Tilly Lockey interview

Image by Debbie Todd @debbietoddphotographer

AN INTERVIEW WITH

Tilly Lockey

TILLY LOCKEY IS A 15-YEAR-OLD MODEL AND INSPIRATIONAL SPEAKER FROM NEWCASTLE. SHE IS AN AMBASSADOR FOR OPEN BIONICS AND PRESENTER FOR FYI NEWS4KIDS, AMONGST OTHER THINGS!

In January 2007, 17-month-old Tilly Lockey miraculously survived after contracting group B meningococcal septicaemia. She pulled through but unfortunately lost both her hands and all her toes. Despite the numerous challenges Tilly had to overcome, she regained her strength and is battling on. Tilly and her family are looking for ALL the support they can find, the most successful being the “Give Tilly A Hand Scheme” http://www.givetillyahand.com We spoke to Tilly to find out some more information about the amazing work she has been involved with and her journey which has led her to where she is now.

YOU HAVE A NEW TV ROLE AS A REPORTER ON SKY’S NEW TV SHOW, FYI: FOR YOUR INFORMATION. WHAT ISSUES ARE YOU MOST LOOKING FORWARD TO REPORTING ON?

This issue I’m most looking forward to reporting on FYI is inequality and discrimination against the world’s minorities. It is so important for me to be able to speak out and educate young people about a problem that affects many of us individually, for example the colour of a skin, our size, culture, disabled bodies, etc. It’s sad that we even have to be activists for this because, at the end of the day: these are basic human rights! No one should be discriminated against, singled out or judged for what we cannot control. We are all human. People are people no matter what you look like or believe in and that is the message I’m trying to portray.

HOW OLD WERE YOU WHEN YOU GOT YOUR FIRST BIONIC ARMS AND WHAT DIFFERENCE DID IT MAKE TO YOU?

I don’t really know if I can call my first prosthetic ‘bionic arms.’ They were merely a tube with 3 prongs sticking out the top, tied together by elastic bands. I received this when I was two or three years old. It wasn’t a great experience. The device was handed to me in a brown paper bag as if something to be concerned about and it wasn’t a technologybased device. Basically, the way it moved was I had to wear this big harness which connected to me and one of the three prongs. The way I would move my upper body would pull on strings which would then pull one of the ‘fingers’ left and right. I thought of the device as more of a weapon than a hand to be honest. It didn’t help me in the slightest so it was definitely a shock for me and my mam first entering the prosthetic world! I didn’t let this first bad experience put me off prosthetics though. Instead, it more so fuelled my motivation to work with prosthetic companies to get something better.

Fast-forward to the bionic arms I wear now! I remember putting the

prototype on for the first time and the feeling I got was unexplainable. I picked up on how to work my muscles to cooperate with the arm’s fingers within about 15 minutes (it was that easy!) and within no time at all I was chucking around tennis balls making a mess! It was an amazing experience and felt like the start of something huge. It is fair to say I’m happy I stuck in with prosthetics!

WHAT ADVICE COULD YOU GIVE TO OTHER AMPUTEES WHO USE BIONICS LIMBS?

My advice to other amputees who wear bionic limbs would definitely be that practise makes perfect – you’re not going to be able to move fluently with your arms overnight and it’s going to take some time to get used to doing the things you want to do. My other piece of advice would be to not let the prosthetic mask your difference, instead let it accentuate that, because our differences are what make us who we are! I love to have my arms different colours to match with my outfit or mood and it’s always fun to have them light up! They’re like a fashion accessory!

HAVE YOU FACED ANY HURDLES WITH YOUR DISABILITY? IF SO, HOW HAVE YOU OVERCOME THEM?

I have faced a couple of hurdles in my life due to my disability. Of course there are the physical challenges that

Image by Debbie Todd @debbietoddphotographer

come with having a physical disability like mine, but there’s usually a way around it like adaptations or me just figuring out a unique way to do what I want to do. However, a lot of the challenges that come with having a disability come with stigma around the word ‘disabled’ and the ideas society has placed on everyone - no matter what the disability. Growing up, I always wanted to start wearing prosthetics. But my whole life, I had people and doctors trying to give me a glove. Not a prosthetic, but a glove made of expensive material that my family had to provide the finances for - just for it to do nothing! Simply an accessory designed to make me

blend in like I had something to be ashamed of and to make able-bodied people around me feel comfortable. I had to fight for a hand that could open and close, and this led to me being the youngest person in the UK to have ever received and worn a mioelectric prosthetic arm.

