Editor’s note: Corinne Gray interviewed Tilly Lockey in 2019, when Tilly was 13. Tilly survived meningococcal septicaemia as a toddler and lost both hands; she later became an early user and ambassador for Open Bionics’ Hero Arms. This article preserves Tilly’s and her mother Sarah’s words from that interview while updating dated background information. Tilly’s comments about disability labels describe her own experience, not a rule for how other disabled people should identify.
For Tilly, the “disabled” label just didn’t cut it. She saw her limb difference, like other physical differences, as a superpower. The conversation that followed was as much about identity and language as it was about bionic arms.
What’s in a label?
The power of labels has been on my mind a lot. For one, I’d been thinking for a long time that I might be Autistic. And since discussing it with my psychiatrist, who I felt gaslighted me and retorted, “What does it matter? What will the label do for you?”, I’ve been forced to really think about it.
In a way, I understand where he was coming from. If I am indeed Autistic, it wouldn’t change who I am, and I’d still have to accept myself and learn how to navigate a neurotypical world. But for me, the label is helpful because it’s a framework for understanding myself. It’s a framework to help people understand me. And if I’m going to try to navigate the world, I kind of need to know what I’m dealing with, no?
So, what’s in a label? Does it matter how we identify? For me, and for many others, the answer is a resounding “Hell yes!” Words and language matter. How we define things and how we self-identify matter.
My conversation with 13-year-old Tilly Lockey and Sarah, her mam (mother), gave me an entirely different perspective on how we identify when our bodies or brains are different from what society expects.
Who is Tilly Lockey?
Tilly Lockey rejected the “disabled” label at the time of our interview. As a matter of fact, she hated it.
“If you break [the word] apart,” she explains, “it’s like [saying] you’re unable to do things, which I think is completely wrong.”
Tilly had been proving people wrong pretty much all her life. She was diagnosed with meningococcal septicaemia strain B when she was 15 months old. Her parents were told she had no chance of survival. She survived, but the illness led to both her hands being amputated. Sarah promised her that one day she would have hands again.
Years later, Tilly became known for fashion, beauty, public speaking and her work with Open Bionics. She was also an active part of the company’s user-testing process. Open Bionics said in 2025 that Tilly had worn two Hero Arms for nine years and had helped test newer bionic technology.
Tilly Lockey is much more than the “girl with bionic arms.”
Changing the bionic arm game
Open Bionics is a UK bionics company. Its Hero Arm is a lightweight, 3D-printed myoelectric prosthesis with multi-grip functionality. The company currently offers it for adults and children with below-elbow limb differences.
For Tilly and Sarah, finding useful prosthetic options during Tilly’s childhood had been frustrating.
“There wasn’t an awful lot that would help children. People would always say, ‘Oh yes, she’ll be able to have this when she’s older.’ But, I asked, ‘What about now?’ Surely there’s got to be something available for kids. And there just wasn’t.”
— Sarah
Sarah said cost and the relatively small market for children’s prosthetic hands were major barriers at the time.
“Their argument was [that] everything was going to cost too much money and that the market wasn’t big enough to really tackle that problem,” Sarah says. “Which is awful, really.”
The Hero Arm gave Tilly something very different from the prostheses she had worn before: function, yes, but also a design she wanted people to see.
“Everyone’s a person at the end of the day. Whether they’ve got hands or no hands.”
— Tilly Lockey
Born to stand out
“I like to think of my hands as a really awesome accessory,” Tilly says. “I like to match it with my outfit or how I’m feeling. It’s kind of like a handbag that you can just pick up and add to your outfit.”
That was very different from her experience of prostheses designed to mimic the appearance of human skin. Tilly described those as “really realistic, to the point where it was quite creepy how realistic they were.”
She said they didn’t move in a way that felt useful to her. More than that, she disliked what the attempt to blend in seemed to say.
“It was almost like you would wear them so other people didn’t feel insecure or uncomfortable around you,” she says. “It almost seemed like you were supposed to be ashamed to be different, and you had to look like everyone else.”
Tilly wasn’t interested in blending in. That was one reason she loved the Hero Arm and its changeable covers.
“It’s almost like you are wearing what they see in all the Marvel films. It’s so much fun.”
This tension between fitting in and designing for difference runs through disability fashion too. In another URevolution interview, disability fashion stylist Stephanie Thomas discusses why inclusive design should start with disabled people rather than treating access as an afterthought.
“The future is bionic”
Tilly’s work with Open Bionics crossed into games, film and fashion. One early project involved a custom Deus Ex-inspired hand. In January 2019, Open Bionics and 20th Century Fox also created custom Alita: Battle Angel Hero Arm covers for her before the film’s London premiere.
Her vision for the future was clear: bionic hands on fashion runways and magazine covers. Her role with Open Bionics included user testing, which meant trying new products and telling the team what worked and what didn’t.
Her goal was to keep working with the team to make bionic hands better, “to the point where they’re better than human hands,” she said. Tilly imagined a day when somebody might wear bionic hands because they wanted to, whether or not they had a limb difference. I could see why. She made them look so damn cool.
And this is why, for Tilly, the “disabled” label didn’t fit. She saw her limb difference as a superpower.
“Somebody who’s blind, their superpower could be the fact that they have a heightened sense of hearing and touch,” she explains, “Whereas people that can see might not feel like they have those same heightened senses as a blind person. So, I just think that everyone is just so unique in their own way and that should be really embraced. There’s no reason to have a name for it.”
Those are Tilly’s words from the 2019 interview and describe her own way of thinking about difference; they shouldn’t be read as a general claim about blind people or disability.
For Tilly, we’re all humans whose bodies have differences. If she had it her way, we wouldn’t have labels at all.
“Everyone’s a person at the end of the day. Whether they’ve got hands or no hands. Or whether they’ve lost a leg, or whether it’s deafness or blindness. At the end of the day, everyone’s just the same.”
“Everyone’s the same, but different. If you know what I mean,” Sarah adds.
Yeah, we know what you mean.
Maybe my psychiatrist is right. Maybe I don’t really need a label. Maybe I should just think of being neurodivergent as a superpower.
We’d like to thank photographer Christopher Owens for sharing his photographs of Tilly Lockey.
