By Chloe Johnson
If you enter the world’s most popular app, TikTok, ADHD might genuinely be the first thing that nondisabled people think of when they imagine what “disability TikTok” might refer to. News sites are even obsessed with how neurodivergent disorders are being self-diagnosed on the platform.
For the disabled community who really taps into TikTok, however, disability hashtags are often the one safe haven to explore their disabilities in an otherwise ableist world.
But how does it get so misconstrued?
#ADHD has over 16.4 billion views on TikTok, with #ADHDtiktok not far behind at 4.9 billion. It’s worryingly easy to go down a TikTok rabbit hole; as soon as you watch one video, thousands more pop up to replace it on your “For You” page. With so many videos under ADHD hashtags, it’s likely one will show up to you, especially if you’re interested in conversations around mental health.
ADHD being digested into small, bite-sized videos is both ironic and means that “overdiagnosis” is a common point of discussion. There is something to be said for simplifying complex neurological disorders, but for many, it’s a way to find connection, support, and to explore the valid process of self-diagnosis as a starting point—not an endpoint.
Destigmatizing Disabled People with #DisabledAndCute
Despite people with disabilities constituting one-quarter of the population in the U.S., they are often discriminated against, ostracized, and lonely, especially for those highly vulnerable people who may feel as if the world has forgotten that COVID-19 can still be fatal for them. The enormous cross-section of disability videos on TikTok helps to normalize people with disabilities.
Social media has often been a source of engagement for disabled people, with popular accounts such as deafblind activist Haben Girma regularly seeing thousands of likes on Twitter, whilst Keah Brown launched the hashtag #DisabledAndCute on Twitter (now popular on TikTok as well) in 2017 to destigmatize disabled people in fashion.
Specifically on TikTok, however, there is a way to be instrumental in teaching the next generation about disability. Fifty-six percent of people viewing disabled TikToker content are between the ages of 18 and 24, and 96 percent of the rest of these people are under the age of 35.
This means that the stereotyped version of disability—typically targeted on social media and in ads toward an older demographic, as if disability is something that happens primarily with old age—is rarely seen on TikTok. And with over 15 percent of the world’s population being disabled, and long COVID adding to the number with 1.2 million newly disabled people, this younger audience is providing a fresh perspective.
Marie Dagenais-Lewis
Known on TikTok as @r.a.r.e.advoc8, Marie Dagenais-Lewis shares informative videos about the history of ableism and rare diseases, as well as her own artwork and makeup processes. She’s noticed that TikTokers lean toward educating a younger audience. This has made the platform not only a place for information—for instance, “spoonie hacks,” a term used to refer to life hacks for the chronic illness community, can be seen often on Marie’s TikTok—but also a place for disabled people to make a living.
@r.a.r.e.advoc8 It’s hateful that we have to experience the headlines like this. This is ableist hate. #Fyp #Spoonie #ChronicallyIll #SpoonieStrong #EhlersDanlos #InvisibleIllness #Ableism #AnchorVoice ♬ Fallen down – Slowed – 「Incørrect」
“[TikTok has] given a breath of fresh air [to the disabled community] that allows us to try to make a career off of our experiences, by being a content creator on a platform many brands look towards to connect with a younger target audience,” Marie tells me.
“[Tiktok] allows us to communicate in a way where we can be vulnerable, but still have the ability to ‘turn off’ communication when we are feeling too vulnerable.”
Watch Move Me on PBS
Watch TikTok, Boom. on PBS
April Lockhart
Many disabled advocates and influencers on the platform agree that TikTok can be a great place for self-expression. When April Lockhart posted her first video on TikTok, she didn’t expect a growing audience to identify with her. Earlier this year, she created a challenge to post 30 videos for a month curating different outfits, simply for fun.
@april_lockhart modeling all the @aerie gifts i’ll be buying my sister & friends ???? #AeriePartner #AerieREAL ♬ original sound – aerie
Since then, the 27-year-old has gone on to create makeup videos, interior design videos, and other style updates, racking up to half a million views for her “Normalizing Disabled Fashun Girlies in your Feed” videos over the month.
April, who was born with amniotic band syndrome, which means she doesn’t have a left hand, uses the TikTok space to spotlight her disability, showing that disabled people can also be seen in popular fashion and makeup trends without it becoming about inspiration.
There is a huge market for content that engages with giving disabled people a voice, and April is just one of hundreds who are showing that disabled creators deserve a space on the platform.
Imani Barbarin a.k.a. @crutches_and_spice
Imani Barbarin, @crutches_and_spice on the TikTok platform, has received over 33.8 million likes on TikTok. In a recent video, she discusses disabled “influencers,” and the problem with making it seem, because there are prominent disabled people on this app, as if ableist and problematic experiences do not happen.
@crutches_and_spice Some people will never be better for disabled people until they are us. #disability #influencersinthewild #influence ♬ original sound – Crutches&Spice ♿️ :
“I’m on this app every single day and there’s always one or two stories about influencers acting poorly, basically feeling entitled to spaces or products, right?” Imani begins on the video, speaking to the camera. “The other day I was asked about the nature of being an influencer with a disability, and keep in mind I’ve been doing online work and advocacy for about ten years, and never really felt at home with the term ‘influencer,’ but I’m answering the question because it’s a fascinating one.”
She continued, “Whilst some abled influencers are fighting for their ability to get things and places, disabled people, in contrast, are just trying to get people to treat us better. And while entry to these spaces for a lot of these influencers is a perk, for us, it is our right, and can mean the difference between actually living our lives or being discarded by society.” [Watch/hear the rest here.]
TikTok is not the end line for the disabled community, but for many, especially the younger generations, it is a place for their self-advocacy and unpacking internalized ableism to start.
How TikTok Needs to Improve
Marie Dagenais-Lewis believes that TikTok has the ability to be pivotal in the mission to bring about equal rights for disabled people, but that the app itself needs to try harder to address these issues.
“We have the room to really improve life for the disabled with TikTok,” she says. “[However,] with the rise of disability advocates on social media whilst influencer culture is also on the rise, we open ourselves up to a lot of medical gaslighting and ableism.”
“I’ve personally experienced quite a few people minimizing and undermining my work as an anti-ableist chronic illness advocate because ‘I just want to get famous on the internet’,” she continues. “While TikTok is a powerful tool for us advocates to really help create the awareness, representation, and acceptance that is needed for us to live fulfilling lives, the fact that we are in an ableist society that sees people like myself as ‘faking for attention’ is something that makes it much harder.”
Mutual aid, support, and information specific to individual disabilities have helped disabled people find a home and representation on the app, and these do not necessarily exist elsewhere. The disabled community is making the best of the imperfect space of TikTok to empower the next generation toward better prospects and into being invited to a more inclusive world.
Chloe Johnson is a freelance journalist and magazine editor who has worked with publications such as The Grammys and The Independent. More of her work can be found at https://linktr.ee/WordsbyChloe.