About corn, fancy arms, and the narratives imposed upon me.
About a year and half out from my amputation, I visited my local grocery store. I was looking at ears of corn, peeling back the husk a little to see if the corn inside was a winner.
Someone sidled up to me, and leaned in. “You’re such an inspiration,” she said, as if in awe.
Being persnickety about choosing one’s ear of corn is not a feat upon which to comment!
I focused more deeply on picking out corn at this point. “I’m just picking out corn,” I replied, trying not to encourage her or confirm what she expected. I stood in one spot.
This stranger proceeded to insist that I was such an inspiration to overcome my problem, that I was brave to be wearing shorts in public. I told her I was just shopping for corn.
She told me that I probably helped other people — that I probably really inspired other people like me become more confident since a lot of people wouldn’t be comfortable like I was.
I was growing more uncomfortable by the moment.
She asked what happened to me, to make me like I am. She said she understood because she’s a nurse.
But she didn’t understand at all.
Since it wasn’t the first time I’ve had this conversation, I tried my best to be polite and still not encourage her. But nothing I was doing was, in any way, inspirational.
Stella Young said it best in her TEDx Talk: “I’m not your inspiration.”
I became an amputee five years ago due to cancer, and, since that time, I’ve been inundated by and become hyper-aware of the ways in which prosthetic technologies aimed at amputees are treated in the mass media — which is to say that I’m sick of being told how things are going to change my life.
I’m told prosthetics will help me “inspire” others to “overcome” their own differences. I am no foe of change, nor of new technologies, but I grow weary of the increasingly hyped story of redemption and overcoming one’s body that is presented about technologies for disabled people. The stories come from news outlets and social media. With social media, we see the sharing viral stories about technological redemption for disabled people, especially where exoskeletons and prostheses are involved. These new technologies can be inventive and helpful, but they gloss over actual user experiences and desires.
Take, for instance, this widely-shared BBC interview about a new bionic device for arm amputees titled “First prosthetic limb designed for women: ‘I feel liberated.’” In this interview, which highlights the quote “I feel liberated” in its very headline, the reporter tries to get a new bionic arm user to talk about the arm as transformative and important in her life. The quote about feeling liberated actually is about the use of a bicycle in conjunction with the arm, not about using the arm alone, but it has been taken out of context to promote the clip. Nicky Ashwell, the arm amputee interviewed here, talks about why she stopped using a prosthesis when she was 12 years old, and then talks about how the arm is useful for some tasks. She finds its use rewarding, and it has changed “little things she has to do day-to-day.” Things like tying her shoes have become less tricky.
The “bebionic” prosthetic arm featured on Ashwell, which was designed for women (which is a big deal because so many prosthetic technologies take into account male bodies and then get adapted, poorly, for women), looks really cool and seems to help with many things, but this sort of device doesn’t help anyone “overcome” their bodies (they adapt, sometimes with a tool), nor does it “transform” their lives in the dramatic fashion media suggests. Prostheses are useful tools that can help with a myriad of mundane tasks. Hopefully, they are useful enough to be worth wearing. Many single arm amputees forgo prostheses because they aren’t worth the awkwardness with weight and movement, and they often fail to provide the level of functionality an amputee might want.
Often, too, arm amputees use prostheses to make other people more comfortable rather than using them for their own benefit. Wearing a cosmetic arm can lessen the burden of being stared at or recognized for being different. Rosemarie Garland-Thomson, in her book Staring: How We Look (2009), refers to this process: “A mechanical hand answers the needs of its wearer, whereas a cosmetic hand answer the needs of its starer.”
Narratives presented in media about overcoming the “terrible burden” of disability through technology often get it wrong. Prosthetic devices are just that: devices that can help us do lots of things, but they don’t solve all problems, many of which come from the attitudes of other people and the inflexibility of others in thinking about how to accomplish tasks. It’s hard to be stared at all the time, and tiring to explain “what’s wrong” with one’s body all the time.
