Defying odds: The amazing Tilly Lockey — Bit By Bit

Streaming from the streets of Johannesburg, South Africa, buckle up for news and views in the regular tech podcast Bit by Bit. Listen to Claire Mathis and Stuart Perry talk everything gadgets and tech.

Hello and welcome back to Bit by Bit.

I'm Stuart Perry and I'm Claire Mattes. And before you interrupt me, Stuart, okay, it is Women's Month this month, August. Yes, yes, in South Africa. And the 9th of August is Women's Day.

Yes.

So we've taken the day and turned it into a month.

Okay.

So where— for you guys.

Yeah, yeah.

But, um, I have organized us a very cool interview.

Great.

With the Bionic Woman.

Okay, cool.

You sound like you have doubts.

Yeah, close.

But I am very excited. So, um, this individual at 15 months old contracted some sort of septicemia. She'll tell you what it is.

Meningococcal septicemia.

Oh, okay, you're reading your notes quickly.

Yes, yes.

And her parents were told that basically the odds were stacked against her and she wasn't going to live very long. But this determined young little soul— and I suppose she's not young anymore, she's about to turn 18— she She defied all odds and she is here to tell us her story. So, um, let's get into our chat with Tilly Lockey. Okay, so, um, I suppose people are calling you, um, a bionic woman as well. But before we get to that, I don't know if you like the term or not. I don't— I mean, nobody wants to say anything incorrect or, yeah, or, you know, well, or offend you in any way.

No, of course not. Sits me down the ground like bionic woman. The thing is, I always say this, at the end of the day, what I've got is sort of a disability. But then people with terms like that, like, say it's a superpower. But that's what we're all about. It's like turning disabilities into superpowers and reinventing something that was probably quite traumatic, but literally just claiming it back and thriving and not letting it define you in any way. So, boy, when I grew and sits me down on the ground.

Okay, but before we— okay, so we're happy with that term. That's great. But I just wanted to chat to you, or we just wanted to chat to you about your journey. You know, how did How did you get to this point?

Yes. So when I was born, I was totally normal, happy, healthy baby. And then when I was 15 months old, I fell really ill with a terrible disease called meningococcal septicemia. Strain B is the full name of it. And basically what that is, is a disease that anybody can catch at any time. It's the inflammation of the membranes around the base of the spine and the brain. And that can often bring on septicemia, which is a form of blood poisoning. And that's what sort of kills off your body, rotten at the extremities. So when I was ill with this disease, I had the rash on my body, which was like septicemia, and that's honestly often like the last symptom before death. So as soon as they saw that rash on my body, my family just discovered it at home. My mom recognized the rash, so she called up the hospital and she was like, listen, I need an ambulance here. And they were trying to ask her all these questions and that, and she was like, listen, I'll answer any questions, just tell me you're on the way. Type thing because she'd actually read about another little girl's story who actually ended up losing all four limbs. She had the same thing. But it was because my mom had read that story and they'd been so open enough to share that, and her seeing it, she actually like recognized the rash to be the picture she saw in that article like about 3 months prior. Wow. So as soon as she's seen that, in reality she was like, I know what this is, please just get here, like I'll answer any questions. I'm sure it's this. So that was a bit of motherly instinct and really, really happy coincidence that my mom could pick up on that, yeah, like right away. Um, and then when I got to the hospital, I was pretty much given 0% chance of survival. There were already like 12 paramedics there, um, started like ripping clothes off and like sticking tubes here, there, and everywhere. And I was in intensive care for 1 week, I was in recovery for 3 I had a secondary infection and 10 blood transfusions, but obviously I'm here today. I managed to pull through somehow against the odds, and yeah, um, I made it through somehow. But they did have to amputate my hands because the septicemia had well and truly, like, devastated it, which you can see in pictures.

That must have been terrifying for your mom and your parents.

Yeah, yeah, yeah, yeah. But thank God she read that. Is that part of why Because you're, you're a pretty high-profile figure now. Um, is that part of what you see as a— I don't know, is it, is it a way of paying back or something? Do you want— also hope that your story will help someone else who's in your position in the future?

100%. Like, I don't know if I would be here today had it not been for that, do you know what I mean? Because immediately my mom would have noticed this is bad, and you're motherly instinct and you want to protect your children. But she might not have known that it was such a race against time, because at that point it really, really is. Like, it can take your life so, so quick. Yeah. Um, so as soon as that appeared on me, like, it was a race against time. And she knew that only because of that article that she'd read. Yeah. And I'm a big believer in everything happens for a reason. And my mom will literally say, like, when she saw that article, like, it was in a magazine or something, and it's like, you don't really want to read it because it's upsetting and it's devastating as well as a mother. But she was like, no, I've got like responsibilities now. And that sort of like kicked in. She had two daughters at the time, so she was like, no, I be reading this stuff. She read it, and thank God she did, because like 3 months later she was in the same situation. Yeah, but I always, I always say that when I go around doing my presentations and things now, like, it's such a massive reason why I think it's so important to share your story. Um, because you never know, even in a totally different scenario, like, you never know how much your story can help somebody else. Yeah, even if it's just a relatable aspect. Hearing that probably saved my life, and my mom hearing that probably saved my life. But even like the small things, like you never know what somebody's going through.

Yeah.

