How I Came to Love My Bionic Hand
I Can See You #ICanSeeYou
I was born missing my left arm. And while there really isn’t anything I can’t do, it took me a long time to feel comfortable with my appearance. For a long time, it felt like an obvious inadequacy in a world saturated with an obsessive desire for perfection.
When I was born, the doctors told my parents they could fix me. I was fitted with a prosthetic device at 18 months, in order to blend in and develop “normally.”
Since medieval times there has been an obsessive interest in the development and engineering of prosthetic limbs, with each new design promising to be as capable and reliable as the human hand. One of the earliest records of a prosthetic hand was described in 77 AD by Roman scholar Pliny the Elder, he talked about how a Roman general had lost his hand during the Second Punic War and subsequently received a prosthesis, enabling him to return to battle.
But there was nothing empowering about forcing a toddler to wear a heavy and at times painful device.
To make matters worse, when I should have been able to rely on it most, it failed me in the cruelest way.
One thing a prosthetic hand can’t (yet) do is detect sensory feedback such as heat or cold. At 18 months of age, I reached up to grab a biscuit from the kitchen counter with my new hand and accidentally knocked over a pot of freshly boiled tea. Boiling water poured down onto my neck and chest, resulting in third degree burns to 15% of my body. The one thing that was supposed to make me whole nearly killed me.
After an agonizingly traumatic recovery, I began to wear a prosthesis again, a decision made by my parents and the doctors. I wore myoelectric prosthetics, where muscle activity from the remaining detected by electrodes within the prosthesis and then processed to drive battery-powered motors that move the hand.
In my lifetime, myoelectric hands have evolved from hideous claw contraptions to hands that are anatomically similar to that of the human hand. With durable materials and programmable multi-grip functions, impressive advancements in the design and development of artificial hands—such as varying grips and feeling of movement, action, and location—have been created to look like and replace what is “missing.” In the past decade, in fact, there have been many discussions about how missing limbs might no longer be seen as a disability, with innovative advanced technologies making it impossible to distinguish between an artificial limb from a real one.
This is a rhetoric I don’t agree with. I want you to see my disability. I want you to see me.
I was born into a world that wasn’t designed or created for someone like me. And I spent my entire childhood and adolescence trying to conform and fit in. I did just about anything to ease the agonizing pains of the stares, verbal taunts, and pointed fingers. I wore long sleeves, I starved myself, I did whatever I needed to do to become invisible.
By the time I was eight years old, I had no self-confidence, and the hand I was wearing was making it harder and harder for me to fit in. So I decided I was better off without one. I didn’t need anyone to fix me. Because I wasn’t broken.
After years of politely stating that I didn’t need anyone’s help (and I wasn’t going to conform or force myself to fit in any longer), I learnt how to adapt and find my own way of doing things. From tying my shoes laces to learning to drive a car, there was nothing I couldn’t do. And one of the most obvious ways for me to prove that I wasn’t going to be limited by my disability or physical appearance, was through movement. I developed a love for all sports, in particular swimming. There was a sense of freedom and exhilaration powering through the water. I was selected onto my first Australian swimming team at age 13 and successfully represented my country for 8 years, culminating in my selection onto the 2004 Paralympic team. After I retired from swimming, I was able to draw parallels from my sporting career and apply them to the work I do today as an educator and activist for disability inclusion and children’s author.
I realized I’d made a name for myself because of my disability—not in-spite of it.
I taught myself how to be comfortable in a society riddled with insecurities, and I set out to fight for the rights of people living with a disability. So when I was first contacted in 2021 by Simon Pollard, whose company, COVVI, was on a mission is to create the world’s most advanced, powerful, and robust bionic hand, I was a bit surprised. He asked me to trial the hand, and if I was comfortable with the idea, to become a patient advocate. Initially, I said no. I didn’t need it. Then curiosity got the better of me.
For the past decade, I had been observing the unwavering interest in prosthetic hands from an industry and societal perspective. While I was busy advocating for disability rights, a new generation of advocates had made incredible progress. They’d elevated the discussion in ways I’d never imagined possible.
Read More: What I Learned from the Generation of Disabled Activists Who Came After Me
In 2015, Rebekah Marine (also known as “The Bionic Model”) stunned audiences when she walked in the FTL Moda Runway show at New York Fashion Week wearing a prosthetic arm. For me, and so many others watching, it was a moment of elation and relief. At a time when the fashion industry’s ideas of beauty were being questioned and the definition of diversity challenged, Marine was making a loud statement showing that disability could also be beautiful—and people were starting to notice.
While I used my platform to talk, people like Amy Purdym and Nick Vujicic harnessed the power of technology and social media to show just how far we’ve come. Posting selfies that displayed their wheelchairs, crutches, or artificial limbs without explanation. Social media was changing the way the world saw disability. People feared disability less and were more curious. Society was shifting from the outdated medical model and beginning to see a person first, and their disability second.
Viewing disability through a social lens also meant acknowledging that a person is more disabled by their environment and the discrimination of others than their actual disability. As those conversations began to shift, I realized that perhaps there was an opportunity to use technology to steer the narrative for future generations.
In July 2022, I decided to trial the hand, and was blown away with not just the technology, but also the ease and comfort of the hand itself.
Even still, it wasn’t (and isn’t) an easy process. I am developing neural pathways; I’m making movements for the first time that most people have embedded into their muscle memory. I’m learning to pick-up utensils and how to hold a glass and actually drink from it without spilling any water.
With my ego to the side, I realized the role of patient advocate was an enormous privilege, because through sharing my journey with advanced technology, I’m able to potentially reach thousands of other people living with upper limb differences who would benefit from its extraordinary capabilities.
I wear a bionic hand not because I’m broken, but because I have an opportunity to enhance the human capabilities that already exist.
My biggest motivations are my three children. My heart shattered knowing that they would see the pains of the stares, verbal taunts, and pointed fingers because their mom only has one hand. Instead, I want them to feel proud that their mom is actively embracing what makes her different. And in doing so, I might just also help create an easier path for people living with a disability to simply feel safe and accepted by their community and society.
Now when I walk into a school , students are no longer afraid, but intrigued. They don’t ask what happened to my missing hand; they ask where my bionic hand came from.
“That’s so cool, she is half human, half robot,” shouted a student at a recent school visit.
The excitement in his voice and the excited reactions from his classmates reassure me that working on disability inclusion is the right thing to do, and having these conversations with kids is exactly where I need to be.
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