I’ve always struggled with people just automatically making their own assumptions about me and what I can and can’t do. That always really got on my nerves because I do consider myself to be a very independent and determined person (my family could tell you that!). I think the best way to overcome interactions like this is basically just to educate people on it. Just because I’m missing hands doesn’t mean that I can’t draw, write, dress myself and it doesn’t mean that you need to aim any interactions with me to my parents. I am very capable and I want to be treated like the normal person that I am.

WHEN DID YOU START LEARNING THE PIANO?

I started learning the piano when I was around 7 years old. We’d had a piano in the house which my family had bought second-hand. It was crumbling and the paint was peeling off but they wanted to get it because when I was getting my hands amputated, playing the piano was one of the things on the long list of ‘things I would never be able to do’ and my parents never wanted to give in and limit my abilities! I was just having a tinker on the piano when I was 7 and ended up learning how to play Beauty and The Beast’s ‘Tale as Old as Time’. My mam filmed this and documented the achievement on social media and a local newspaper actually printed the story which was then seen by an amazing pianist named Michael Mulroy. Michael was missing a leg and he instantly knew he wanted to teach me how to properly play piano. So he started coming over for lessons which he never charged us for and he even went out of his way to create me a DIY prosthetic device to help me play chords on the piano (which was

otherwise a thing I couldn’t do as you need minimum three fingers)! I still use that device today! It is made from a toilet roll tube, a garden rake and some tape, but without it, I wouldn’t be able to play. Michael is absolutely amazing and I owe it all to him!

WHEN DID YOU FIRST START GETTING INTO MAKEUP AND CREATING YOUTUBE TUTORIALS?

It’s actually quite a funny story! I went to school one day around Christmas time where I fell over and ended up breaking my fall with my right elbow. I thought nothing of it. It hurt but I thought it would just ache for a bit then go away, so I went to my next lesson. It was there I realised that my elbow was not recovering and I actually couldn’t bend or straighten my arm. So, my mam picked me up from school and took me to the doctors. It turned out that I had fractured my right elbow and had to wear a cast for 2 weeks. I was in this cast over Christmas which was very annoying because having only one arm was far from ideal! For Christmas I had asked for bits and pieces of makeup just to play around with and when it came, I was itching to have a go, but it was very tricky doing that with one arm. So I thought, why not try and do it with one bionic arm? At first, it was a messy procedure and I got makeup everywhere, but I was eventually able to complete a full face of makeup using only one bionic arm! I filmed this and put it out on social media where it gathered a lot of attention. I’ve been doing it

Image by Debbie Todd @debbietoddphotographer

ever since and now it’s a lot easier because I have two hands!

COULD YOU TELL US ABOUT SOME OF THE AWARDS YOU HAVE WON?

When I went through the trauma of contracting meningitis and going through my amputations, I was nominated for a lot of bravery awards when I was very young. Recently, I visited New York where I picked up a Humanitarian award for giving back to the community. It was a spectacular night and my first trip to the big city and under such incredible circumstances - it was like a dream come true! I also have a lot of mental achievements and awards and I am so proud of everything I’ve been able to accomplish and be involved in so far in my 15 years of life!

YOU HAVE BEEN INVOLVED IN SOME INCREDIBLE THINGS. WOULD YOU SAY THERE HAS BEEN A SPECIFIC HIGHLIGHT?

Probably the highlight of everything I’ve done is being able to have built up my presence online to help other people like me who have the same, similar or even a completely unrelated disability to mine, but are still faced with the same discrimination which unfortunately comes from being under the ‘disabled’ stigma. I treasure my social media profiles so much and I like to use them to reach out and support other people, speak about activism issues surrounding inequality and ultimately just have