About sixteen percent of the global population lives with a disability, and a portion of people in that group, approximately 57.7 million, are amputees with limb differences. Disability designates the world’s largest minority population, and as with any identity category, the experience is unique for each person, their backgrounds, lifestyles, and goals informing how they understand and inhabit their bodies.

Sophie de Oliveira Barata knows these variances well. For more than a decade, she’s been at the helm of The Alternative Limb Project, a Lewes-based studio that makes custom prosthetics for people with amputated or missing appendages. The designs range from uncannily realistic to fantastic, fairytale-like creations that fall at the intersection of art and medicine, a unique meeting point she discusses in a new interview.

In May 2023 via Zoom, I spoke with de Oliveira Barata about the young girl who helped inspire the project and the balance between form and function when designing medical aids. We also discuss how cultural conceptions of physical disability have evolved, the importance of inviting people in to conversations about differences, and the imaginative, empowering possibilities of alternative limbs.

This conversation has been edited and condensed.

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Grace Ebert: Can you take us back to the beginning? I’d love to know about your background in special effects and medicine.

Sophie de Oliveira Barata: I’ve always had an interest in the arts, and medicine has always run alongside. I studied a foundation art course, and I was working at the hospital at the same time. My curiosity for special effects came about through a hospital program, which involved reenacting a big disaster to see how they would cope. They would have makeup artists on board, and so that got me interested. Even though I was wanting to go into fine art, I thought I could do something a bit more vocational. I studied special effects at the London University of Arts. I learned prosthetics, body makeup, and conceptual designs, as well as working with costume and technical effects. I was going to go into the film industry, and then I heard about a job making prosthetic limbs for amputees.

I was at a place called Steepers Group for eight years, learning how to make realistic-looking fingers, toes, partial feet, partial hands, and full arm and leg covers. I even made a bottom for someone. I always got partnered up with people that wanted something way out. I kind of missed the art side, even though it was ultimately really challenging and rewarding. Trying to mimic skin tones without the tricks of the camera was really challenging. It was a great job, but I missed the kind of free-thinking that the arts gave.

I stayed behind and made loads of costume pieces, and they didn’t realize I was there until like four in the morning sculpting. I had so much energy then. I’d wake up and cycle around the block and pretend I’d been home. I’d squirrel away all these creations that I’d been making overnight, and then I just thought, “ What can I do with this? Can I combine the two somehow?” At the same time, there was a little girl that was coming to the clinic, who wanted something a bit different, some drawings on her leg, cartoons. I could see from a rehabilitation perspective she was really excited about that. She was in a terrible accident and had her leg amputated at the scene, and she got a realistic leg made every year through insurance. But rather than have a poorer version of what all the other children had, she was able to have something quite fun, and she was interacting with the whole process a lot better.

Every time I saw her, I would be encouraging her to do this and that. From a rehabilitation perspective, I thought “Oh, wow, what about wearable art?” Then I started experimenting with some ideas, and I typed in amputee model and found Viktoria Modesta on the front cover of Harper’s Bazaar with a prosthetic leg to one side. It told her story of wanting an amputation at the age of 16 because she had problems with her leg and loads of operations and a past of bullying. She didn’t have any emotional attachment to this leg. So for her, the story was really empowering, the idea of embracing a prosthetic and seeing it for something completely different, as an example of her kind of courage and her bold attitude. She was excited about the idea of wearable art.

One other woman I was working with said, “I’ve not really considered myself as being beautiful, and I thought I’d lost that part of my identity.” So I thought, “Oh, from an identity perspective, there’s something really in this, as well.”

I then set up The Alternative Limb Project in 2011, where I continue to make realistic-looking limbs because I could see there was a need for them. For some people, the idea of having a realistic limb would be a body balance thing or not being first and foremost known for being an amputee. One woman had a terrible accident, and she said she hadn’t come to terms with the idea of being an amputee yet, so to have a realistic leg meant that she could come to terms with it without having everyone else’s opinion chucked at her. She could come to it in her own time.

