More than one recent traveler to Cambodia has described it as a kind of ‘twilight zone.’ It is a place where everyone you meet over the age of twelve has known great tragedy.

A former colony of France (excellent baguettes are still available), Cambodia experienced relative prosperity upon gaining its full independence in 1953. As recently as 1970, 90% of the country’s farmers owned their own land.

During the early 1970s, US ‘aid’ quadrupled the size of Cambodia’s army in a two year period, as we drew it into our quagmire in Vietnam. Starting in 1968, the US launched massive secret bombing raids on Cambodian territory which it claimed was part of the Ho Chi Minh trail, the supply route that North Vietnam was using to channel arms and military equipment to the Viet Cong. In 1970 the US supported a coup which replaced the civilian administration of Prince Norodon Sihanouk with a military regime headed by General Lon Nol. In part as a result of the massive US military intervention and the destabilizing effect Washington’s meddling had on the Cambodian government, the Khmer Rouge guerrilla movement—which had been insignificant prior to US involvement—grew rapidly in strength and in 1975 seized power.

 

From then until 1979, when it was ousted by Vietnamese forces, the diabolical regime of Pol Pot disenfranchised the entire population. Pol Pot’s Khmer Rouge made extreme efforts to destroy every vestige of colonialism and foreign influence. The entire country was turned into a forced labor concentration camp. The mass torture and killing that followed has been dramatized in the film, The Killing Fields, which refers to a place outside of the capital, Phnom Penh, where tens of thousands of torture victims met their end. It is said that more than one million Cambodians were killed by the Khmer Rouge during these years.

The ‘liberation’ of Cambodia in 1979 by the Vietnamese army and the subsequent exodus of refugees to Thailand led to twelve years of civil war with no less than three armed factions trying to overthrow the government installed by the Vietnamese. In the wake of our tragic involvement in Vietnam, we directly or indirectly supported all factions opposed to the new government. In another example of ‘the enemy of my enemy is my friend’ policy, which has mired the US in so many disasters, we contributed to the emergence of the Khmer Rouge as the strongest opposition military force which demanded, and has received, a piece of the power sharing pie.

After a period of on again, off again ceasefires, a negotiated settlement which includes a repatriation plan for refugees and a proposal for ‘democratic’ elections under U.N. administration has been signed by all parties and backed by the United States, Russia, China, and other regional powers. Prince Sihanouk has returned to head an interim government, and representatives of the Khmer Rouge are again in Phnom Penh as part of the U.N. coalition. Cambodians I talked to are hopeful, but many of them are also fearful of the possibility of a full fledged return to power of the Khmer Rouge.

The situation is desperate. Economically and politically isolated by the U.S. (which until very recently was still trying to punish Vietnam), the country is in ruin. Those fortunate enough to have paying employment earn an average of US$7 per month. Health care is practically nonexistent. Life expectancy is about forty two years. Something like 100,000 people are amputees and perhaps as many as 1,000 more lose their legs every month to land mines, placed primarily by the Khmer Rouge. Life goes on.

One day, a Cambodian friend, upon hearing that I was almost 43, smiled and said, “If you lived here, you’d be dead.” Since the loss of my right leg in 1990, I have spent part of each year working on prosthetics research, disability rights, and rehabilitation issues, both here in the US and in other places. In February 1991, I was invited by the American Friends Service Committee (AFSC) to visit Cambodia to consider a job and to help evaluate the efforts of non-governmental organizations (NGOs) in meeting the massive rehabilitation needs of the people in that country.

 

The AFSC has been involved in Cambodia since just after the fall of Pol Pot. Its efforts in irrigation projects at the village level and in the re-establishment of veterinary medicine (water buffalos are the engine of agriculture) have had a miraculous effect on food production in the wake of a regime where even the possession of Western knowledge was grounds for death. The AFSC was also the first NGO to address the amputee situation and the complete lack of infrastructure. This organization promotes an appropriate technology prosthetic system developed by the French NGO Handicap International (HI).

Handicap International was founded by Jean Baptiste Richardier in response to the great demand and scant resources for artificial legs in the camps for Cambodian refugees established along the Thai border in the early 1980s. The organization’s approach is to establish basic workshops in which technicians and amputees themselves fashion artificial legs using locally available materials such as buffalo hide, wood, rubber from old automobile tires, and a bit of steel. It’s the same

system outlined by David Werner in the prosthetics chapter of Disabled Village Children.

