A Matter of Dignity

by Andrew Potok

  Danny's exhausted by the end of the fitting but perks up again on our drive home. “When I sit,” he says, “the leg is quite flexible. This socket is bolted to a carbon fiber frame that has an axle through the top, and the socket's attached to a plate that pivots front to back so that there's no torque.”

  It takes another couple of visits to make several small adjustments on Danny's new prosthesis. When he comes to my house with the end product, walking as smoothly as ever, he is like a new man, full of himself. “Feel this,” he says, guiding my hand to the upper part of his new leg. “Feel that material? I had Dave laminate it. Know what it is? It's fake leopard skin.”

  John Fago, an above-the-knee amputee, a photographer and a teacher, travels widely setting up prosthetics workshops in Third World countries. There, he teaches local disabled people the skills necessary to make legs without recourse to the carbon fibers, steels, resins or hydraulics that are taken for granted in the United States. Where John goes, artificial limbs are more likely to be patched together with padded leather cuffs, scrap wood, car tires, PVC pipe in some countries, bamboo in others.

  The replacement technologies available in wealthy countries are unimaginable to most of the rest of the world. Whether in Mexico or Cambodia or Uganda, legs and wheelchairs are ingenious adaptations made from available parts and accessories found on construction sites or bike repair shops or scavenged in garbage dumps.

  John tells me about the time he spent in a famous leg shop run by a Dr. Sethi, an Indian orthopedic surgeon, where they make what is known as the Jaipur limb. This leg lends itself well to the regional lifestyles where one goes barefoot in homes and temples, squats at the toilet, sits cross-legged while eating. The best-known component of this leg is a cheap but durable wood-and-rubber foot that farmers can wear in environments such as muddy rice paddies. This leg costs less than a pair of Indian shoes. The Jaipur project is one of the best known of Third World programs, particularly interesting because it was developed by the local people as opposed to those prosthetic projects that are imposed by the First World. John spent time in leg shops in Mexico, in China, in Cambodia and Cuba. Aside from his work in prosthetics, he travels widely with a children's theater he founded in Colorado fourteen years ago, which focuses on social and environmental issues.

  John Fago lost a leg to osteogenic sarcoma, bone cancer, when he was thirty. “The age you lose a leg makes a big difference,” he says. “Young kids adapt so quickly that it's almost like nothing happened. It's pretty difficult if it happens in your teenage years or in your twenties, before you've figured out who you are. At thirty, the psychological part of amputation was easier to bear than the physical. When I got my cancer,” he says, “I was given a fifteen to thirty percent chance of surviving at all, so the prospect of losing a leg became the least of my problems. When a doctor prepped me for my amputation, I remember thinking that this was going to be another way to keep me from being ‘normal.’ Being outside the scope of the normal always appealed to me. I liked being different, even weird, and now, with one leg, my weirdness would be assured.”

  He did feel vulnerable sexually, though, especially when, shortly after the amputation, he was with a female acquaintance, a friend of a friend. “I wasn't coming on to her,” he says, “but she volunteered that the idea of going to bed with me disgusted her.” Then, as he was getting chemo at Sloan-Kettering, having lost a leg, all his hair and a lot of weight, looking and feeling horrible, a woman he didn't know all that well came by to visit and fell in love with him. “Let me tell you,” he says, “that helped!”

  Because, like Danny's, his first two legs were terribly made, John began to think of designing and making prosthetics. He found a leg shop that let him help make his own leg. “After all,” he says, “prosthetics was originally done by shoemakers. I loved the process and started looking for graduate programs in rehabilitation medicine.” Just then, he got a job taking photographs of disabled village children for David Werner's disability program in the mountains of western Mexico. “David is a rare, rather impish kind of a saint who has devoted his life to initiating health and disability programs where none exist. I was so impressed by what this man was doing down there that I asked how I could help,” John says. “David Werner's foundation put me through a six-month program at UCLA, where I learned the prosthetics craft. Immediately after, I went back down to Mexico to help set up a leg shop and train others to make prostheses. After that I made some twelve trips to the little mountain village of Ajoya in a six-year period. I felt that I had found the perfect outlet for my skills and my politics. The David Werner experience made me realize the necessity of this kind of work in the Third World.”

