Building Partnerships Beyond Borders: Empowering the Vulnerable
The Annual Conference of the New York State Occupational Therapy Association, Aug 27, 2006
In August, 2006 David Werner was invited to speak at the Annual Conference of the New York State Occupational Therapy Association, held at the United Nations headquarters in New York City.
The theme of this year’s NYSOTA Conference was Building Partnerships Beyond Borders, with a special focus on “Empowering the Vulnerable.”
Sociopolitically, human beings tend to align themselves somewhere on a continuum between two poles: those who want to control other people, and those who prefer to relate to others as equals. Likewise, the so-called “helping professions” can be approached in ways that are domineering and disempowering, or in ways that are expansive and enabling. Despite their ideology of “service,” the health professions today tend to be dominated by the superior, disempowering side. The prevailing biomedical model focuses on illnesses of individuals rather than on collective well being. It tends to be elitist. Its costly interventions are least accessible to those whose needs are greatest.
Where does Occupational Therapy Fit into this Larger Picture?
Because OT deals with how people function in their environment and community, it strives to take a more comprehensive, holistic (whole-istic) approach. Rather than emphasize biomedical intervention, it focuses on underlying social and community concerns, at least in theory.
In practice, however, the OT profession too often falls short of its more holistic, egalitarian goals. And as with the other health professions, the poorest and neediest often fall between the cracks. In our increasingly globalized free market economy, there is no such thing as a free lunch. You get what you can pay for.
There is, however, a grassroots revolution taking place within the field of Occupational Therapy: an attempt to orient the profession away from the biomedical focus and more toward social justice, equal opportunities, and human rights, with less emphasis on changing the disadvantaged individual, and more on transforming unfair social policies.
It is perhaps fitting that this focus on social justice is spearheaded by a group of occupational therapists in South Africa, where the fight against discrimination and exclusion has a long history. To this end, OTs Frank Kronenberg, Salvador Simó Delgado, and Nick Pollard have edited a groundbreaking book: Occupational Therapy Without Borders: Learning from the Spirit of Survivors. The book includes a Foreword by David Werner.
Partnerships for Empowerment In Occupational Therapy: Keynote address prepared by David Werner for the NYSOTA Conference, August 2006
Abstract: The speaker evokes the health goals formulated by WHO and UNICEF at the Alma Ata Conference during the last quarter of the 20th century. He points out that these goals, such as “Health for All by 2000,” have not been realized. In fact, in many ways we have lost ground. He makes the point that much of the lack of progress can be attributed to a globalized economic system driven by greed rather than need. Based on his experience as a health-worker in Mexico, he identifies three levels of intervention for the occupational therapist—which he designates as the “curative,” the “preventive,” and the “sociopolitical.” Using examples from his work life he shows why interventions on all three levels are needed if one wishes to address the problems of people with disabilities in an effective and comprehensive manner. He then goes on to discuss the kinds of partnerships that are needed at each level. For the occupational therapist who is seriously interested in the well-being of marginalized persons, it is essential to work on all three levels.
Introduction
One of the goals of Occupational Therapy is social inclusion. Yet, like most of the so called “helping professions,” Occupational Therapy can be practiced in either an inclusive or exclusive way. Which way, depends not only on whether or not services are equally accessible to all, but also on whether those receiving the services participate in decision making on an equal basis.
Health has repeatedly been declared a fundamental human right. In 1945, when the United Nations declared that access to health care was a basic human right, the World Health Organization (WHO) made the implementation of that right even more challenging by defining health as “complete physical, mental, and social well-being, and not merely the absence of disease.”
In 1978, WHO and UNICEF held a global congress at which the nations of the world subscribed to the Alma Ata Declaration, committing themselves to “Health for All by the Year 2000.”
But the Year 2000 has come and gone, and in many ways humanity is farther away from the goal of “Health for All” than it was 30 years ago. In fact, health is no longer a human right. As the profiteering market economy becomes globalized, and health services are increasingly privatized, the gap between the rich and poor has been steadily widening, both between countries and within them. The swelling ranks of the world’s poor—those who suffer most from what Frank Kronenberg and his colleagues call “occupational apartheid”—are becoming even more marginalized.
What are the implications of this for Occupational Therapists, in terms of the larger picture? In societies such as Sweden, Canada, or Cuba—where health services are equally available to everyone regardless of their ability to pay— Occupational Therapy plays its part in contributing toward the goal of Health for All. But in an increasingly polarized society such as the United States, where 46 million people have no health insurance and where many health professionals consider it their right to charge more per hour than many low-wage workers earn in a day, Occupational Therapy, as it tends to be practiced, is often counterproductive. The disparity between who gets it and who doesn’t effectively widens the gap between the haves and have-nots. It deprives most those who desperately need to get back to work so they can feed their children.
In a Polarized Society Such as the USA, Occupational Therapy Often Doesn’t Reach Those Who Need it Most.
