We speak to the 13-year-old amputee about her journey with prosthetics, being an ambassador for Open Bionics and the importance of diversity within the fashion industry
When 13-year-old Newcastle native Tilly was a baby she lost both her hands to Meningitis Septicaemia. That began a life-long journey to find the perfect prosthetics. After trying out various NHS-provided offerings and myoelectric options, and finding nothing was good enough, Tilly’s mother put her forward for an opportunity to help develop bionics arms with company Open Bionics using new 3D printing technology. Tilly was chosen and has been working with the company for the last three years, acting as an ambassador to spread positivity amongst fellow amputees and help make the best possible hands for others like her.
Using her social platform to share her story, Tilly showcases the progress and abilities of her bionic hands posting videos of herself doing everything from blowing bubbles to picking up marbles. Then last September, a beauty tutorial showing Tilly effortlessly putting on make-up went viral, further increasing her profile in the public eye. Since then, Tilly has met the Dalai Lama, appeared on This Morning and was given a pair of new bionic arms by director James Cameron at the premiere of his film Alita: Battle Angel, to name just a few highlights. Here we caught up with the teen to talk about her journey.
A big part of your incredible story is that you suffered from Meningitis and had to have both your hands amputated at a very young age, what is your earliest feeling of being different?
Tilly Lockey: Losing my hands so young has meant that I don’t actually have any memories of myself with them except this one time when I tried eating a tomato. I remember picking it up in my hand, taking the tiniest bite into it and throwing it across the room because I didn’t like it. Although I don’t really remember life any differently, I always knew I was different from other kids my age. When I would go to the park with my sisters, I would get all sorts of looks and stares just walking around the street. Curious children were constantly coming up to me asking me what happened – where were my hands? – and I had to repeat the same sad story every time. I knew, looking around, nobody else was getting questioned while they were playing on the swings.
When did you first start wearing the bionic arms?
Tilly Lockey: I first started wearing the hands I have now in January. That’s when I first got the pair I’m wearing now. However, I did have my own pair before these that were still from the same company but just a little smaller for my smaller arm at the time.
What were the prosthetics you had before like?
Tilly Lockey: The first pair of hands I ever got was from the NHS. They were merely tubes to put my arm in with three hooks sticking out the top. They were supposed to be fingers and they were tied together with elastic bands. They weren’t ideal and were really hard to move. A harness would be strapped around my back and shoulders and the way I moved my body would move each arm. I don’t really remember them but my mam said I hated it and didn’t associate them as hands.
What happened next?
Tilly Lockey: We then decided to go private and try to get an electronic pair. At first, they wanted to give me cosmetic gloves but that wasn’t what we wanted – we weren’t trying to cover up that I didn’t have hands, we just wanted something that could help. Then they gave me myoelectric hands. I was the youngest child in the whole of the UK to have them. They were realistic to look at with freckles, nails you could paint, and wrinkles but they worked so robotically. They could only open and close all the fingers together but not to the point where you could even hold a cup. They moved really slowly as well which was quite frustrating. Looking back, I think the cost of the prosthetic was going towards the appearance of the hand rather than its function and my mam would always ask if there was nothing better for kids?
How did you start working with Open Bionics?
Tilly Lockey: We then gave prosthetics a small break for a while since nothing was improving. My mam searched on the internet for a new technology that she had heard of: 3D printing. That’s how we found Open Bionics. They were looking for a child below-the-elbow amputee to help them develop their prosthetic arms so my mam put me forward for it. We were amongst hundreds of applicants and they chose me. It has changed my life.
What is the best thing that the latest Open Bionic prosthetics are able to do?
Tilly Lockey: My favourite thing about the hands is how customisable they are. No more than 10 years ago we were working with prosthetics that looked realistic but they didn’t move realistically so people would get freaked out about it and ask, “What’s the matter with your hand?” They weren’t helpful, more cosmetic. Now we can have any colour, any pattern, heck you can even have lights in them if you wanted! Now I just think it’s a lot more fun for kids.
Prosthetics are often associated with “robotics” or being “superhuman”- what do you feel about this comparison?
Tilly Lockey: LOVE LOVE LOVE! It’s amazing how people with disabilities were treated like the “unfortunate” people and now we’re the superheroes? It’s crazy, and I love it.
What are the biggest misconceptions about wearing prosthetics?
Tilly Lockey: I would probably say the biggest misconception about prosthetics is that just because you wear a prosthetic, doesn’t mean you can’t then do anything without it. This is completely false. I may do it a little bit differently, but just because my prosthetics are gone, doesn’t mean I am suddenly incapable of doing things myself. Without my hands, I can write, get dressed, brush my hair, brush my teeth, shower myself and do pretty much any normal thing anyone with hands can do.
Why did you decide to start using social media as a public platform to tell your story?
Tilly Lockey: I started to use social media to share my story because I found it a great way to reach out to other amputees like me and spread positivity. A lot of people have reached out to tell me that I have inspired them to not be afraid and love who they are. These are the messages that make everything I do completely worthwhile and it’s amazing for me to see just how many lives I’m impacting. It’s also a great way for me to showcase my bionic hands. I’ll show people that not only are these hands completely reliable and extremely useful, but they can be really trendy and fashionable too. When people see me wanting to show off my disability, it makes them proud and want to do the same.
Diversity has become a huge talking point in the fashion and beauty industry in recent years- how would you like to see the conversation change around prosthetics and beauty?
Tilly Lockey: Since prosthetics are so cool and personalised to you, with some trendy designs they could easily be on all the catwalks. I am signed with Tyne Tees Model agency which is great because it’s extremely important to me that prosthetics are featured more in fashion. I would love to see people who were scared of being different now being admired because of it. People need to know that no one is perfect. We need to build each other up through kindness rather than being jealous of what we don’t have. The important beauty is what’s on the inside. Your actions towards other people indicate your beauty so think about that before you try to tear someone down. Always try to do the right thing. They are the most beautiful type of people.
What is your biggest wish for the future?
Tilly Lockey: My biggest wish for the future is to continue improving these hands and continue helping others as that has always been my goal. I also hope in 10 years time Bionic fashion will be all over the magazines, all over the big screens in New York and it’ll be cool to be different. Our world is changing and I’m excited to see where my life will take me.
You can follow her journey on Instagram at @tilly.lockey or on Twitter at @GiveTillyAHand.