Pictured is a Twitter chat announcement from 2019. ID: Graphic with a white background with text: “#DisabilityCivics Twitter Chat, Civic Participation & the Disability Community, May 22, 2019, 4 pm Pacific/ 5 pm Mountain/ 6 pm Central/ 7 pm Eastern, Co-hosts: @LurieInstitute @IntersectedCrip @DisVisibility” On the left is a black Twitter bird and on the right is a computer screen with two caption bubbles coming out."
On October 28, Twitter users woke up to a new reality: Elon Musk had taken over the platform and almost immediately begun making changes. For people with disabilities who’d found an emotional support system on Twitter, anxiety over Musk’s upheaval was especially sharp. Twitter had been one of the most user-friendly social media platforms out there—with a world-class team that made sure it was usable by people who had a variety of different needs. Plus, it’d been a megaphone and a lifeline to the outside world, for those who’d been especially vulnerable during the pandemic and mostly stayed indoors. Everything was now up in the air.
One such user is Stephanie Tait, an author, speaker, and disability advocate who suffers from multiple chronic health issues related to Lyme disease. “There are a lot of people joking about how Twitter going away would be for the best because everyone would go outside and touch grass,” she says. “What’s difficult for our community is that we’re here trying to get people to understand that for some of us, that’s not an option.”
Many users said they’d be leaving. The hashtag #TwitterMigration started trending. But for some people the stakes were higher than for others. For Tait and other users with disabilities, there’s much more at stake on Twitter than a timeline filled with jokes, memes, and news updates. Tait has used Twitter for years to build up her audience as an author and raise awareness about disabilities, and has garnered nearly 37,000 followers in the process.
For Karli Drew, a writer, creator, and activist with nearly 20,000 followers who was born with a progressive neuromuscular disorder called spinal muscular atrophy, Twitter has been the source of a ton of career opportunities. She says that one change Musk already tried to institute—charging $8 a month for verification—was a threat to the livelihood of some users with disabilities.
“There are disabled public figures on Twitter who have already been verified and whose credibility and jobs have come out of that verification,” she says. “They wouldn’t be able to maintain that $8 fee.”
If Musk’s ownership leads to a mass exodus from Twitter, or a potential bankruptcy, which he warned about on Thursday, it could mean a huge loss: of essential social circles, of knowledge sources, and of financial resources for many. And if misinformation takes over and the disabled community doesn’t stay on the platform, those things are lost even if Twitter continues to thrive.
What Twitter means to users with disabilities
When Abi Oyewole began regularly using Twitter in 2019, she was looking for answers. She says she sought out “disability Twitter” while dealing with a number of medical issues, including fibromyalgia and chronic fatigue syndrome. Now, she has over 25,000 followers.
“I was looking for community and finding people like me, who were struggling with their health, really helped me come to terms with my own health issues,” she says. “At the time, it pretty much saved my life because I got some pretty important information. It was quite crucial to have that support and to know others that were going through the same thing.”
Touted as the “world’s largest focus group,” Twitter’s follower structure—you can follow someone without them following you back and vice versa—gives users the ability to both broadcast and access information from all corners of the platform. “Someone who is talking about their experience of living with a disability could potentially be reaching a large and broad audience thanks to the public and asymmetric nature of Twitter,” says Ethan Zuckerman, an associate professor of public policy, communication, and information at the University of Massachusetts Amherst.
That has allowed people with disabilities and other marginalized groups that experience discrimination and exclusion to build community in a way that isn’t possible on other platforms, Tait says. “When you have certain kinds of disabilities, especially when you have diagnoses that are not as common, you need sheer numbers to even have the odds of potentially finding somebody with the same condition as you,” she says. “Twitter’s made it a lot easier to find people that you have no connection to at all and say, ‘Hey, we have similar symptoms or similar diagnoses, or you’ve reached a diagnosis and I haven’t, or you have research that you’ve already done and that research is going to be really important to me now.'”
The megaphone effect of Twitter has also made it instrumental for organizing mutual aid, fundraising, and other forms of community care efforts for people with disabilities, Tait says. “If you’re just asking the same people in your immediate circle for help again and again, it only goes so far.” she says. “If you take away Twitter, it’s no exaggeration to say that there will be medical procedures that don’t happen.”
Economically, too, it’s impacting people. Those who struggle to hold traditional jobs have built their entire business models around Twitter’s reach and amplification.
