how we’re seen


I threatened to do this a while back. In June, I tweeted the following query: how many articles about amputees feature the word “inspiring”? “Far too many,” I guessed. But I didn’t have the time then to perform the necessary research to validate my supposition.

But this fine summer weekend, the Fates (and my empty Sunday schedule) permitted me to lose myself in the Googleverse so that I could report back to you about the answer to that question. In addition, I was able to perform some additional analysis showing that what we read about isn’t necessarily an accurate reflection of the amputee population as a whole.

methodology

Google News was the tool I used to perform the research. I entered the term, “prosthetic” and filtered the results to include only news stories published in the last month. My goal was to review 100 articles.

I excluded a large number of stories for the following reasons: (1) they focused on amputees in other countries (sorry international readers – but this is a bit of a cultural study, so I couldn’t have other nations skewing the results; nothing personal); (2) they were duplicative (e.g., the 524 articles about the turtle that now has a wheel instead of a leg. Folks, is a turtle with a wheel really that interesting?); (3) stories about the metal record label “Prosthetic Records” aren’t about amputees; (4) stories about Lady Gaga and Hollywood makeup artists aren’t about amputees; (5) stories about dental implants and internal joint replacements aren’t about amputees; (5) stories about the woman who is attempting to get the public to donate her $15,000 so that she can buy a prosthetic eye that is also a camera isn’t about an amputee; and (6) press releases/promotional materials are not “news” within the meaning of this analysis.

I recorded information on the first 100 articles that fell outside these exclusionary criteria. If you’re interested, applying these criteria forced me to read through 43 pages of Google results to get to 100 articles. Additionally, if you want to punch holes in my conclusions at the end of this post, I will freely acknowledge that 100 articles in the course of one 30-day period is a small sample size. I get it, ok? I did read Moneyball, after all.

Now for the analysis. I divided the 100 articles into “content types,” leading to the creation of four groups:

  1. “negative” articles. These are stories about  criminals who happen to wear prosthetics and amputees who have died in horrible ways.
  2. “neutral” articles. These provide objective, factual information about people with limb loss without crossing over into the land of . . .
  3. “inspirational” articles. These stories uncritically lionize their subjects and the basic takeaway of all of them is that “amputees are just so amazing, you know? Aren’t they remarkable? They make me feel guilty complaining about my aching joints, because I still have my arms and legs while they . . . they [choke back sob, wipe eyes and abruptly leave table complaining of allergies.”]
  4. “animal” articles. See the damn Wheel Turtle, above. Honest to God, the press’s fascination with dolphins, horses, dogs, and turtles that wear prosthetics just eludes me. I like animals as much as the next guy, but still.

Lastly, I also chose to go one layer deeper, separating the subjects of each article by cause of amputation, resulting in the following four groups.

  1. trauma;
  2. congenital anomaly;
  3. illness (e.g., cancer/meningitis); and
  4. diabetes.

What does this all show us? Let’s take a look, shall we?content type analysis

“Negative” articles accounted for 6% of the total. The most noteworthy of these results were stories about my two favorite amputee criminals.

The first, a fine young man from Northern California, was sentenced to 16 months in prison for attempting to lose police in a high-speed chase. At some point as he traveled 100+ mph, this future MENSA member decided that throwing his prosthetic leg out the window to try and slow down the cop cars made sense. Because, you know, throwing a prosthesis at a cop car is exactly the same as throwing a live grenade at it.

In addition, this upstanding guy apparently never considered the fact that he might need his leg in order to flee the police on foot at some point. Nor did he foresee that a one-legged guy hopping around – assuming he did escape – might attract attention when the cops put out an APB for, you guessed it, a one-legged guy. Suffice it to say, the high-speed-leg-tosser hadn’t thoroughly thought through his options when he made his decision.

But competing with this gentleman for dumbest amputee criminal is the guy in Texas who tried to hide cocaine in his prosthesis. Now, hiding drugs in a prosthesis isn’t actually a bad idea, criminally speaking. However, doing that and hoping to avoid detection by driving 50 mph (?!?) in the left lane (?!?!?!) of an interstate rivals our prosthetic-tossing friend in misguided ingenuity.

Imagine driving the interstate in Texas. You’re doing 75-80 in the passing lane along with everyone else. Suddenly, you slam on your breaks as you see the red lights of the car in front of you go on at the same time as its rear bumper rises violently upward from a violent reduction in speed. Everyone in your lane starts looking to move to the right, and seconds later, now in the middle lane, you fly past some idiot driving 50. You send him a one fingered salute and lean on the horn as you go by, thankful that you narrowly avoided putting your car into the front seat of his.

Dude – you want to drive at a moderate speed while stashing drugs on your person, be my guest. But you couldn’t figure out to do it two lanes to your right?

