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Illustration by Ari Liloan for The Verge

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How a teen punk led a movement for disabled people online

From Tumblr to TikTok, young disabled people are deciding how to represent themselves

When Tyler Trewhella opened Tumblr in 2014 and posted a photo of themself outside a diner, they had no idea that image would become their legacy. The photo shows them with cane in hand and cigarette in mouth, clad in boots, a denim jacket with pins, and a hat with earflaps. A small banner across the picture was originally going to say “diner punk,” but they decided at the last second to change it to “cripple punk.” Tongue in cheek, they captioned the post, “i’m starting a movement.”

The post attracted a flood of hate mail, saying that disability isn’t something to be proud of, that disabled people shouldn’t smoke, or that a movement that “leaves out healthy people’’ isn’t punk. Trewhella took screenshots of the messages and added them to the post, writing, “This is why we need cripple punk.” Other people with disabilities started reblogging the post to add their own selfies, and tagging posts with cripple punk. To Trewhella’s surprise, a movement was born.

Realizing they were the leader of this new movement, Trewhella slapped together some rules and principles. “Cripple punk is exclusively by the physically disabled for the physically disabled,” they wrote. “Cripple punk rejects the ‘good cripple’ mythos. Cripple punk is here for the bitter cripple, the uninspirational cripple, the smoking cripple, the drinking cripple, the addict cripple, the cripple who hasn’t ‘tried everything’ […] Cripple punk does not pander to the able bodied.” Unlike the common inspirational depictions of disability, cripple punk allowed disabled people to be bitter, messy, and honest.

The post on Trewhella’s blog that launched cripple punk.
The post on Trewhella’s blog that launched cripple punk.

Cripple punk grew into not just a movement, but a community. The tag flourished as people with disabilities celebrated each other, shared art, discussed feelings of shame, told stories of their experiences with ableism, and swapped tips about medications and mobility aids. The ask box of Trewhella’s blog became a public forum where people cracked jokes just as often as they sought guidance.

Trewhella died in 2017, a devastating loss both for self-identified cripple punks and for the wider disability community. But the legacy of the movement is still alive, not just in the fact that some people still proudly wear the cripple punk name, but in the ways that people with disabilities have continued to talk about themselves online in the years since.

Emily Flores was an active Tumblr user in her early teens, just beginning to seek out a community of her own. She remembers encountering cripple punk for the first time, and she still has screenshots of some of the posts on her phone. “When I saw it, and just how unapologetic and just how simply badass it really was, it was really impactful for me,” she says. In 2018, when Flores was 15 years old and tired of seeing people like herself written about by non-disabled adults, she founded Cripple Media, an outlet for young disabled people to write from their own perspectives.

The site publishes a range of cultural commentary, personal essays, interviews, and lifestyle tips. Recent stories include reflections on disability and body image, ableism and police brutality, and the rise of disabled influencers. The writers are in their teens or early twenties, and their ideas are often nuanced and well researched, whether they’re covering combat wheelchairs in Dungeons & Dragons or the lack of cabinet members with disabilities in Biden’s administration.

Before finding cripple punk, Flores often felt a complex range of emotions that she couldn’t quite understand. She was irritated at being dragged to muscular dystrophy events where adults would tell her how brave she was. “I didn’t know why I couldn’t just be happy and feel grateful,” she says. She had no friends when she started high school, and sensed that every interaction she had with other people was moved by pity. She felt like her caregivers, rather than herself, were the main characters in her life. When she read about cripple punk, “Everything suddenly made sense,” she says, “every emotion that I had felt when I was younger made sense.”

“That was when I started to identify myself as disabled,” Flores says, “and that was when I started to feel actual pride about my disability and started to feel proud about my community.” She had never posted a photo of herself with her wheelchair, and now she was seeing pictures not just of people in wheelchairs, but of people in wheelchairs who had the freedom to represent themselves however they wanted. Suddenly she could see her own future, one she had struggled to imagine because she’d so rarely seen authentic portrayals of people with disabilities.

Cripple punk emerged as a natural outgrowth of decades of disability advocacy and activism. The ethos of cripple punk is familiar for anyone who’s followed the history of disability rights movements or has encountered the work of crip theorists. But rather than being relegated to the pages of textbooks, the cripple punk philosophy reached young people like Flores in a familiar setting with language that was easy to grasp. For a number of disabled young people who spent much of their time online, accounts like Trewhella’s were a gateway to learning the legacies of disability activism.

Erin Novakowski, another member of the Cripple Media team, also remembers how disabled people on social media changed the way she thought about herself and her life. As a wheelchair user, she didn’t think she could ever wear formfitting clothes or skirts. When she started seeing photos of people with disabilities wearing all kinds of outfits, she realized she didn’t have to be stuck with the oversized sweatshirts she had limited herself to.

Just as Flores and Novakowski have been affected by the visibility of disabled people on social media, they pay it forward to others at Cripple Media and across the internet. Novakowski has about half a million followers on TikTok, where she started out making wheelchair jokes and then expanded into posting whatever she wants. “You get to see a 19-year-old who uses a wheelchair and she’s just living her life and doing silly little 19-year-old things. I think that that’s really beneficial,” she says. “I also get to just absolutely destroy ableists, which does bring me great joy.”

Novakowski has grown to embrace the cripple punk principle of not pandering to non-disabled people. As she’s spent more time on TikTok, she’s realized she doesn’t owe anything to people who say abusive things to her about her disability. “When I look back at posts that I was making when I was younger, I would always make sure I was very kind, very respectful,” she says. Now she relishes responding to ableist comments on her videos. She occasionally uses them as teachable moments. Other times, she simply responds along the lines of “I fucked your mom, you suck.”

“It’s hard for us to delve into film or fashion or mainstream media and have ourselves portrayed the way that we actually want to be portrayed,” says Novakowski. “With social media, we are in control of what we are showing and what we’re sharing with the world.”

Lauren Melissa, one of the non-teen editors at Cripple Media, knows it’s important for young people to have these opportunities to represent themselves. “There’s this message given, especially to young disabled individuals, that they don’t meet expectations, and that the only way to meet those expectations is to do exactly what other people tell them to do,” she says. “By giving them these spaces, we are really setting up teens to advocate for themselves, and also to live self-determining lives later on, instead of just learning from adults.”

The internet has provided more accessible opportunities for advocacy and activism, from disability-focused blogs that came long before cripple punk to tags like #CripTheVote and #HighRiskCovid19. “We might not always be able to leave the home for a whole variety of reasons, but that doesn’t mean that our experiences are less valid or the rights that we deserve are less important,” says Melissa. “It’s very exciting to see the kind of work that disabled individuals can do online in order to create awareness, acceptance, visibility, and to fight for disability justice.”

The year before Trewhella died, I asked them to define cripple punk. “I think it is whatever the individual cripple punk is getting out of it,” they said. They told me it wasn’t any one thing. It was a backlash against ableist society, a push for self-acceptance, a countercultural movement, a family — and sometimes a fashion show.

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