In November 2020, 24-year-old Britt (@myelasticheart) shared a TikTok of herself talking — in a silly, light-hearted way, she says — about Ehlers-Danlos syndrome (EDS). She expected a few of her friends to see it, at most, but that’s not exactly what happened. “It reached a lot of people,” Britt tells Refinery29. Some of these people said that they’d never met anyone else with EDS; others didn’t know what it was. “Seeing the excitement that other people had from being able to connect with somebody else who had a disability, I was like, Maybe I’ll make more videos and hopefully find a way to connect with people and educate folks about this.”
Britt shares several videos a week, often about disability history and current issues, for an audience of over 55,000 followers. Right now, Britt and other activists on TikTok are using the app to raise awareness about the Supplemental Security Income Restoration Act, which would — among other things — ensure that people with disabilities don’t lose their SSI benefits if they choose to get married or work part-time. But in many of her other videos, Britt discusses her own experiences with EDS and complex regional pain syndrome (CRPS), answers questions, and celebrates babes with mobility aids. She does a lot of celebrating, actually.
“We grow up learning that ‘disabled’ is a bad thing. It’s something you don’t want to be, that to call yourself that is somehow defeatist, that you should be trying to overcome it rather than embracing it,” Britt says. “And so I think it’s really, really cool to have people sharing the things that they love about being disabled or celebrating their bodies or talking about the unique perspectives that it gives them on the world.”
Disabled TikTokkers have found a platform on the app since it first blew up in the U.S. early 2020. Many people attribute TikTok’s seemingly overnight success to the early lockdowns of the COVID-19 pandemic — which was also why 16-year-old Isabel (@powerfullyisa) turned to social media. As a public speaker, disability justice activist, and community organizer, she knew she had to find a way to continue fighting for both policy change and public awareness.
“When everything got shut down and physical organizing was no longer a thing, there was really a lack of a way people could get information about disability rights, because we couldn’t physically organize,” Isabel tells Refinery29. At first, she mostly shared her work on Instagram. But then she found TikTok, which appealed to her even more as someone with a background in public speaking. “The short form video is a really unique format, because it really humanizes the person behind the screen.”
In bite-size videos, Isabel breaks down the myriad ways ableism is embedded in our culture. Some of her most viral TikToks poke fun at how able-bodied people treat their disabled peers, and several specifically address COVID-19’s impact on the disabled community. In May, Isabel drew attention to a report that revealed 25 states had laws in place that could prevent disabled people from receiving ventilators at the height of the pandemic. “In 25 states, it is legal to deny a disabled person life-saving treatment due to ‘low quality of life,’” she says in one video, citing an analysis from the Center for Public Integrity.
Disability history — even recent events, like the 1990 passage of the Americans with Disabilities Act — is rarely taught in American schools; some people might not even know that July is Disability Pride Month. Activists like Britt and Isabel hope to fill some of these gaps and teach their followers about the past and present fights for disability rights. “I think that because we have such a lack of education, when people are older and they don’t know much about disability at all, if they’re open to being educated, they can be,” Isabel says. “And I think that’s a really great way that disabled people are getting their voices heard.”
Online, people with disabilities can tell their own stories — which is crucial, since we rarely see these stories reflected elsewhere. According to a 2020 study conducted by the Geena Davis Institute on Gender in Media and the USC Viterbi School of Engineering, there are more disabled characters in movies than ever before, but a lot of that representation is still negative. Out of last year’s family-friendly films featuring disabled characters, 22.9% depicted the harmful trope of a character “overcoming” their disability, and 20% showed a disabled character dying. Inspiration porn (that is, stories including characters who are solely defined by their purportedly heartbreaking and “inspirational” disabilities) is still a pop cultural mainstay. Even the very few disabled characters we do see on-screen are more often than not played by able-bodied actors.
As Britt puts it, TikTok is “definitely one of the easiest ways for people to see what it actually looks like to live as somebody with a disability.” And for 21-year-old Becca (@tourettesbian), the opportunity to show people who she really is, and what her life is really like, is one of the best parts about TikTok.
Becca used the app and even posted a few videos before she was diagnosed with Tourette’s syndrome in October 2020. As she went through the “process” of coming to terms with her tics, she started recording and sharing TikToks, and her follower count began to creep up. To date, she’s surpassed 600,000 followers, and some of her Q&A videos have garnered tens of thousands of views.
“I think sometimes, people with Tourette’s can be seen as aggressive. And their language, because it’s inappropriate, it can be quite scary,” Becca says. “But I like to share the videos where people see, yeah, I have Tourette’s, but personally, I can laugh at it. I can still have fun, I can still just be little me.”
Like Britt and Isabel, Becca uses her platform to share information and dispel myths about physical and vocal tics and Tourette’s, usually when her followers have questions about her own experiences. But many of her TikToks have a humorous bent. In one ongoing series, Becca “lets her tics decide” the lyrics of popular songs; in others, she turns her tics into inspirational quotes. Her followers often ask if it’s okay to laugh, and she always specifies that there’s no one-size-fits-all answer.
“It’s personal preference for each person if they want people to laugh, but for me, if I’m laughing, it’s absolutely fine to laugh with me,” Becca tells Refinery29. “As long as you’re not laughing at me and [are] being respectful, then it’s absolutely fine to laugh. I wouldn’t share it if I didn’t want people to.”
Becca has never met anyone with Tourette’s in person, but through TikTok, she’s been able to connect with countless people who can relate to her anecdotes and videos. She’s made friends, gone Live with other TikTokkers, and even joined a group chat. “I had quite a few people DM me and say, ‘Look, I’ve got Tourette’s, and you’ve really, really helped me feel okay with my condition,’” Becca says. “That was when it dawned on me, like, Oh my God, I’m actually helping people.”
By the end of this year’s Disability Pride Month, the #DisabilityPride hashtag will be on track to surpass 300 million views, thanks to videos ranging from funny to informative to personal. But even though TikTok fosters a generally positive community, it isn’t without faults — there have been ableist trends, and activists say that the app itself isn’t as accessible as it could be. People with Tourette’s, like Becca, have had their videos removed for violating community guidelines. “They kind of haven’t come up with a system yet that works fairly for us, because we can’t help what we say,” she explains.
And although the option to add automated captions to videos was a big win for disabled creators, the voice recognition software still leaves people behind. “One of my friends has cerebral palsy and the app never recognizes her voice, because the way she speaks sounds different from the average default able-bodied voice,” Britt says. Ironically, in this instance, the same people trying to raise awareness about disability rights are facing a specific obstacle preventing them from creating accessible content.
But disability activism on TikTok isn’t groundbreaking because of the app — even Britt, Becca, and Isabel themselves are active on other social media platforms. But what’s so special about TikTok is that, finally, disabled people have the mic. “So many times, organizations about disability rights are run by non-disabled people,” Isabel says. “I think the fact that disabled people themselves are talking for themselves on TikTok, really, is going to be revolutionary.”
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