I’m thrilled that these guys live active, exciting lives – much more active and exciting than most people with limb loss/difference, now that I think about it. But I’m angry at them because they give us a bad name from a mental competency perspective. All you amputee criminals are on notice: we expect more from you on the brainstorming/planning end in the future.

Next we turn to neutral stories, which account for 24% of the results. There’s not much to say about these stories because they’re, well, neutral. But my personal favorite is the Billboard piece on Mountain guitarist Leslie West, who recently lost his leg to diabetes. It’s really a story about the release of his pending album that also touches briefly on his amputation. However, the story has the bluntly honest tagline, “I Cried A Couple F–k’n Times.” Kudos to Billboard for the expletive-centric title.

That brings us to the mother lode – inspirational stories. Egad. 63%. Apparently, we people with LL/D just ooze inspiration. The able-bodied who read about us shake their heads in amazement, print out the articles, and hang them on their walls to remind themselves how lucky they are not to be us. The phrase “indomitability of the human spirit” involuntarily emanates from their mouths as they read the inspirational wallpaper they’ve taped over the light switch. I’m surprised that the public doesn’t fall over itself trying just to touch us as we limp on by, hoping that the tiniest bit of our inspirational mojo rubs off on them.

Putting aside my considerable cynicism for a second, there’s a reason so many articles fall into this camp. To beat a drum pounded on many times before in these hallowed blog halls, “it’s the story, stupid.”

The narrative around limb loss – especially the types of limb loss typically written about in the press – is compelling. You’ve got it all – lawnmowers v. kids, cars v. pedestrians, trucks v. cyclists, jet skis v. swimmers, cancer v. anyone – it’s a nightmare list that’s as compelling as a car crash outside your house: you have to run outside and watch the whole damn thing.

I’m torn. Frankly, if I never read another “amazing” story about someone succeeding despite having less than a full complement of limbs, it’ll be too soon. (This is the reason I can’t read books about other people with limb loss. I feel like when you’ve read one you’ve read them all. It’s like Law & Order – individual stories are more or less compelling, but the basic structure and arc of every one is identical.)

On the other hand, as the proponent of the power of narrative, I can’t dismiss these stories out of hand. Fact is, as I slogged through the 100 articles, I could tell you the stories of about 50 people off the top of my head because the narratives are undeniably memorable.

After getting our dose of daily inspiration, we read about a unique subset of that broad category: animals and prosthetics, which account for 7% of the total. (Though when that dolphin movie comes out in a few months I’m going to see so many animals-that-wear-prosthetics articles that I’ll need to move to Botswana and wander the Kalahari Desert to escape. It may be worth it – kayak.com has flights going to Botswana for only $1,964.)

I’ve commented on this already earlier. I just don’t get it. I swear to you all, the damn turtle is getting press coverage that rivals the debt ceiling crisis. God help us if John Boehner has a pet dog, cat, or bird that ever loses a limb. Between his tears and the unending fountain of articles documenting Spike’s – yes, if he has a bird, I imagine that it’s named Spike – brave and inspiring battle, I expect Fox News to develop a new channel devoted solely to this subject.

amputation cause analysis

Before looking at the cause of amputation data, it’s important to point out that nearly a third of the articles didn’t address the topic in any way (e.g., stories about prosthetic research or technology generally). So out of the original 100 articles, only 71 remained in play for this part of the analysis.

Almost 2/3rds of the remaining stories involved traumatic amputations (65%). This means that the press focuses on traumatic amputees 20% more than their actual number as a percentage of the amputee population. (The Amputee Coalition states that 45% of amputations result from accidents.) Which leads to the following question: Why are traumatic amputees so overrepresented in the media?

First, many of the traumatic amputees in the news are members of the military who have lost limbs in Iraq and Afghanistan since 9/11. While this is a very small group of amputees in raw numbers, these wounded warriors have deservedly received a tremendous amount of attention.

Second, the press focuses on younger traumatic amputees, though I’m not sure whether that’s a selection bias or if traumatic amputees are typically younger than other people with LL/D. (If I had to guess, I’d say it’s both.) Either way, these younger individuals tend to engage in higher-end activities like – just to name a few of the sports listed in the articles I reviewed – paddleboarding, scuba diving, baseball, softball, triathlons, sled hockey, and cycling.

Which in turn takes us to point number three, and back to the concept of  narrative: the unexpected and devastating loss of a limb followed by an arduous climb back to the world of competitive sports is a cultural cliche that everyone can easily relate to. It’s really nothing more than an extreme version of Rocky – the everyman (or woman) palooka who climbs off the mat and comes back swinging. More broadly, one could correctly opine that it’s a uniquely American story, where the underdog, through rugged individualism, overcomes seemingly impossible obstacles (Colonies v. England, anyone?).

