NEWS

Disabled TikTok Creators Find Community on the App

Three TikTok creators with disabilities sharing videos about disability pride month.

Verywell

Key Takeaways

  • TikTok has become a popular social media site for disabled creators, where they can share their experiences and create a community online. 
  • Sometimes feeling excluded from mainstream media and conversation, TikTok allows disabled people to celebrate their identities and educate others in an authentic way. 
  • Barriers like inaccessibility, bullying, and content suppression can make community-building on TikTok challenging.

When Courtney R. Cole (@enleyentening) posted her first TikTok video back in May, she decided to keep her expectations low. But instead of receiving an influx of hate comments and low viewer numbers like she’d feared, Cole’s post went viral. 

In the video, which now has over 2.2 million views, Cole dispels misconceptions about being legally blind and asks TikTok users to cover their left eye and make a hand telescope around their right to replicate what she can see.

“Even though I have some vision, I still have a serious disability that has a significant impact on my life and is an integral part of my identity,” Cole tells Verywell. “I wanted to educate people about the spectrum of blindness because, honestly, I got tired of people not believing me when it comes to my disability identity. So, I posted my short video.”

A Space for Education and Community

Cole and thousands of other disabled people use TikTok to educate people about disability and to support others in their community.

Lack of representation in mainstream media and inaccessibility issues can often make disabled people feel unseen, so being able to share resources and experiences on TikTok—especially during July which is Disability Pride month—has been a really valuable experience, Cole says.

Mya (@immarollwithit) is another disabled creator using her platform on TikTok to amplify disability issues and foster community on the app. She started making videos in hopes of fundraising for a service dog but quickly discovered that most people online had a lot of questions and misconceptions about disability that she wanted to answer, too. 

“I started a series early on called ‘How to Interact With Disabled People’ which was inspired by many of the things I learned after becoming disabled," Mya tells Verywell. "It’s frustrating just how much I didn’t know about disabled experiences and the many, many struggles we all face. It seemed like there were limited ways for people to gain this information if you weren’t disabled or close to someone who is."

In addition to posting fun videos of herself dancing and showing what daily life is like as a wheelchair user, Mya also boosts other disabled creators’ content by asking people to “duet,” or add on to her videos so they can share their own experiences with her followers. 

One Account Bringing People Together

In addition to their videos on their personal accounts, both Cole and Mya have also been featured on the TikTok account of the disability advocacy organization Diversability (@diversability).

Founded by organizer Tiffany Yu, Diversability works to create a community of disabled people and abled allies to share resources, celebrate diverse identities, and further disability rights activism. In addition to a 4,000-member Facebook group, social media manager Jessica Lopez runs the group’s TikTok, where she posts educational content about her own experiences with disability and, with permission, features other disabled creators’ content. 

“Disabled people’s stories and messages have always been around, but now society has reached a place where people are now starting to listen,” Lopez tells Verywell. “Diversability wants to amplify people with disabilities from all walks of life, and social media makes that possible.”

Lopez, who has a hearing impairment and a chronic illness, and was born without hands or feet (Hanhart Syndrome), says she didn’t really lean into her disability identity until recently. Joining Diversability’s Facebook group last year helped her learn more about disability rights and ableism, and now her goal is to expand the organization’s reach online so that more people with disabilities can feel welcomed into this community.

TikTok especially, she says, is a useful tool to reach both people with and without disabilities. 

“We spend much of our lives fitting ourselves into a mold to make others feel comfortable, but on TikTok, that’s not as necessary," Lopez says. "We can share authentic clips of our lives and what we go through on a daily basis. Not only can this help educate people on what it’s like to live with disabilities, but it also brings disabled people closer to one another.”

Cole says she appreciates the community she’s been able to access through Diversability’s account.

“Having a community of disabled people is extremely important for my continued growth and feeling seen," she says. "Diversability is promoting this in a great way and it’s awesome to see. If the world chooses to discard and devalue people with disabilities, we will speak up and make them recognize our amazing, diverse community.”

TikTok Still Needs to Make Improvements

Cole says she's been surprised and excited at the number of disabled creators in her feed this Disability Pride month. And, she adds, posting online gives her the freedom to control the narrative of what she does and doesn’t want to share when educating and building an online community of followers. 