So I feel like it's so important to share your story, all the details, and who knows, like maybe that would be the case.

Yeah.

In the future, somebody else here, mine.

So when I met you, um, you're— you, I mean, you're a lot younger, um, but your, your big thing was, um, you know, showing people your arms, you know, um if, if somebody was sort of giving you a side eye in public or anything like that, you know, you, you, your ideal was to educate people and have people come over, you know, have a look, just so that it's not so foreign. And I suppose that's also part of the education side of things.

Yeah, yeah, turning taboo subjects into something that we can, we can all discuss, that it discusses, is obviously commendable and brave as well on your part. Yeah, because I think I mean, we all grow up. I mean, you're much older now, as Claire said, but I mean, as a young child, we're so— especially now it seems we're so aware of our surroundings, we're so aware of everyone trying to fit in.

Yeah, you know, you're awkward at that age. So to have somebody, you know, to have somebody to be so open and then just sort of educate and then—

yeah, how difficult was that as a young child to notice that people are noticing you? and to feel eyes on you.

Are you getting that motorbike?

No.

Nobody's so flipping loud.

No, we're not getting that at all.

I think when I was growing up, like the, the first thing, like I guess sort of the first time I really like felt different because I never really felt it too much when I was a kid because I've got three sisters and such a close knit family. And my thing with my family is that they've never ever treated me any different. Like they would treat me same as my sister, um, same classmates at school. I didn't really— it wasn't like a special treatment that I got separate, you know?

Yeah.

So when at home, in my home life, like, nobody— it was just like somebody would have brown hair and somebody would have blonde hair. It really wasn't a big deal. But obviously when you're in a new environment and you've got a school or a big place for it, and I think for a lot of kids who deal with the same thing, like growing up with a limb difference, it's like when you go to the park for the first time.

Yeah.

And all these— because it's all kids, right? Really young kids. And everybody else seems to like go in, and my sisters were the same, they'd go in, make friends there, and, you know, run off into the sunset like we're all best friends. Yeah. Whereas for me, I always felt like it was a little bit different. So like, obviously it was— these kids have never seen it before, so the first thing you'd notice is like stares. Like you get so many stares. But also they're not really at the age to understand. They don't know that people can look that different because everybody's got hands. Right? That's all they've ever seen.

Yeah.

So you're literally the first person they've ever seen who's missing a limb, like missing something that they thought everybody had. Yeah. So yeah, like the park was like a really popular in the park but not in a good way, sort of. And you'd get a lot of stares, and then you get a lot of people who are like just not used to it and probably avoid you. And you'd also get the people who are curious but they're kids so they don't really know how to approach it very well. Yeah. And so I'm not gonna lie, like I hated the park growing up. Like I just did I just hated going. I just didn't want to go. Um, I was always quite like introverted anyway, and I was a really, really shy kid. Um, but for me, I think that's when I first realized that I was sort of different. And obviously this was all something that you tackle when you first got into like primary school. So I, yeah, that I, I like, I always like went about my lessons and things fine. And I don't know how related it is, but like I was a really, really, really super shy kid. Like I had my friends from nursery who came up with me, but like, I literally remember like from the age of 4, like vividly, like giving myself pep talks to try and get me to like ask somebody to play because I just had it in my head that like they would just say no. And I think this is obviously like a subconscious like fear of rejection or something. So, and I feel like, like this is why I'm passionate about prosthetics and that because I really feel like the prosthetics I was wearing at the time really fed into that because before I was offered anything technological at all, like I was given a glove and then something really realistic. So it's like constantly, like, basically being told that you're not supposed to look like that.

Yeah, yeah, yeah.

So, but I wasn't, I wasn't much shy about my body or like scars or anything when I was a kid. That sort of all happened when I got into like the junior years.

Yeah.

Um, and I envy me when I was in like, when I was 4 years old, because I, she didn't have a care in the world and actually wear the dresses and things like that. And then when you get older, that's when you start to become more like paranoid about stuff like that. Um, But yeah, I just always felt like sort of it was, it was like unheard of to like go outside and not have all the stares. Yeah, so I've got used to it and I sort of, I never push people away. What I'll enjoy more is when people realize and then they'll come and talk to you. Yeah, because I would much prefer that than like they see that and then draw their own conclusions. There were so many times where like kids would be looking, so they got the mum and they're like, Mom, why is she like missing a hand? What's going on there? And the mom's like, oh 'Oh my gosh, don't say anything.' Yeah, yeah, yeah. Like, that makes it more of a thing. But also, for the kid who's grown up, like, that's what their parents tell them. That's gonna make them act weird towards people with differences in the future. So I always encourage people coming over because once I explained that, then we could be best friends and they'd just be like, 'Okay, cool,' and then we'd like open at the sunset as well. Yeah. So there was like this barrier of like, I had to explain this first but I sort of become accustomed to that, so it wasn't really a massive thing, and so I just do it. I mean, people who have never had to do that would probably find that really annoying. Yeah, but for me, it's like that was, that was the norm, and I didn't mind because I was the first time people were seeing it.

I think it's interesting because, I mean, those parents, they're not doing anything malicious. They're, they're trying to do what they perceive to be the right thing, or, or maybe they're just, I don't know, feeling awkward and don't know what to do. So I think, again, it's important what you're saying now to share your perspective on that. But you've mentioned the prosthetics as well. So I can see now in the video chat, I mean, this, I mean, it looks amazing to me. But how did this start?