  After World War II, Congress tried to set up six regional prosthetics departments in the United States but private enterprise defeated the idea. As a result, John tells me, his first leg cost about $2,500, the second $3,500, the last one, just recently, $25,000. “It's true that legs have become very sophisticated,” John says. “They're made of expensive components. But if some similar part were intended for a mountain bike, it might possibly cost $150, but because it's to be a part of an artificial leg, the thing goes for $3,000 or $4,000.

  “Attitudes about the making of prostheses are very different in other parts of the world,” John says. “The best I'd ever seen was in Cuba, where it was clear that they were trying to help people rather than make big money.”

  At his graduation dinner at UCLA, the director predicted that half the graduating students would soon not only have big-time leg shops of their own but within five years their net worth would be at least a million dollars. “That actually happened,” John says, “though to me, only two of the fourteen of us were the least bit talented. The rest were obvious hacks.” He remembers asking an ablebodied thirty-year-old guy in his class why he wanted to be in this business. The man told him he'd been the accountant for an artificial-leg shop and now wanted to get into real estate. He needed cash and didn't know a better way to make a lot of money fast than to open a leg shop of his own.

  When I mention this to Dave Loney, he tells me of his meetings with the prosthetists he admires, during which they often talk of their frustration and disgust with the field. “We sometimes feel like slimeballs by association because of the preponderance of greedy hacks in the business,” he says.

  Previously, prosthetics work was in the hands of craftsmen, shoemakers, locksmiths and clockmakers, some of whom had never even finished high school. They devised wood and leather legs, rigged shoulder harnesses and complicated mechanisms for arms and hands, making prosthetics with the materials at hand and doing it well. Until recently, there were very few requirements in terms of education, so many of the children of the original craftsmen entered the field to make a killing. “For every ten prosthetists,” Dave says, “there are nine we can live without. The whole thing makes me furious, but I'm hopeful that, little by little, those of us who focus on technique and clinical training will rid the field of hacks.”

  When the successors to the craftsmen took over in the early 1980s, they could get away with shoddy work because, even though it requires some ingenuity to come up with artificial limbs that work, no one insisted on medical or anatomical training. Educational requirements were minimal and licensing has recently been made mandatory only by a few states. But as space-age materials, complicated torsion and myoelectric systems have entered the field, patients’ expectations for comfort as well as function have been raised.

  “The bad guys dominated the practice in Vermont when Georgia and I arrived on the scene,” Dave Loney says. “People expected us to be vultures like the rest, here only to make a pile of money. It has taken all of the nine years we've been here to get respect.”

  Recently, Dave was invited to make grand rounds at Dartmouth Hitchcock Hospital as an expert in the field. “It was not only a great honor for me but it never would have happened unless they realized that there are a few of us who are in it for more reasons than the money.”


  “Who pays?” I ask. “Can anyone who needs a prosthesis get one?”

  “Medicare pays, while the private insurance conglomerates pay only a small part. But there seem to be support groups out there that help almost anyone unable to pay. Plus, if you're a kid under eighteen, the Shriners’ hospitals provide free prostheses.”

  Rather than greed or what some might call free market entrepreneurship, prosthetics programs in the Third World often reveal other serious problems. In 1990, John Fago was invited to spend a month teaching at the national prosthetics center in Cambodia. The country at that time had little experience with foreigners, and he arrived at the leg shop with his girlfriend on the back of his motorcycle. He was wearing shorts, his artificial leg in full view.

