I must warn you, dear reader, right up front, that this post may be even more discombobulated than my normal ramblings. If I had to characterize most of what I write, I’d describe it as like driving with me in the pre-GPS era: I have an idea of how to get there, but it’ll probably take some extra time as I miss turns and stubbornly insist to my wife that “We’re going in the right direction!” as I navigate to my destination by the constellations.
This week’s topic really goes to the core of what I think is the greatest opportunity and challenge for the limb loss/disability community in the next 25 years. It’s about self-perception and how others perceive us. More important, it’s about self-definition. It’s one of the most interesting issues confronting people with LL/D. It’s also one of the hardest to fit into a neat package. So please bear with me – yes, I’m one of those guys who refuses to stop and ask the locals for directions, even when it’s obvious I need help – as I try and express my thoughts coherently.
In the last decade, we’ve seen a technological explosion in the world of prosthetics representing a sea change from the 30 years that preceded it. Beginning with carbon-graphite feet in the mid-90′s, continuing with the modern generation of microprocessor-controlled knees in the early 2000′s, expanding to microprocessor-controlled ankle-foot systems around 2006, and now with the dawning of powered lower-limb prosthetics and neuroprosthetics for upper extremity amputees, these devices have closed the physical functionality gap separating the “disabled” and “able-bodied” communities. (More on the implicit assumptions in this sentence later, in another parenthetical.) These new technologies have redefined how prosthetics work, and by extension, how we function.
For example, when I became an amputee 14 years ago, my first prosthetic knee consisted of a basic hydraulic unit. You set the resistance based on your normal, self-selected walking speed, and the knee performed reasonably well unless you elected to walk faster or slower than that speed. In which case, it either tended to (a) lag behind you, or (b) not bend easily (or sometimes, at all). Then microprocessor-controlled knees came along, and based upon data received from force sensors, these devices regulated knee resistance on a split-second basis. This allowed them to respond appropriately no matter how fast or slow the user walked. In addition, these knees provided increased resistance in situations where traditional knees had simply buckled, thus preventing trips and falls. Now, we’re seeing the first generation of powered lower extremity prosthetics, which in addition to having all the benefits of a standard microprocessor-controlled knee, use motors to actively lift and place the prosthetic foot on the ground, and which are powerful enough to actively lift a user out of a chair.
Equally important, as these devices have gotten more sophisticated, their look and feel has improved dramatically as well. Sleek and slick-loooking microprocessor-controlled knees supplanted mechanical ones, and large powered prosthetics (both upper and lower extremity) have given way to increasingly human-proportioned models.
In short, the technology has gotten to a point where it’s sexy, both mechanically and aesthetically. While there’s little hard data to support that statement, I have observed the following trend over the last 14 years: younger individuals with LL/D have increasingly foregone cosmetic covers that hide their prosthesis and opted instead for the cyborg approach. The cold gleam of steel and titanium have begun to supplant the traditional foam covers that (poorly) cloaked traditional prosthetics, and in many instances now, they also replace higher-end silicone skins. While this is not a universal rule – I’ve seen this less with older individuals with LL/D, for example – I do think it’s a real trend, and it’s a logical extension of living in a tech-obsessed world.
There’s a uniquely 21st Century chic to Oscar Pistorius hurtling through space and time as the self-described “Blade Runner.” Dean Kamen, perhaps the most well known modern-day inventor, made the “Luke Arm,” a reference to the hero of the (original) Star Wars trilogy. When my kids’ friends see the powered prosthetic knee that I walk on, the cultural references they bring up are Terminator and Iron Man. As the world around us becomes increasingly high-tech, as mass media remind us at every turn how much we “need” technology (iPod, anyone? iPhone, anyone? iPad anyone?), as the CGI mavens in Hollywood shower us with ever more believable depictions of people who possess technology-based superhuman abilities, we can begin to see a culture shift of epic proportions that trickles all the way down to the LL/D community.