The Handicap International leg stands alongside the Jaipur foot as one of the most exciting examples of enabling ‘appropriate technology’ in today’s rehabilitation land scape. I was eager to see what I had so long promoted among prosthetic practitioners and participants as the kind of creative thinking which could teach a thing or two to the so called ‘advanced prosthetics’ of western industrialized nations.

I seriously doubted that I’d trade my carbon fiber, thermoplastic, titanium leg for one made of water buffalo skin, wood, and tire retreads, but this did not keep me from recognizing the value of the efforts a exploring advanced prosthetic ideas within an appropriate technology context. I’m sure these efforts can open doors to better legs everywhere. It’s altogether wonderful and shouldn’t really be so surprising that some of what is being practiced in the so called developing nations amounts to a lot more than what Dr. Sethi, the inventor of the Jaipur Foot, describes as “blurred Xerox copies” of what’s being done in the West.

As an amputee and as a health worker, I found the visit to Cambodia provoked many thoughts. One especially, which keeps coming back to me, is that while I went to Indochina expecting to be primarily concerned with ‘hardware’, I kept coming back to ‘software’ issues. I had thought that the greatest contribution I might be able to make would be in the area of making and teaching others to make prosthetic appliances. In the wake of this visit, I am not so sure.

My first days in Phnom Penh with Art Foreman (the AFSC’s prosthetist at Wat Than, the National Rehabilitation Center) were more or less what I had expected: discussions of thermoplastics versus lower tech buffalo hide, of the desirability and feasibility of changeable alignments, etc. These are real and important concerns, and I was impressed with Art’s efforts to advance the technical aspects of prosthetic practice in a very difficult environment. That said, from the standpoint of someone who is disabled, I have to wonder if some of the assumptions, methods, and apparent goals of the current rehabilitation efforts need to take a hard look at the reality of day-to-day life for disabled people in this country, at this time.

 

One morning, during a lecture to a group of students at Wat Than who were training to be technicians, I asked what was to become an all-too-common question: why was I the only disabled person contributing to the discussion? The first answer usually was that no qualified disabled candidates could be found. This is inaccurate and unacceptable.

That very afternoon, I was struggling to weld a device I had developed in Ajoya, Mexico (see facing page). It’s really just a clamp which enables technicians to rotate a plaster cast during modification. A below the knee amputee on crutches came up, watched me for a couple of minutes, and then gently but firmly took the torch from me and finished the job with a master welder’s touch. He then went on to fabricate five more devices quickly and skillfully. Here was a disabled person with exceptional mechanical and hand skills. He told me that he had been trained as a welder and mechanic before his amputation, but that he had been unable to find work because he is an amputee. He was hanging around the workshop while he waited for a leg.

When I pressed my question about the failure to include disabled people, the second answer I got was even more distressing. I was told that to elevate the status of and create a ‘professional’ standing for prosthetic technicians it was desirable to concentrate on able bodied candidates, because ‘good’ people would be more likely to enter the practice if they did not have to work in an environment where disabled people were seen as equal.

While I was still reeling from this revelation, I was taken to visit the Maryknoll vocational rehabilitation building at Wat Than. In the first room we entered, there were perhaps 12 or 15 amputees seated at ancient typewriters. They rose as a group and surrounded me…

…one plunking himself down on the ground to touch and examine my carbon fiber lower leg. Their eyes were full of questions, but there was silence until the one who had been so intensely checking out my leg looked up and spoke. Cham Ran, our able translator, looked at me and said, “He wants to know what it’s like to be disabled.”

In some ways, that’s the most haunting memory of the trip. Most of the disabled people we met spend their lives waiting. Even the ones lucky enough to have worked their way through the bureaucratic maze and gotten an artificial leg generally still wind up waiting to regain a life. I would bet that none of the amputees seated at the typewriters in that depressing room will ever earn a nickel as typists. They were there waiting for lunch.

I consider myself extremely fortunate. I’m sometimes embarrassed by how little of an imposition I find the loss of one leg to be. Sure, I’d give most anything to get a real one back. But I’ve been lucky enough to have had a sequence of steadily improving prostheses, and I could live my life happily on any one of the past three or four. That said, I do hope they keep getting better, and I hope even more that my attitude and outlook both continue to grow. It seems clear that the opportunities that appear are to a large degree the result of the way in which we look at the world. The ‘rehabilitation’ process is, in large part, learning to see new possibilities.