  “Many of the local amputees lived in a dormitory at the center,” he says, “waiting for an artificial leg, though once they were fitted with one, only their mobility, not their status, would be improved. They needed a lot more than that to live like independent people. When I asked why there were no amputees working on making legs, I was told that none of them were qualified, which was totally wrong. As soon as I began showing them how to modify a mold for a stump, one of the amputees, watching me, grabbed the welding torch from my hands and started welding masterfully. I brought the guy into our class but this was a strange thing to do as far as my hosts were concerned. I thought it might help change attitudes but it didn't.”

  Aside from realizing that the status of disabled people in the Third World would not easily change for the better, he was shocked whenever he was witness to the behavior of the International Committee of the Red Cross. “With their huge budgets,” John says, “and employees who are basically corporate executives advancing their careers, they hardly help empower the people they supposedly serve.

  “One time, I was in a car, sitting next to a guy from the Red Cross who had just flown into Phnom Penh. We were off to a meeting to talk prosthetics in a small town. He told me that the secret of his effectiveness and understanding of what was going on in a country was built on excursions such as this.

  “Typically, what these people do is to fly into whatever city, spend a night at the best hotel, catch a morning flight into the country, go to a meeting, get back on the plane to be back in the hotel by cocktail time. Here was someone with no experience of Cambodia, with huge resources supporting him, with a plan established beforehand by expatriate management rather than by the disabled people's needs.

  “In that particular case,” John says, “the man had come because a British company had begun to produce a new generation of prosthetic legs. The Red Cross was engaged in peddling the obsolete tools and machinery so that legs could be manufactured in Cambodia for Cambodians. You could argue that this would be an improvement but no one had checked it out with the natives. It was a corporate decision from on high and had nothing to do with a Cambodian delivery system, which among other things had to consider how to maintain production after the Red Cross was finished with them.”

  “What would have made more sense?” I ask.

  “To identify those groups in the country who are trying to deal with the situation, then do whatever you can to support them financially and with training programs. You go from the bottom up, not the other way around. Whenever you bring in mechanical systems from the First World, especially if you're training nondisabled people, you give those people skills which they will undoubtedly take somewhere else where they can make more money. If instead you train disabled people, their personal needs are going to continue, as will their understanding and compassion for other disabled people.

  “Listen,” he says, “there are certainly a whole lot of dedicated people out there trying to help. But I've met too many who are living a colonial life, with servants and all the perks, and are interested mostly in continuing that life.”

  Though John passed on his prosthetics skills when he was in Cambodia, he's convinced that the best thing he did was to advance the concept of independent living by demonstrating that one can still live productively, not subject to karma, to God's punishment. “Though life is tough for amputees there,” he says, “that trip was a lesson to me about how patronizing we from the First World can be. My being there with a positive attitude, my cameras, my motorcycle, my girlfriend, that's what was important.”

  Nearly twenty years ago, John was trying to repair his bike in a bicycle shop in China. By the time he had finished working, there were about three hundred people watching him, partly because in 1983 many had never seen a non-Chinese but partly because they'd never seen anyone with an artificial leg. “In China,” John says, “most people who lose a limb don't get an artificial leg. They walk on crutches or stay at home. I love being out in the world because I'm not only seen as a privileged white American but as someone who has obviously had some problems of his own.”

  An accomplished sportsman and a daredevil skier, John translates his love of sports equipment into feelings about the appearance of his prosthesis. “Though in some ways, I couldn't care less about appearance,” he says, “I don't want my artificial leg to be covered with flesh-colored foam. That's ghoulish. But I do want my leg to look like a piece of sports equipment, lean and functional, an athletic device, looking high-tech and cool.

  “I do leg demonstrations for kids in schools, taking it off, putting it back on, showing the kids how it operates. I think it's important for kids, or anyone else for that matter, not to be afraid of a prosthetic leg or a stump. I wear shorts as much as I can. I want people to see that I have this disability and it's not stopping me from being out there or from doing things.”

