL interpreters, captions for videos, plain language information, and the ability to modify how text is displayed. Greater accessibility often benefits people in ways they don&rsquo;t even notice. Enlarged text or changed contrast are access features, for example, and fans of dark mode can <a href="https://www.nngroup.com/articles/dark-mode/">thank the disability community</a>.&nbsp;</p>

<p>&ldquo;If Reddit was a restaurant third party apps are franchises. We can get a burger from Reddit directly or from a franchise. The official Reddit location is at the top of a cliff. Disabled people can&rsquo;t get there. Reddit is charging franchise fees so high nobody else can afford to offer burgers,&rdquo; <a href="https://www.reddit.com/r/ModCoord/comments/147a55w/rblind_has_officially_went_dark/">reads a message</a> from the moderators of r/blind, one of the subreddits that joined the blackout.</p>

<p>In a conversation with <em>The Verge</em>, Norbert Rum, who founded r/blind in 2008, pointed out several places where Reddit&rsquo;s official app falls short of the Web Content Accessibility Guidelines (<a href="https://www.w3.org/WAI/standards-guidelines/wcag/">WCAG</a>), the set of standards used to guide developers in the creation of accessible apps and websites.&nbsp;</p>

<p>One is huge: people relying on <a href="https://www.w3.org/TR/WCAG21/#keyboard">keyboard-only navigation</a> can&rsquo;t actually use the app, a critical issue for people who rely on voice control. Reddit&rsquo;s official app is also not compatible with screen readers, which read content to blind and low-vision users and also provide navigational information.&nbsp;</p>
<figure class="wp-block-pullquote alignleft"><blockquote><p>Reddit’s official app is also not compatible with screen readers</p></blockquote></figure>
<p>In an AMA, CEO Steve Huffman <a href="https://www.reddit.com/r/reddit/comments/145bram/comment/jnkccq7/?utm_source=reddit&amp;utm_medium=web2x&amp;context=3">responded to a user query</a> about accessibility with: &ldquo;For our own apps, there is no excuse. We will do better.&rdquo; When asked for more information, Reddit spokesperson Tim Rathschmidt said the company is &ldquo;exploring a number of things at the moment&rdquo; but did not provide a timeline for features such as alt text for media and interactive controls.&nbsp;</p>

<p>Many third-party apps either have explicit accessibility features or integrate smoothly with iOS or Android&rsquo;s built-in accessibility options. Apple, in particular, is famous for its <a href="https://support.apple.com/guide/iphone/get-started-with-accessibility-features-iph3e2e4367/ios">accessible iPhone features</a>, such as VoiceOver, enabling accessibility shortcuts, and working seamlessly with Bluetooth hearing aids. These features can be extremely valuable for disabled people who can&rsquo;t access Reddit on desktop or simply prefer mobile due to its affordability or portability.</p>

<p>Reddit&rsquo;s culture relies on unpaid community moderators, and many of the mods, in turn, rely on tools in third-party apps with accessibility features that Reddit&rsquo;s official app doesn&rsquo;t have. In a post on r/traaaaaaannnnnnnnnns, moderator vibratoryblurriness discussed handling the bulk of the moderation as a disabled trans person who <a href="https://www.reddit.com/r/traaaaaaannnnnnnnnns/comments/144tnfl/thirdparty_api_access_or_i_am_so_tired/">would be unable to continue</a> without third-party apps.&nbsp;</p>

<p>In response to user outcry, Reddit <a href="https://www.theverge.com/2023/6/7/23752804/reddit-exempt-accessibility-apps-api-pricing-changes">introduced exemptions</a> for developers of &ldquo;non-commercial apps that address accessibility needs.&rdquo; Rathschmidt confirmed that two apps, Dystopia and RedReader, have received exemptions, and the company is in talks with &ldquo;a number of developers focused on accessibility.&rdquo; In the meantime, he said developers can <a href="https://www.reddit.com/wiki/api/">contact Reddit to learn more about exemptions</a>. Meanwhile, in <a href="https://www.reddit.com/r/reddit/comments/145bram/addressing_the_community_about_changes_to_our_api/">Friday&rsquo;s AMA</a> with Reddit&rsquo;s CEO, MostlyBlindGamer <a href="https://www.reddit.com/r/reddit/comments/145bram/comment/jnk2p9j/?utm_source=reddit&amp;utm_medium=web2x&amp;context=3">commented</a>: &ldquo;You ask for what you consider to be a fair price for access to your API, yet you expect developers to provide accessible alternatives to your apps for free.&rdquo;</p>

