Last year I met a beautiful five-year-old child, who had been born with neurofibramatosis (NF), causing her left leg to have extremely brittle bones.
For nearly the first year of her life, her parents and doctors were unaware of the NF, and the brittleness had contributed to multiple bone fractures of the lower leg, unbeknownst to anyone. These early bone breaks resulted in her left leg being 7cm shorter than the other, and as a bright, precocious and athletic child, she adapted to her leg imbalance incredibly well. I felt like I could have been looking at myself as a five-year-old. Unlike me, however, who didn’t have a clue about an aesthetic style in outward appearance until university, she already had been bitten by the fashion bug, and was particularly excited by the prospect of a new holiday dress or her first-day-of-school outfit. Her source of distress lay in the fact that the vast majority of little girls’ shoes were off-limits for her, as there were only a few companies that made shoes that could be adapted with a special lift to even out her walking planes. These shoes had to work within the structure of the external leg brace she grew up wearing.
Her parents were impressive in their own right, first by not imposing labels or limits on her, and then making this medical journey of decisions for their child a collaborative process that included her, appraising her of new options in technology that had arisen as they became aware of them. Unfortunately, technology in her case — a successive series of operations to try and stretch the brittle leg using internal rods and pins to fuse the bone — hadn’t progressed as fast they would have hoped. After the first two of what they knew would be many surgeries, her parents and doctors had made the decision to proceed with this rod approach until she reached the age of five. Then they would re-evaluate the process, considering any advancements in technology. If it hadn’t advanced past this type of treatment, they would consider “other options”.
Shortly after her sixth birthday, her mother told me, “She downloaded all these images of you off of the internet, and she’s always asking ‘When, when can I get rid of my bad leg, when can I get a new leg?'” She even did her show-and-tell at school about prosthetics!
That is decidedly not what I would have expected a six-year-old to do.
Amazingly, because of technological progress in prosthetics, amputation was now an attractive option for this family. Amputation and subsequent fittings with prosthetics was simply seen as liberation from a leg that didn’t function.
After a few months, the child’s mother called me, telling me that she, her spouse and the doctors collectively made the decision to amputate, and that they would be telling the child this news that very night. My reaction was visceral and very surprising to me: I felt my breath grow short and my heart pounded, and I felt ill as waves of stress and worry pummelled me. I panicked at what role I might have played in this chain of events, and how I couldn’t guarantee that this child would have anywhere near the same experiences I had had as an amputee? I found myself having doubts I had never had about myself or, indeed, most any amputee: “Would she be OK? Would her life be happy and full of opportunity?”
I spoke to the mother one last time before the surgery, and she informed me of the surgeon’s decision to do an amputation through the ankle, the common thinking to be to “save as much of the flesh and bone leg” as possible. I couldn’t be sure about this and hesitated even mentioning it, but I asked the mother if she had consulted with the child’s would-be prosthetist about this “Syme’s” style amputation, because I had heard reports of resulting limitations in people being able to obtain the latest prosthetic technology.
Ironically, by keeping more of the residual limb, you negate more options for different prosthetics, as there is no physical room to put the components (think of the shock absorber and spring leg). An incredible facet of this story for me was learning that, at no time before this rather momentous surgery of this child, did the paediatric surgeon and the prosthetist ever have even one conversation.
Her mother investigated with the prosthetist who confirmed that, by leaving as much of the limb as possible, the child wouldn’t be able to get any of the legs in the images she downloaded from the web. The surgeon was shocked to learn this. He had never considered that it might actually be better to amputate a few inches higher, increasing the future mobility options of the child.
This past April, while walking through a street fair hosted by the Tribeca Film Festival, I felt a tug on my shirt. It was this little girl, six months after her amputation, with coloured paints on her face and in her hair, and a plastic tee-ball bat in her hand. She was jumping up and down (post–fairy floss) and she wanted to show me her new High School Musical 3 “tattooed” leg. She asked me if I knew Zac Efron and “could I get him to autograph her leg?” (I don’t, but I’m working on hooking this up.)
She pulled me a few metres over to the batting cage stand, where she deftly used her prosthetic leg to press the foot pedal, launching a whiffle ball pitch that she smacked as hard as she could. On her feet, she proudly sported dress shoes covered with red sequins. Seven months ago, she was as active as a child could be with a leg brace and tremendous pain; here, she ran and jumped and cartwheeled and tackled her little brother, who tackled her back. Even I, who rarely doubts the incredible ability of human beings to adapt to their adversity, was awe-struck.
I wondered how her childhood, her adolescence, her adult years would collude to shape how she saw herself. Would she struggle through various identities, wanting to be “normal” as I did, only to find eventual freedom of self-expression in the absence of normalcy? Barring puberty, which is probably awful for everyone, I think this girl is going to skip over ever wanting to be “normal”. Why be normal when you can have Zac Efron and Friends staring up at you every day from your ankle?
