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:

1. to cope: help people in immediate peril take stopgap measures to survive and live the best they can in difficult and unfair circumstances.

2. 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.

3. 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.