In the last 10 years, off the top of my head, the following individuals with some type of “disability” have made it to the big screen: Daredevil (note: lack of vision not this hero’s central disability; Ben Affleck’s portrayal of him/the script was); Annakin Skywalker (slightly discomfiting to learn that the eventual Darth Vader was a bilateral AK); Iron Man (no overt physical disability, but requires miniature Arc Reactor (i.e., really complicated and super-cool technology that glows prominently in Tony Stark’s chest) to keep bomb fragments from entering his heart and killing him; Del Spooner (“Who?” you ask? The detective Will Smith portrayed in I, Robot, who has a prosthetic arm); and perhaps most interesting for this discussion, the various X-Men (led by the wheelchair-bound Xavier, featuring Wolverine, who’s an Army-created flesh-metal hybrid, and all of whom pose the following questions: what’s “normal”; why do we ostracize those we don’t understand; are people with different abilities, “mutants”?).
(Yes, I am aware that the last paragraph reveals me to be one of those awful superhero fanboys. I feel compelled to point out, however, that despite those tendencies, (1) I’m not a fan of the original Star Trek TV series; (2) all of the Star Trek movies stunk, except for the last one, which I haven’t seen but I’ve heard is very good, but will still probably never watch because it represents the crossing of a line separating mere weekend geekery from all-out, unabated, full-fledged Nerddom); and (3) the top three superhero movies ever, in my very humble opinion are: (a) Batman: The Dark Knight; (b) Iron Man; and (c) Batman Begins. The first two Spiderman movies probably round out the top five. I also continue to believe that the original (and ambitious) Hulk movie was better than everyone thought and largely misunderstood, while the more commercially-successful Edward Norton-led version was a pedestrian, formulaic effort.)
But my point (I did have a point) is this: as the technology in real-world prosthetics begins to take a form that’s vaguely identifiable with and relatable to these mass media creations, showing it off, wearing it as a badge rather than as a weakness to be hidden away, becomes a way to identify yourself as part of something new and cool. Simultaneously, it begins to blur the boundaries between traditional concepts of “able” and “disabled,” with the following consequences.
We stand on the brink of an era where prosthetic technologies, in the words of Aimee Mullins, potentially “augment” what people can do/who they are. Augment. Augmentation is not about merely improving “disabled” individuals’ quality of life so that they can be “less disabled” than they previously were; it’s not about just bringing people with LL/D onto a level playing field with able-bodied individuals; it’s about improving function beyond the capabilities of normal flesh and blood.
Mullins, who may be the central thought leader in this area, tells the story here of how one of her friends complained that it wasn’t fair that Mullins could be 5’8″ one day, and 6’1″ the next, depending on which set of legs she opted to wear. Similarly, some prominent researchers/product developers now speak freely about creating prosthetic components that will give people with LL/D capabilities exceeding those of people who have all their limbs. Indeed, some scientists maintain that this has already happened, and cite to Oscar Pistorius as an example. (The jury is still very much out as it relates to Oscar, as no one has been able to definitively document the net impact of the claimed “advantage” provided by his running feet versus the rather obvious disadvantage of Oscar missing both legs below the knee.)
Which leads to the following question: how would/will this change affect how we see/define ourselves?
the prosthetic identity
Let’s table for a second any discussion of whether an insurance company or government payer would ever countenance paying for a device that improves function beyond that of an able-bodied person. (Can you imagine the discussions the insurer’s Medical Director would be having about developing that medical policy?) If we instead focus on the question I just raised – how would you define yourself if your prosthesis augmented your ability beyond that of an able-bodied individual? – we start getting into some hoity-toity liberal arts college-level discussions about the nature of self pretty quickly, which I’ll divide into two parts.
First, my experience has been that I and many individuals with LL/D aspire to be so functional as to escape detection by our able-bodied peers. The desire is to avoid recognition because, (at least in my mind), if able-bodied people don’t see you as disabled, then you’re not. (The inverse truth, at least in my case, is that I don’t classify myself as “disabled,” so I’m hell bent on making sure others don’t as well.)
(For those of you who’ve been paying attention to everything in this post, you might say, “Hey, Dave – this contradicts your earlier statement that young amputees are rejecting cosmetics for the RoboCop effect!” True – but much of the time, we walk around wearing long pants and shirts that hide what’s underneath.)