Well, first of all, take us on the journey.

Yeah. Yeah. How did you first get approached? Because obviously you mentioned you got a glove, you got standard prosthetics to start with. How did it go from that to what you're, what you're using now?

Well, it was a process and a half, to say the least. Like when first I got given a glove and then I got given my first prosthetic from the NHS. Still, it was really weird though. Like, everybody— it was really taboo. Like my first prosthetic was literally given to us in a brown paper bag, like something really weird. And really, yeah, it was really weird. And when we were like, we thought that was weird anyway. But like when we were leaving, there was a woman who came running after us who was also in the waiting room. She was like, can I just ask, like, what did they give her? So we showed her because we weren't like worried about the paper bag or anything. We opened it up and we showed her and she was like— she just gasped and like took a step back and she was like, that is exactly what they gave me 25 years ago. No, oh my gosh, 5 years and nothing had changed from the functionality to the material to how it looked to anything. Bear in mind, this is like a tube to put your arm in, like 3 prongs sticking out the top tied together by elastic bands. And it had been the same for 25 years, probably longer, because that was only like according to her and when she'd had it. So that was immediately like, whoa, what? Because you feel like it would come on so much in that time, yeah, you know. But like, yeah, it was, it was staying exactly the same. I didn't really get along with this prosthetic very well. I couldn't operate it because it was all like harness, like the way you'd move your upper body would pull on strings and make this pinch motion. So I, I couldn't— sounds like torture. Yeah, I mean, well, I was only, I was only like 3 years old at the time, so I couldn't actually comprehend like how to do it. And the strings were actually quite hard to pull and stuff as well, so like physically it just, it wasn't for a 3-year-old to be using. So after that, we wanted to get a prosthetic, a different one, and one that was like technological, because there was no technology in that one. It was like body-powered. Yeah, so we wanted to see what was out there prosthetic technology-wise, and that's when we like given a glove and things. And my mom was like, oh, sick. So like, what does it do? And they were like, oh, like nothing. You just like stick it on the end so that people look nice in public. That's literally what—

right, okay.

So that was it. And so she had to do a lot of fighting and campaigning for a hand that would move, because that to us was just like, what's the point?

What a weird way of looking at something. It's like it's this thing you've got to hide. So they've given you a way of— yeah, it's like giving you a way of hiding your problem. Please don't show us that. And rather than giving you something that actually gave you better mobility, just leaving you alone, it's another thing.

Just leave me alone. I don't need a glove.

Yeah, or just move at all. It just didn't even move. And like, that's why we were just— that's why my mom so casually was like, okay, tell us how it works. And he was like, what do you mean? It just sticks.

It's just a glove.

It's so unethical, really. Yeah, yeah. Like, it obviously took some mental toll on me.

No, I was just gonna say, it must have done. Yeah, because it— this is now confirming to you at a very young age that you have a problem, that— or that you're—

I don't know, you don't fit in.

Yeah, yeah, you don't fit in. I think it's exactly that. That's the way they're putting it, rather than how, you know, how can we help you.

Yeah.

Do you feel that a lot of prosthetics and a lot of what— I mean, I'm hesitant to call it a bionic arm because I think that's how it's referred to everywhere, but that kind of, um, prosthetic now, do you think a lot of it's come from wounded soldiers, from the Paralympics and that kind of thing.

Aren't you the product developer? As far as I remember, weren't you part of the product development?

Well, yeah, I am now with these bender palms. The only, like, the only thing I can— I suppose some people want realistic looking hands, some people aren't so, like, want to stand out and aren't so, like, unbothered by it like I am. So, like, I don't think anyone's done it to be malicious. I think number one they just never asked like what the top would want. And that's the first thing Harmonix did that made them different. Like they actually asked like, what do you want in the hand? So I don't know whether it was like soldiers and that, and then they want obviously their hand back that they lost. Yeah, that's why it went so realistic and it wasn't really questioned. But I think it got to a point where I really needed to be questioned because then you're just like forcing this down, like, young people's as well, like, throats, where it's like you've got— you look different and that's wrong. Yeah. Yeah.

I also think maybe your age, you were, um, I don't know, um, a difficult target market because, you know, everyone else will just kind of accept it, whereas you still have a life to live and you want something that works and that fits in with your life, whereas other people I think would just accept, you know, a limb or a glove or whatever. You know, some people will just be like, well, if that's what I'm getting, that's what I'm getting. Whereas you and your mom, or you and your parents, probably decided, no, no, not acceptable. I should be able to have something that works.

Yeah, I mean, for us it was always about— I just, I just— it was actually a time, like, in the back of the car where I was— we fought for this myoelectric arm that would actually move. So I became the youngest child in the UK to receive a myoelectric arm because of that. And so I got this hand that would move, it was still really, really realistic, like layers of high-definition silicone, like looked like a glove, like had my sister's, um, hand details on it because sisters are said to have similar hands. So she went and like they molded it after her hand, has the same freckles, wrinkles, nails you could paint and everything. So it was still very much like we're making this realistic, right? Um, and then but it can move, so that was like a plus and it was a step forward because I could actually move with it. When I say move though, like, it moved really, really slow, and it only opened like about that wide.

