Annual Conference of the New York State Occupational Therapy Association
New York, NY, August 27, 2006
Abstract:
David Werner 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 “socioeconomic.” Using examples from his work-life he shows why interventions on all three levels are needed if one wishes the 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.
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, in which they committed 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 incresingly globalized, the gap between the rich and poor has been widening, both between countries and within them. Likewise, as health services become increasingly privatized, they become less accessible to the poor. The swelling ranks of the world’s poor – those who suffer most from what the authors Occupational Therapy Without Borders call “occupational apartheid” – are becoming even more marginalized.
Even in the US, 46 million people have no health insurance. Often those who most need Occupational Therapy can’t get it. It’s priced out of reach.
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 is 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.
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.”
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, in both these community-based programs, hizimos el camino caminando: we made our path by walking it. We started 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) preventive measures, to 3) sociopolitical action.
The 3 books that have grown out of this experience – Where There Is No Doctor, Helping Health Workers Learn, and Questioning the Solution: The politics of Primary Health Care and Child Survival, more or less correspond to these 3 stages.
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 “an ounce 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 promotores de salud (or village health promoters), through “learning by doing” started by helping mothers to treat common problems: like diarrhea, respiratory infections, anemia, and the common complications of childbirth. Technology was kept simple and appropriate. 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 immunization against the contagious diseases of childhood, to introduction of latrines and clean water systems.It included communal gardens and other measures to improve nutrition. And it included participatory learning methods and simple home-made teaching aids and instruments to help improve maternal and child health. Through Child-to-Child activities, school children were involved in collective action for community health.
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 undernutrition. 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 “chain of causes” leading to 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. They helped understand the vicious cycle between diarrhea malnutrition. And through “discovery based learning” they used a gourd baby to help school children learn about dehydration and how to prevent and treat it.To learn the importance of breast feeding and the dangers of bottle feeding the schoolchildren used “participatory epidemiology” to study this in their village – and to realize how big corporations like Nestles exploit poor people to increase their profits.
By working together the villagers confronted a wide range of issues. To combat the exploitive interest rates that big landholders charged tenant farmers for loans of grain at planting time, they started a cooperative farm. And 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).
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.
After successfully confronting some of the less politically volatile underlying causes of poor health, the village health team in partnership with the landless farmers mustered the courage to confront the biggest threat of all to their health: the systemic violation of their constitutional land rights.Because the best farmland was illegally held by a few wealthy land barons, the landless farmers either had to work as share croppers, or plant the steep hillsides by the slash and burn method. Either way was slim pickings. So the peasant farmers joined together to demand 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 of those killed was my godson). 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. During a 10 year period, they managed to divide up over half the unconstitutionally large holdings and relocate the land to landless peasants.
The impact on health of this united action was impressive. With each of the village health program’s three stages, or shifts in focus – curative, preventive, and sociopolitical – the overall health of the population improved, and both child and maternal mortality declined. Yet everyone agreed that the biggest health improvements came through the third stage: sociopolitical action – especially the redistribution of farmland. This had a huge impact on health because it meant poor people had more to eat.
By the late 1980s, in the mountain villages, child malnutrition had declined substantially. Mortality of children-under-five had dropped from 340 per thousand (or 1 in 3) to between around 50 per thousand. This, of course, is still high compared to Cuba, which is equally poor. Nevertheless, the decline in mortality and improvements in health were impressive.
When visitors asked village mothers how they explained the better health and survival of their children, the mothers answered proudly, “Low-cost treatment made a big difference. The preventive activities we take part in made an even bigger difference. But what has made the biggest difference to our children’s health was our organized lucha [struggle] for land redistribution, and for our other rights, so our children can get enough to eat.”
As you can see, the story of Piaxtla, the community health program rural Mexico, has been one of the struggle of disadvantaged people for equal rights and opportunities.
Out of Piaxtla, in the early 1980s, grew a community rehabilitation program, called PROJIMO, run by and for disabled villagers. PROJIMO is the friendly term for neighbor in Spanish. It is also an acronym for Program of Rehabilitation Organized by Disabled Youth of Western Mexico.
PROJIMO came into being in a very “organic,” user-centered way. As Piaxtla, the village health program evolved, some villages selected disabled persons to train as health workers. They did this not because they had high expectations of these disabled persons, but because everyone else was too busy. With the passing years, however, who turned out to be the most committed and hardest working health workers? Often the disabled ones. This was, of course, understandable. Before becoming health workers, these disabled persons often were marginalized and seen as having little value. But as health workers they became centrally important to the life and wellbeing of the community, and gained respect. Having previously been undervalued themselves, their hearts went out to others who were vulnerable or disadvantaged. Thus by becoming health workers, their weaknesses became their strength.