<p>Reddit appears to be making a distinction between accessibility apps and apps with access features, which might not necessarily qualify for exemptions; Rathschmidt did not respond to a request for clarification on exemption decisions. This kind of distinction often leads to absurd outcomes &mdash;&nbsp;for example, a dilemma where <a href="https://www.theverge.com/2022/7/12/23188738/ipad-speech-apraxia-assistive-tech-accessibility">the state will fund a $3,000 bulky purpose-built item</a> but not an iPad with a communication app, which would be more effective. But beyond the sheer inefficiency, siloing disabled people to a handful of sanctioned apps is a tiny echo of how disabled people have been <a href="https://www.npr.org/2019/06/15/729955321/how-some-schools-restrain-or-seclude-students-a-look-at-a-controversial-practice">pushed out of public life</a> <a href="https://harvardcrcl.org/wp-content/uploads/sites/10/2013/01/Schweik_Vol46_Amicus.pdf">time and time again</a>.&nbsp;</p>
<figure class="wp-block-pullquote alignleft"><blockquote><p>Disabled users say the most obvious fix to their accessibility woes is an overhaul of the official app</p></blockquote></figure>
<p>Disabled users say the most obvious fix to their accessibility woes is an overhaul of the official app. This could include fixes to address outstanding access issues, such as the need for alternate text and clearly labeled buttons that can interact with screen readers appropriately, and might integrate options to address cognitive disabilities and physical impairments such as Parkinson&rsquo;s or tremors, which can make it very hard to use apps without making mistakes. In the short term, they want their beloved apps to be able to continue operating, which would require revisiting the API pricing and the timeline for implementation.&nbsp;&nbsp;</p>

<p>As for r/blind, it remains dark in protest, with a bitter twist: thanks to access conflicts, <a href="https://twitter.com/rumster/status/1668048885527224324">only a sighted person</a> could actually flip the switch that set the community to private.&nbsp;</p>
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			<entry>
			
			<author>
				<name>s.e. smith</name>
			</author>
			
			<title type="html"><![CDATA[The revenge of the pop-up]]></title>
			<link rel="alternate" type="text/html" href="https://www.theverge.com/tech/23653544/pop-up-website-ad-ui-design" />
			<id>https://www.theverge.com/tech/23653544/pop-up-website-ad-ui-design</id>
			<updated>2023-04-04T09:00:00-04:00</updated>
			<published>2023-04-04T09:00:00-04:00</published>
			<category scheme="https://www.theverge.com" term="Culture" /><category scheme="https://www.theverge.com" term="Design" /><category scheme="https://www.theverge.com" term="Entertainment" /><category scheme="https://www.theverge.com" term="Internet Culture" /><category scheme="https://www.theverge.com" term="Tech" /><category scheme="https://www.theverge.com" term="Web" />
							<summary type="html"><![CDATA[Do you like feeling besieged? Enjoy sensory bombardment? Revel in obnoxious interruptions? Have I got the internet for you! No, it&#8217;s not the &#8217;90s golden age of pop-ups. It&#8217;s today&#8217;s hell, with the new proliferation of cookie notices, subscription interstitials, donation modals, and so much more!&#160; Features include: being unable to dismiss pop-ups with keyboard [&#8230;]]]></summary>
			
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<p>Do you like feeling besieged? Enjoy sensory bombardment? Revel in obnoxious interruptions? Have I got the internet for you! No, it&rsquo;s not the &rsquo;90s golden age of pop-ups. It&rsquo;s today&rsquo;s hell, with the new proliferation of cookie notices, subscription interstitials, donation modals, and so much more!&nbsp;</p>

<p>Features include: being unable to dismiss pop-ups with keyboard commands, breaking screenreaders, and irritating accidental clicks! The best part? It&rsquo;s absolutely FREE! All you have to do is log on to literally any website in 2023, in the privacy of your own home, at the office, or on the go! Additional mobile benefits include: being completely unable to access the underlying website you were trying to visit in the first place!</p>