Okay, yeah.

So like, you couldn't hold a cup with it, or like a fruit shoot, even like a little tiny little kiddie drink what I was drinking at the time. Like, you couldn't do much anything with it, and it moved so, so slowly. And as well, being a kid, like, I'm so impatient. Like, you just want to like eat some chicken nuggets, you know what I mean? But it's so low and so limiting, and probably limited as well still by the layers of silicone that was put on top of it to make it look realistic. That's never what I was really fussed about.

So the thing is, I'm, I'm doing a part-time course at the moment on UX design, and so user interface design, and, and just they're talking about how you develop a product. And it's funny, you know, what you've just said there is exactly the core now of UX design, which is to research, so to talk to the people who are going to use this product, whatever that product may be. And I think with, with your experience, and I think I would imagine this is true across the board, you can't build something like this in a mass-produced way. It's for individuals. So it has to be— yours needs to be tailored for how you like it to look, for what you want to do with it and how you want to use it. And I think by the look of what you've got there now, You've got a very— I mean, that is unique, very unique. I mean, one of the coolest things. I mean, that really is. It's very cool to look at. But so is that how you feel it's developed with whoever's doing this for you now? So who are the team behind what you've got there now, the prosthetic you're wearing now?

Yeah, so the team behind the bionic arms that I wear today are called Open Bionics, and they're a super cool company. They're based in the UK, in Crystal. And I started working with them when— well, I found them when I was about 9 years old. And what really intrigued me about them was the fact that for the first time it just felt like the visions were aligning. Like, it was the first— I was 9 years old and they were working with like Disney and Marvel at the time making Iron Man arms. So as a 9-year-old little girl, I was like, heck yeah, yeah, yeah. I was like, what am I doing with these realistic looking like ugly things? Like, I want Iron Man arms, you know what I mean? Yeah. So it was just really, really exciting. And so I literally put in a little application thing and they picked me to be like sort of their guinea pig tester over the years. And I was a developer, product developer. Yeah. And I was, I was, I was so much a part of the development and it was so good because it was like, like I said, like they actually asked as soon as I got there, like, what do you want in the hand? And that's something which is so important, which carries on and why they just keep getting better and better is because that's not even just for me to do. It's like, for everyone who wears this technology, what do you want to see? Like, they've actually got a box in the lab where it's like you can just put your little ideas in, and people do because it's their life that's been directly impacted by it, you know.

What did you want? Sorry to interrupt you.

What did I want? Well, I started when I was 10, so I wanted all the crazy, like, lasers and Spider-Man. Yeah, I wanted it. I still want Spider-Man.

Yeah, yeah, me too.

That urge has increased over time as I've gotten older. Yeah, but like, I wanted like a personal assistant in the hand. Oh yes, like my maths exam and like all sorts. Um, but I like this, there's, there's other things that there's more now I'm older, there's more like serious things I want. But like one of the first things that weren't in the hand when I got it and we like had to develop was ventilation. And that's one thing which is like like, surely, you know, ventilation. But like, they're making these bionic arms but they can't test them. Yeah, and that's where I come in. And we took this hand to San Diego Comic-Con because we were showcasing one designed after a video game there, and I was like 40 degrees Celsius or whatever. We were like, oh my gosh, there's no ventilation in the arm, that's a problem. That's like, that was the first thing to get fixed.

But ventilation for comfort or to stop the actual arm itself overheating? In and wasn't— okay, yeah.

Well, I mean, I mean, like, literally I got stuck in the arm while we were there. Like, Sammy, the co-founder, was like literally trying to rip it off. Like, it was so tired and like terrible. Oh, it's terrible.

So, so with that arm you've got now, how has it changed your life? What, what can you do with that? Are there any limitations? Well, first thing, this is, this is me living in South Africa for so long. One of my first questions, because I've— as we explained to you at the start, we, we're currently got— we've got no power at the moment. That must need charging. Does it charge overnight? How long does it last? And things like that.

Yeah, so there is a battery in the arm, and for me it sits in here. Okay. Some people have it like— you see that extra little lump there?

Yeah.

Um, but some people have it like inside the arm. It depends on your limb difference and how long your arm is, because I've got— I'm like at the wrist, I've got a lot of length. Yeah, it's out there. But for somebody who's like just below the elbow, they can actually put it inside. But there are just batteries that you plug into the arm and they give you a charger. The battery lasts about a day and a half and I usually charge it overnight. I think we tested this one of the experience days we did. It takes about 3 hours maybe to get like full charge and it lasts like a day and a half, so that's pretty good. I've also at this point now I've got like so many batteries like lying about.

Yeah, yeah, yeah.

So sometimes I just bring a spare battery. You just like unclip this one, put a new one in. Um, so yeah, maybe when you have power you just like bulk charge.

But as a— this, this is the way my mind goes though— as a teenager, do you— did you find that was the perfect excuse that you couldn't help your mom every now and again? Like if Claire said to me, Stu, can you do the dishes? I'd be like, oh, my battery's dead, sorry.

I mean, I used that excuse before like I even had Bonicons. I can't do it. Yeah, funny, because Mom was like, shut up, you peel satsumis in the corner because I'm so openly the most independent person ever. But like, when it suits me.

Yeah, of course.

Yeah, of course. Yeah.

