Necessity is the mother of invention. I have been profoundly moved over the past few months by a handful of people who have been forced to live this idiom or who have stepped up to the challenge of aiding wounded warriors.
In honor of Veterans Day, please take a moment to learn about these inspiring soldiers and inventors.
Marine Cpl. Todd A. Nicely lost all four of his limbs while serving in Afghanistan. He is “one of only three men – a soldier and two Marines – from the wars in Iraq and Afghanistan to survive an attack as a quadruple amputee.” Michael E. Ruane profiles him and his wife, Crystal, in the Washington Post today, writing that Cpl. Nicely tops “a grim hierarchy of more than 1,100 military amputees from the two conflicts, which includes 21 people who have lost three limbs, 258 who have lost two and 832 who have lost one.”
Jonathan Kuniholm lost part of his right arm while serving in Iraq. He was so unimpressed with the “rubber band on a stick” arm he was given that he set out to change how prosthetics are designed and produced, founding the Open Prosthetics Project.
One of his points resonates deeply with the principles of participatory medicine: If you ask amputees what they want, they will tell you they want functionality, not a realistic-looking hand, which is what the industry has focused on as the primary goal. Listen to his story on NPR’s Fresh Air from last November.
Dean Kamen, inventor of the Segway and many other things, has drawn inspiration from “Star Wars” to create what he calls the Luke Arm:
Hugh Herr lost both legs below the knee in a climbing accident as a teenager, but has overcome that to not only return to climbing, but to design prosthetic legs which are even better, than the ones he was born with. Here’s his personal story:
I love Herr’s spirit: “We don’t accept the world as it is; we will envision what the world should be and make it so.” I saw him speak at TEDMED, where he essentially said people aren’t disabled, technology is. Until that video is posted, please watch this excerpt of a talk he gave at another event:
I could go on & on. I admire the work being done by Peter Levin, Chief Technology Officer of the U.S. Department of Veterans Affairs and champion of the Blue Button Initiative. The most compelling speaker at yesterday’s mHealth Summit (in my opinion) was Col. Ronald K. Poropatich, M.S., M.D. Deputy Director, Telemedicine and Advanced Technology Research Center US Army Medical Research and Materiel Command. They are innovating their way out of a very difficult situation, making the best of what they have, and serving those who serve their country.
This is just my personal list, drawn from my experiences over the past few months. What have you seen that inspires you regarding veterans, technology, and health? Please post in the comments.
Thank you, Susannah! For giving them the credit they so rightly deserve.
I just wanted to add a couple of points:
1: Jon has been fighting an incredible uphill battle for years, trying to find the funding necessary to grow his open source project, the Open Prosthetics Project, to the size it must be to have an impact. As you heard at the Health 2.0 in DC panel of engaged patients, Jon is deeply frustrated, as he should be, because funding has been almost impossible inexistant. As members of the Society for Participatory Medicine, let’s try to help him collectively to realize his dream to help the many amputees with better, more functional and cheaper prostheses. The SPM should create a special fund, IMO. I would certainly contribute to such an effort.
2: Talking about the contemporary veterans of the Iraq and Afganistan wars, one is bound to mention the VERY large number of veterans who will suffer debilitating effects of the IEDs they were subjected to. It has created a whole new class of veterans suffering from an invisible disability, brain trauma. This MIT article offers a good start to understand the magnitude of the problem. As the Washington Post said in 2007 in “A Shock Wave of Brain Injuries“:
Excellent points, Gilles — thanks so much. And thanks again for the introduction to Jon and his work at Health 2.0 DC.
Thank you so much for writing this…
Wonderfully conceived and executed, Susannah. Your thoughts and the way you assemble resources into a post are such a gift.
I have no observations to add, but from the ones you posted above, I’ll emphasize two –
— Before designing, ask patients what they want. (The same thinking should apply to cancer treatments and everything else. Too often treatments are prioritized based on cellular biology, not quality of life.)
The business view of this is simple: shift your thinking – the patient is the customer, not the doctor.
— Let’s do everything in our power to fuel innovation in healthcare. That means open data (e.g. Blue Button and HealthData.gov) and stimuli such as the Health 2.0 Developer Challenge.
When someone like Jon is so motivated yet (as Gilles points out) not funded, we have a disconnect.
It may help to think beyond adults, to children who are amputees, in war and elsewhere.
Dave, you wrote “When someone like Jon is so motivated yet (as Gilles points out) not funded, we have a disconnect.”
It is not a disconnect, IMO. It is an absolute shame. Jon is a very talented engineer from Duke U. first and then a soldier. I posit that few people can understand and design the next generation of prosthetic limbs as well as he can, using the networking power of the Internet.
Some tweets from TEDMED about Hugo Herr’s remark – reworded for clarity:
@HLogr: Herr: technology can make disabled “normal”. Somebody w eyeglasses isn’t disabled but without the tech they would be.
@ellmcgirt: There is no such thing as a disabled person, there is only disabled technology. It’s a design issue
And perhaps most inspiringly…
@PaulTarini: Herr: My bionic limbs are part of my identity now. And I can upgrade!
Thanks, Dave! @Cascadia found the quote I remembered from Hugh Herr’s TEDMED talk:
“There’s no such thing as a disabled person, only poorly designed technology”
One of the most inspiring figures I know is my dear friend Christian Bagge. He was serving in Iraq when he was severely injured on June 3, just south of Kirkuk. During a routine road-clearing mission about 100 miles north of Baghdad, the explosive power of the two bombs tossed the soldier’s Humvee into the air. Christian sacrificed both of his legs for his country. Read some of the stories and videos below:
http://www.nrtoday.com/article/20070221/NEWS/70221012
http://www.youtube.com/watch?v=YDhMOaHY2ck
http://www.bing.com/videos/watch/video/bush-runs-with-injured-soldier/6wgzk13
We were honored to help with the building of his new home :-) and it is incredible to be friends with this American hero
So true, Brian, the most inspiring heroes are often the ones closest to home.