  Aesthetics aside, a prosthesis that looks like the limb it's replacing isn't always desirable, as with the split-hook hand, which is easier to manipulate than a facsimile of a hand. Legs preferred by some amputee runners because of their flexion characteristics resemble a cheetah's legs or the suspension band in a pickup truck more than a familiar articulated leg.

  “This design trajectory of a technology—from mimicry to modification and then to disassociation with the original— has happened many times in history,” writes Katherine Ott, a curator at the Smithsonian Institution. “The first movable type resembled written script. Initially, railroad cars looked like horse-drawn coaches, and were pulled by horses along wooden and iron tracks. Early automobiles, the familiar horseless carriages, imitated buggies in design and suspension. Artisans of these technologies have long since abandoned any allegiance to their precursors.” And thus, in the spirit of form following function, both Danny and John Fago prefer the brute honesty of transparency to an obvious imitation.

  Because he limps pretty badly, John uses a cane, which his prosthetist doesn't like, but he feels a lot more mobile with it. When he was sixteen, he had a bad skiing accident, so he still has plates and screws in his stump, compromising his muscles and making his skiing feats even more astonishing.

  John takes a lot of pleasure in describing the technology of artificial legs, talking about the way a foot rolls over, using stored energy, the way it flexes and extends, talking of knee joints, titanium cylinders with areas cut out of them, hydraulic pistons like shock absorbers in a car. He lovingly describes a little device called a rotator that lets the knee flex in one plane. If he's sitting down, he can actually push a button to rotate it, which allows him to sit in a full lotus position and get in and out of tight places.

  He himself designed a prototype for a leg that is a big crescent extending to the ground to a point. The design seems radical, its application intended primarily for runners, the point of the crescent lending itself more to springy take-offs than standing still. “You couldn't even get pants onto this thing,” John says.

  John's present prosthesis is as high-tech as they currently come. For some years, he had a much less sophisticated leg, but, as he was financially able to do it, he was convinced that he owed himself a better one. “Not without some guilt, I got a high-tech prosthesis,” he says, “and it made a hu
ge difference in my mobility. The reality was that the Cambodia-type leg took a lot more energy to use and wasn't good for my spine.

  “For people with disabilities,” he says, “skiing is the most amazing thing because suddenly you're free and gravity is your friend, a welcome contrast to hopping around and being careful. Put me on the top of a mountain and I feel I can do anything.” He arranges his life so that he can ski at least eighty days of every year. “Skiing on one leg is a very elegant thing,” he says. “A prosthetist I know in New York keeps trying to develop a prosthetic skiing leg and I keep telling him that he's nuts. After all, I've got two outriggers for balance, and the idea of a heavy apparatus strapped to your body when you're flying down the hill just doesn't make sense.

  “People sometimes say I'm skiing to get stroked. They yell down from the chair lift: ‘Hey, that guy's not disabled,’ then they tell me that I'm some kind of inspiration. But all I'm doing is having fun.”

  He talks about the logistics of disability. “Sometimes I feel guilty about calling myself a disabled person because all that's wrong with me is the absence of one leg. Especially because I'm very physically fit, I'm often hesitant to ask anyone to do anything for me. But say I'm in bed reading and want a glass of water. Do I ask my wife to get it for me or do I get out of bed, grab my crutches, get the water and spill half of it as I hop back into bed? I'm often confused about how independent I need to be.”

  He admits that he's always looking for discounts for disabled skiers. “There are people in the disabled community who think they should pay like everyone else,” he says, “but as far as I'm concerned, screw that. When I first started skiing out in Colorado shortly after my cancer, little by little I realized that, even on one leg, I was as good as anyone on the mountain. I skied that first year free on a special pass, and at the end of the season I went to the director and said that I didn't want to assume that I could keep on skiing free just because I was disabled. He opened his desk drawer and pulled out a bunch of visitors’ remarks about me, saying that as their hands and feet ached from the cold and the trail looked daunting, they'd see this one-legged guy whip down the hardest run on the mountain and suddenly they were happy to be there. The director said that I was earning my way.