So, okay, so you get like a day and a half from that, and then you can use it pretty much as anyone could use their hand. I mean, is the sensitivity of touch— so like, obviously I saw something years ago, and I know this is a long time ago and a lot of iterations before what you're wearing there, but Some people would pick up a cup and then crush it by accident because there'd be too much power. And, you know, is that something that needs to be set?

So it has got limitations. It's not exactly like a hand that you wear. I mean, like you guys, you don't wear your hands, they're just attached. But like, yeah, there's like, there's certain limitations. So first of all, like there isn't a sense of touch or anything. So everything I do, I'm like judging visually. Yes, on things. It also, like, one of the first questions I get asked is like, oh well, will you crush my hand when I shake your hand? It doesn't let you do that either. Okay, so it reacts to like pressure.

Yeah.

Um, so a certain amount of pressure like pushed against it, like then it just won't go any further. So I can actually like control like how light my grip is and squishing a bit more, but it will stop itself at a certain point so you couldn't like crush something. Like, you couldn't crush like a glass. I could crush like a paper cup, for example, because that's not as tough material. I think the best thing that I've ever crushed was like a chocolate Santa Claus, a little chocolate to eat.

Poor Santa.

Yeah, I was quite impressed by that.

But you play the piano as well, don't you? So the fact that you can use your fingers like that is so impressive. Aggressive.

I don't actually use these ones to play though.

Oh really?

No, I've got a different prosthetic for that.

All right, you cheater. I don't know if that's cheating or not.

Yeah, is it hooked up directly to the internet? You don't even think it plays the piano for you? Is that how this goes?

That's something I want in the next arm.

Yeah, yeah, yeah.

The one I use for piano is literally a garden rake and a toilet roll tube. What? Yeah, literally.

Homemade.

I don't— I can't even picture that.

No, I'm so impressed.

It's on my Instagram. I did like an angle. Obviously that was the first thing people are like, what the hell, how's she playing? Um, but I've got this thing, it does like triad chords, and then I just use my arm on the other side and I can play.

Yeah.

Wow. So that's so impressive.

Obviously, like, I've been through your Instagram and I've looked— I saw you singing beautifully, by the way, as well. I was really impressed.

Super talented.

Yeah, very talented. Quite annoying, to be honest with you.

Um, we are, we're underachievers comparatively.

Yeah, but I, I just, I wonder, I mean, you're, you're very high profile. I think you're doing a great thing. I think, I think what you're putting forward is definitely going to help all the kids and other people in similar situations. But are you concerned that you become known as, I don't know, just defined by this one thing when there's obviously multiple facets to who you are?

Yeah, 100%. I think I think that's something that I try to— that's why I try to have a bit of everything on my social media and that. And thing is, I don't wear the hands 24/7. Like, I'll wear them every day, but if you spent a day with me, you'd see me literally whip them on and off like as I please. Like, and it is something— it's a question that comes up quite a lot as well. And it's like, that is a worry because you're right, like, there is more to a person than that. And And like, obviously there's, there's quite a variety of people who follow me and they follow me for different reasons.

Yeah, of course.

So like, there's so many people who will have come see me at a tech conference and be really, really into the tech. Yeah. And then, I mean, I did makeup tutorials for a bit.

They were so good.

So good. So that's like a teenage young girl audience, um, that maybe people who were interested in technology and came to the conference on that first of all. But actually you find like like they are still interested in it because to them it's like seeing the Barnacle do stuff like that. Yeah, so it is like different. Like, it's so true that I've got like maybe like 4 or 5 like different groups of people who follow me and we're all in one place on social media. But the way I try to, I guess, run that is just to be like really, really authentic. Like, I don't even plan really anything that I put out on social media. And all I'm trying to do on there basically at the end of the day is just like share my life day to day, what's it like. I do want to be somebody who I wish like I could have looked up to as a kid, but then my passion behind everything is always going to be like developing the prosthetics and things just because it impacts my life, but also like ever since I was 7 years old I was just really committed. I used to think about the people who had had hands their whole life and then and all of a sudden then lose them. Yeah, because for me it's like I, I have maybe one memory having hands, but to me like this is all I've ever known.

Yeah.

And I used to think about the people who— the amount you do with your hands every single day, to be like that and then to lose them overnight, because that's what can literally happen and does happen to the people who come and get these bionic arms. Um, and that's what I used to think about consciously when I was even like 7 years old. I was like If the hand that is available right now is the best of the best and it can't open wide enough to hold a cup, that's a problem. Because imagine, I mean, both of you have hands. Imagine if I told you tomorrow you're gonna wake up, you're not gonna have hands, and also you've only got this prosthetic to rely on, but you can't even have a cup of tea with it.

No, I die without my tea.

Yeah, no, yeah, but, but, but what's great about what you've done though is actually, no, because now I've spoken to you, now I've seen Instagram. I've seen what you've done, and, and my— yeah, well, I do want those hands, but, but no, my thing is that yes, it would be absolutely devastating. I can't even begin to imagine it. Yeah, but I'm sure there would come a point where I go, hang on a minute, this girl from a very, very young age never even had what I've lost, and, and look at how well she's doing, and look at the— and like I said, there's so many facets to who you are. I think that is, is, is is inspiring. And I think, I mean, as much as it is— the reason I mentioned, by the way, at the start the Paralympics is because I didn't think that they'd perhaps changed anything other than maybe they'd given, um, I don't know, um, a customer, a customer journey to product manufacturers. So what they'd now— they'd forced technology to develop because they were developing it for soldiers or they're developing it for Paralympics Olympians. And then the other side of the Paralympic thing as well is that, that in itself as well is also very, very inspiring to see. Like, we get, we get down about everyday silly little things, and then there's people out there that are overcoming huge issues. And you're right to identify the fact that some people have had limbs and then lost them, and that, yeah, that must be devastating. But you are, you know, your inspiration.