Next, congenital limb difference accounts for 16% of the literature. That doesn’t sound all that remarkable until one considers that people with congenital LD make up less than 1% of the entire amputee population. So again, we see massive overrepresentation of this population relative to its actual numbers.

I think this is likely the result of two related factors. First, congenital amputees grow up with limb loss. They figure out how to adapt to it in a more organic way than traumatic, vascular, or other amputees and thus, are likely to be active. Second, as noted above, the press focuses on younger, high-functioning amputees. When writing stories about kids from 3 to 16 – a favorite habit of the press – you’ll necessarily find larger percentages of congenital amputees in that community than you would in the adult community.

Next comes illness – primarily cancer and meningitis – which makes up 15% of the total. According to the Amputee Coalition, people with limb loss from cancer account for less than 2% of the amputee population, so we again see the overrepresentation of a population versus its actual size. Since, in the context of amputation, both of these diseases often link to young kids or teenagers, it brings us back to the previously-expounded age theory.

And that brings us to the biggest cause of amputation in the United States: diabetes/vascular disease. Amputee Coalition data show that 54% of all amputations lose limbs from this cause. So we can expect to read a ton of articles about vascular amputees right? This is an epidemic of epic proportions, so the press will undoubtedly (and hysterically) spin out articles on the topic of brave amputees who have survived limb loss from this malady, no?

The percentage of “prosthetic” articles that mention diabetes/vascular disease? 4%. Let me write that out so it looks bigger: four percent. Even though more than half of all amputations result from vascular disease, we see virtually no stories about prosthetics and this community.

If you accept the arguments I’ve made regarding the previous groups and invert them, you have the explanation for why this might be the case. Vascular amputees tend to be much older than their traumatic/congenital/disease counterparts. As a result, they have more difficulty adapting to life with a prosthesis and are more sedentary. So there aren’t many sexy stories to write about scuba diving, paddleboarding, or triathlons.

I’d also guess that if you took the universe of amputees and assessed which individuals most consistently attempt to actively hide their limb loss from visual detection, I think you’d see a clear correlation between age and the desire to mask. The older the user, the more likely they are to want to hide their prosthesis from view. Unlike athletes like Oscar Pistorius, who is synonymous with the running feet he wears (his nickname? the Blade Runner), geriatrics frequently use foam and long pants to cover their prosthesis. Where’s the sizzle in that? Why would reporters write stories about something they can’t see? Would they even think to write about it?

Finally, diabetes and vascular disease often arise out of two stigmatized causes: obesity and smoking. The public’s attitude towards a 300 pound guy who loses his leg to diabetes or a 2-pack-a-day woman who undergoes amputation secondary to vascular disease is “they had it coming, didn’t they?” This separates them from the traumatic/congenital/disease populations, all of whom were randomly and unfairly tagged by fate for a Jobsian existence. Or, put more simply, the story isn’t that good.

conclusions

The news focuses on inspirational amputee stories roughly three times as much as the next type of article involving prosthetics. While that drives me insane at one level, it reinforces my strongly held view about the power of stories. So I have to take solace in the fact that my emotional distaste for the genre is offset by the validation of a key theory I’ve propounded.

In addition, the largest population of amputees is invisible from a press perspective.

But my central takeaway, having spent more hours than I care to think about wading through Google News articles, is that we need more stories about amputee criminals. Give me one of those every week and I could go off the comedic rails on a regular basis.

I can dream, can’t I?

9 thoughts on “how we’re seen

  1. Lots of text here but not addressing what is the question here. It appears somewhat obvious, though, that media, press, the public (including non-disabled or otherwise disabled people), some prosthetic technicians, organizers of amputee events including disability sports and almost anyone else selecting amputees for their disability to do just about *whatever* often mainly if not exclusively endorse voyeurism. Nothing wrong with voyeurism – nothing wrong with hiding it, as that’s what voyeurs tend to do – nothing wrong with pointing it out either, as that is what victims should do – easy as that. “Inspirational” or “horror accident” stories never really serve to inform – they transport voyeurism, not more, not less – simple as that. That is not that hard to figure out. Question therefore is not so much what phenomenon we are looking at. It’s simple, (dis)honest voyeurism that is there for anyone to see (bwahaha, pun). Question is – what do we do with it? How do we harness all that perverted energy? How can we channel this – as quite obviously, there is thrust, motivation, actionism, a desire to publish and peek, a desire to see and hear and maybe touch. Question is how to use that to our advantage. That, in my view, is the real question. How do we make money out of it? How do we learn to protect ourselves? What do we do with voyeurs once caught and known? Do we post their photos too? Those are the questions that I see. But so far, the “how to exploit voyeurs” debate has not been started publicly, so better wait until we are all ready for it ; )

  2. Thanks for doing this, Dave. Your analysis makes sense: the media attention tracks the way issues are covered in general. Pistorius (who is now a model as well as an athlete) is sexy. Elderly people with weight issues are not. The inspirational angle is, I agree, the way people deflect their difficulty in dealing with the idea of amputation. It turns us into something not quite human (superhuman?) and therefore unlike themselves. It’s a self-protective mechanism. As for the memoirs–I know they can be repetitive and annoying, my own included. I wrote mine to try to make sense of my experience, and in the hope others could understand at least some of it. Again, you’ve provided a useful service. Hope you have funner things to do for the rest of the summer!