Today, despite continuing global economic growth—or perhaps because of it—we live in perilous times. The world’s ruling class shortsightedly pursues a paradigm of “development” designed to make the rich richer, regardless of the human and environmental costs. It is therefore extremely important that those of us in professions that focus on equity and inclusion step back from a myopic perspective on individual clients and look at the larger picture. For this reason, it is very encouraging to see pioneers in the field of Occupational Therapy trying to get at the root causes of what marginalizes many people from full inclusion in society and from having a voice in the decisions that determine their well-being. In the words of the Brazilian educator, Paulo Freire, the goal of every conscientious human being—and this certainly includes every Occupational Therapist who wants to do something more than apply Band-aids—is to work in a way that helps to “change the world.”
The Struggle for Health and Rights in Rural Mexico
For the last 40 years I have been working in the mountains of western Mexico, first with a community-based health program called Project Piaxtla, run by local villagers, and more recently with a Community Based Rehabilitation program, called PROJIMO, that grew out of the health program.
To a large extent, we, in both these community-based programs, “hizimos el camino caminando,” have made our own path by walking it. This was before WHO began promoting the concept of Primary Health Care and Community Based Rehabilitation. So a lot of what we learned we found out the hard way, through trial and error.
Over the first two decades of Project Piaxtla’s existence, the village health program evolved through three stages, or shifts in focus: from 1) curative care, to 2) preven- tive measures, to 3) sociopolitical action.
We began with curative care because none of us knew any better. If any of us had received formal training in public health we’d have known “anounce of prevention is worth a pound of cure.” But sometimes it helps to start off without preconceived ideas. In retrospect, starting with curative care made good sense, at least in terms of getting people eagerly involved in the program. A mother whose baby is dying of acute diarrhea doesn’t want to be lectured on how to prevent diarrhea. She wants immediate affordable treatment that can save her baby’s life. After the baby recovers the mother will be more open to ideas for preventing another episode.
So the project started by having promotores de salud (health promoters) help mothers to treat common problems: like diarrhea, respiratory infections, anemia, and the common complications of childbirth. With these few simple home-based measures, child and maternal mortality began to decline.
But as their curative skills increased, both the promotores and the mothers became increasingly concerned that many problems, diarrhea, for example, kept coming back again and again. So little by little the program’s focus shifted from curative care toward its second stage: prevention. This included everything from the introduction of latrines and clean water systems to vaccination against the contagious diseases of childhood (such as polio, tetanus, diphtheria, whooping cough, and measles ).
In this second, preventive stage of the program, child mortality dropped to an even lower level. But still not low enough. Many children, especially from the poorest families, continued to die. In analyzing the situation, it was evident that one of the big causes of the illness and death of young children was malnutrition, or more accurately under nutrition. Many children simply didn’t get enough to eat. The promotores launched a program to teach mothers how to better feed their children, with more frequent meals and higher calorie diets. Yet mothers complained that they’d been lectured at for years about “better nutrition.” The problem, they said, was that they just didn’t have enough food, or the money to buy it with. This gave rise to the big question: “But why?”
Trying to find answers to “But why?” led to the third stage of the health program, with its focus on collective socio-political action. The health promoters brought groups of farm workers, mothers, and even schoolchildren together to conduct a “community diagnosis.” Using “flannel-graphs” with hand drawn pictures to represent different health-related problems, they analyzed the root causes of their most pressing grievances, explored how they interrelated to one another, and then decided on specific collective actions that had a reasonable chance to succeed. In this way they confronted a wide range of issues. To combat the usurious interest rates that big landholders charged tenant farmers for loans of grain at planting time, the health team set up a “cooperative corn bank.” To confront the harmful drinking habits of the men, village women organized to close down the local cantina (bar). In order to explore the more controversial social issues with the entire community, the health workers used teatro campesino participativo (participatory farm workers’ theater). (For this my earlier training in theater came in handy.) Examples of some of the skits performed, the resulting collective action, and the reaction of the local power structure, can be found in the book Helping Health Workers Learn. (Available online at www.healthwrights.org)
With each of the program’s three stages or shifts in focus—curative, preventive, and sociopolitical—the overall health of the population improved, as indicated by the drop in child and maternal mortality. Yet the biggest health impact came through the third stage: that of sociopolitical action. Poor families came together to discuss their afflictions and plan a course of action. More by good luck than foresight, they began with some of the less confrontational obstacles to health, such as putting in a village water system, and starting a low cost cooperative store. With their marked success on these less volatile issues, they began to gain confidence in their collective ability to tackle larger, more challenging concerns. At last they mustered courage to confront the biggest threat of all to their health, the systemic violation of their constitutional land rights. Not surprisingly, this led to an angry—and at times violent— response by the big landholders, police, and soldiers. Tragically, two health workers were killed by state police (one was my god son). But in the end the local peasant organization, initiated through the health program, succeeded in invading over half the illegally large landholdings, and then demanding its official redistribution to landless peasants.