<p>The spammy website marketing industrial complex insists the recent deluge of pop-ups &mdash;&nbsp;I counted seven in one browsing session on one website &mdash;&nbsp;generate valuable conversions and are totally justified. Their SEO-jacked sites, some of which are, of course, run by companies that sell pop-up products, cite &ldquo;studies&rdquo; with very small sample sizes and questionable methods or note that even if users find pop-ups annoying, they keep using the website. When I asked some marketers to explain themselves, I started feeling like I was talking to an AI assigned to the prompt &ldquo;tell me why pop-ups are good, actually.&rdquo; Meanwhile, UI / UX experts and nearly everyone who has ever actually used a computer <a href="https://www.nngroup.com/articles/overlay-overload/">disagree</a>, <a href="https://www.sciencedirect.com/science/article/abs/pii/S0747563210003286">vehemently</a>. So how did we get here? Why is one of the &ldquo;<a href="https://www.nngroup.com/articles/most-hated-advertising-techniques/">most hated</a>&rdquo; elements of web design, a tactic known to provoke irritation and <a href="https://www.sciencedirect.com/science/article/abs/pii/S074756320500107X">meaningfully disrupt</a> the use of a website, returning with an aggressive vengeance?</p>
<figure class="wp-block-pullquote alignleft"><blockquote><p>Why is one of the “most hated” elements of web design, a tactic known to provoke irritation and meaningfully disrupt the use of a website, returning with an aggressive vengeance?</p></blockquote></figure>
<p>It&rsquo;s not enough to drive users to distraction with pop-up elements in the name of grabbing attention. Some websites also use them in highly manipulative ways. Ever been asked whether you want to &ldquo;save 15 percent&rdquo; or &ldquo;no thanks, I&rsquo;ll pay full price&rdquo;? You&rsquo;ve been targeted by <a href="https://www.deceptive.design/types/confirmshaming">confirmshaming</a>. Under EU and California law, <a href="https://www.vox.com/recode/2019/12/10/18656519/what-are-cookies-website-tracking-gdpr-privacy">websites have to display information about how data is used</a> and obtain user consent; most websites have decided to handle this by serving a pop-up when visitors land. Those originally well-intentioned cookie notices you hate have also started deploying manipulative tactics, such as a prompt to &ldquo;accept&rdquo; without making privacy choices.</p>

<p>I thought it was probably time to talk to an actual expert. Jason Buhle, director of UX Strategy at AnswerLab, says developers may think they&rsquo;re making tradeoffs by annoying some users but generating conversions at the same time. This decision is based on short-term metrics, though, not long-term results and actual user sentiment analysis. &ldquo;You really have to do active research, not just look at analytics,&rdquo; he says, but &ldquo;analytics is close to free,&rdquo; and user studies are not. As a result, &ldquo;what they can&rsquo;t see is how it makes people feel.&rdquo;</p>

<p>The fact that pop-ups can spark <a href="https://www.nngroup.com/articles/overlay-overload/">outbursts of rage</a> highlights the reputational damage they can cause over time. And the more often people see them, the more they start to glaze over them, a phenomenon seen with those <a href="https://www.wired.co.uk/article/gdpr-cookies-eprivacy-regulation-popups">now-ubiquitous cookie notices</a>, which most people scroll around, click to dismiss, accept without reading, or <a href="https://brave.com/privacy-updates/21-blocking-cookie-notices/">simply block</a>. This kinda defeats the point of barging into the browsing experience with information that&rsquo;s supposed to be critical.&nbsp;</p>

<p>But surely, I thought, there must be a use case for pop-ups, an evidence-based explanation. I spoke with Alex Khmelevsky, head of UX at Clay, a San Francisco-based design and branding firm with clients such as Google, UPS, and Coca-Cola. Of pop-ups, he said they&rsquo;re &ldquo;not a good practice overall.&rdquo; And yet, clients often demand them. Designers may try to suggest small changes to make them &ldquo;context-based, information-based,&rdquo; and less intrusive, but the client gets the final say.</p>

<p>I called an old colleague at the Center for American Progress to ask why opening <a href="https://www.americanprogress.org/">their website</a> doesn&rsquo;t trigger the usual nonprofit tidal wave of subscribe, donate, and take action pop-ups. As vice president of digital strategy, Jamie Perez was closely involved in every step of the site&rsquo;s recent redesign and ongoing development. &ldquo;I trust users are doing what they want to do,&rdquo; he said, noting friction frustrates people trying to grab data or read an article. He wants those users to return &mdash;&nbsp;and tell their friends. He views UX as &ldquo;growing a relationship,&rdquo; providing something of value rather than squeezing the most out of a single session.&nbsp;</p>
<figure class="wp-block-pullquote alignleft"><blockquote><p>“The people who develop [pop-ups] have no idea about design and user experience.”</p></blockquote></figure>
<p>Still, I&rsquo;m starting to feel trapped in a web of frustration and unclosable interstitials: knowing that evidence against pop-ups is substantial, why keep using them? &ldquo;The people who develop [pop-ups] have no idea about design and user experience,&rdquo; commented Khmelevsky, and Buhle echoed the sentiment. &ldquo;Oftentimes, decision-makers look at what&rsquo;s right in front,&rdquo; he said, turning to what others are using for guidance rather than stopping to reconsider. After talking to over a dozen designers and marketers, the best answer I could get was: pop-ups keep happening because other sites keep using them.</p>