I did the realistic limbs and then the alternative limbs, each one being completely unique and different, reflecting the person’s character. Now they’re for performances, too, and exhibitions.

Grace: I’m wondering about the difference between realistic-looking and alternative limbs.
You’ve spoken about the empowerment of having both options, but what do you hear from people who are coming in to work with you on these designs? How are they thinking about power?

Sophie: It’s more celebrated now, and people are much more aware of limb difference. There are a lot of agencies now looking for models with limb difference and adverts, films looking to showcase different bodies, embracing body diversity. You’re seeing more and more of this, and people think about disability in a different way.

And with wars like Afghanistan, wounded soldiers are coming back. One guy, Ryan, who was ex-military, said he was so used to being amongst his comrades, who would all make these jokes like, “Oh, that’s just a scratch wound,” and they’d all be missing big chunks of their body. They were so used to seeing that and all these replacements they had access to. Going out into civilian life, he would be stared at a lot, and he said, “I really want to give them something worth staring at. This is nothing.” He wanted something that would bring that unspoken dialogue that allows the person they’re interacting with in on the conversation. It’s not a starting point of pity.

With the limbs, I’m bringing emotion that isn’t necessarily negative. I was walking with Ryan, and someone was like, “Oh, wow, that’s really cool. That’s amazing.” Suddenly, he was empowered, and it was a playful kind of trickery, an optical illusion. It was just a refreshing conversation. It’s a bit like fancy dress in a way. It’s like an icebreaker. And more deeply your showcasing how you feel about your body.

A lot of people say it’s really empowering, almost like their alter ego coming out. For Viktoria Modesta, a spike leg had come to her in a dream, and it was like the ultimate form of power dressing for her. The leg is like a stiletto, but on a point, a big spike coming right down from the knee. I can’t really speak for her, but if you’ve kind of struggled with bullying and identity a lot, and then you’re able to take control over your body and how you want to come across, it’s empowering.

A lot of people who encounter the prosthetics respond by saying, “Wow, that’s so cool. I really want one.” That would never have been the case in the past. Even if anyone stopped to think about it, they wouldn’t perhaps want to be an amputee.

There was one woman who was born with a limb difference below her elbow. It never really bothered her, and she hid it quite well. She would be speaking to someone new, and then suddenly she’d realize in the middle of the conversation that they’ve noticed that she didn’t have full arms. It was almost like you could cut the tension with a knife. She said she wanted to freeze the moment and say, “Hey, I’ve just noticed that you’ve noticed that I’ve got limb difference, and it’s all okay. Don’t worry. This is what happened.” But instead, it’s this awkward thing you bumble your way through. Having something alternative would address that subject straightaway.

I think it’s personal, bringing a bit of your soul and personality to the foreground and showing people how you want to be seen.

Grace: I really like the idea of inviting people into the conversation. It’s not any person’s job to explain why they are missing a limb, or why their body is different from another body, of course, and at the same time, I can see where that would be really empowering to have it be so obvious.

Sophie: Yeah, exactly. Interestingly, there were two people who had realistic limbs–I think they were both legs–and they said they would quite happily invite people to talk about it. They’d be like, “Wow, isn’t this amazing? Doesn’t it look so realistic?” They would almost be of a similar ilk, but their choice of having a realistic limb was as a body balance type thing and not be first and foremost known as an amputee.

When I used to work for that company, we would get sent all the information, and we wouldn’t actually see the clients. That little girl that I saw was quite rare. We would get sent information from prosthetists all around the world, casts, pictures, and color references, and we would make it to that spec. We would not necessarily see the amputees, so you make something and send it off, and you wouldn’t actually know whether it was right.

When I started working for myself, I invited the client into the process. There would be moments when they would come in, and I would be sculpting while they were still there. When you’re part of the process of the limb being made, you’re more likely to take ownership of it. You can see that the color match can be amazing, but then, the next minute, when you walk into a room, you go cold, and the prosthetic stays the same temperature, the color differences are noticeable.