The health outcome of this redistribution of farmland was impressive—at least while it lasted. By the late 1980s, in the mountain villages, child malnutrition had declined impressively and the mortality rate of children-under-five had dropped from 340 per thousand (or 1 in 3) to between 50 and 70 per thousand. This, of course, is still high compared to Cuba, which is equally poor. Nevertheless, the decline in mortality was impressive. When visitors asked a group of village mothers how they explained the better health and survival of their children, the mothers answered proudly, “Available low-cost treatment made a big difference. The preventive activities we take part in made an even bigger difference. But what made the biggest difference of all to our children’s health was our organized lucha [struggle]—for land redistribution, and for other basic rights, so our children could get enough to eat.”
Unfortunately, in the 1990s many of these gains were reversed. The improvement in children’s health and survival in the Sierra Madre, as in Mexico as a whole, came to a halt; for several years malnutrition and child mortal- ity actually got worse. One big reason for these reversals was NAFTA, the North American Free Trade Agreement, an accord between the United States, Canada and Mexico strongly influenced by powerful corporate interests. NAFTA has contributed in many ways to widening the gap between rich and poor, both in the US and Mexico. In preparation for NAFTA, Mexico was required to change its Constitution and annul the Agrarian Reform laws that had protected the land rights of poor farmers. Also, with NAFTA, Mexico”s protective tariffs were lifted, which led to massive imports into Mexico of surplus grain and livestock from the US. Produced by giant agribusiness, this surplus was heavily subsidized by the US government. Because of these multi-billion dollar subsidies, the surplus produce is sold in Mexico at prices far too low for small Mexican farmers to compete against.
As a result of NAFTA’s various policies, over 2 million impoverished farmers were forced from the countryside to Mexico’s mushrooming urban slums. Unemployment soared, real wages fell, and a wave of crime, violence, drug trafficking, and kidnapping swept the country. Under such dire conditions, growing numbers of young men sought illegal temporary employment in the US. Far away from their wives and girl friends, many had sex where they could find it. And some got hooked on injectable drugs. So when these young men returned to their loved ones in the towns and villages of Mexico, the incidence of HIV/AIDS increased.
Within a decade, the effects of NAFTA transformed Mexico’s population from primarily rural to 65% urban. Many villages of the Sierra Madre became ghost towns. Kidnappings and gunfights between rival drug gangs, the military, the police, and corrupt narcotics enforcement agencies led to a mass exodus from the village of Ajoya, which for decades had been the base of the village health and rehabilitation programs. In 2001 a massacre at a Mother’s Day street dance in Ajoya was the final coup de grace. Project Piaxtla (the villager-run health program) no longer exists. Its demise can be traced to international policies far beyond its control. PROJIMO, the disabled-villager-run Community Based Rehabilitation program that grew out of Piaxtla continues to function, but has moved to a larger, safer village nearer the coast.
This long and in some ways paradoxical experience in the Sierra Madre has taught us many lessons. One of the most painful ones is that health, even in the most remote village and despite the valiant effort of local people to improve their collective wellbeing, is still vulnerable to outside forces far beyond local control. The continuing concentration of wealth by the potentates of today’s globalized economy makes the poor of the world even more vulnerable. For marginalized people to gain a voice in the major decisions that affect their lives, a whole new level of partnerships and cooperation is needed.
The Three Levels of ‘Partnership for Empowerment’
More than 11 million children die every year from easily preventable causes. Over 60% of those deaths relate to malnutrition. But equally tragic, for hundreds of millions of other impoverished children, their physical and mental development is stunted by a combination of malnutrition, lack of basic health care, unfair social policies, and a disabling environment.
Our elected leaders choose to perpetuate this cruelly lopsided and unsustainable world order because of their pathological hunger for wealth and power. But this situation can’t go on much longer. Our choice is between equity and extinction.
For those of us concerned with the well being of humanity and the planet—as well as meaningful occupation for disabled persons—we need to engage in “action for change” on 3 levels. These 3 levels, which relate respectively to short-term, intermedi- ate, and long-term needs, correspond to the 3 stages in the evolution of Project Piaxtla in Mexico, i.e.: Curative Care, Preventive Measures, and Sociopolitical Action.
The objectives of these 3 levels of “action for change” are:
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to cope: help people in immediate peril take stopgap measures to survive and live the best they can in difficult and unfair circumstances.
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to reform: to work for improving the circumstances under which disadvantaged people live; e.g. making sure that existing democratic structures, welfare policies, and “safety nets” work to protect the most vulnerable.
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to transform: to revolutionize the overarching unjust socioeconomic and political paradigm so that policies and accords at the local, national, and global level are egalitarian, inclusive, and sustainable.
These 3 levels of action are not—or should not be—mutually exclusive. For those of us who would be “agents of change,” our challenge is to try to work toward all three levels at once.
