Disability and Poverty in the Philippines: Efforts of Families to Cope
CBR workshops in the Philippines In January 1998, Stiching Liliane Fonds (SLF), a Dutch foundation that helps disabled children in difficult circumstances, held two 3-day workshops in the Philippines. More than 130 SLF mediators from many islands participated. “Mediators” are volunteers, backed by local organizations, who find disabled children with urgent needs and arrange for them and their families to get essential support from SLF. The mediators are often nuns, community leaders, social workers, nurses, or other persons who have a concern for the well-being of disadvantaged children. However, many mediators have little knowledge or training in the field of disability. One purpose of these workshops, therefore, was to introduce mediators to the concepts and practice of community based rehabilitation (CBR)—with hopes that they might take a more enabling, integrative approach to meeting the needs and possibilities of disabled children.
SLF invited David Werner to help facilitate these workshops. Before the workshops began, he and the Liliane coordinators spent several days visiting some of the SLF-supported children in their homes, first in urban slums of Manila, then in rural and semi-rural communities in the southern and northern provinces of the Philippines. Here, David shares with readers some of the events and circumstances which impressed him most deeply.
Disabled Children in the Stacked Shanties of Manila
I have visited a lot of poor countries and seen many difficult living conditions. But urban poverty in the Philippines is among the most dire I have witnessed. Poverty in Manila’s inner city seems more extreme because—unlike the shanty towns on the “septic fringe” of many mushrooming cities—here the poorest families live wedged into the faults and crevices of conspicuous wealth, much of it controlled by foreign corporations.
One of our first field visits in Manila was to a central-city area with many high-rise hotels and industrial buildings. Neon signs and sumptuous window displays deck the street-fronts. But the alleys between the buildings look like human beehives—or termite colonies—with thousands of tiny cellular dwellings plastered precariously against the high brick walls. In each alleyway, a narrow central path, about 2 feet wide, separates the shacks on either side. Made of bamboo slats and cardboard, most of the shacks consist of a single room, about 6 by 8 feet square. Each shack lodges a whole family. On top of the first layer of shacks balances another layer of similar shacks, then another and another In some alleys the shacks are stacked precariously 5 or 6 stories high.
No exit for Rocky. A mediator in one of these poor urban “barangays” (communities) in central Manila took us to visit several of the disabled children whose situation, she said, was especially difficult. To reach one child, named Rocky, we squeezed along the narrow path down an alley, ducking past drying clothes, stepping over debris and babies. We entered a ground-floor hut (greeting and apologizing to its occupants on our way by) and climbed a series of steep, rickety ladders that zig-zagged upward through the living quarters of one family after another. At last we arrived in the tiny one-room hut where Rocky’s family lives. About 14 years old, Rocky had cerebral palsy with profound mental and physical disability. His gaunt body extended stiffly with spasticity. He could not roll over by himself or grip things with his hands. He spent the daytime lying naked on the bamboo-pole floor of the shack. (Lack of clothing made the afternoon heat more bearable in the small, window-less room.) His mother hurriedly pulled some shorts onto his thin stiff body.
It was hard to know how aware Rocky was of his surroundings. He could not speak, and his mouth was twisted in a position of long-term discomfort. His mother clearly loved him, and did her best to comfort and care for him—when she was home. But because she worked part time and Rocky’s brother and sisters went to school, until recently Rocky had been spending hours each day alone.
The mediator had brought together families in the neighborhood who had disabled children, to discuss their needs and explore ways to assist each other. As a result, a warm-hearted woman from the next alley came to visit Rocky for an hour or two every day. During these visits, she would hold his stiff upper body tenderly in her arms, stroking, rocking, and talking to the child. As she did so, Rocky’s distorted mouth would gradually relax and a look of peace would enter his eyes.
What more can be done for a child like Rocky? Had we visitors seen Rocky in a clinical setting, we might easily have made misguided suggestions. We might have suggested regular visits to a community center for disabled children (since one was located not far from the home). We might have recommended a wheelchair, or wheeled cot, adapted to accommodate Rocky’s stiff body, so that his family could take him for walks and outings to provide stimulation and activity. However, on visiting Rocky’s home, we realized how unrealistic such recommendations would be. In the cramped living quarters, even a wheelchair that folded would take up too much space. And it would be impossible to maneuver along the narrow, cluttered paths of the alleys. With a wheelchair or without, to get Rocky in and out of his tiny elevated room, up and down the rickety ladders through the shacks of those on the floors below, would be a major and risky feat. For the same reasons, trying to take him to the community center several times a week would be virtually impossible for his mother.
Yet, how often are mothers blamed for “non-compliance” by professionals who have no idea of the difficulties the families face? We realized how important it is for staff of rehab programs to visit the homes and neighborhoods where disabled persons live. Only then can they adjust their recommendations to both the possibilities and limitations of that reality.
The challenge of community-based rehabilitation is to creatively try to overcome or cope with the negative aspects of the situation, and to identify and build on whatever is positive.
On the negative side, for Rocky, home was in some ways a trap—so confining that the family’s options were severely limited. The real trap, of course, was poverty. As long as Rocky’s family lived in such a barely accessible shack, providing a wheelchair or arranging visits to a rehab center would likely create more difficulties and frustrations than it would solve.