For Oyewole, Twitter has played an essential role in growing the online business that enables her to support herself. “I can’t work most jobs because I’m disabled and by being on Twitter, I’m able to promote my business quite easily,” she says. “Other platforms require you to pay so your work can be seen. But with Twitter, it can gain a lot of reach through support from your followers.”
The factors that made Twitter special
Unique in its ability to amplify marginalized voices, Twitter has become a vital tool for building and sustaining community among vulnerable populations, says Zuckerman.
“For years, people have been finding community on social networks when they have difficulty finding community in the physical world,” he says. “That could be people who are in small minorities in the communities where they’re living or it could be people for whom it’s difficult to access the physical world.”
Just over a week after taking control of Twitter, Musk gutted the company’s accessibility team. That means the work those employees were doing to make the platform accessible for as many people as possible has stopped. For example: adding image descriptions to tweets for people who are visually impaired and updating Twitter’s sounds to help make them pleasing to people with sensory sensitivities.
That’s not surprising to many experts, who’ve noted that Musk’s “free speech” goals seem in conflict with creating a space that’s welcoming to those who are easy targets for trolls and other bad actors.
“Musk’s vaunted commitment to free speech is meaningless if Twitter becomes a place that lets harassers and trolls operate with impunity,” Zuckerman says. “Allowing people to be harassed into silence is as least an effective form of censorship as banning users.”
Musk also cut employees across Twitter’s human rights, product trust and safety, and ethical AI divisions, and platform safety seems to already be unraveling. On Wednesday, Musk took to Twitter spaces to explain how the platform wouldn’t devolve into a free-for-all for imposters and trolls. The next day, the site was rife with fake “verified” accounts, and key privacy and security executives quit.
The cost of leaving Twitter
Some users are quickly leaving the platform. In the days after Musk completed his $44 billion acquisition of Twitter, estimates from research firm Bot Sentinel suggested that Twitter may have lost more than a million users. Bot Sentinel found that around 877,000 accounts were deactivated and a further 497,000 were suspended between October 27 and November 1. That’s more than double the usual number of account losses, according to MIT Technology Review.
Since then, downloads of Twitter alternate Mastodon have skyrocketed, with data analytics firm data.ai reporting that Mastodon downloads in the U.S. increased by nearly 5000% during the 10 day period of October 27 to November 5.
But simply switching platforms is not an option for many users with disabilities. “A lot of people are finding support in communities on Twitter,” Zuckerman says. “Having that space go away or having it migrate to another platform where people have to figure out how to rebuild all the tools and infrastructure that they need to use that platform is a huge cost.”
For Drew, losing Twitter would mean losing the social platform that’s most accessible to her. Drew’s spinal muscular atrophy causes muscle weakness. “It takes a while for me to type and I can’t take photos myself, so Instagram and TikTok and other platforms are more difficult for me,” she says. “With Twitter, I can easily say what I want to say without asking anyone for help or using up all my energy and time.”
With the COVID-19 pandemic exacerbating health and isolation issues for many people with disabilities, Drew says that losing Twitter as a gateway to the world would be dire. “Personally, my following has dropped significantly and I’m already seeing it happening,” she says. “A lot of disabled people are feeling lost because we’re losing that sense of community. We’re a few years into the pandemic and a lot of us are still quarantining, so that’s kind of all we have left.”
The problem with Twitter alternatives like Mastodon and Reddit where users organize themselves into different communities is they are siloed by topic and interest. That could make it hard for the same community to reunite on a new platform, and it would mean that if—for example—people with a particular disability coalesced around a particular online space, their posts wouldn’t have the same broad, universal reach.
“Even if you could somehow magically get all of disability Twitter to move to the same alternative social media platform, we would be siloed in a way where the rest of the world wouldn’t have to see us anymore,” Tait says. “If you push us to a site where we can find each other, but other people don’t have to see us anymore, it’s very dangerous for us because it becomes so much easier to marginalize us and to leave us behind.”
One of Drew’s biggest concerns is that marginalized people will be left to fend for themselves on Twitter if too many people decide to leave the platform. “I don’t blame marginalized people who are leaving because the website could become an unsafe place without moderation and verification based on actual merits,” she says. “But as far as allies go, if we don’t have them sticking around, we’ll have nothing.”