Level One—To Cope
As persons concerned with fairness and inclusion, when we go into an impoverished community, our first response will be to help the most vulnerable cope with the immediate threats to their survival and well-being. But the manner in which we offer our assistance is critically important. We can do it in ways that are authoritarian, condescending, and disempowering. Or we can do it in ways that are empathetic, egalitarian and empowering. The empowerment of disadvantaged people is facilitated by the process of working together as partners and equals in the problem-solving process. Through working together in an atmosphere of mutual respect, people gain the self-confidence and skills to stand up for their rights, and they recognize the need to join together to insist on the respect, inclusion, and equal opportunities that they all deserve. The effectiveness of an egalitarian problem solving approach is well illustrated in the example given in “Crutches for Pepe” in Disabled Village Children, or click here
Level Two—To Reform
The Need for Solidarity. When we go beyond individual assistance to the second level—that of social reform—a more extensive, collective form of partnership is needed. Concerned members of a village or community—or perhaps those in a group of villages or communities—need to join in solidarity and take action. In certain circumstances, some degree of partnership or cooperation can be sought from official leaders and decision-makers. But caution is needed in entering into partnership with those who have disproportionate power. As Martin Luther King made clear, “History is the long and tragic story of the fact that privileged groups rarely give up their privileges voluntarily.” For this reason the disempowered need to find strength in numbers.
It is important that change-agents uphold efforts by the marginalized to form partnerships—that is, to work together in an organized way—to take collective action for equal opportunities and rights. This is true whether it be a group of landless peasants struggling for their land rights, or a group of parents insisting that their disabled children be admitted to the local school, and treated with respect.
Small is beautiful. But sometimes big is essential. Collective action for fairer conditions can start very modestly and gradually grow to include a wider base. In this way the “partnership for change” expands to a whole new level, with a wider, stronger base.
The need for changes in education. Too often schooling functions as a weapon of the ruling class for obedience training and social control. To build a more inclusive and equitable society, schooling needs to become a less oppressive and more liberating process. It needs to enable children to think for themselves and to help one another with their learning, so that they become agents-of-change in building a fairer, kinder world.
Reform of the school system is one of the tacit goals of the so-called Child-to-Child program. Child-to-Child is a “discovery based learning” methodology, now practiced in more than 60 countries. In adventurous, hands-on ways, school-aged children learn how to respond appropriately to the health and development needs of their younger brothers and sisters. They also discover the satisfaction of interacting in friendly, inclusive ways with a child who happens to be disabled or “different.”
Our schools do not teach children to ask the most urgent questions about the things that most determine their lives and mutual well-being. On the contrary, most schools the world over employ top-down teaching methods and course content designed to maintain the pecking order of the status quo. And so the schools churn out obedient citizens who goose-step to authority and accept their place on the established inequitable social ladder.
Students need to learn to seek out accurate information, engage in critical thinking, and draw their own conclusions about the perils we collectively face, and they must discover the joy of working collectively for the common good. Until citizens accomplish these educational goals our so-called democratic institutions will remain a sham. Worse than a sham! Our rulers’ shortsighted dogma of growth at all costs is not only polarizing human society but also upsetting the balance of the ecological systems on which all life depends. As an endangered species on this endangered planet, our continued existence depends on our rediscovery that we can all live in partnership with one another and with all the great diversity of living things, in harmony with the natural checks and balances of the world’s ecosystems.
Level Three—To Transform
Globalization has produced global problems that require global solutions. At this level, far-reaching, comprehensive partnerships, or coalitions, are needed to help build a new, more truly democratic and inclusive economic order for a healthier, friendlier, more sustainable world. Today the polarizing forces of the globalized economy are so overpowering that, even in isolated villages, advances toward better living standards and fuller inclusion are often cruelly reversed. The set backs we saw in Mexican villages due to NAFTA are being repeated in many parts of the world. In the struggle for “Health for All” at the global level, new partnerships are needed to bring together a wide range of actors, including community based programs, human rights organizations, environmentalists and corporate watchdog groups from all over the world.
Fortunately, a number of such regional and global partnerships are currently taking shape. Within the health sector, some of the most active international networks and coalitions began as small, local collectives of community health and rehabilitation initiatives. The example I am most familiar with, of course, is Project Piaxtla in Mexico and the books that grew out of that experience, namely Where There Is No Doctor and Helping Health Workers Learn. This project and these books played an important role in the formation of PRODUSSEP, an association of non-government community health programs throughout Mexico. The partnership process continued to expand and in time grew beyond Mexico. PRODUSSEP participated in the formation of the “Regional Committee of Community Health Programs,” a coalition of the national associations throughout Central America and Mexico. This regional partnership was formed in the 70s and 80s when there was so much brutal repression and popular uprisings in Central America.
Similar to the situation in Central America, popular struggles for liberation from social injustice were taking place in many countries around the world. In many of these beleaguered nations, networks or partnerships of community-based health programs played a key role in awareness raising and mobilization of the marginalized underclass in defense of its health and rights.
As the years passed, an informal network began to take shape between health workers and programs on different continents, especially in places where marginalized peoples were struggling for more representative, health-conducive governance. The desire to share practical and empowering teaching methods led to some exciting exchanges between village-level health workers from these countries, as well as an intensified sense of solidarity. It became increasingly apparent that the struggles for “Health for All” in Central America, the Philippines, India, South Africa and elsewhere had much in common. There was a felt need for new, broader international partnerships focusing on the politics of health.