Because PROJIMO is run and staffed by disabled persons themselves, the team often shows more empathy and understanding – and provides higher quality, more appropriate services – than do many other CBR programs, where typically most leaders and workers are non-disabled. PROJIMO seeks a balance between the social and technical aspects of rehabilitation. To encourage interaction between disabled and non-disabled children, PROJIMO invited the school children to build a rustic “Playground for all Children” Village children are often involved in helping with the therapy and helping make assistive devices for other children.
PROJIMO produces a wide range of relatively low-cost assistive devices.These include low-cost but highly functional orthotics and prosthetics. The first limbs were made with bamboo, using a technology developed by Handicap International in Thailand. But later they began to make modern fiberglass and resin prosthetics. Low-cost, high quality “all terrain wheelchairs” are made by wheelchair riders who understand the needs of others from personal experience.
They start by evaluating each child. Then they construct a custom-designed wheelchair, and adapt it to the child’s individual needs and possibilities.Because staff and technicians are themselves disabled, they tend to relate more as equals with the persons they assist, and to work with them as partners in the problem-solving process. The quality of the equipment they make is often so good that the government “Center for Rehabilitation and Special Education” in the state capital has contracted with PROJIMO’s team of disabled workers to make prosthetics and orthotics for their clients. Also a partnership developed in which PROJIMO helped the government center set up 13 small community-based rehab centers, one in each of the state’s municipalities.
PROJIMO tries to combines the strengths of Community Based Rehabilitation with the strengths of the Independent Living Movement, and at the same time avoid the typical weaknesses of each. CBR’s strength is that it tries to reach out to all who need assistance, especially those in underserved areas or greatest need. Independent Living’s strength is its strong leadership by disabled persons and its outspoken advocacy for equality and inclusion. PROJIMO recognizes that the disabled child has the same needs as all children, for play, adventure, opportunities to help in the home, personal relationships, and a role in the life of the community.
PROJIMO also recognizes that the child basic needs come first – above all the need to get enough to eat. Too often rehab programs and workers, in their zeal to address the child’s disability, fail to address the most pressing needs, often related to poverty. UNICEF points out that one of the biggest causes of disability is malnutrition, either of the pregnant mother, or of the young child.
PROJIMO, during its early years, evolved through a series of stages similar to those of the village health program out of which it grew – that is from treatment, to prevention, to a more politically active, rights-based approach stressing equal opportunities, inclusion, and social justice for all. The two books that have grown out of PROJIMO reflect this trend. Disabled Village Children is largely an informational handbook about common disabilities and community based rehabilitation. By contrast, Nothing About Us Without Us focuses more on partnerships in problem solving, and need for disabled people to have a voice in the decision that shape their lives.
If we continue on our current path, the prognosis is not favorable. Human society on the planet today has many signs of far-reaching system failure – not unlike cancer where one part of the whole grows in an unregulated way destructive way at the expense of the rest.
Signs of far-reaching System Failure:
The gap between rich and poor is widening by leaps and bounds.
Wars are being declared because economic greed of the rich and powerful.
The economic model of development, committed to growth of the already-wealthy at all cost (the so-called free market) is contributing to everything from global warming to a renewed build-up of nuclear weapons.
Democratic decision making – despite the authoritarian rhetoric in its favor – is being undermined by short-sighted world leaders who put respond more the interests of the ruling corporate class above the needs of the people and the planet.
In view of these very major threats to health, the sustainability of everything – including small community-based programs – needs to be looked at with in this larger, globalized context.
What is it, then, led to the reversals in the health gains of the people in the Sierra Madre – and throughout Mexico? It was in large part due to these macroeconomic forces that in the 1990s many of the gains achieved by Piaxtla, the village health program, were reversed. And for similar reasons, PROJIMO, the disabled villager-run rehab program, also ran into difficulties.
In the mid-1990s the improvement in children’s health and survival in the Sierra Madre, as in Mexico as a whole, stagnated. For several years malnutrition and child mortality actually got worse. One big reason for these reversals was NAFTA (the North American Free Trade Agreement) the 1994 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 girlfriends, 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 drastically.
Within a decade, the effects of NAFTA transformed Mexico’s population from 60% 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 Piaxtla and PROJIMO were based for decades. In 2001 a massacre at a Mother’s Day street dance in Ajoya was the final coup de grace.
Today Project Piaxtla, the villager-run health program, has bit the dust. Its demise can be traced to international policies far beyond the local people’s control. PROJIMO, the disabled-villager-run Community Based Rehabilitation program that grew out of Piaxtla continues to function, but it had to move to a larger, safer village nearer the coast. The nature and dynamics of PROJIMO have also been radically changed by new subculture of crime and violence sweeping Mexico.
