New Legs for Nomads Notes: A Visit to Cuba
In 1986, David Werner and Trude Bock met John Fago, a photographer who happens to be an amputee. They invited him to visit Ajoya and take photographs for David’s book, Disabled Village Children. The following year, John returned on his own to help out in the newly formed prosthetic workshop at PROJIMO. In his photographic travels around the world, John had visited many innovative leg shops like Dr. Sethi’s Jaipur Foot Center in India. He had begun to make legs for himself, and getting involved in helping others seemed like “the logical next step.” In 1988, John completed the UCLA. School for Rehabilitation Medicine’s Graduate Prosthetics Program and founded New Legs for Nomads, an independent project under the Hesperian umbrella to promote advanced techniques and the development of appropriate technology in the practice of prosthetics in developing countries. John visits Ajoya at least once a year to make legs, share prosthetic skills, and explore new appropriate technologies for the construction of artificial legs. The Ajoya efforts of John Fago in prosthetics, as well as those of 0liver Bock in orthotics and Ralf Hotchkiss in wheelchairs, are supported by a grant from the Thrasher Research Fund. John also devotes part of each year to socially progressive, environmentally activist children’s theater.
The Ajoya Orthotics and Prosthetics Support Team (Oliver Bock and myself) traveled to Ajoya to encourage David’s canoeing efforts. Well, perhaps that was not our primary objective, but an unusual stretch of heavy rains and a swollen river pressed us to insist that the battered aluminum canoe (that strapped atop various Hesperian trucks and vans has successfully crossed the border so many times with “duty-free” medical supplies for PROJIMO), be put back to its intended aquatic use.
One paddle was found and another made from a wooden crutch (appropriate technology?). Then off went David piloting various foolish souls down a churning river from Ajoya to San Ignacio: three times in two days before the water dropped to normal, nonnavigable November levels. Alas, Oliver’s postoperative appendix stitches and the press of prosthetic duties upon me made our participation in these escapades impossible. But I like to think that the succession of childlike gleams in David’s eye as he headed around the bend one more time, was just what the doctor ordered.
Meanwhile, back in the prosthetics shop, Marcelo, Conchita, Lupe, Brenda, and I were busy making a ventilation hood to duct away noxious fumes from the polyester resins we use to make artificial legs. This is a big step forward in protecting the health of the prosthetic workers. It was precipitated by Conchita’s concern over headaches, which began shortly after she started working in the leg shop. We also experimented with acrylic resin in place of polyester. Widely used in Europe, acrylic resins have about one tenth the toxicity of polyester resins and have an additional advantage in weighing about half as much as an equal volume of polyester. Unfortunately, acrylic costs about twice as much (yet, how much are your lungs worth?), and at present we have no source in Mexico so it must be brought down from the United States, under the canoe. Looking ahead, I hope that a good oven for thermoplastics can be put in place in Ajoya so that we may move in that much safer and potentially faster direction.
In December I spoke with David by phone and he asked if I could return to Ajoya in February. Well, sure, I said, if I could combine it with a look-see at the rehabilitation and independent living scene in Cuba. So I found myself in Merida, Mexico on January 18th boarding a plane for “el brinco a La Habana” (“the short jump to Havana”).
Havana is a wonderful place. On my first walk, I got caught in the rain and took shelter under a covered walkway with about forty Cubans. Chance conversation led to an invitation back to the apartment of a new friend. After an excellent meal of beans and rice, about eight people pulled the drawers out of bureaus to use for percussion in rounds of rumba singing that went on until 4:30 in the morning.
Sure, things are scarce, long lines, no gas, but culture thrives in Cuba. It is a joy to spend time in an urban center with a population of two million in which you may walk safely anywhere, in a people-scaled urbanscape with clean streets occupied mainly by pedestrians and bicyclists. Cuban friends complained of spending over ten hours a week waiting in lines for rationed commodities, but there are no homeless people and, despite hassles, everyone seems well-fed with good access to basic health care. Each family is allowed about one chicken every two weeks. Two years ago such shortages were unknown, but an abundance of new gardens in yards and empty lots around the city suggests that Cubans are rising to meet the crisis of this “special period,” as the post-Soviet era is called. Still, even under the current economic difficulties, every child and elderly person is guaranteed a liter of milk, every day.
The flip side of the material shortages is the phenomenal strength of the Cuban disabled people’s social organization.
Cuba’s current predicament results in large part from exchanging one colonial relationship for another. In 1958, 79% of Cuba’s foreign trade was with the US. In 1989, 80% of Cuba’s trade was with the Soviet Bloc, and that has now all but disappeared. Meanwhile, the official United States trade embargo remains aggressively in place. In the past year, a large Swedish pharmaceutical company was visited by a US State Department official and told that if they wished to continue buying a US-manufactured filter that is essential to their business; they would have to discontinue all trade with Cuba. This company had been the main supplier of chemical stocks used by Cuba for the production of basic medicines like antibiotics. Ford of Venezuela was likewise prevented from shipping spare parts to keep up a fleet of aging buses used for mass transit. And Mexico, which allowed the Revolution to be launched from its shores, is kept from open trade in oil by Big Brother Uncle Sam.
In the midst of all this, what then is the state of disabled people in Cuba? Thanks to Global Exchange, † I arrived with the name and phone number of a North American woman who had married a Cuban and completed medical school in Havana. Michelle Frank was on parental leave, and generously offered to spend some time connecting me up with ACLIFIM, the Cuban disabled people’s organization, and with the national prosthetic center.