There was one woman, and I had made her a realistic-looking leg. She had lost her leg due to blood circulation problems, and it was so hard to match her because she was changing color all the time. We settled on some colors, she left, and when she came back a couple of weeks later, she put it on, and we were like just like, “Yeah, we did seem to get it right, but now it’s not.” As she walked around, her body camouflaged to the legs. It was just the fact that her blood circulation wasn’t the same when she walked in as it was later.

In some ways, it’s easier to go for an alternative because you haven’t got to match something that’s just changing all the time.

Sophie de Oliveira Barata

A lot of it is about expectation. Some people have an idea that it will just be exactly the same all the time, and your body is a living organism, which is impossible to replicate. In some ways, it’s easier to go for an alternative because you haven’t got to match something that’s just changing all the time.

Grace: How many people do you have on your team right now?

Sophie: It’s really small. I’m basically just running the project, and then I collaborate. I have a Chris Parsons who is a prosthetist that’s in-house. I usually work with the amputee’s prosthetist, but they could come to me, and they could work with the one that I have in-house, which means that we can work together straight from scratch. So rather than getting a limb structure and me dressing the limb structure, we can actually design it completely. But I need a prosthetist who’s clinically trained to sign everything off.

In terms of collaborators, I initiate ideas, designs, the concept with the client. My specialist skill is sculpting, but I can do other things. I tend to work and collaborate with glass blowers, woodworkers, metal workers, people who know laser-cutting, CNC, CAD designers, product designers, and electronic and mechanical engineers. Each piece is completely unique, and it calls for a different range of skills. I’ll usually get the team together and then oversee it and join the dots. Sometimes I have a making hand in it, as well.

Grace: What is the balance between form and function when you’re designing one of these pieces?

Sophie: Normally, in prosthetics, there’s a kind of triangle. You’ve got the fit and the comfort, the functionality, and then you’ve got aesthetics. You want to sit within that triangle, but if you want to push anything to an extreme, the triangle peaks at one end. Sometimes, the others suffer but not always. The running blade is a perfect example. You can get a really good fit, it is completely unique and elegant in style, and then the function is obviously amazing. It’s not always like that, but it depends on the purpose. I make covers for people that want it for every day, and then, like I said earlier, I’m doing more pieces for performances and exhibitions, in which case, I’ll find someone that I think has an interesting story, a really strong look, or is an interesting character.

There’s a pole dancer, and a prosthetic limb was made for him. He could only use it for traveling between the two poles and when he was up in the air because the socket was completely free in the back. Normally, it’s all the way up against the calf, but because he needed skin on the pole, it needed to be exposed. This meant that it wasn’t massively safe for walking, but it was perfect for pole dancing. There’s a balance, and we look at the risk and what’s necessary.

Grace: I imagine that extends into the materials, as well? Glass and wood could be extremely heavy.

Sophie: Yeah. Some things are heavy, but actually, it’s all about the fit that determines the comfort. If you’ve got a shopping bag that’s just got one strap, and it’s dragging you down, it’s gonna be really uncomfortable. If you’ve got a backpack and all the straps in the right place, then you can take a lot of weight. A lot of it is down to the fit of the socket in the first place.

There was one arm we made for a woman for her wedding, and it had a crystallized resin forearm section. It was quite heavy. She actually preferred the weight. She said, “It feels like my other arm as opposed to this super light thing.” There’s a balance.

We just have to talk about things like that. If someone wants something metal plated, it’s going to be much heavier. And, for example, glass would be encased within a surround or would have to be a certain thickness where you could literally just chuck the glass on the floor, and it wouldn’t smash. It’s super strong.

A lot of these pieces now are more concept pieces for exhibition. Kelly Knox is a good example. She’s a model and has no arm just below her elbow. She was born that way, and she said, “I’ve never got on with prosthetic arms. I’ve always found them cumbersome. I love what you’re doing, but from a disability activist perspective, you’re hiding what’s there.”