  3. Hi Dave,

    I did enjoy your writing. You know what you can’t find on the subject of amputation? Elective Amputation…which is what I had 6 weeks ago. There are a number of articles, all dealing with this guy that had chosen an elective amputation to have a bionic hand…but beyond that, it was rare pickings and I had to do a lot of searching.

    I did find one other man, who like myself, had a trauma injury to his ankle in a accident and then many years later had an elective amputation. The time between my trauma ankle injury in my car accident and amputation was 16 years. His writing helped me cope with my own elective amputation.

    Just as wenlaoshi mentioned above, I write to help make sense of the last 16 years of my life and to process it all. The last 6 weeks since my elective amputation I have had an overwhelming sense of joy and happiness that I haven’t felt in a long time. And since I do want to be athletic again, I am happy to read these inspirational stories about other amputees and their successes. It gives me, as a new amputee, hope and inspiration for my own adventures.

    I would be okay if not one other person read my blog, It’s already helped me more than I could ever imagine by writing down my thoughts, feelings, and documenting my progress as I feel I can finally move forward with my life and get past my injury.

    Thanks again, this article was fun to read. And yes, I would also enjoy more humorous stories of criminals throwing their prosthetics around!

    • Damon –

      you’re the second person in a row to raise the issue of the PERSONALLY therapeutic value inherent in publishing your story. I don’t have any issue at all with people publishing their stories, as it undoubtedly has value not only to readers, but to the writers as well.

      I’ve noted that less is more is my form of therapy, and a hell of a lot cheaper than seeing a professional. 😉

      So my problem isn’t with people telling their stories. It’s that the most well-publicized stories, for the most part, are exactly the same in terms of the message and key takeaways. It’s rare to find an ORIGINAL story out there.

      I suspect that’s because the most successful (read, athletic) amputees are the ones that tend to get published most, and the majority of those books tend to be “co-written” with a professional author who forces the story to fit a familiar model.

      I’m not saying those stories have no value – they may change the lives of many other readers – but I don’t get a lot out of them.

      I suspect the people who never get published, or who author blogs or personal memoirs, are telling extremely compelling stories because they fall outside this formula. Unfortunately, their stories don’t reach as wide an audience.

      Thanks to you and wenlaoshi (previous comment) for both bringing this issue to the surface! Very important point.

    • Agreed 🙂

      Not just amputee stories, but any type of inspirational story, it’s hard to find an originals.

      As for myself, I enjoyed Paul Martin’s books because I want to compete in triathlons as well. If it was a different amputee in a different sport, I probably wouldn’t be interested (since it is more or less the same).

      The only reason why I would want to read someone else’s story is just to get to know that person better, not necessarily to “get” something out of the book.

      And yes, writing my blog is A LOT cheaper than going to therapy! 🙂

    • Damon – thanks for the heads up. I think this is the same guy. Note that in the article it says that a possible defense may be that the cops didn’t have the right to pull them over because they weren’t in violation of any laws. The basis for that argument is that the driver was doing 50. In the left lane. Which seems an odd way to escape detection.

      If that defense is successful, by the way, expect drug couriers/users/dealers to be among the most conservative drivers on the road.

  4. Ah, it is the same guy. My bad. Your post said a guy in Texas, and this story said a guy in North Carolina…but it looks like it was actually a guy in North Carolina with Texas plates!

    http://www.chron.com/disp/story.mpl/ap/tx/7676577.html

    As for the defense, it will be interesting.

    I couldn’t find the Youtube video I saw a couple of months ago, but the a driver was going to slow in the far left lane…the cop drives up behind him…since the car is still going too slow…cop turns on his lights…the car begins going over to the right hand lanes…all along the cop has his lights on behind him. As soon as the car is in the far right hand land, the cop turns off his lights and speeds off! It was funny!

  5. I fit a hedge-hog (small english porcupine) with a leg once. They have two uncanny abillties, first.to draw interest from the media (including the New York Times) and secondly to retract their limbs into their bodies, making prosthetic fitting impossible. The poor unsuspecting hedge-hog ended up in a straight jacket style contraption with a single unarticulating pillar for a “leg”. It never lifted it from the floor and proceeded to rotate slowly around the fixed point. Wheels are not such a bad idea!

    Thanks for the blog Dave, they brighten up mondays!

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