But even though TikTok has become a great space for people with disabilities to share their stories, collaborate with and meet one another, and dismantle stereotypes, sometimes creators feel like the platform is working against them. 

Mya, Cole, and Lopez all agree that TikTok still struggles with accessibility. Right now, TikTok actively features tools like text-to-speech, non-animated thumbnail options, auto-captions, and photo-sensitive warnings that are meant to make the app more accessible. But, in many instances, it’s not enough. 

Cole always writes video descriptions in the captions of her videos so that people who are blind know what she looks like, not just what she sounds like. The information can sometimes impact her video’s success.

“Writing video descriptions means I can’t put as many hashtags on my video which may be impacting the reach of my videos, so that’s kind of a struggle,” Cole says. 

TikTok also doesn’t provide captions for sounds or songs on the app, so because Lopez is hard of hearing, it can be challenging for her to navigate choosing sounds when she’s making a video. And, she finds that auto-generated captions are frequently inaccurate. 

Managing Hate and Negative Comments

While Cole and Lopez say most reactions to their content are positive, Mya’s large platform seems to open her up to more scrutiny.

TikTok has recently made it easier to delete and report comments that bully or go against community guidelines, but Mya says she still receives floods of threatening hate comments when she posts videos. She’s also been accused of faking her disability by commenters because she uses a wheelchair but isn’t paralyzed.

“So many people are blatantly ableist and will then argue with creators for advocating for themselves and drawing boundaries,” Mya says. “One of the most common comments myself and other wheelchair users get is ‘stand up’ or ‘just walk, it’s not that hard.’ And we’re expected to take this as comedy and are called ‘too sensitive’ for calling it the problem that it is.”

Mya says she does her best to reply to these comments, sometimes being a bit snide or sassy to regain some power in the situation. Still, she finds it shocking just how comfortable people can be making ableist or threatening comments online. Lopez and Cole have noticed this, too. 

“For disabled creators, we often receive more instances of hate and trolling than the average creator," Lopez says. "It comes from a fear or a fundamental misunderstanding of disabled people."

The algorithm responsible for boosting TikTok videos on people's feeds can also be a barrier. Mya says that she frequently deals with shadowbanning—where content is hidden from other users. Sometimes her videos will get less than 10,000 views, even though she has a community of over 340,000 followers.

In June 2020, TikTok issued an apology to Black creators for a glitch that suppressed content. They promised to fix shadowbanning issues. But, Mya and Cole believe it’s still happening. Some TikTok creators, herself included, will also have videos flagged for community guidelines violations that Mya says unfairly target disabled people.

“Individuals with facial differences, feeding tubes, ventilators, and more, will have ‘Sensitive Content’ warnings put over their videos,” she says. “I’ve had content removed for ‘Adult Nudity and Sexual Activity’ for wearing a crop top and dancing to a trending sound, and many more creators who I know have had similar experiences.”

Continuing to Celebrate Disability Pride

Despite these obstacles, Lopez, Cole, Mya, and many other disabled TikTokers continue to post about their lives in order to educate their followers and make those with disabilities feel less alone. Creating a community where disabled people can feel empowered in their identity and share their stories is one step to dismantling ableism. 

“We have to go out of our way to find each other's videos and support one another, but I think that’s a testament to just how strong, beautiful, and supportive our community is," Mya says. "Even with the app’s poor and unfair moderation, we are still out there, still posting, and still proud to be ourselves."

Though answering sometimes-invasive questions can be exhausting for Cole, she hopes her account can facilitate real education that doesn’t patronize disabled people, but embraces equality for all. 

“As an adolescent, I spent a lot of time alone feeling voiceless and ostracized,” she says. “I think that’s why my content and others’ interest means so much to me—it’s a display of the incredible growth I’ve achieved in gaining pride in my identity, confidence in myself, and the knowledge that the problem lies not with me or my disability, but with an apathetic and ableist society."

"I know that by sharing my experiences I can contribute in my own way to making the world see disabled people as valuable and worthwhile humans deserving of respect—because that’s who we are," she adds.

By Julia Landwehr
Julia is a health editorial intern with Verywell Health.