The generation of children growing up today has a distinct advantage in this realm of identity, thanks to their daily interaction with the internet and video games. It’s commonplace for them to create avatars and parallel representations of themselves, and they see their ability to change, transform and augment those bodies to best suit their surroundings as beneficial.
That kind of fluid thinking was once solely the domain of those whose imaginations were heavily influenced by both technology and science fiction. Talk about seeing evolution speed up before your eyes. My being able to embrace the art in my artifice, to change my identities — how I perceive myself and how others respond to that perception — has profoundly changed the way I see the world and my opportunities in it. But I didn’t possess that ability at age six.
I keep thinking of how long it takes for most of us to go through the process of first accepting ourselves as we are, strengths and weaknesses, then celebrating that self and starting to have fun with your strengths and weaknesses, then transforming ourselves as architects of our own identities, redefining what our strengths and weaknesses actually are. I think kids today are able to do this faster than previous generations.
I’ve noticed a progression from how kids used to respond to my wooden legs to responses toward a prosthetic limb today. Quite simply, the fear-at-first-response has all but disappeared; I do not experience children who are afraid to meet me and in fact, I haven’t recently met any child who, when I’m sporting obvious prosthetics like the RoboCop legs, wasn’t drawn like a magnet to me, accompanied by a list of very astute questions.
For the most part, it’s adults who rein kids in, in an attempt to not have them stare or offend with their natural curiosity.
But curiosity is necessary; it is the foundation of imagination and innovation. It’s tremendously important to allow children to see the diversities of human experience and understand how their own lives relate to it, so we can acknowledge how much more similar we are as human beings than different… even if what makes us different is where we discover and engage our rare and valuable qualities, offering them to society.
When I was a child, I watched plenty of episodes of Star Trek: The Next Generation. Where some see Professor Xavier, I secretly know he’s Captain Jean-Luc Picard. And thanks to airport security, I admit that I often daydream of being able to molecularly transport around the world. I think about that other little girl and wonder to what extent her ability — and that of her peers — to Google the word “prosthetic” and come up with tons of imagery to inspire their imaginations marks a marvellous shift in our society.
There’s plenty of evidence that connects our visualisation of what we dream to be possible to what we eventually create as a new reality. Gene Rodenberry’s imagination in Star Trek and that of Arthur Clarke’s, Marvin Minsky’s and Stanley Kubrick’s in 2001: A Space Odyssey had a direct impact on funding certain projects at NASA because scientists and researchers had “seen” this whole imaginary world, and they sought to make it real.
For my own childhood inspiration, I had the Bionic Woman and Six Million Dollar Man (to this day, the sombre phrase “we can rebuild him” makes my heart pound wildly!), and even Inspector Gadget cartoons made me draw third grade pictures of legs with rocket jet packs flaming from the heels.
This “entertainment” not only asks questions but encourages more of them, replete with inherent timelines for answers: “When are we going to do molecular transport? We’ve been seeing it for 40 years on Star Trek!” It’s within the scope of our imagination.
I remember in high school seeing Forrest Gump when they convincingly transformed Lt. Dan — Gary Sinise, an actor with two flesh and bone leg s— into an amputee. A budding actress, I thought “Oh my God, if they can do this with CGI, couldn’t they do the opposite? Could they create an image of me on screen with full flesh and bone legs?” I was intrigued by the imaginary visual of a different version of myself, and I suspect it provided something tangible when asked if now, at this point in my life, I would trade my prosthetics for flesh and bone legs. (I wouldn’t.)
The transformative power of films lay in engaging how I imagined myself and my “realities”, giving me licence to re-imagine them as I desire. Now that many people, starting from an early age, are creating and choosing their own identities in a virtual world — or in multiple virtual worlds — this self-malleable perspective has a lot of power. People can align themselves with global groups of their own choosing, and see themselves as their ideal selves without many of the social constraints present just a generation ago.
Although it took surviving high-school, I evolved myself to the point where I decided against measuring myself to “normalcy”, deciding instead to self-determine what was cool, who was cool, and the transformation subsequently happened in how other people treated me. “Cogito, ergo sum.” It’s one of the simplest truths we revealed for ourselves, right? “I think, therefore I am.” If you think you can pull it off, you can. Or as Henry Ford put it, “Whether you think you ‘can’ or you think you ‘can’t’: either way, you’re right.”
I’d postulate that technology is innately teaching today’s children that very same lesson, and they’re learning it much earlier.
This confident perspective, one perpetually shifting from imagination to invention — be it a personality, a human figure or a new technology — would not have happened a hundred years ago. If I had been born back then, I doubt I would have been enabled by society to do much, even with a self-ignited fire of human spirit, as being a woman was as much of a disability as anything.
Today, I’m grateful for all of my strengths and weaknesses, changing and morphing as they are, and I’m especially grateful for technology’s advancements to prosthetics, as my life has been successful because of having had them, not in spite of having had them.
CREMASTER 3, 2002
©2002 Matthew Barney
Photo: Chris Winget
Courtesy Gladstone Gallery]