To this end a meeting of community health educators and activists from Asia, Africa and Latin America was held in Managua in December 1991. The outcome was the formation of the International People’s Health Council (IPHC), which subsequently held meetings in South Africa, Palestine and Malaysia. The IPHC, in turn, was a guiding force in the planning and organizing the first People’s Health Assembly (PHA), held in Bangladesh in December 2000. The PHA was attended by 1500 community health workers and activists from over 90 countries.
Out of the first People’s Health Assembly grew the global grassroots coalition called the People’s Health Movement (PHM). The People’s Health Movement now takes part in the annual World Health Assembly where the World Health Organization of the UN brings together the Health Ministers of the member countries. To this gathering of high-level government and international authorities, the People’s Health Movement adds a critically needed voice of the people. [See www.phmovement.org]
The prospects for involvement in this empowering process of “globalization from the bottom up” presents the challenge of a lifetime for occupational therapists who want to make a far-reaching difference in the enablement of excluded persons.
An Important Book for the Rights and Inclusion of Those Who are Marginalized: Occupational Therapy Without Borders: Learning from the Spirit of Survivors
Occupational Therapy Without Borders: Learning from the Spirit of Survivors is a major international endeavor, featuring over 60 contributors from clinical, educational and survivor perspectives. It is a rights-based approach that provides a snapshot of a whole movement that is sweeping through the profession. Through critically exploring occupational therapy’s professional concern with what people fundamentally ‘do’ to make their lives meaningful, the authors give practical examples that look beyond the narrow confines of the health and social care environment in which many of its members work. It directs a focus to improving the lives of the neediest people within society by working with whole communities, not just individuals.
ISBN 0 4430 7440 490 pages / Elsevier-Churchill Livingstone. Available through Amazon.com
Foreword by David Werner
In the decades I have worked with PROJIMO, a community-based rehabilitation program run by disabled villagers in western Mexico, scores of rehab professionals have visited as volunteers—including physiotherapists and occupational therapists—primarily from “developed” countries. Nearly all have come with a desire to help those in need. Yet for all their good will, they differ greatly in how they view the world and their role in it. Some more or less accept institutionalized unfairness; others want passionately to change it.
“Occupational Therapy without Borders” is an indispensable tool for anyone who sides with the underdog. It is a treasure chest for agents of change and community-based facilitators in every field related to equitable and sustainable development.
Some of the visiting therapists surround themselves in the cage of their professional discipline and pride themselves in not venturing outside it. So meticulously do they slice up their “patients” that the village rehabilitation workers have jokingly concluded that PTs serve their clients below their bellybutton and Ots above. You see, most of the PROJIMO team are themselves disabled. They tend to look at those they assist not so much as patients but as friends. The great OT/PT divide strikes them as unnatural, even dehumanizing. Like dissecting the human heart to doctor the ambiguities of love.
Fortunately, however, some visiting professionals are different. On finding themselves in a wilderness of over whelming needs and possibilities, they dare to step out of their cages. They don’t relate to just a fraction of a person, but the whole. They don’t only look at people’s disabilities, but also their possibilities. They don’t look at the individual in isolation, but in context of the family and community. As outsiders, they don’t pretend they have all the answers. Rather, they join their clients as partners and equals in the problem-solving process. They don’t just lament the poverty and limitations in the village, but build on the unique resources, both physical and social. Like a magic harp, they play on the threads that link the needs and potentials of the individual, the community and the world. The goal of such therapists is the well-being of all. Like Martin Luther King, they have a dream: an all-inclusive dream.
Occupational Therapy without Borders is written by a motley assortment of occupational therapists from many lands, with a spectrum of perspectives and experience. Yet what they share is this all-inclusive dream: people coming together to build a healthier more caring local and global community.
Yet, though they be dreamers, they are also pragmatic. They have a wealth of hands-on experience, helping people learn to cope with enormous difficulties in innovative, daring, yet very civilized (and civilizing) ways. They place the realization of an individual’s potential in the context of the health of humanity and the planet. No man, woman or child is an island.
While the milieu of this book is occupational therapy, its scope is, in every sense, universal. The same spirit of striving to transform suffering and isolation into something beautiful and whole should be applied to every healing profession—and to the quest for peace and thereby survival of our troubled species on this ailing planet.
Update on PROJIMO
PROJIMO—which stands for “Program of Rehabilitation Organized by Disabled Youth in Western Mexico”—is now in its 25th year. Over the years the program has evolved and changed in many ways. Due to increasing crime and violence in the mountain villages, in the mid 1990s it moved its base from the remote mountain village of Ajoya to the more peaceful and more easily accessible village of Coyotitan, near the main highway an hour north of the coastal city of Mazatlan PROJIMO also split into 2 independent programs. The main PROJIMO “Community Based Rehabilitation Program” based in Coyotitan, and the smaller PROJIMO Work and Skills Training Program based in the village of Duranguito, some 20 minutes from Coyotitan. The main focus of the Duranguito program is making custom designed wheel chairs for disabled children.
