Chloe Toscano personalized her prosthetic arm with sparkle butterflies
A lot of people in my life initially understood this to be a horror. But it has been about nine months since I woke up in a hospital — both hazy and elated that it was gone.
I immediately changed into my Lady Gaga tee that appropriately read “Born This Way,” and I realized I had a dynamite opportunity before me. I was going to get a prosthesis, and it would be an extension of my most genuine, supersonic self.
As an Italian, I speak with my hands even when dreaming. So I wanted full mobility of all of my limbs, even if that meant having only a “lucky fin” to communicate my left hand’s passion in conversation. And for the times where I would want an extra hand to hold something or an elbow to place on the table despite my grandmother’s advice not to, I wanted a really freaking cool prosthetic arm.
I’ve been operating with one arm since long before it was removed. Opening a Tupperware with one hand at this point feels more natural than if I were to get a second hand involved. And because there’s no prosthetic arm that beats a real arm, I wanted something I could wear as an accessory that would also enable me to do the few activities I otherwise can’t do, such as lifting weights, kayaking, holding two ice cream cones, using those self-serve fro-yo machines or carrying large pizza boxes — the latter being a priority.
I didn’t want a so-called natural-looking limb, so getting it right involved a lot of design research. Googling “Sailor Moon glitter holographic Infinity Gauntlet” led me nowhere, but further searches revealed a concept called uncanny valley, which is the idea that people feel more uneasy if they are looking at a human-looking artificial limb than if the limb is more robotic-looking. I stumbled across a 2013 study by the University of Manchester in England that detailed this idea, which I initially thought was biased.
But then I recalled my unease when I picked up the hand my prosthetist had brought out to match my existing limb. It was tinged with the slightest hue of green and didn’t quite match my skin tone. The exterior of the hand had artificial wrinkles over the knuckles, though the palm revealed a flawless surface devoid of lines. I knew it was far from what I wanted.
It was time to seize the opportunity to create the superhero arm I wasn’t born with but could design. I knew I wanted it to look like something Iron Man Tony Stark might have created. In my head, that aesthetic was a butterfly-clad hybrid between Thanos’s gauntlet and anything Gaga would be caught wearing — sans meat.
I wanted to ensure every bit of my arm would be personalized with intention. It’s body-powered, meaning it’s powered using movement from my opposite shoulder. But for me, it was very much about the visual effect, because I don’t feel hugely more functional with a prosthetic arm. It’s not that it isn’t good, but I’m very efficient as is.
I got to pick out the socket fabric (the upper part where my residual limb goes), so I spent hours in February drowning in fabric looking for the perfect one at Mood Fabrics. “Project Runway” fans are probably familiar with this store, nestled in New York’s Garment District, that has a selection that spans the third story of its building.
I teetered down every aisle, grabbing a spool of each fabric that spoke to me until I was holding a stack so high I could no longer see where I was going. A danger to anyone in my path, I thought I would call it a day, but then suddenly I spotted my butterflies — large, laced with purple wings that took flight on a silky pink fabric.
The final result, which was completed in August, included a black holographic forearm drizzled with minuscule pink sparkle butterflies to match the socket. The butterfly fabric was encased in a clear resin, molded to fit my socket, and lined with custom neon purple silicone I picked out to match the wings.
Then, nodding to the grunge fairycore aesthetic I was after, I asked for a black silicone glove to go over the original hand.
It was exactly what I hoped for. After six years of loathing my useless arm, I began to love it. When I put on my decorated, attention-seeking prosthesis, I’m telling everyone to look. I want them to.
I want my new arm to remind people that although it’s rude to stare, it’s okay to notice. It’s okay to see me as I see myself.
Scraping the manual on what a limb is “supposed” to look like doesn’t just negate the stigma coming from non-amputees. It’s empowering for the wearer.
Zach Harvey, a prosthetist and orthotist based out of Hanger Clinic in Englewood, Colo. — who joined the team that built my arm — told me that he sees a greater sense of pride and willingness to wear devices from patients who are active in the design process. Advocating for a design unique to the wearer empowers amputees to accept their artificial limbs as their own, he said. I took this to heart.
Going highly stylized like I did isn’t necessarily the key to feeling confident for everyone. Some may choose to go with something fleshlike and less noticeable, which means just as much. The big step is knowing it’s more than okay to go with something that you know will turn heads.
There are efforts such as the Alternative Limb Project that combine elements of design, integrating humans, robots and art. One of the limb recipients is an amputee gamer named James Young. Leaving testimony on the project’s site, Young wrote about a line he had once read that said, “I want to take off my limb and leave it in a room, and people will recognise it and know that belongs to me. It reflects part of my personality.” He continued: “All parts of our bodies can be recognized as being ours by our unique DNA, so why not add a personal stamp to our artificial limbs.”
Indeed. Should my left prosthetic arm ever be severed, I know that the unfortunate soul stumbling upon it won’t need a fingerprint to recognize the limb as being mine. The other day, I told my doorman I had come back down to pick up the large parcel I had gotten once I had “two free hands.” He probably assumed I was either never coming back down or trying to tell him I was a lizard. But I came back down with two arms — one I was born with and one I created — both of which were equally as much my own.
Chloé Valentine Toscano’s writing has appeared on NBC, HuffPost, Them, Allure, Salon, Nylon, Wired and more. More of her work can be found on her website and on Instagram.