<p class="has-end-mark">Ethan Zuckerman, inventor of the pop-up, <a href="https://www.theatlantic.com/technology/archive/2014/08/the-first-pop-up-ad/376053/">apologized in 2014</a> for the monster he unleashed on the internet. But it was too late. Pop-ups continue to proliferate in the same way the internet flattens into a sameness: because everyone does what everyone else is doing under the assumption that it must be working. It turns out that in an era of &ldquo;I do my own research,&rdquo; no one is, in fact, doing that.&nbsp;</p>
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			<author>
				<name>s.e. smith</name>
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			<title type="html"><![CDATA[My war on animation]]></title>
			<link rel="alternate" type="text/html" href="https://www.theverge.com/23191768/animation-accessibility-neurodivergence" />
			<id>https://www.theverge.com/23191768/animation-accessibility-neurodivergence</id>
			<updated>2022-07-13T08:00:00-04:00</updated>
			<published>2022-07-13T08:00:00-04:00</published>
			<category scheme="https://www.theverge.com" term="Creators" /><category scheme="https://www.theverge.com" term="Tech" />
							<summary type="html"><![CDATA[Imagine entering a house with an endless series of doors and corridors. Behind some of those doors are the most delightful things imaginable: feasts straight out of Redwall, unicorns, an endless supply of scenic vistas, and unionized workplaces. Behind other doors, however, are grotesque and terrifying jack-in-the-boxes that pop up the minute you crack the [&#8230;]]]></summary>
			
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<img alt="" data-caption="" data-portal-copyright="Illustration by Alex Castro / The Verge" data-has-syndication-rights="1" src="https://platform.theverge.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/23761865/acastro_illo_226028_0001.jpg?quality=90&#038;strip=all&#038;crop=0,0,100,100" />
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<p>Imagine entering a house with an endless series of doors and corridors. Behind some of those doors are the most delightful things imaginable: feasts straight out of <em>Redwall, </em>unicorns, an endless supply of scenic vistas, and unionized workplaces. Behind other doors, however, are grotesque and terrifying jack-in-the-boxes that pop up the minute you crack the door open, blasting up to fill the entire frame, dangling lasciviously on rusty springs as a creaky, vaguely circus-themed song plays.&nbsp;</p>

<p>That&rsquo;s what navigating the internet is like for me. Every time I click a link, I have to ask myself if it&rsquo;s going to be Bozo the clown or something delightful and captivating that I will be happy to have encountered.&nbsp;</p>

<p>All of us find the internet stimulating, but I find it <em>extremely </em>stimulating, specifically when it comes to animated and moving content &mdash; and not in a good way. Something about the wiring of my brain makes it difficult to process animations or repetitive movements, like the blinker you&rsquo;ve left on for the last five miles, turning them into an accessibility issue: a website with animated content is difficult and sometimes impossible to use because the movement becomes all I can think about.&nbsp;&nbsp;</p>

<p>I never met a digital animation I liked, and their use is only increasing. GIFs, sure, but also cutesy little ornamental doodles you probably don&rsquo;t notice. The weirdly nauseating loop of the Boomerang effect on Instagram. The once-again en vogue<em> </em>giant animated cursors that chase you. Autoplay video, of course, especially when it follows you down the page. Flashing ads, the perennial bane of our collective internet existence. Parallax scrolling for all your sexy data viz and prestige immersive feature needs. Bouncing menus jiggling for your attention. The little &ldquo;loading&rdquo; animation at the edge of a background tab.&nbsp;</p>

<p>We are surrounded by a world of motion and I would like to get off of it.&nbsp;</p>
<figure class="wp-block-pullquote alignleft"><blockquote><p>No medical professional has been able to adequately explain or treat whatever my brain does when it encounters animations</p></blockquote></figure>
<p>No medical professional (neurological, ophthalmological, or otherwise) has been able to adequately explain or treat whatever my brain does when it encounters animations. Yet I am constantly navigating around the desperate desire to avoid them &mdash; ducking out of Zooms when people start running animations on their PowerPoints, using every ad, image, and element blocker known to man and a few besides, militantly opposing even a whiff of animation on any project where I have creative input. At times, it feels like a losing battle, one over the first time someone added an &ldquo;under construction&rdquo; to their GeoCities site in the 1990s.&nbsp;</p>