Since NAFTA began, the small village rehab program has attended to nearly 400 spinal cord injured youth, mostly from bullet wounds, and many of them users and traffickers of drugs. Such persons do not quickly change their habits when they become disabled. So PROJIMO – which began as a tranquil rural program for disabled children – has had to cope with drug use and outbreaks of violence within its bounds.So to its services it has had to add psychosocial rehabilitation.
One of the most encouraging results has been that some of the most violent and embittered young persons, on becoming disabled, at PROJIMO have become some of the most gentle and caring rehabilitation workers. It is like everyone had the seeds of goodness in them, if they can only be found and nurtured.
This long and in some ways paradoxical experience in the Sierra Madre has taught us many lessons.
One of the most painful lessons is that the health of the people depends more on social and political factors – who has power over whom – and on health services per se. The health of the people – even in the most remote village, and despite the valiant effort of local people to improve their collective well-being – is still vulnerable to outside forces far beyond its control. The continuing concentration of wealth in today’s globalized economy makes the poor of the world even more excluded and vulnerable.
For those of us concerned with the well-being of humanity and the planet – as well as meaningful occupation of disabled persons – we need to engage in “action for change” on 3 levels. These 3 levels, which relate respectively to short-term, intermediate, and long-term needs, correspond to the 3 stages in the evolution of Project Piaxtla in Mexico, i.e.: Curative Care à Preventive Measures à Sociopolitical Action.
In other words, the three levels of “partnership for health and inclusion” are
TO COPE - TO REFORM - TO TRANSFORM
The objectives of these 3 levels of “action for health and inclusion” 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. The challenge for those of us who would be “agents of change” is to try to work toward all three levels at once.
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 as partners in the problem-solving process, in an atmosphere of mutual respect, people gain the self-confidence and skills to stand up for their rights. They recognize the need to join together to insist on the equal treatment, inclusion, and equal opportunities that they all deserve.
The effectiveness of an egalitarian problem solving approach is can be seen in the example of making wooden crutches for the boy with polio, with which I began this address.
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 among themselves – that is, 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.
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 must 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.
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-based health and rehabilitation initiatives. Project Piaxtla in Mexico played an important role in the early networking and partnerships among grassroots programs in Mexico and beyond. The books that grew out of the village health program – namely Where There Is No Doctor and Helping Health Workers Learn – because they have been so widely used, helped to facilitate communications among previously quite isolated programs. Eventually this informal interchange between programs led to the formation of PRODUSSEP, an association of non-government community health programs throughout Mexico. In time the network expanded beyond Mexico, with the formation the “Regional Committee of Community Health Programs”: a coalition of the national associations throughout Central America and Mexico. This regional partnership was born in the 1970s, when there was so much brutal repression of people struggling for their rights in Central America, and solidarity was essential.
Similar to the situation in Central America, popular struggles for liberation from social injustice were taking place in many parts of the world. In many 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, a more extensive network began to take shape between health workers and programs on different continents, especially in places where marginalized peoples were struggling for greater opportunities and inclusion. The desire to share empowering methods and experiences led to some exciting exchanges between village-level health workers from these countries, and a growing sense of solidarity. It became apparent to all that the struggles for “Health for All” in Central America, the Philippines, India, South Africa and elsewhere had a lot in common. Many felt the need for new, broader international partnerships focusing on the politics for health. To this end a small, preliminary meeting of community health educators and activists from Asia, Africa and Latin America was held in Managua, Nicaragua, in December 1991. The outcome was the formation of the International People’s Health Council (IPHC), which later held extensive meetings in South Africa and Palestine.
The IPHC, in turn, became one of the guiding forces 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 partnership 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 badly needed voice of the people.
Similarly, in Mexico and Latin America networks and coalitions of Community Based Rehabilitation programs – increasingly in partnership with the Independent Living Movement, led by disabled persons themselves – are beginning to form. And even more important, many disabled persons are becoming concerned about the needs – and form partnerships with – other marginalized and disadvantaged groups: the jobless, the homeless, the economically exploited. More and more disabled person are deciding they don’t want to be adjusted to an unjust, unsustainable society, but rather join with those who are struggling to build a healthier, more balanced society, locally and internationally, where everyone has equal opportunities and an equal voice in the decisions that shape their lives.
Until humanity adopts a more inclusive and sustainable development paradigm, the greed, inequity, war mongering, and shortsightedness of our present globalized system will continue to disable far more persons than all our best therapeutic efforts can rehabilitate.
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 difference in the enablement of the world’s disenabled and disenfranchised majority: the best of humanity.