Hey, Susannah!
I had quite a reaction to this post and the comments. In fact, there is a just now being organized a nonprofit project called “The Badass Project,” inspired by a post by Johnny B. Truant, who was overwhelmed with volunteers in the comments and by email. There will be weekly interviews of “Badasses” (people who inspire because they simply choose not to see their lost abilities as crippling them, but a simple fact of their lives they’ve overcome ). Currently, the way to nominate a “Badass” simply email at johnny@johnnybtruant.com . At the end of the year each year, there will be a “Badass of the Year,” voted on by the public and announced at a live event. Although Badasses rarely ask for money for themselves (but do for their projects), there will be both a cash award for “The Badass of the Year” and an equal monetary donation to the charity of their choice. When there’s a website (like I said, this is just now starting up), I’ll post the address.
That was my first reaction. I had another reaction that I had to figure out how to phrase without insulting anyone. Actually, it’s a question, having to do with this statement:
I see how this applies to people who’ve lost limbs or their sight, or some other physical ability or body part loss. But I’m not sure if it’s also supposed to apply to e-patients like myself. So, without any intention of insulting or confronting, but from a sense of wanting to understand, how is it that technology might help those of us with the nearly constant pain and fatique of Fibromyalgia or Chronic Myofascial Pain, replace the disks lost and the bone spurs that have developed in my spine, or fix the neurological imbalance in my brain that causes my bipolar disorder? Is there something I’ve missed here? Again, I’m simply looking for information.
Annie
Hi Annie,
Thanks so much for speaking up.
I also heard from @EvidenceMatters (sorry, no real name listed so I’ll stick with the Twitter name), who wrote: “Hugh Herr has admirable sentiment but I respectfully contest that it isn’t true for people w TBI or similar” (TBI = traumatic brain injury). I replied that I have no doubt that Herr would add nuance to that statement to show he is talking about the realm of what is possible for technology to ameliorate. (I’ll note that Gilles also brought up TBI – it’s a huge issue.)
Again, when the TEDMED video is posted everyone can watch Herr’s inspiring speech. I am just hoping to build the gate for it by posting about what I learned from seeing it live.
I feel a debt of gratitude that I have been able to attend so many amazing conferences and see so many fantastic presentations. I try to write about as many of them as possible so that more people can benefit than the lucky few who were in the room. Stay tuned — I’ve got a notebook full of ideas for future posts about Connected Health, Health 2.0, e-Patient Connections, the American College of Surgeons, the Mayo Transform Symposium, the Project HealthDesign meeting in Nashville… the list goes on.
Switching gears, thank so much for the information about The Badass Project! Laura Hillenbrand would be my nominee for Badass of the year — do you know her story? She is living with chronic fatigue syndrome, essentially confined to her house, and yet she is acknowledged as one of the most thorough researchers and writers of our time.
Here’s a story about her latest book (about a veteran of WWII as a matter of fact):
The Defiant Ones
In her new book, the author of ‘Seabiscuit’ turns to the unimaginable ordeal of an Olympic athlete and WW II hero. Because of her own debilitating illness, they struck a special bond.
http://on.wsj.com/b1AE9x
Suzannah~
I always enjoy your posts. They are not only filled with information and links neatly tied together, but also carry your emotions and hope and dedication. Even though they may be about an event in the past, they are always forward-looking. Most of all, I always feel heard by you.
I have passed on the info about Laura Hillenbrand to The Badass Project. She sounds fascinating, as does the book!
Annie
Thanks from me too, Annie. As much as I love Herr’s sentiment, his catchphrase rubbed me wrong, even for dealing with physical injuries.
My feeling, in private note, was: “I agree that disability can disappear in the presence of *great* design, but not vice versa.”
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My very first job was teaching typesetting in the print shop at a school for handicapped kids – cerebral palsy, spina bifida, etc. The kids there were total Badasses, even back in the era when they were referred to as “crippled children.”
As recounted in my book, during my own illness, one day at home I realized “Wait a minute, why can’t I be at work?” My leg was broken from the cancer and recovering, and I had stage IV cancer; but I was in no way at an energy level that required bed all day. I realized my issue was that standing and walking were really tiring; other than that, I could work, drive, get around.
I found a magnificent scooter by Tzora, which disassembles:
…so it fits in the back of a car. I traded in my hybrid Camry for a Prius, and I was able to get myself to and from work independently.
(I could one-crutch myself between the driver’s seat and the back of the Prius, sit on the rear deck, and assemble or disassemble the scooter.)
Badass!
(Have we mentioned lately that you rock?)
Hey, Dave!
I love your dedication to being and doing as much as you can. And the scooter’s such a great idea. I had no idea there was such a thing as a portable scooter. (Guess I’m going to have to get a copy of your book and read the whole “e-Patient Dave” story. I’m sure that will give me inspiration for some time to come.(; ) I may have to nominate you for “Badass” myself!
I’m grateful I wasn’t the only one who had an off-kilter reaction to the quote I commented on. Maybe there is something seen as “technology” that I’m missing–better lab equipment for the development of medications? The development of more nerve-stimulating implants to distract from pain? Revamping the whole system so that meds get to the market more quickly, covered by insurance more quickly, become generic more quickly? (A bit of dreaming…) The legalization of marijuana, which is sometimes the only thing that works for some patients? (One can always hope…)
(And you’ve no idea how badly I needed to hear something positive. Thank you and {{gentle hugs}}.)
Annie