We decided to make her socket gold so you can still see the shape of her limb, and then we ghosted the rest of the arm in perspex and resin. She had a heartbeat sensor connected, so she had this little ticking in the wrist that translated her heartbeat into the prosthetic. Even though it’s not something she wears, it was a project exploring prosthetics from an angle that isn’t normally explored. That’s what the project’s about, addressing it from a completely different angle. Since normally prosthetics are about fit and function, extreme sports, and this is all arts and psychology.

Grace: What are the technical advancements since you began the project in 2011?

Sophie: Prosthetics are having more modular components. You used to have a limb, particularly a lower limb, for different activities. If you suddenly become an amputee, that’s a shock. You’re like, okay, so I have to have a swimming leg and then a running leg. Now, a lot of the big prosthetic suppliers are starting to build modular systems, so it’s easier to swap in and out.

Since my project, and also the awareness of prosthetics, there are more online shops with really user-friendly customization. It’s affordable as well. Each piece that I make is completely unique, with different processes, different materials, and loads of experimentation, whereas these kinds of shops just need a scan of your other limb, and they reverse it. You can choose different shapes and how it clamps on. It’s really user-friendly and affordable. There’s a lot more customization going on. Open-source programming, as well. They’ll have sensors in the forearm, so it picks up your muscle group. You learn to twitch certain muscles, and then they trigger the different movements in the fingers. There are more complex systems, like computerized knees and ankles which help people power up steps and inclines.

Osseointegration happens a lot more, too. That’s a surgical procedure with a titanium implant that’s kind of knitted into your bone. It permanently sticks out, and you attach the limb directly to that so you don’t have to have a socket. So for a leg above the knee, you would have this pole sticking out of your thigh. Rather than having a whole socket around your whole thigh and having to change the sockets all the time because of swelling or weight loss or weight gain or rubbing or whatever–all the uncomfortable things that make you need to change your socket all the time–you don’t have to have that. Because the limb is directly attached to the pole and that’s directly knitted into the bone, You walk and then you get the vibrations that come right through to your body so you get feedback from the ground. There’s a lot more of that going on.

Even insurance now. They used to say like-for-like, meaning they would offer something close to what you had before so a realistic cover But prosthetics are just not the same. You’re not the same person anymore. Psychologically, you don’t see your body in the same way. I can see that it makes it easier to calculate costs. We fought that for one case, and I think we were the first people to do that. We had an alternative limb that was through insurance. They’re doing that a lot more. I was recently invited to talk to a load of insurance claim case managers and solicitors to discuss the importance of identity and the psychological benefit of getting the aesthetic right for the use. It helps with socializing and acceptance.

In terms of The Alternative Limb Project, it just started with me experimenting, and then obviously collaborating with other people that could do amazing things. I worked with this girl called Dani Clode on this vine arm. This is probably the most exciting one, which is alternative in style and function, but also control. She controlled it through her toes, so she moved her big toes deliberately up and down. They hit these sensors that would then trigger the action, Bluetooth to the arm, and the arm would coil, depending on which sensor you hit. Alternative functions are the kind of things that I’m interested in.

Grace: I would imagine that exhibitions are bolstering that goal in that they’re bridging the gap between healthcare and art.

Sophie: Yeah, that’s so right. When I first started, I used to get loads of people going, “Oh, so what you want to do is you want to put all your work in like specialist magazines, like rehab magazines.” But I really wanted to put it out there for popular culture and have it impact loads of different people in different worlds.

One limb, the wearer said it was like a VIP badge. With the prosthetic, he got to enter a world that he otherwise hadn’t before. He got into presenting, and because the limb was high-tech looking, he was going off to all these tech conferences. It was almost not even about the arm. It was just about what the arm offered, like from a psychological to a human interest perspective. The arm was forging connections, which is what we were speaking about before. It’s that dialogue.

Grace: What’s next for the project?

Sophie: We’re looking at big sculptural pieces, public art, that are all related to limbs. It’s just making it massive and playing with scale so you can walk around inside. These would be immersive, big art pieces that say something about the topic, as well as exploring more unusual and alternatively interactive standard-sized limbs.

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Visit The Alternative Limb Project website and Instagram for more.