I just think, like, because at the end, like, a lot of people sometimes feel guilty for like being upset about certain things in their life when they see people who on paper have less. Like if, if you're down because of like just something random that in your head is like, it feels big until you see somebody dealing with something like that which you could barely imagine. Yeah, like people have the tendency to feel like really, really guilty about it. But I think the thing is, and what I've learned with the human body, is that adaptation is such a crazy thing. Like, the body is so good at adapting, and you will sit there and think, I would never be able to go through what she's gone through. But if you were put in that position, like, your body— like, I, I don't know if it's just me, I don't think it is, but like, your body just sort of goes into like survival mode, and it's just like, let's do it. Yeah. Like, there's certain operations that I've been through which I can look back on now and think, oh my God, worst time of my life. But at the time, I was holding on to like the bars of chocolate that my friends would like deliver me in hospital. Yeah, like naturally your body just like sort of figures it out. And it's so cool seeing like other people with limb difference as well, like really young, like 6-year-olds and that, and they just figure stuff out because they're in that situation. So, and that's just gonna like develop further and further. It's like human evolution, like adaptation is such a vital part. And I feel like the people with disabilities who are adapting to like new technologies and things like that, like experience that firsthand.

Yeah, yeah, I think it's something that adaptation and things like something that people have always been doing, but you covered it at the start. You saw the, the doctor's attitude to you. They were giving you something to cover up your disability rather than something to help. Now you're out there showing it. It does show people that how adaptable we are and what we can overcome.

Yeah, the thing is though, I mean, you're, you're on social media, um, and it can be a dangerous place, I think. So how do you cope with, you know, do you get any hate and how do you cope with it? I mean, there must be challenges that come with, you know, I mean, we, we hear about like overweight women or plus-size models who constantly get hate. There must be, you know, how do you deal with things like that?

To be honest, and people always ask me this question like in real life as well, like I think when you— when you— it sucks and it's nobody's fault, but it's so sad that we feel like because somebody's got this different thing about them that it's more likely that they get bullied and things. The amount of times I've been asked, like, were you bullied at school? Luckily and thankfully for me, I know so many people are, but I actually wasn't. But it's the fact that, like, we're in this world where you're so right, like, people who are a little bit different or not don't fit that stereotype they're the ones that are like clawed upon 24/7.

Yeah.

And lucky for me, that wasn't the case at school ever, um, and it hasn't really been on social media either. Obviously you get, you get the odd one, like, that's like unescapable, I think, for anybody. Yeah. Um, and I don't know, I feel like I put myself out on social media because I'm so sure of myself and my mission and my passion anyway. And the people who are ableist, for a start, that to me is just like somebody just— they're just not with the times. To me, ableism and racism and everything, it's all an issue, but I feel like where we're at now, people are actually more accepting than ever, which is really awesome. And I'll always, always be an advocate for representation and things because that makes people people who have that disability feel more seen, but also it helps people who don't have that disability be less weird around it when they see it in person.

Yeah, it's really good.

I do get the odd comment, to be honest. The more I just bin it straight away because I'm just like, it doesn't affect me, and you're gonna get one in a pool of glorious, lovely messages. There's always going to be one. Yeah. And the way my coping mechanism is with it is just to laugh Yeah, um, but more than anything, it's just like I get a lot of questions and I get a lot of like jokes, like certain jokes.

I think we, we all need to remember that people who do hate online usually have their own issues that they're dealing with and they're just trying to take it out on somebody else.

So 100%, and it's so easy. I think, I just think I just don't really have much, I guess.

I love that you laugh at things though.

I think, yeah, I don't really have enough I don't care enough because I don't have enough respect for people who would just like go berserk behind the screen. Yeah, because they never say it to your face. So like, to me, I'm just like, go off. Yeah, yeah.

It's kind of sad, isn't it? You know, I think that's what you just said, Claire. I think you've got to feel sorry for people who are doing things like that because they're not happy. A happy person doesn't go around doing things like that. But I'm glad you're not, you're not experiencing it. But so has this introduced you— so, so going to to get fitted for prosthetics and go into the clinics and hospitals, and you must meet people in similar circumstances to you, you've had similar things. Is that— do you find yourself as part of a community now?

Are you leading that community?