Empowerment

The extent to which rehabilitation succeeds is the extent to which it enables individuals to see new, creative possibilities and extend their lives out into them. It must be done mentally as well as mechanically. In our finite, temporal selves, every one of us lives with limitations and every one of us continually rediscovers a creative attitude to dodge, duck, or overcome them. Creative magic makes life worth living.

Rehabilitation is seen as something that is done to the disabled, not by or even with them.

During my visit, I was invited to attend a meeting of the heads of the prosthetic efforts of the American Friends Service Committee, the International Committee of the Red Cross, and Handicap International. It was essentially an NGO summit meeting to carve up the prosthetic turf in Cambodia for the next few years. The efforts of the past decade were reviewed, and possibilities for collaborative future efforts were discussed.

At one point, I was asked if I would like to add anything to the discussion. Again, I asked why there was no one present from any of these organizations who could contribute, firsthand, the perspective of the disabled. I wondered why the disabled were not being encouraged to organize themselves as a force in the shaping of the future of the rehabilitation process in Cambodia. At this time, there was not a single disabled person in the administration of the Ministry of Social Responsibility, which runs the National Rehabilitation Center.

Clearly, rehabilitation is seen as something that is done to the disabled, not by or even with them.

When it came to comment on the present state of hardware, I spoke highly of Art Foreman’s efforts in the AFSC to evolve the basic Handicap International design to include thermoplastic sockets and changeable alignments. But to my surprise, I found an almost total opposition on the part of Handicap International to changing the basic, highly identifiable design or components of their legs. I like and greatly respect Jean Baptiste Richardier, but I find that HI’s apparent insistence on continuing to use only the crudest material components makes little sense in a world where every village has a video machine and other ‘hard currency only’ blessings from the industrial present. I cannot help but wonder if desirable technical evolutions are being suppressed a bit in the name of past success and an organizational reluctance to change. †

While one meets many dedicated and sincere expatriate workers in Cambodia and other parts of the world, I fear that too much NGO energy serves to ‘empower’ bureaucracies and not the disabled individuals those bureaucracies are supposed to be serving. In addition, I’ve observed that the administration of rehabilitation programs by the ‘able bodied’ too often focuses on appliances or components of vocational rehabilitation, which in themselves are probably not the most important parts of discovering ‘what it’s like to be disabled’ and how to get on with a creative and productive life.

Handicap International is justly proud of the amputee technicians in their refugee camp shops. This is good, but as far as I could tell, they have no disabled persons in any of their expatriate administrative positions or among their Thai employees in Aranyaprathet or Bangkok. This is not to dismiss the wonderful efforts of everyone over there, but again and again, I saw able bodied people explaining to the disabled ‘what it’s like to be disabled.’ I saw many people with artificial legs, but few of these seemed to have really regained a life.

A most wonderful exception is a man named Son Song Hak, whom I met at Site 8 (one of many Cambodian refugee camps along the Thai border) thanks to Handicap International’s remarkable Susan Walker. Hak lost his leg above the knee at the age of nineteen, as a Khmer Rouge soldier. His is a typical story: mother dead, invalid father, two younger brothers, war torn country, the only means available for Hak to get rice for his family was to join the army, which, as bad luck would have it, in his province meant the Khmer Rouge. Less than a year later, he stepped on a land mine. He made his way to the refugee camps along the border, where he received a Handicap International leg and went on to become a technician, and later, the Director of the prosthetic workshop at Site 8.

 

An excellent technician, Hak developed a prosthetic knee which, though more difficult to construct, is generally acknowledged by the HI people to be superior to their standard knee. A couple of years ago, Hak, who by this time had a wife and two children, withdrew from the relative security of his employment with HI to start the Khmer Handicapped Association, where I spent the day of March 7, 1991. This association is principally a school with a current enrollment of about 200 students. Most of the students are disabled, but quite a few of them are able bodied Khmers from the camp. The school’s basic mission is to teach (dare I say, more useful) vocational skills like electronics repair. But interestingly, Hak told me that among the best attended classes at the center were those in music appreciation—both traditional Khmer and Western classical.

When David Werner spends three days in Africa scrounging up parts and making a wheelchair with a vertical cross section of health workers, from white collar desk jockeys, to dirty fingernails technicians, to disabled people themselves, I think that what he accomplishes is far more significant than just the wheelchair.

