PHILADELPHIA — Fear of COVID-19 never ended for Heather Kerstetter.
She rarely leaves her home near Temple University for anything other than doctors’ appointments. Spinal muscular atrophy puts the 33-year-old at grave risk from respiratory infections, and even a cold can send her in the hospital with pneumonia for weeks. COVID could kill her.
Yet she maintains a thriving social life alongside a deep network of people facing similar circumstances.
She is part of a sprawling, diverse online community known as #DisabilityTwitter that provides people with disabilities a forum for dialogue, advice, and advocacy. The virtual network includes people with physical limitations, mental health conditions, and chronic illnesses.
Now many fear that a social media community that became even more robust during the pandemic could be on the brink of collapse. Since billionaire businessman Elon Musk’s purchase of Twitter was finalized in October and he began mass layoffs, analysts have warned of Twitter’s potential demise. Among those most personally affected would be people such as Kerstetter, for whom Twitter is not just a way to keep up on news or share cute pet pictures, but also a lifeline.
“Twitter has become the social place for me, the only place I can be around people who get it,” Kerstetter said. “It collapsing would mean I have nobody left.”
Twitter users with disabilities are concerned that an exodus of advertisers might put the company out of business. Even if Twitter remains intact, they worry that Musk’s radical changes will transform it into a nastier, more hateful environment — and one that is less accessible.
Among those laid off were members of Twitter’s accessibility team, which had previously earned praise for creating alt text for images, and being conscious of color schemes that might not be visible to people with certain kinds of color blindness.
Musk has been vocal about his enthusiasm for making Twitter a place where speech is largely unrestrained, and revised policies about who can post and what they can say. Twitter recently stopped enforcing a policy barring misinformation about COVID-19.
“Which is terrifying,” said Imani Barbarin, a Philadelphia area activist for people with disabilities who has accumulated almost 174,000 followers on Twitter.
Musk’s philosophy is “freedom of speech doesn’t mean freedom of reach.” The company is no longer blocking most hateful or offensive tweets, though there have already been exceptions. It is not amplifying those voices, though, saying it is working to make hate speech less visible or able to earn the company money, according to the Washington Post.
The New York Times reported Dec. 2, though, that recent reviews of Twitter found that racist, anti-Semitic, and homophobic tweets have increased significantly since Musk bought Twitter.
Twitter did not respond to a request for comment.
Advocating for disability rights
People with disabilities find Twitter a uniquely valuable tool for some of the same reasons many of its users cite: It’s fast, allows easy access to a large audience, and delivers information in bite-size, 280-character nuggets.
The platform gained popularity as a virtual gathering space for people with disabilities in 2016, Barbarin said, when an advocacy movement with the hashtag #CripTheVote pushed for accessibility and disabled rights to be part of the conversation among politicians and voters.
In January, Barbarin created the Twitter hashtag #MyDisabledLifeIsWorthy when Rochelle Walensky, the director of the Centers for Disease Control and Prevention, suggested in a Good Morning America appearance that the pandemic was waning because the majority of deaths were among people with at least four underlying health conditions.
The social media backlash led Walensky to apologize.
Twitter has been an essential tool for advocating for disability rights, said Matthew Cortland, a senior fellow who handles the disability portfolio for Data for Progress, a national polling firm and think tank.
Cortland has Crohn’s disease and became more active on Twitter as a way to advocate for better health care. During the pandemic, Cortland often became frustrated after posting impassioned tweets, urging people to take COVID protocol more seriously and for the government to do more to help vulnerable patients, that seemed to go unnoticed.
But, Cortland said, “the course of this pandemic would have been even worse if we did not have a platform like Twitter.”
Cortland cited a change in the CDC’s mask recommendations that allowed people to use their own N95 masks, rather than switching to less protective hospital-issued masks. The Food and Drug Administration also allowed pharmacists to prescribe Paxlovid for COVID treatment partly in response to social media activism, Cortland said.
Connecting with each other
On Twitter, people who often feel isolated or unseen can own their narratives. People with difficulties speaking or have nonverbal autism gain a voice they don’t have in other contexts.
“It’s incredibly important that we are the ones that are directors of our own lives, and we are seen as the authorities in our own lives,” said Barbarin, 32, who has cerebral palsy and uses crutches.
Noa Erlitzki, a University of Pennsylvania doctoral and medical school student, has used Twitter to help her manage Crohn’s disease, and even found a therapist who specializes in chronic illness through the platform. Her illness can be difficult to discuss with friends, she said. But on Twitter she’s found people who aren’t squeamish.
“From the get-go it’s a topic that can be sensitive,” said Erlitzki, 30. “Certain GI issues, as you can imagine, can be pretty embarrassing, or can be embarrassing to go through or are very painful, physical or mentally.”
Now, Erlitzki, Barbarin and other #DisabilityTwitter users are contemplating how they will communicate and organize if the platform dies or becomes unwelcoming.
Instagram and TikTok are more visually oriented, so creating posts is more time consuming. Other social media outlets such as Mastodon don’t have the same track record of spreading messages widely.
“I feel like I shouldn’t be as emotionally attached to a social media platform as I am,” Barbarin said. “It really did change my life for the better.”
