When Shelby Lynch decided to hop on a TikTok trend and post a video of herself with her boyfriend in September of 2020, she had no idea what the next two years would bring.
For Lynch, a 25-year-old with spinal muscular atrophy type 2, a genetic disorder that affects the nerve cells controlling voluntary muscles, it was her first big viral TikTok moment.
“He’s MINE! Teeheehee 💖,” she captioned the video, which includes a montage of photos of the couple, overlapping videos and herself lip synching.
Lynch’s gene mutation affects her nerve cells, which means she uses an electric wheelchair and a ventilator. She requires 24/7 care. Her boyfriend, who she’s been dating since 2020, also uses an electric wheelchair.
“When I got home, my notifications were pinging every second,” Lynch says over Zoom from her home in the United Kingdom. “I was getting thousands of followers every few seconds.”
The video now has 4.9 million views and 87,300 comments—numbers that continue to climb even today.
Now, Lynch has nearly 442,000 TikTok followers. Her videos, which discuss dating, sex, and ableism, and debunk misconceptions about her disability, have garnered more than 15 million likes, and her advocacy has opened up the door for modeling gigs.
And Lynch is not alone. A burgeoning group of creators with disabilities have found their niche on TikTok and are building community.
These content creators make videos about their lives that are fed through TikTok’s algorithms before landing on your “For You Page.” And people stick around to watch: Videos using the hashtag #disabled have 3.9 billion views, #disabilitytiktok has over 2.1 billion, and #disabilitytiktoker has 7.2 million. In comparison, simple tags like #foodlovers has 2.4 billion views and #fitnesschallenge has 3.5 billion.
TikTok even acknowledged the trend in an internal analysis from July 18, 2022, noting that “this [#disabled] trend has been extremely popular in United States for the last 121 days in a row.”
Tiffany Yu, 34, is another viral TikTok creator who uses her platform to discuss her disability. When she was 9, she was in a car accident that killed her father and caused a brachial plexus injury that left her with the use of only one hand. She was eventually diagnosed with PTSD more than 20 years after the accident.
“TikTok changed my life,” says Yu, now the founder and CEO of Diversability, a company seeking to “rebrand disability through community.”
“I actually felt very uncomfortable with the visible manifestation of my hand prior to joining TikTok,” she says. Making all those videos helped to change that.
Debunking misconceptions, one video at a time.
One of Lynch’s goals in demystifying disability is to show that “we are literally the same as everybody else,” she says. “I think the more you talk about [being the same]—the more disabled people talk about it—the more it will spread.”
Yu reminds herself that questions such as “how do you tie your shoelaces?” and “can your hand be fixed?” and “does it hurt?” are new to others, even though she encounters them daily. Plus, she spent so many years not talking about her condition. So now, she wants to share her experience.
“I did a whole series on how I do my hair because I saw someone [with a similar disability] do a video on how they did they did their hair, and it looked nothing like how I do my hair,” she explains.
For Caitlyn Cohen, a 21-year-old University of Albany grad who rarely talked about her severe stutter with friends and family, the decision to post a 42-second video about it was unplanned. She was bored, stuck at home during the pandemic, and already had her makeup done.
“Hey, I’m Caitlin and I have a severe stutter,” she starts, clasping her hands tightly in front of herself. “And fun fact, Marilyn Monroe actually had a severe stutter.”
Now, Cohen has more than 1 million followers. She re-posts the questions she receives in neon-pink bubble letters at the top of her screen, smiling while recording her answers. Yes, certain words make her stutter. Yes, she was born with the stutter. No, she doesn’t stutter when she sings.
Yu shows followers how she paints her nails, applies mascara, and puts her hair in a ponytail (spoiler: it involves her feet). She is also known for her Anti-Ableism Series TikToks, which address different aspects of discrimination people with disabilities face in everyday life.
Along the way, Yu has discovered that in addition to other people with brachial plexus injuries, she has at least two niche audiences: physical therapists trying to get new tips for clients, and stroke survivors: “That’s who I want to create the videos for.”
‘There is so much more to me than my stutter.’
While they spend hours answering questions and debunking myths, many Disability TikTokers also want to show their viewers that there’s so much more to them than their disability.
Cohen does makeup and skincare tutorials. Yu talks about her dating life and living in San Francisco (although she recently moved to Maryland). Lynch dreams of starting her own fashion company run solely by people with disabilities.
“Everything on social media is so glamorized. I’m just a regular girl trying to navigate life with a stutter,” Cohen writes in an email to Women’s Health. (Her stutter, exacerbated by nerves, can make it hard for her to do interviews.)
Their content is about the ability to exist as complete and complex human beings. “There is so much more to me than my stutter,” Cohen says.
Being able to tell their story on a social platform can enable people who have been isolated and objectified in their disability, says Meryl Alper, an associate professor of communication studies at Northeastern University. The act of posting a TikTok helps them reclaim their narrative and find a community.