What distinguishes PROJIMO from the vast majority of CBR (Community Based Rehabilitation) programs around the world is that PROJIMO is run and staffed by disabled persons themselves. The two coordinators of PROJIMO, Mari Picos and Conchita Lara, are both paraplegic. The official “President” of the program is Rigo Delgado, who is quadriplegic. The head of the orthopedic appliance shop, Armando Nevaro, had polio and uses leg braces. And the new head of the prosthetic shop, Alberto, is a young amputee who first began learning how to make artificial limbs by helping make his own.
Indeed, nearly all the workers at PROJIMO first came for their own rehabilitation, and then decided to stay on, learn skills, and devote their lives to helping other disabled persons meet their needs.
Some of the disabled persons—or parents of disabled children—who have learned skills at PROJIMO and spent years there helping others, have gone on to start other programs in other areas. For example, two physically disabled young men who first came to PROJIMO for rehab in the mid 1980’s and then spent a year volunteering there, later started an urban CBR program in the state capital of Culiacan named “Mas Válidos” (which means More Valid, in contradistinction to “inválidos” or “minusválidos,” the common terms in Spanish, which mean invalid or less-valid.)
Likewise Gabriel Zepeda, a disabled wheelchair builder who helped start and coordinated the PROJIMO children’s wheelchair program in Duranguito, has helped get several other cooperative wheelchair shops started in other parts of Mexico and Guatemala. He is currently helping start a wheelchair-building shop in Tepic, Nayarit (the state south of Sinaloa, where PROJIMO is based)
Each one teach one. One of the understandings that PROJIMO tries to have with its workers is that before they move on to start new programs or other activities, they train another person to take their place.
Marcelo Acevedo, for example, was one of the founders of PROJIMO. Disabled by polio as a child, Marcelo over the years became a highly skilled maker of orthopedic appliances and prosthetic limbs. Last January (2006), after more than 20 years with PROJIMO, Marcelo moved to Culiacan, where he now works with Mas Válidos in the shop making assistive equipment. But before he left PROJIMO, Marcelo trained Alberto to make prosthetics. And Alberto, in turn, is now training another young apprentice who, like Alberto, is an amputee who first came to PROJIMO to get his own limb.
Collaboration from PROSTHETIKA. Help with PROJIMO’s limb-making program over the last couple of years has come from ProsthetiKa, a small non-profit organization in Santa Rosa, California, run by Jon Batzdorff, a highly skilled prosthetist. Jon first visited PROJIMO as volunteer under the auspices of the Barr Foundation 3 years ago, and since then has been making yearly visits to help PROJIMO’s limb-makers upgrade their skills. He also obtains donated prosthetic components to help the program be able to provide limbs to those in need at low cost or virtually free. Jon will also be working with the PROJIMO team in making a series of education videos to teach amputees how to use their new limbs, and stay healthy.
To learn more about PROSTHETIKA see: www.prosthetika.org.
Each One Teach One: The Evolution of PROJIMO’s Workers
PROJIMO’s Influence on the Concept and Practice of Community-Based Rehabilitation
PROJIMO is increasingly known around the world, among those who work in the field of disability, for a combination of reasons. One reason is the books—Disabled Village Children and Nothing About Us Without Us—that have grown out of the PROJIMO experience, which have been translated into many languages and are now perhaps the most widely used guidebooks on CBR.
Another reason is that PROJIMO has lots of visitors. Many are students or professionals in different areas of disability rights and rehabilitation. Some of these visitors then go on to volunteer or work in other community rehab programs in countries ranging from Latin America to Asia and Africa. We get a lot of positive feedback from these former volunteers, who tell us how they are adapting ideas and methods to the situation where they are now working.
Yet another way of sharing experiences and approaches comes from the networks that are forming in different countries. PROJIMO has been one of the cofounders of the Red de Discapacidad y Comunidad (Network of Disability and Community) in Mexico. The Red will be having a groundbreaking Encuentro (Interchange) on CBR in Mexico City in January, 2007. Likewise, at a regional conference in Honduras last year, PROJIMO’s input was important in the formation of the Central American Network of Community Based Rehabilitation Programs, which will have links with the Red de Discapacidad y Comunidad in Mexico.
Still another way that the empowering methodology of PROJIMO is shared with other programs is through the hands-on workshops that David Werner facilitates in countries ranging from Ecuador, Bolivia, Columbia, Brazil, and Guatemala in the Americas, to India and the Philippines in Asia, to Iran in the Middle East, to Russia in Eastern Europe, to Kenya and Angola in Africa. This February David will be facilitating CBR workshops in the rural area near Capetown South Africa. Reports on David Werner’s CBR workshops in different countries can be found in the newsletters at www.healthwrights.org.
For several years David has also been teaching in an International CBR training program in Holland. (See www.enablement.nl)
Some of the PROJIMO staff have also shared their experiences in international conferences. For example Mari Picos participated in a conference of RESNA (The Rehabilitation Engineering Society of North America) where she shared ideas about meeting needs at low cost using local resources and skills.
