This is part of a series of stories on design and disability from the July-August 2009 Utne Reader. For more read “ Form and Fashion ,” “ Building a Better Arm ,” “ Prosthetic Power ,” and “ The Future of Prosthetics .”
Jonathan Kuniholm wants to revolutionize prosthetics. As part of the Defense Advanced Research Projects Agency’s (DARPA) aptly named Revolutionizing Prosthetics Program, he is one of more than 300 biomedical engineers worldwide who are working to advance prosthetic technology. This ambitious, multi-institutional effort has been likened to the Manhattan Project in its scope.
However, Kuniholm’s vision extends beyond technological innovation. Through his North Carolina-based Open Prosthetics Project, he wants to also advance how prosthetics stakeholders—including amputees, prosthetists, and manufacturers—communicate and share information. The Open Prosthetics Project is an open-source initiative, which means that the freely share their research and prosthetics hardware designs over the Internet and invite the public to use and improve upon them. By expanding their pool of “lead users” in this way, the project aims to accelerate innovation. And as an Iraq war veteran and right arm amputee, Kuniholm has a personal stake in the outcome.
I spoke with Kuniholm about his hopes for advanced prosthetics and the Open Prosthetics Project, as well as how the media feeds the prosthetic hype.
You wrote in your article for IEEE Spectrum that “we need to push the [prosthetic] arm that last mile to the consumer.” How is the work you’re doing pushing the arm that last mile?
Well, first of all I should say that I am only one of over 300 engineers working on the DARPA Project, and I’m not involved in the commercialization plan of that project, so I can’t speak to how that’s going to occur. But I am part of some efforts to maximize the research that we’ve been doing. As I pointed out in the IEEE article, developing an open standard for the control of the arm, to make the components modular and interchangeable, is part of that effort to lower the cost of innovation and make it easier for change to occur for the consumer.
Beyond that, I’ve been making some efforts outside the DARPA Project to commodify different components that might be useful for prosthetic arms, that don’t currently exist as products. With the Open Prosthetics Project, take my Open Board, for example, which is a digital signal processor that’s designed to process skin surface EMG [electromyographic] signals. At the same time that we're trying to develop that as a useful prosthetic control device, we’re also exploring the possibility of using that as a video game controller that might work with any of the major video game consoles. Our hope is to reach the sorts of people who like to do things on their own, like hardware hackers, to excite more people into improving and developing this product.
Somebody told me that last year people spent something like $35 billion worldwide on video games. So if that market gets excited about a device like this, and if there’s an open source aspect to it, we hope to be pulled along for the ride and repurpose it for prosthetics. Then we could get a jump in innovation, as well as lowering the price for consumers.
What has the consumer response to the Open Prosthetics Project been like so far?
Well, this is still pretty early. We’ve made just a few of these boards. One of the challenges that I point out in the IEEE article is that as soon as you start talking about hardware, and that means mechanical devices or actual computer boards that do something, then the barrier to entry is much higher. It’s not just someone downloading some software off the Internet. All of the sudden you have to make something or troubleshoot something or debug it, and it costs more. So we haven’t yet reached that critical mass where things are happening that have nothing to do with us. But I think we’re almost there. Hopefully, by the end of the year, I’ll be able to tell you that we have three or four different groups independent of us, working on the same hardware.
How does a major prosthetics manufacturer like Otto Bock Healthcare fit into that? Are they signed on to Open Source?
Not at all. We had a meeting at the myoelectric conference, which is the big electronic, powered prosthesis conference that occurs in Canada every year, and we were talking about the possibility of creating some sort of open control standard in the industry. The representatives from Otto Bock said in that forum that they were proceeding with their own proprietary control standard, and they had no intention of even licensing it at any price to anybody else. So that means that the control system they introduce, and I’m not sure when they’ll introduce it, will not be able to speak to components from any other manufacturer.
One of the discouraging things about all this is that people are making business decisions about a market that’s very small and unlikely to support much, if any, private research and development. What we’ve had is a bunch of public money being spent on this. So as both a consumer and a taxpayer, I think we have an imperative to try to make the most of the government’s investment. And having the government fund competing efforts that aren’t coordinated and can’t communicate with each other and don’t have interchangeable parts is short-sighted.