I don't want to say I'm leading it. I've met so many people though, and it's like, for me, like growing up, people always ask me, oh, have you ever been to like the camps and things? Because there's like so many like camps that you can go to and holidays and that. When I was a kid, I never really did, just because again, I suppose the way I've been brought up, like, to me it was like people have brown hair, people have blonde hair, people have hands, people don't. So to me, I never really like felt like I needed to go out my way to like meet my kind or whatever who were missing limbs. But that's just because I've never ever seen it. Like, same thing with race, same thing for anybody. Like, I just don't really see like the physical body as like anything. To be honest. And the more experiences and the more people I meet, it's really nice because like we like relate in a different way. And a lot of people go out of their way to be like, I need somebody to relate with me with this. I never really felt that, but there is such a sense of community when you meet people and you're all making jokes about same things and like stuff that like you guys would joke about on social media and that. Like we'll, we'll be in the room like making hand puns and that just because because we've all just become accustomed to that, you know what I mean? So it is a funny little environment and it's like as well when you feel like you're the only person in the world because like it is so like so far in between, like I don't even know how many people are in like the Northeast who are an amputee, you know? It's a really small minority but then when everybody gets together it's like, oh my gosh, it's actually not that small at all. Yeah, you don't believe it. It's just, we're just dotted about.

Do you feel like dark humor is something that just happens at these kinds of things, because I love dark humor in the right circumstances.

Yeah, no, no, 100%. Like, I feel like if I make any— I can make the same joke a million times over, but if it's a dark humor joke and I stick it on TikTok, it will pop off. Like, they love it.

They love it.

Yeah, yeah, yeah. I think— I just think it's because it takes a lot of comfort in yourself to make— to make self-deprecating jokes, especially, and and, you know, dark jokes about, about a situation that people see is very, very serious.

Yeah, yeah.

But also, also when I like don't see it as that big of a deal, I just feel like it's sort of like a cheat code for life because people just think I'm so funny. Yeah, yeah. To me it's like, no, but I'm glad you think so.

Yeah. And so, so would you say there's a lot of— I mean, you know, what you've gone through is terrible, and especially to go through it as a, as a young child, and terrible, I would imagine, difficult for Parents. Yeah, yeah. Do you feel like there's, there's been lots of positives though that have come from this?

100%. Like, I'm— I feel like I'm just out here like totally spoiling my presentation that I give right now. But like, I always say the big question that I get asked all the time is like, if I could go back in time and change what happened to me and not lose my hands, like, would I do that? And like, I honestly wouldn't, because to think of myself with hands, for a start, feels strange. Yeah, my entire family is like, that feels strange. But also, like, everything I do today has been like sort of a domino effect. And sometimes I get in my head about it and I'm like thinking about it, I'm like, where the heck would I be right now if all that hadn't happened? And I couldn't even tell you. Like, I don't even know. But I'm so content and happy with my life how it is now that I don't even want to imagine because I mean, I did— I've had so many like operations and all sorts which have been like rubbish and I've hated and that. And because of this operation, I was like out of school for like 6 months and my attendance was like really bad. But my attendance was also really bad because I was doing motivational speaking and everything. Yeah, I actually like finished— I— well, I didn't finish, I became homeschooled and online school from like year 9 purely because of attendance and that. And I cared about my education and still, and I wanted to get good grades um, but like, if I hadn't had meningitis and lost my hands, I wouldn't have had that operation, which would have made my attendance so bad. I wouldn't be doing the motivational speaking because I'd have no motivational speak about. So like, I would literally still be in school, and like, that was something that I like, like, a long time ago. So, you know, the, the domino effects which have like got me here, I just— my life would be completely different. I think me as a person and my mindset and everything would be totally different, and I feel like I'd honestly struggle a lot more Yeah, yeah.

Are there sort of any technologies or advancements that you know about or that you know are happening or coming or anything, anything that you're excited about other than Spider-Man arms?

Oh my God, there's so much I'm excited about. This is the best thing, is like, because I, I don't know how they make half the things, but I'm still like a proper nerd about it all. Yeah, like, guys, I love this idea, this idea, this idea. I'm really interested in how like they all do it, but like being like their main sort of guinea pig and back ambassador, like, I get to speak at the tech conferences where all sorts of crazy stuff are happening. And it's so exciting for me, the little nerd that I am, because I'm like, I'm at the forefront and I'm seeing it 24/7. Like, I've been to events where they've made, like, they've been like making digital pictures like based on brainwaves and the music you're listening to. So exciting. I've been at an event where somebody's literally had a chip implanted into them live. Um, so like so much crazy stuff. I'm really excited about— it's controversial, but I'm really excited about the whole brain chips.

Yes.

Idea.

Yeah.

Coming up, because I feel like that attached to prosthetics would be absolutely game-changing.

Yeah.

Because right now it's like muscle operated, you still gotta think quite a lot, whereas if it was purely the brain, like, the possibilities are endless. And so that really excites me when it just prosthetics. Um, and yeah, it's funny because people, I feel like, more and more nowadays are like scared of technology. Yeah. Like, I suppose like when I go to these events, I'm sort of like showing people technology that's used for the good, like all the technology that's really changed people's lives, like making people walk again, giving people limbs back. Like, it's, it's, it's that type of stuff that we actually forget about like all too often.

Yeah.

And I feel like in the right way, technology and even the scary advancements that are happening right now are actually going to change people's lives. Yeah. So, yeah, I'm always going to debate.

And are your parents on board with technology? Because everybody's parents— I mean, ours are a little bit older, obviously, but parents just don't give a fuck. Are your parents keen? Do they know what's going on?

Well, my mom's not keen on the brain chips, I'll say that. I like, I'm like quite introverted. I'm like turning 18 in like 2 months, and so mom was like, oh, like, what, what are your plans? And I was like, I was like, maybe I'll just get with like the guys at the lab and we'll all go out and get implants. And my mom was like, what?