In all of these exchanges with different programs and in different lands, the message that PROJIMO tries most to communicate is that the leadership of disabled persons and family members in disability-related work is of fundamental importance. When everyone works together in the problem-solving process, the results are likely to be better, and the disabled persons are more likely to be more fully included and respected.
The Importance of Disabled Persons Helping Each Other
Atilano, who is paraplegic, treats the pressure sores on the back of Moises. a 13 year old with spina bifida. Atilano lies on a gurney to keep pressure off his own pressure sores, on his butt. Moises now lives at PROJIMO and attends the village school. His sores had long since healed, but formed again in the hospital, where he recently had the shunt in his brain replaced. Atilano, a farm worker from Oaxaca, was very depressed after his accident, but has found a new purpose in life helping others at PROJIMO.
From Politic of Health: Is the unconstitutional ‘Military Commissions Act’ a Window of Opportunity?
The heavy-handed abuse of power by the US is hardly new. The US foreign policy has for some time been driven by the desire for empire, oil and the maximization of profits for multinational corporations. Toward these ends it has not hesitated to initiate illegal wars, assassinate whomever it chooses to, use terror in a carefully studied and systematized manner, deliberately insert misinformation into the press, torture its foreign prisoners (or turn them over to others for the purpose of torture) and undermine the rule of law in international affairs.
However appalling the actions of the US abroad have been, domestically the machinery of a free society has been, at least in some part, preserved. But with the passing of the Military Commissions Act on 9/28/06 the Congress of the United States put their final stamp of approval on the fascist * state that President Bush has been diligently laboring to create for some years now.
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Our government now has unlimited powers to spy on any and all of us.
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It can detain any of us at any time for anyreason it sees fit without justifying its acts to anyone.
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It can place us in a secret prison.
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In that prison it can torture us, brainwash us, subject us to the most humiliating and degrading circumstances, and kill us.
The Military Commissions Act has made the institutionalized violation of basic human rights within this country more overt and autocratic than ever before. This situation is made more ominous by the fact that Kellogg Brown & Root, a Halliburton subsidiary, is currently constructing a huge facility at some secret place within the US—a facility that will have the capacity to hold tens of thousands “enemy combatants.” It must be kept in mind that an “enemy combatant” is anyone that the president or any of his appointees label as one for what ever reason they deem fit.
* The 1983 American Heritage Dictionary defines fascism as “A system of government that exercises a dictatorship of the extreme right, typically through the merging of state and business leadership, together with belligerent nationalism.”
This escalating abuse of power and suppression of constitutional rights by the Bush Administration has also opened a window of opportunity for massive awareness raising and change. The blatant disrespect of the current government for the Bill of Rights and the Geneva Convention, together with the trampling of democratic principles (even to the extent of tampering with the electoral process) are now so flagrant that they provide us the very weapons we need to awaken, inform, and mobilize the public. Ironically, therefore, the task of creating a fairer, more sustainable social order is not only more urgent, but potentially easier.
“Fascism should more properly be called corporatism, since it is the merger of state and corporate power.” —Benito Mussolini
I remember visiting South Africa in 1988, during the last years before the end of apartheid. Things seemed to be going from bad to worse. The police state was becoming more and more repressive, and the violations of basic rights were more brutal and ubiquitous. I had been invited to South Africa by NAMDA (the National Alternative Medical and Dental Association) which had split off from MASA (the Medical Association of South Africa) after MASA defended the doctors who had tortured to death the antiapartheid activist Steve Biko. In those days the social progressives whom I met in NAMDA and the ANC were deeply discouraged. The harder they fought for their rights, the worse the repression.
Many felt their long struggle for a social justice and equal opportunity was hopeless. But at a national meeting of NAMDA in Cape Town, an ANC leader who had just been released after years in prison told the discouraged audience not to give up. He pointed out that the increasingly brutal repression by the state was a sign it was losing control. The cruel inequities had deepened the gap between the privileged and the oppressed to such an extreme that it took increasingly belligerent measures to maintain social control. And the harsh policing of the underclass was now becoming counterproductive, causing more and more people to rise up and resist. “So don’t lose heart,” said the speaker. He predicted that the extreme injustice of the system had set the stage for its own collapse. And of course he proved to be right. Six years later the apartheid government was ousted and replaced by the far more democratic, people-centered government of Nelson Mandela.
The situation in the USA today is in many ways quite different from South Africa during apartheid. But there are similarities. Institutionalized disinformation plays a huge role in the process of social control. Today most Americans have little understanding of what the real issues are that jeopardize their well-being and the future of their children.
As wealth concentrates in fewer hands, as social unrest, crime, and violence increase, as the prison population continues to grow, and as climate change and environmental deterioration increasingly compromise the well being of the majority, the stage is being set for the sweeping socio-political changes that are needed to set the United States—and consequently, perhaps, the world as a whole—on a more genuinely democratic and sustainable course. The big question is, how bad do things have to get before they get better?—that is to say, before enough people wake up and elect leaders who strive for the common good?