I arrived at the camp shortly after nine thirty in the morning, found Hak, and was with him until after four in the afternoon. Almost instantly our conversation established common agreement about aspects of disability and approaches to rehabilitation that are consistent with the current discussions in the independent living movement here in the US and internationally.

After a couple of hours of getting to know one another, I asked Hak what I could do to support his efforts. It was a great pleasure to spend the rest of the day editing a proposal he hoped to use for fundraising. Hak is an excellent writer and a clear thinker. One of his phrases that sticks in my mind was a cautionary note about avoiding rehabilitation programs which “make the disabled lose the good habit of self reliance.”

After I had gotten started, Hak excused himself and returned shortly on crutches without his artificial leg. When I inquired why, he explained that he had an ongoing problem with an allergic rash on his stump. Though we briefly discussed some things he could try to alleviate this condition, he was far more interested in having me edit the proposal he was writing in English to try to raise money to support the expansion of the association. With a smile, Hak added that though he had been informed that an ‘important’ person was coming to visit him, he hadn’t expected that it would be a friend. The leg was necessary to see an ‘important’ person, but it wasn’t for the presence of a friend.

So why am I telling you this story about a one legged Cambodian who lives in the midst of mine fields on the Thai border? Well, I think there is something in music appreciation and friendship that has a lot to do with discovering ‘what it’s like to be disabled.’ I think that in looking squarely at what lingers in the wake of our efforts, we may see that spending time nurturing creative play and consciousness of possibilities is every bit as essential as hardware. When David Werner spends three days in Africa scrounging up parts and making a wheelchair with a vertical cross section of health workers, from white collar desk jockeys, to dirty fingernails technicians, to disabled people themselves, I think that what he accomplishes is far more significant than just the wheelchair.

When the ICRC comes into a country and spends millions of dollars on a factory which can only be run by expatriate (neo colonial?) supervisors, and which is doomed to fail the moment foreign aid is withdrawn, is this a service?

Back at the prosthetic summit meeting, the head of prosthetics for the International Committee of the Red Cross, Alain Gerishon, listened to the past efforts of the American Friends Service Committee and Handicap International and then proceeded to blow everyone out of the water by describing his group’s plans to spend a small fortune building a central factory run by expatriate professionals, which would crank out what is essentially a thirty-year-old European design for artificial legs, to meet the needs of urban amputees. When the ICRC comes into a country and spends millions of dollars on a factory which can only be run by expatriate (neo colonial?) supervisors, and which is doomed to fail the moment foreign aid is withdrawn, is this a service? Without the elements of creative ‘software’ and consciousness raising, these dollars only create a dependency on a rehabilitation delivery system that effectively disempowers disabled persons and prevents them from having creative control and coming up with their own diverse solutions.

Life is Not a Business

Rehabilitation should be pursued in the context of a creative community. It should be fun, and it should make this a better world. Half jokingly, I call my efforts “New Legs for Nomads,” because we are all nomads. We are all hunters and gatherers, wandering through transient civilizations One of our only true possessions is the inspiration we bring to the solution of the puzzle each moment presents. Along with the technical or “hardware” part of rehabilitation; we must address the software component.

Sometimes I wonder if our aid dollars would not be test spent by sending troupes of disabled acrobats out into the world to entertain and educate. I do not deny the importance of hardware; I use it every day. But without a sense that this hardware is there to serve a life that has possibilities and options, what is the point?

On my return to the US, most everyone I met wanted to tell me the news that our government had announced it would give Vietnam one million dollars for prosthetics. While this is a step in the right direction, in as much as we are finally acknowledging some responsibility, the money will almost certainly be misspent. As with energy issues, I’d say that saving legs is a far more cost effective approach than producing more of them. Dispatching a couple of divisions of US Army engineers to mine sweep Vietnam (and Laos and Cambodia) would surely net a greater number of able bodied people than providing token support for the mechanical side of crude rehabilitation systems that on balance are more inhibiting than empowering for the individual.

The leg I wear is blue and has a Thai dragon decal on it. Other of my legs have been decorated with gold sparkles and eyeballs. None of them looks like a ‘real’ leg, but they sure do function. When I travel, I wear shorts so that people can see the leg work. My leg may not ‘look normal,’but it gets me where I need to go. When I arrive at the National Rehabilitation Center in Cambodia on a motorcycle, or travel across Peru and Bolivia with a blind friend, the people I meet smile because everyone knows that this is a world with many obstacles…and everyone realizes that attitude is everything. HW