I spoke to a group of prosthetists and orthotists this past week in New Jersey. While I disclosed at the beginning (it was relevant to the talk) that I was an above-knee amputee, several latecomers missed that admission. I stood in the front of a conference room, walking back and forth for two hours while giving my presentation. At the end, a young prosthetist who had arrived late came up to me to ask some follow up questions. In the course of that discussion, he learned that I was an amputee, and commented, “Oh my God, I had no idea.” Immediately, I noted that warm glow of self-satisfaction that comes from having escaped the “amputee” label, and having done it to someone who specializes in treating people with LL/D to boot.
How would that change if my prosthetic knee allowed me to do more than an able-bodied individual? Would the goal of escaping detection still be the pinnacle of personal achievement, or would showing the prosthesis off, aggressively flagging its existence become the goal? What if that knee were attached to an osseointegrated attachment point? Would I be telling people, “Hi, I’m Dave McGill. I’m a cyborg!”? Would you? (My expectation, by the way, is that you’d insert your own name for mine in that scenario.)
Ms. Mullins speaks passionately and with conviction about what it means to be “disabled” in a definitional sense, looking at the Webster’s Thesaurus to illustrate her point. She has a visceral reaction to that exercise that she describes with great poignancy here. I have to admit, in listening to her talk, I did not have the same response. Which leads to the unrelated-to-this-post-but-very-interesting-topic-for-future-discussion: how does growing up with limb difference (as Ms. Mullins did) affect one’s concept of self versus suffering a limb loss after the “self” has already been established (as I did)?
But getting back on point, Ms. Mullins was pointing out how limiting and out of sync with current reality the traditional concept of “disability” is. What happens when technological advances, virtually overnight, turn that concept on its head? Will people in the LL/D community identify themselves first as individuals who are missing limbs (or wearing replacement limbs) if the prosthesis became a perceived source of extraordinary power as opposed to a mere tool that helps us recapture only a portion of what’s missing/lost? And should we care? (Yes, we should.)
Second, Ms. Mullins, who’s probably a few years ahead of me in her thinking on the topic, also notes that flagging the extraordinary and embracing it, welcoming the augmentation, is better than just living in a world of “beige people.” But assuming the technology leads us to this endpoint and we (or at least some of us) in the LL/D community do publicly celebrate this new kind of physical diversity, what will the reaction of the able-bodied community be? (Hold, for a second, the reflexive, “Why should we care what others think about us?”)
In a world conditioned to see successful individuals with LL/D as “inspirational” and/or “heroic” – largely, I suspect, because of the able-bodied perception that the disabled are nobly striving to overcome the limitations thrust upon them – how will people react when they see these previously brave souls blasting by them on a track or regularly accomplishing things physically that people with all their limbs cannot?
We see enormous divisions between people today in the United States over much less. When technology breaks down the barrier that has separated the able from the disabled, and permits the latter group to surpass the former in certain ways, will we see everyone embrace the new diversity, or will we see a more reactionary, lowest-common-denominator response? (See my X-Men reference, above. Yes, you can actually learn something from comic books.) Is it “heroic” or “inspirational” when technology gives you the “advantage?” Based on the charges of technological cheating that have already accompanied Oscar Pistorius’ success, I’m inclined to be a bit cynical about people’s ability to integrate these “newly capable” individuals into the prevailing world view.
I believe that people with LL/D will increasingly identify themselves by the technology that augments our abilities. We will embrace the mashup of flesh and machine that we have become. And to the extent that this results in an expanded sense of possibility, to the extent it eliminates limiting concepts of self in the LL/D community, that’s a great thing.
But I’m less certain about how the rest of the world will see that evolution. Today, many of the most important faces in the LL/D community are those athletes – the Oscars, the Sarahs, the Rudys and Scouts – who stand out for what they’ve achieved physically. But here’s the great irony: as prosthetic technology advances to a point where the physical gap between able-bodied and disabled may be not only reduced, but in fact, inverted, we’re going to need a new generation of LL/D leaders. Leaders who lead less by what they do physically, and more by how they work to bridge the suddenly new and unfamiliar “us v. them” divide that these inevitable technological advances may create.