I suspect the situation in the US and globally will get pretty bad before the big awakening takes place. As I see it, the greatest dangers are environmental demise and the continued proliferation of nuclear weapons. In the near future ecological imbalance and global warming may reach a tipping point beyond which there is no stopping it, and the planet is likely to enter into another Age of Mass Extinction. Similarly, we could trigger such a Mass Extinction through the use of nuclear weaponry.
It is urgent that all of us who are concerned for the future well-being of humanity and the planet do whatever can be done to speed the process of awakening, in order to build a truly democratic and sustainable social order.
Each of us can contribute to this awakening process. In large part it comes down to a process of information sharing and grass roots “progressive education.” Each of us who shares these crucial concerns can do something. We can talk to friends and neighbors; we can write eye-opening articles for the local paper, etc.
But such a piecemeal approach, while important, won’t change the ailing system. To have potentially larger impact, it is important that we join or help support those groups and movements that are striving to rein in the
powers that are undermining democratic process and endangering our future. For example, the American Civil Liberties Union (ACLU) has undertaken a major initiative to oppose the Military Commissions Act, and to educate the public as to how the current government is riding roughshod over the Bill of Rights, the Constitution, and our basic freedoms. Likewise the Union of Concerned Scientists is waging a major campaign against the unscrupulous way the current Administration is ignoring or denying scientific studies that confirm the perils of global warming. There are a great many other groups, movements, and coalitions of social activists and concerned persons who are working to raise public awareness about the growing abuse of power, and how it is violating our rights and endangering well-being.
In sum, we are currently at a low point in the United States in terms of social justice, equity and human rights. But this very injustice, and the hardship it causes, can be a trigger for awareness raising, solidarity, and organized action for change. For those of us who want to see the United States become truly democratic, and to become a leader in building a global community where all people’s basic needs are met and rights are respected, the time is ripe to take courageous action, individually and collectively.
What You can Find on the Politics of Health Website
- “Sexual Fascism in Progressive America”
- “Corporations Are People, Too”
- “I Can’t Kill Those Children”
- “Supermarkets and Service Stations Now Compete For Grain”
These are just a few of the stories you will find today on our Politics of Health web site.
We invite you to participate! Do you have a fresh perspective on a critical health issue? Submit it as an editorial! (The Military Commissions Act on this page (above) is featured as the current editorial.) What do you have to say?
Our new Radical Edge section features articles that go to the root of the issues. If you’ve written or know an article that illuminates those roots, please submit it!
Are you having a rocky but worthwhile discussion with someone on email? Consider bringing it to our forum and discussing it there.
Find us on the web at: www.politicsofhealth.org
Two Groundbreaking Videos on Disability!
These heartwarming, yet pragmatic stories show how, by working together and putting the disabled person at the center of the process, assistive devices can be tailor-made to better fit his or her needs.
Community Based Rehabilitation in India. In November 2005, David Werner visited India where he conducted CBR workshops in three regions. These workshops provided material for three new extensive slide shows, each narrated, detailing the interactive process of the workshop participants, the disabled individuals, and their families.
These are available on a single CD or DVD. Order the CD or DVD
from the flier insert with this newsletter.
Return to Life After Spinal Injury, is an award-winning DVD by Peter Brauer. This empowering Spanish language instructional video about spinal injury was conceived and produced for and by spinal cord injured persons themselves, as a graphic form of peer counseling. Filmmaker Peter Brauer spent 3 months working with the PROJIMO team as a collective learning experience for all. And because everyone volunteered their time and the filming was digital, the cost was remarkably low.
These disabled educators who have created this CD—ranging in age from 10 to 40—skillfully show how to prevent and treat pressure sores and urinary infections, how to avoid and correct contractures, and how to make low cost protective cushions, and assistive equipment. But above all they show how spinal cord injured persons can relearn the skills of daily living, find ways to earn a living, and re-enter the life of the community as active participants and leaders.
This astounding CD film will give a great boost to persons with recent spinal cord injury, to help them accept their disability and realize that they can still live rich and fulfilling lives.
Spanish, with English Subtitles: US$22 plus $3.00 shipping. Profits go to PROJIMO.
End Matter
Please Note! If you prefer to receive future newsletters online, please e-mail us at: newsletter@healthwrights.org
Board of Directors |
Trude Bock |
Roberto Fajardo |
Barry Goldensohn |
Bruce Hobson |
Jim Hunter |
Donald Laub |
Eve Malo |
Myra Polinger |
Leopoldo Ribota |
David Werner |
Jason Weston |
Efraín Zamora |
International Advisory Board |
Allison Akana — United States |
Dwight Clark — Volunteers in Asia |
David Sanders — South Africa |
Mira Shiva — India |
Michael Tan — Philippines |
María Zúniga — Nicaragua |
This Issue Was Created By: |
David Werner — Writing, Drawings, Layout, and Photos |
Jason Weston — Layout and Editing |
Trude Bock — Proofreading |
If you expect to see the final result of your work, you simply have not asked a big enough question.
—I.F. Stone