† Global Exchange is a San Francisco-based nonprofit organization that promotes citizen-to-citizen educational exchanges of various sorts between the Third World and the US. It has organized speaking tours in the US by Cuban physicians and other speakers, and also sponsors “reality tours” to Cuba. For more information on this excellent group, contact
2141 Mission Street
San Francisco, CA
When we arrived at ACLIFIM, the first person I met was Angel Pla, who was riding one of Ralf Hotchkiss’ Whirlwind wheelchairs. † † Pla had been given his Whirlwind by a visiting Nicaraguan delegation two years before. His was the only Whirlwind in Cuba, and his entire efforts of late have been directed towards establishing a shop to make this chair for other Cubans. I had spoken to Ralf shortly before I left the US, and was pleased to facilitate the opening of a channel that will lead to a teaching visit by Ralf himself. I later spent two days with Pla at his shop-to-be, which, like much of Cuba, is in a strange limbo. Two years ago they received a $60,000 grant, and now have a facility filled with welders, metal benders, a lathe, and necessary hand tools, but in the wake of the “special period,” they lack many essentials like electrical cord to hook up this equipment and such simple supplies as hacksaw blades.
† † Ralf Hotchkiss is a Bay Area engineer who designs state-of-the-art wheelchairs, which can be built and maintained by appropriate technology shops anywhere in the world. In 1989, Ralf was awarded a MacArthur Fellowship in recognition of his work. Ralf has been an active collaborator in the efforts in Ajoya for many years, and was instrumental in the creation of the PROJIMO wheelchair shop. He is also a member of the Hesperian Board of Directors.
The flip side of the material shortages is the phenomenal strength of the Cuban disabled people’s social organization. I had landed in the national office of ACLIFIM, but there are also state and local entities. A few days later, Pla and the current national president, Ida Hilda, invited me to the annual meeting of their local ACLIFIM group, which is one of eight local groups in Havana. Local groups operate sheltered workshops for some of their members, and these specialize in producing goods made from recycled materials. The local organization also helps members with special needs and accessibility problems to find appropriate housing and necessary aids. On our way to the meeting, Pla took me to see a cultural center also run by ACLIFIM, which offers art and music classes and fosters a social hub. In this time of great scarcity, ACLIFIM has several new motor vehicles and a relatively generous fuel ration to see to its members’ needs. (In Cuba, as in most other countries, transportation is a great problem for disabled people.)
My initial visit with Michelle to thenational prosthetic center was also excellent. It was agreed that I should return for an entire day, to tour the facility and meet with the prosthetic staff of Cuba-RDA. The RDA stands for the German Democratic Republic, as East Germany used to be known, and this facility and the skills practiced there are a gift from the East German people to Cuba.
What I saw was like a look backwards in time to prosthetic practices and skills long since abandoned in Western Europe and the US. It is a remarkable shop, or perhaps one should say factory, with fifty or sixty workers, highly productive and adept at some of the most challenging prosthetic limb applications. The basic technology here is wooden legs, and they are very good ones. Crafted by practitioners who have an excellent understanding of anatomy, the legs are quite light and functional, and the amputees I saw were doing very well with them.
The prosthetists were wonderfully open, and enthusiastically examined and discussed my artificial leg, with its thermoplastic socket based on a `narrow M-L' (mediallateral) design, which departs radically from the `quad' (quadrilinear, i.e., `square box') they build. They were also fascinated by the lightness and flexibility of my energy storing carbon fiber (Flex Foot T.M.) lower leg. Their intelligence and level of education were impressive. I asked what would happen when they ran out of supplies no longer available to them from East Germany, like the laminated wood blocks from which they carve their sockets. They smiled and said that they would simply have to develop their own “Cuban” solutions.
There is a great deal of pride in the Cuban people. More than once people explained to me that the Cuban Revolution was not 30 years old, as we in the US tend to think, but rather, it is 100 years old. It dates from José Martí’s return to Cuba after fifteen years in New York and Tampa, Florida. He had gone north to learn about democracy, but left when it became clear to him that wealth was the true engine of societal values in the United States. He returned to Cuba in 1895 determined to work for a society based on true “values,” and was killed a few months thereafter, that same year. Despite the scarcity, the long lines, and the “imminent collapse” of things which we hear predicted daily in the US media, again and again I met Cubans who remain dedicated to building the society based on values that Martí died for.
One day I realized that my visa expired three days before my return plane reservation. I inquired at my hotel and was told that I should go to the Habana Libre Hotel (the Hilton before the Revolution), where there was a visa office. As a foreigner, one must take only special taxis with dollar meters, so I hopped into a `Turistaxi' and headed for the hotel. The driver and I fell instantly into a heated discussion of the arts and society, and when we arrived in front of the old Hilton he stopped and turned off the meter, and we continued our conversation. After about ten minutes, a very large and stern-looking uniformed doorman walked up and said to Hiram: “What do you think you’re doing? You can’t park here ….” to which Hiram replied: “Hey, I’m talking to my friend.” A big smile crossed the doorman’s face, and he walked away shaking his head. I told Hiram that I didn’t want to get him into trouble, and suggested that perhaps he needed to go. No, Hiram replied, there was no place he could go that was more important than the conversation we were having.
Inside, the woman at the visa office laughed when I showed her my visa and my return ticket. It was only three days, nothing I should worry about. What reasonable person would be troubled over such a small discrepancy, she wondered?
Later, thinking about my friend and driver, Hiram Espejo (espejo is the Spanish word for mirror), I realized that what was most wonderful about him was that he was not defined by his job. He could have been, but he wasn’t. So too, with disability: anyone can be defined by it, or anyone can choose not to be.
The efforts of the independent living movement in Cuba deserve our consideration and support. The folks at ACLIFIM are especially interested in enabling visits by disabled people from the United States to promote citizen-to-citizen understanding. The marvelous culture and character of the Cuban people have much to teach us about dealing with change and fostering a society based on true values.