While these videos can eventually shape broader attitudes—specifically for viewers consuming lots of this disability content—Elizabeth Ellcessor, an associate professor of media studies at the University of Virginia, thinks the biggest effects happen within disabled communities. “This normalization can be really powerful for young disabled people and can really change the trajectory of their lives in terms of self-advocacy,” she says.
And sometimes, taking back that narrative means developing a new relationship with yourself. While Yu had previously talked to audiences about her disability generally, she didn’t go into detail about her specific brachial plexus injury until she got on TikTok.
The platform’s visual nature helped Yu gradually accept and appreciate her body. Through constant and visible confrontation, she realized that there was nothing shameful about the way her hand looked. It was just different. And that was okay.
“I reached a point where I was like, this is the one body I have, the body I’ve been gifted by the universe. It looks how it looks. My hand looks different, but it’s my hand,” Yu writes in an email to Women’s Health.
Lynch had a slightly different experience: TikTok reminds her of others’ intolerance. But the platform has also taught her about her own resiliency. The magic sauce? Support from other creators.
“It’s just unity. We go through so much every day,” Lynch says.
The good and bad of going viral.
With roughly half of Americans between 18 and 29 using TikTok, according to Pew Research Center, the platform seeks to provide an education, of sorts. Alper says the content these creators make has the potential to fill gaps in conversations that “might not be happening in the classroom.” In 2020, TikTok launched a $50 million #LearnOnTikTok campaign seeking to integrate “creative learning” onto the platform. The company recruited 800 public figures, media publishers, and experts to create content. Yu was one of them.
When the Americans With Disabilities Act was passed in 1990, it expanded access to all areas of public life for people with disabilities—including schools, where classrooms had to become accessible to children of all abilities.
Alper says that post-ADA, students with disabilities, and the topic of disability itself, were better integrated into classrooms. However, “just because kids are included, doesn’t mean that they’re accepted.” And the conversations surrounding disability don’t always tackle disability “in all of its complexity,” she adds.
Today, 56 percent of people viewing disabled TikToker content are between 18 and 24. Ninety-six percent of that audience is under 35, according to the company’s statistics.
“I think it is really changing the perception [of people with disabilities], especially with younger people,” because the videos can highlight the disabled TikTokers’ strengths rather than weaknesses, says Betsy Furler, a speech pathologist and founder of For All Abilities, a software company specializing in helping businesses integrate ADA-compliant technology. She thinks TikTok also helps highlight strengths rather than differences.
A 2021 study points out that some of the “best ideas for new and innovative assistive technologies” are shared on TikTok by the disabled community, Alper adds. The list includes things like incorporating wheelchair parts into dance, methods for getting in and out of the pool without using one’s legs, employing household objects to perform daily tasks like holding a fork, and more.
Plus, since TikToks can make their way onto Instagram, Twitter, YouTube, and other platforms, Alper says it can be a great tool for amplifying disability advocacy messages.
But it also has its downsides.
“How viral you are is correlated with its impact on your mental health,” explains Yu. Yes, social media can build confidence and community, but trolls and negative comments come with the territory. Lynch calls that challenge—balancing mental health with content creation—a “vicious cycle.”
It can be difficult to find a balance between educating non-disabled people and building community for disabled people, she says. “Honestly, I got a lot of negative comments, which might make it not a safe space.” So, she takes time off the platform when she’s feeling overwhelmed.
Cohen says she’s been bullied her whole life, so she’s learned to ignore the vitriol. But her stutter becomes worse when she’s anxious. When the trolling gets bad, she takes time with friends, watches her favorite shows, settles in with a good book. She also talks to a therapist once a month.
‘Being yourself is what is going to help you win in this world.’
As a first-generation American—the daughter of a Taiwanese immigrant and a Vietnam War refugee—Yu never saw her experience represented in the media. “It probably wasn’t until I was in my 30s when I felt the most myself,” she says. And TikTok played a role. “When I was growing up, I had internalized a lot of messaging that I should feel shame about who I am in any of my identities.”
Yu wants to send the message that no one has to hide: “Being yourself is what is going to help you win in this world.”
Alper keeps a close eye on how young people with disabilities are affected by consuming content from peers who look and sound and think they way they do. She has a forthcoming ethnographic book, Kids Across the Spectrums: Growing Up Autistic in the Digital Age, that observes how young autistic people’s use of new media plays a role in how they understand their disability.
“There’s something potentially very powerful—psychologically, emotionally, socially—about seeing oneself represented,” Alper says.
So, despite the negative comments, bad days, frustrating algorithms, and stress, these creators keep posting videos. The positive messages and the knowledge that, in a small way, they might make someone like them feel seen, is buoying.
Cohen never had anyone like herself to look up to, so she likes knowing she can help other kids who feel alone.
“I realized that if I keep posting and stuff, not only can I help myself become more confident,” she says. “But I can also help other people.”
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