You're terrible.

She's actually worried for me when I say anything.

You did say something interesting earlier. You said, um, the human body— you said something like the human body is not that big a deal to you. And I think that's a, that's a realization that I'm slowly having, and I'm 47 years of age, and you've had it much earlier.

I'm 21.

Yeah, yeah, yeah, sorry, I'm 21 as well. My dad was 21 when he died.

Don't laugh so hard, I find that quite offensive.

So, but I just think, I think you're right. I think it's a really interesting perspective, and I think that the whole, um, The Matrix movies was all about, you know, are we just basically— could we just be a brain in a jar and have all these amazing experiences, um, and just by— with our imagination?

It's, it's still something that I deal with though. Like, sometimes when I do all these talks, I don't want to come across like I don't actually have these issues as well. Yeah, like, I'm— everyone's like, oh, you're like so wise beyond the years and things, but I'm still like on my own personal journey. And it was only this summer actually, and I spoke about it on my YouTube channel. It's only really been this summer where I've actually started to let go. Like I spoke about it earlier, when I got into the junior— like when I was a kid, I envy my kid self because I'd wear the shorts and the skirts and not worry about the scarring and all of that. Then I got into the juniors and I started to worry about that, and it was only like sort of— I talk about seeing other people, like it doesn't really matter, but that doesn't change the the fact that I'd, I'd like, I'd still think about things in myself. It's like you could be insecure about anything and I'd be like, don't be stupid because you don't see it, but you see it in yourself.

Yes, of course.

So like, yeah, it was only like sort of like this summer where I was like, you know what, what am I doing? And I made a whole YouTube video about it. And what actually sort of snapped me out of it a little bit was the idea as well that like I could have— it was like it was Limb Loss Awareness Month. And so I always reflect on that time around April. I'm like, I quite literally shouldn't be here today. And like that is like an epiphany I had. And I'm lucky that I get to have that every year because it's like a reminder. And so when it came to summer, I was like, what the hell am I doing not doing what I want to do because of this silly little insecurities when I shouldn't have even been alive, you know. So there's, there's still stuff that I deal with today, um, which I think a lot of people like maybe like think I don't. Like, this is— I'm like really quite the same as everybody else, but I have a— I don't know, I think it's so much easier to have a perspective on other people, but you always like have your things about yourself and still a personal journey that I'm on that I'm trying to tackle as well.

Yeah, I think that'll still— that'll carry on for years. I mean, I'm in my 40s and I'm in on a personal journey as well. So yeah, I think it just keeps— you just start accepting yourself a little bit more. But I think I'm still waiting for that.

But I think what's, what's unusual, Tilly, is— and the reason I brought up that thing about the brain in the jar and what you notice is self-awareness is great, but I think self-awareness awareness at a young age is unusual. I mean, I was a pretty selfish person up until— I'm 47 now, so up until I was 46 and a half, basically. Yeah, yeah. But so I think, I know, I would imagine that a lot of what you've gone through has, has led to that. But it's great, I mean, because, because that level of self-awareness is really powerful. And I think you could— you're in a position really to, to choose your future rather than just let life happen to you.

Yeah. And show people that acceptance is what, you know, you— we have to accept ourselves.

Yeah, yeah. But, but also the, you know, get over it, you know, you know, get over it and get on with it. Yeah, yeah. I mean, you know, people are— but I think, you know, if people want to find out more about you, people want to follow you, where can, where can they do that?

How—

what's your— what are your handles and usernames?

And of course, well, you can get me on Instagram @tilly.lockey. YouTube is Tilly Lockey. TikTok is also Tilly Lockey. And I've got some music coming out soon. Tilly Lockey on Spotify as well.

Oh, I'm excited for that.

What, soon? How, how soon is soon?

I think in September. Okay.

All right.

Okay, good.

Yeah, well, you can definitely sing. I've seen that. I was, I was impressed by that. I read that you won won— was it a talent thing, Claire, that you mentioned?

What was the talent thing? Tell us about that.

I won— well, I wanna— it was a singing competition on CBBC. Um, I did it when I was like 14, so I'm 17 now, so it's about time I start releasing music, basically. Um, but yeah, that all aired 2021. I got to sing at Radio 1's Big Weekend on the main stage with like Ed Sheeran and all sorts. Like, it was, it was mental. And now I really like what I've been doing this year and years prior is in and out the studio working on my own stuff. So super fun. I need to start learning how to plug Spotify as well.

And what kind of music can we expect?

It's sort of like, it's quite edgy, like pop rock sort of vibe, if that's your cup of tea.

I'm definitely going to listen.

Sure it will be. Well, thank you so much for joining us.

Yeah, thanks very much for your time, um, and good luck with everything. Good luck with your singing career.

And hopefully we can speak to you again in the future, maybe once you've released an album.

She won't speak when, when that hits. She won't speak to the likes of us. No, that's what's going to happen then.

Thank God we got in there first.

Yeah, we'll— when you hit number one, we're going to re-release this podcast episode. That's what we're going to do. Yeah.

Okay, thank you so much for your time. We really appreciate it.

Yeah, thank you so much. Okay, okay, have a great day.

Thanks a lot.

Bye-bye.