Jen Lee Reeves, blogger of “Born Just Right,” discusses the media coverage of 3D printed hands for kids and the experience of her daughter (who was born without a left hand). She writes, “As a mom who is the parent of a prosthetic-wearing limb-different child, I know the reality. There are moments in my daughter’s life when prosthetics are very cool…. Upper limb prosthetics don’t change everything. They provide tools that can be helpful at times. I know there are times when I have felt an emotional connection to Jordan wearing prosthetics. We’ve had moments when she did something awesome she couldn’t do without her helper arm and it has brought me to tears. But those are moments…. I guess you could say they changed Jordan’s life. But prosthetics don’t make everything perfect.”
Reeves goes on to reflect on how new parents finding out about their limb-different child might get the wrong message from feel-good news stories about the power of prosthetics; in her experience, prosthetic arms are “a useful tool,” not a fix. (Reeves’ daughter Jordan has gone on, now as a young teenager, to create her own arm, and one with a particular function that she wanted and many designers would not have considered: it is used to spray glitter. The arm is called “Project Unicorn.” When people can determine the meaning and joy of their own bodies, there is much more room for creativity and play.)
Prosthetic legs perhaps do more to “transform” people’s lives, given the level of mobility they can provide once mastered and fit correctly (if mastered and if fit correctly). Mastery and fit, of course, require skilled prosthetists, time, good therapy, good healing and balance and advice; these aren’t easy for a lot of leg amputees, depending on the level of amputation (how high up the leg) and other health issues. I’m often much more excited to hear about a person’s experience with their prosthetist, rather than a new technology, because the prosthetist’s ability, willingness to listen, and knowledge can be so important to getting a leg that can serve you well, much more than a new technology might.
I count on my fake leg every day and am lucky to have the support of a skilled prosthetist. However, each improvement to prosthetic feet and prosthetic joints and materials doesn’t transform my life, nor those of other amputees. And this certainly doesn’t happen all at once — the role of materials and maintenance and incremental change make a difference. And, often, the exciting technologies picked up in news stories or featured in TED talks do little to help out the vast majority of amputees.
Furthermore, these changes to individual lives may never happen without appropriate infrastructure or access in healthcare. The 3D printing of arms, often given good coverage as tech-for-good, is not a solution to a medical system that often denies what it should cover (as many arm prostheses are not or are only partially covered.). As in the case of a high school robotics team making a wheelchair for a Minnesota two year old when insurance wouldn’t cover it, what seems like a feel-good story is only feel-good in the context of a terribly broken healthcare system: these measures shouldn’t be necessary for people to be cared for. And people often end up in tricky situations when maintenance is needed for devices acquired outside of the system.
If anything, being an amputee forces me to think more creatively about how to get around, helps me appreciate differences of all sorts, and enriches my awareness of my environment, infrastructure, and culture. Mallory Kay Nelson, Bethany Stevens, and I write, “… the assumptions about our bodies is that they are bad bodies to have, and that our psyches are impacted by having such bodies. But we don’t think about our bodies as bad: we have come to know and love them.”
Disabled people generally don’t lead tragic lives, despite what our culture tells us. My simple search for the right cob of corn is in no way inspiring. Many disabled people, amputees included, have good lives, and many of the barriers to our normalcy and inclusion are matters of social stigmas and poor accessibility planning, rather than ones “solved” with technologies donned by individuals. This dominant cultural narrative about overcoming, about disability as burden, and about disabled-technologized bodies as inspirational makes it harder, not easier, for disabled people to be included in social life, to adapt to newly acquired disability, and to accept and adapt new ways of doing things. We don’t need redemption; we need better narratives.
This material is based upon work supported by the National Science Foundation under Award No. 1750260. Any opinions, findings, and conclusions or recommendations expressed in this material are those of the author and do not necessarily reflect the views of the National Science Foundation.