I don’t think it’s a zero sum game at all. I think open approaches can only improve the care given to patients and ultimately lower the costs to manufacturers and providers by making it easier for them to provide better care. I think you can raise the bar for everyone.
You wrote in your IEEE article that a chasm exists between what people think is available in prosthetics and what's actually available to consumers. How has the media played a role in that?
I think it has a lot to do with the medium. When you’re talking about short news stories, blog entries online, or short TV news pieces, there’s not a lot of time to tell a complicated story. So everything gets reduced to a sound bite, and the nuances get lost. The media has focused on the gee-whiz part [of prosthetics]. If somebody was able to control signals that someone interprets as being controlled by thought, then the story automatically becomes about a thought-controlled arm.
In 1965 the New York Times ran a story about the Boston Elbow program when it was first announced that said, “New prosthetic limb allows amputee to control limb by thought.” So we’ve been hearing the same story since then, and we’re still hearing it. While I’m very excited about what's happening on our project right now, when I go to the prosthetist later today, I’m still going to be getting work on this hook that has a patent from 1912.
So how would you like to see the story change? How should the media report on prosthetics?
Since that 1965 story, what we’ve had is a focus on the concept car. We very much have an analog in the auto industry. There are concept cars, and there are production cars. I would like to see not only a focus on what the production cars look like, but also a realism about what they do. There have been stories about the myoelectric prostheses delivered at Walter Reed, one of which I have, that would make you think those hands already do everything that the DARPA project is seeking to accomplish. And they don’t. I would like to see the press focus on what people can actually get in the clinic. Remember that these myoelectric prostheses are still only used by fewer than 5 percent of the upper extremity amputee community. So we’re talking about inflated claims about an early adopter niche community. We should focus not only on what the production stuff actually is, but also what is actually delivered to most of the patients.
Do you think pop culture or science fiction contributes to the prosthetics hype?
I think that one reason the news stories go the way that they do is that news is entertainment, and in a brief period of time you tell a story that has a happy ending. I think that happy ending is informed by—let’s face it, not many people know somebody who’s lost an arm. You may know somebody who’s lost a leg, like your aunt who has diabetes. Most of what we know about prosthetic arms doesn’t have anything to do with prosthetic arms. It’s science fiction imaginings. It’s the Six Million Dollar Man, it’s RoboCop, it’s the Terminator, it’s Luke Skywalker and Darth Vader. So when we imagine what we think is possible or what should be possible, we’re connecting these science fiction representations, and it seems like all this stuff should be done already.
When 60 Minutes did a piece on us, someone they interviewed said, “Our hands are part of what makes us human,” and somebody responded in an online comment, “Oh, so you're saying that somehow amputees are less human?” But I think there’s some truth to that perception. In the Star Wars series, amputation seems to relate the continuum of good and evil across generations. Luke is missing an arm, and Darth Vader, his father, is actually missing all of his limbs. So Luke has a piece of this lack of humanity that is nearly complete in Darth Vader.
It becomes a metaphor for dehumanization…
Exactly. You see it in Captain Hook in Peter Pan, and you could argue that that’s what demonizes the bad guy in The Fugitive. That’s something I’m interested in and haven’t done much with. I just think it’s interesting how amputation in popular culture is used as a symbol for a lack of humanity.
You should write more about that. You could have a whole new career.
(laughs) I’m going to finish my Ph.D. in engineering first.
One last question. You write in IEEE Spectrum that "the greatest revolution of all may be apparent only after the frenzy of research spending on prosthetics has evaporated." Why after?
My belief is that perhaps the greatest challenge is not the technical challenge, but actually how it gets delivered to the consumer. And some of that is beyond the scope of the [Revolutionizing Prosthetics] project. If we lay the groundwork for future innovation, then that itself is the achievement. And, if it succeeds in making all of the innovations in the future possible, well, then you could argue about when did the revolution occur. Did it occur when you created the infrastructure that made it possible, or did it occur when it actually happened? I don’t know. But, I think the most important thing we can do is create an environment where innovation can occur, in this vacuum where it hasn’t occurred for so long.