<p>This is a place that honestly isn&rsquo;t very much fun to be, and it&rsquo;s not because I resent having to approach the internet like a minefield. It&rsquo;s because I know the internet loves animations and uses them in incredibly creative ways that stretch beyond Steve Wilhite&rsquo;s wildest dreams (even if he did pronounce GIF wrong). They&rsquo;ve become an entire syntax of communication; many a fine dunk below a ratioed tweet consists of a single GIF. Animation can also both enrich and simplify the display of data. It&rsquo;s a culture I want to participate in and also one I don&rsquo;t want to put down.&nbsp;&nbsp;</p>

<p>I can block anything ending in .gif, but it usually renders buttons nonoperative. I can load a site without styles, but usually, the result is not very enjoyable to use. I can block ads, but then it deprives the nice websites I like to read (and write for) of revenue. There is, of course, a way to bridge this divide, and bizarrely, one of my allies is Twitter, which struck a decisive blow when it allowed users to freeze autoplay on all moving content, including GIFs. Users who love them can post them; users who don&rsquo;t simply see a still frame. What&rsquo;s good for reducing server load is also good for the case exceptions such as mine.</p>
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<p>Access issues like these are weird, in multiple senses of the word. If someone explains that some animations at certain frame rates or with flashing features can cause seizures, people have a frame of reference. It doesn&rsquo;t always mean they&rsquo;ll respect the risk, but it does mean they understand it. When I say that animations in general across the board are &ldquo;incredibly disruptive,&rdquo; it sounds, bluntly, like nonsense. If you&rsquo;re reading and thinking, <em>This sounds exaggerated and I don&rsquo;t believe it</em>, you are not the first. Like other unusual access needs, sensitivity to animation tends to get dismissed or denied because: <em>Come on, who can&rsquo;t handle one little animated GIF? Are you seriously telling me that auto-refreshing content can make you hurl? I bet you watch TV, what do you have to say about that?</em> (I can do small screens at home; in movie theaters, it is overwhelming.)</p>

<p>It&rsquo;s a feeling familiar to other disabled people with &ldquo;weird&rdquo; access issues. Some people with ADHD, along with some autistics, like to wear headphones nearly everywhere they go, and listen to music to help themselves focus. People with severe chemical sensitivity may not be able to walk into older buildings, stores that stock strongly-scented products or structures with new carpets and paint. Migraineurs may not be able to work in bright environments or use screens. A person with severe anxiety might need a disability placard for their car so they can get in and out of businesses more quickly.&nbsp;</p>
<figure class="wp-block-pullquote alignleft"><blockquote><p>No documentation can cover every possible scenario</p></blockquote></figure>
<p>This isn&rsquo;t just about animated content. The internet and the world at large have a huge accessibility problem and people tend to think that adhering to documented standards (and sometimes using <a href="https://overlayfactsheet.com/">dodgy third-party tools</a>) will address it, when as my case clearly illustrates, no documentation can cover every possible scenario. Access requires a conversation with the disability community. No place can be all things to all people and any series of design choices will result in inaccessibility for some number of users, with people giving contradictory feedback in the discovery phase. Unfortunately, there&rsquo;s no checklist to solve this, and accessibility is something that constantly evolves and shifts. It also provides cool opportunities, though, a chance to design something really unique and interesting that stands out and shows that access is beautiful, not just practical. As dance company <a href="https://kineticlight.org/">Kinetic Light</a> illustrates with stunning performances actively integrating access tools such as ramps and wheelchairs along with audio description that is part of the work, access can be art.&nbsp;</p>

<p>When it comes to web access, there are two approaches, starting with functional tools that we can use to configure the internet to meet our needs while other users can ah &ldquo;enjoy&rdquo; the horrors you visit upon them. Another is to think about user experience more creatively and comprehensively. I&rsquo;m not the only one who struggles with parallax scrolling, for example, and not just because it moves in troubling ways. It can also be tough for screen readers to work with, particularly when it&rsquo;s being used for something like a graphics-heavy display of data. Other people just find it annoying, which seems fair. Could there be an alternative plain or clean version of the same data, presented with the same care? Could you build rapport and trust with disabled users to encourage them to collaborate with you? Rather than viewing access as an imposition that narrows your options, think of it as an invitation to think outside the box.</p>

<p>Developers make decisions about how inaccessibility might manifest and how it might be mitigated. You could warn me that there&rsquo;s an access issue ahead, but what if there&rsquo;s something cool in there? You could simply mitigate the issue by giving me more control over it, allowing me to decide if, how, and when I want to interact with it. As a grownup, I can and want to make my own decisions.</p>

<p class="has-end-mark">Truthfully that&rsquo;s all I, and many other disabled web users, desire: To be on the inside looking out, for once.&nbsp;</p>
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