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“Is Everyone Looking at Me?” Upper Limb Differences and Public Perception

Amber Henson
by Amber Henson
Mar 19, 2024

“Beauty is in the eye of the beholder” is an oft-quoted line from the book Molly Bawn. This concept, that looks are a matter of opinion, is aptly applied to upper limb differences. It’s not just how someone feels about their upper limb difference — it’s also about how they think other people perceive them.

While all limb differences can make someone self-conscious, upper limb differences are especially visible. From our article “Five Keys to Understanding the Emotional Impact of Upper Limb Loss” written by Dr. Suzy Phelps, clinical psychologist:

“Most people with lower limb loss can wear a pair of long pants, and their limb difference or prosthesis becomes invisible to others. But if you lose part of an upper limb, you can’t just cover it up. In fact, you may be the object of unwanted attention and questions from strangers. It definitely takes time to get used to the fact that your body image has changed.”

How a prosthesis fits in with this body image is different for each patient. When first choosing a prosthetic device, one must consider what the purpose is. Do they want to look like an average person, with two sound arms and hands? If so, a passive silicone restoration might be the way to go. Do they want function above all else? Body-powered devices can allow the user to perform many of the tasks that a human hand can do. What if the patient is drawn to a cool, bionic look? Many myoelectric devices offer a sleek, robotic design.

We’ve had many patients who start out with one prosthesis, only to find with time that something else may work better for them, either in terms of looks or function. For many of our patients, their relationship with their prosthesis seems to be something of a journey. That journey is as unique as the patient themselves.

Take our patient Tom. As a teenager, he lost his hand in a wakeboarding accident. At first, our Portland center fit Tom with a single-motor myoelectric hand. As Tom told us later about his first prosthesis, “The main thing I was looking for was that I wanted it to look like a hand. I wanted to have it so if I wore a long-sleeved shirt, it would cover it up, and I wasn’t getting a lot of questions from people.” But after six years, Tom’s feelings regarding his limb difference and his prosthesis changed. “Now the hand I wear is completely different. It’s a lot more of embracing that robotic look — not being shy of it. Showing people, yeah, I do have a prosthesis.” Tom has both an iLimb Quantum (in the photo below on the right) and a TASKA hand, which are multi-articulating myoelectric terminal devices.

tom_seibert-1

Our patient Abram’s journey was in the opposite direction. Abram was not concerned about looks — his goal was function. As a maintenance technician for a milling company, Abram’s goal was to return to work. He was fit with a body-powered hook, and two myoelectric devices, an ETD and a TASKA hand. These are some of the toughest devices out there, and Abram would need them for work and his hobby of customizing 4x4s. But along the way, something Abram didn’t expect happened: other people. Whenever Abe would travel (for instance, from his home in Tennessee to our Dallas center for his specialized care), he would wear his TASKA hand and he would get stopped in the airport. His device was just too cool — people wanted to ask him about it. “When you go through the airport with your TASKA hand, everyone wants to talk to you. And once you tell your story so many times, you’re just, eh — you don’t want to all the time. I just want to be able to blend in with a crowd.” The airport wasn’t the only place Abram was stopped. “My wife and I went out to dinner for our anniversary and this woman there was so excited about my arm and the technology, and wanted to ask about my accident, that she actually sat down in the booth with us. And we were nice, but it was like, we just wanted to have a nice meal, and we didn’t get to have a dinner together. She ended up watching us eat.” Abe’s solution was to request a passive silicone restoration that mimics the appearance of a human hand. “At the beginning of this journey, I did not want a passive device. I was against it. But here we are.” When Abram wants to go out in public, he dons the passive device (on the right in the photo below) to feel more at ease.

abe_baker-1

The center patient coordinator at our Minneapolis center, Cindy, had a story about a patient she had gotten to know well. “We had a woman come in who had her finger amputated and was absolutely devastated. She wanted to get a passive silicone restoration finger that looked exactly like the one she’d lost. She couldn’t help but think that everyone she passed was looking at her hand.” Cindy continued: “Her silicone finger looked great — but then she gave us a call a few weeks later: ‘Cindy! I lost my finger! It slid off!’ Don’t worry, she found it. This patient had been at a wedding when it came off.” But when she came in to get it adjusted, the patient decided she wanted to go with a Naked Prosthetics device instead, “In purple. She got over the need to fit in and was like, ‘You know, this is me. This is it.’”

Again, each patient’s approach to their prosthesis and how they feel about it is unique. We’ve talked with a patient who worried that their device would scare children, and another patient who said that kids flock to him to learn more about his multi-articulating myoelectric device. We have several patients with congenital limb difference, including Angel (on the left in the photo below) and Shaholly (right), who have no interest in trying to replicate the look of a sound hand and prefer that sleek, bionic look.

angel-shaholly-1

It’s easy to say “Well, just don’t worry about what other people think.” But that’s naïve — nearly everyone has at least a small voice in their head that is concerned with other people’s opinions of them. The good news is that things are changing. There’s less stigma surrounding differences and more and more people know not to comment on someone else’s body — either in a positive or negative way. It still happens, though. Our patient Isaiah, pictured below: “It doesn’t happen in the winter here in Portland, but in the summer, I get asked about my device [a TASKA hand] constantly, eight or nine times a day, just going out and getting groceries or running errands. People think it’s really cool. People don’t really ask me about my activity-specific device at the gym, everyone’s doing their own thing — but my myoelectric, that’s what they want to know about. And they want to know how my accident happened. If I have time, I’ll give them the rundown — if I don’t, I’ll just tell them, ‘Next time.’ I don’t mind — people are curious. They’ve never seen one.”

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That’s a lot of what it comes down to — if more representation existed, not only would people ask less questions, but people with a limb difference might feel differently about needing to blend in.

While each of the above patients were fortunate enough to have insurance coverage or the means to obtain more than one device, not everyone is. This limitation of being able to get multiple devices can make the journey after amputation that much harder. All of these patients needed the freedom to come to terms with their amputation and learn about what is needed for them to be able to function and thrive over the many years they require prostheses. If you or someone you know is considering a second device, but you’re not sure if it’s possible, please speak with your prosthetist or contact us — we have helped many of our patients appeal for a second or even third device when the need was there.

If you are at the start of your amputation journey, just remember that it really is a lifelong journey. If you are someone with a congenital limb difference considering a prosthesis, keep in mind that options have expanded greatly even in just the past few years. As has public perception.

We’re not at the Luke Skywalker level of technology yet, where a fully functioning hand also looks like a sound hand. Even when we do get there, there may be plenty of people who aren’t interested in looking just like everyone else. Many people enjoy embracing what makes them different. They are their own beholder.

To learn more about prosthetic options, the holistic prosthetic care each of our Arm Dynamics centers offers and how we help our patients over the years of their prosthetic journey, please contact us. If you have a comment regarding this article, please leave it below.

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