On the positive side, in low-income Philippine neighborhoods there often exists a strong sense of community—a spirit of caring and sharing that has withered in many urban areas around the world where (in the words of the poet Wordsworth) “neighborhood serves rather to divide than to unite.” A welcome characteristic of many Filipino people is that they take pleasure in reaching out to help a neighbor or friend—even a stranger—in need.
Thus, especially among the families of other disabled children in this barangay, the mediator was able to start building a network of caring, understanding support.
Such a neighborhood support network, if encouraged and further developed, may be one of the most favorable solutions for a child like Rocky, and his family. It is difficult to say how much Rocky, who has extensive brain-damage, would benefit even from the “best” therapeutic program available. His combined mental and physical deficits may substantially limit his potential for functional development. In some countries, such a child is often separated from his family and institutionalized. But whether that is a kinder answer for child or family is highly questionable. What Rocky clearly needed, perhaps more than any programmed therapy or professional intervention—was caring human contact: the simple intimacy of a loving voice, smell and touch. The closeness of his mother (intermittent though it was) and the daily visits by the big-hearted neighbor who spent hours gently holding Rocky, talking and singing to him, may do more to satisfy Rocky’s core needs than any institutional care.
We agreed that the mediator for this barangay was off to a good start. She had found a way to bring caring persons into the home where it was so hard to get Rocky out. Perhaps the family and home visitor could learn a few personalized exercises and activities to help improve Rocky’s flexibility and comfort. Or if they could explore ways to position him so that he could observe his surroundings and be fed more easily, this might be another step forward.
One simple but important suggestion to make Rocky more comfortable was to provide him with a soft pad so that he would not have to lie directly on the bamboo slats. Sometimes small things can make a big difference.
Holocaust in Manila’s Alleys
We visited a number of disabled children living in conditions of poverty similar to those of Rocky. Time and again we were struck by the bountiful love and innovativeness of these children’s parents, especially their mothers. One big obstacle to doing more for their disabled child was lack of money—sometimes simply the lack of fare for transport to school or clinic.
Fortunately for some very poor families, Liliane mediators are able to allocate modest funds to help them start an income-generating or income-supplementing activity. For example, a mother who has to work outside her home may be given modest seed money to help start up a small store or sewing service in her own home. That way, she can earn some money while staying at home with her disabled child.
Such funding assistance from an organization like SLF can only go so far. It helps a number of low-income families with disabled children to cope more independently. But in terms of the larger picture, such measures—while important and sometimes life-saving for the children selected—are like a finger in the dike. A more far-reaching, sustainable solution needs to get at the roots of the underlying problem.
Those of us visiting the Philippines were deeply struck by the extensive, extreme poverty side by side with enormous wealth. It became clear to us that the biggest obstacle to the well-being of disabled children is rooted in the cruel inequality between social classes.
Life is hazardous for the poor, especially for the destitute families living in such crowded, vulnerable conditions. On seeing disabled children like Rocky, where any attempt to move them from their tiny, upper-story shacks is a slow and risky undertaking, we worried about their safety and survival. Surely, we thought, the alleys crammed with hundreds of cardboard and bamboo shacks were like a giant tinder-box awaiting conflagration. “Don’t these crowded settlements ever catch fire?” I asked the mediator.
“Oh yes!” she exclaimed. “Sometimes the managers of the industrial buildings and hotels on either side of the shacks start a fire to clean out the alleys. They see the squatters only as a nuisance. You can’t imagine the human disaster caused by such fires—the deaths, severe burns, new disabilities, homelessness for hundreds…!”
“Are the fire-starters punished?” I asked, naively.
She shook her head and shrugged sadly as if to say, “Business is business.”
The Root Problem: Dire Poverty in a Land of Plenty
As we traveled through urban and rural areas in the Philippines, we began to realize that the torching of shanty settlements in Manila’s alleyways “to keep the commercial zones safe and attractive” is the tip of the iceberg of ruthless imbalance of wealth and power. Yet, the problem is not so much Filipino as global—the consequence of institutionalized unfairness and greed that stem back to colonial times but have become more overbearing with the current globalization of the economy.
Having lived and worked in Mexico for many years, I was struck by the historical parallels between the Philippines and Latin America: the occupation and conquest of proud indigenous peoples, first by the Spanish and then by the United States.
Today, the domination of the Philippines by the USA, economically and in some ways culturally, is striking. Sign-posts and bill-boards of American multinationals, ranging from Coca Cola to Marlboro, dominate the landscape. Clothing, haircuts, and popular music follow the latest US fads. Giant shopping malls replete with glitzy consumer goods cater to those who can afford them, and to many who cannot. Clearly, there is a lot of prosperity in the Philippines, as conspicuous and disturbing as the widespread poverty. The gulf between rich and poor is appalling. On leaving the inner-city squatter camps of Manila, we drove through plodding traffic past the shipping port, and then past a huge exclusive yacht harbor with thousands of moored luxury yachts, worth many millions. The contrast is astounding.
In spite of the sumptuous wealth in the Philippines, abject poverty—and the diseases of poverty—remain widespread. High rates of malnutrition among children and the continuing high incidence of diseases such as tuberculosis are typical of countries with a Gross National Product (GNP) much lower than that in the Philippines. Furthermore, the current trends of structural adjustment, with privatization of public services and cut-backs in food and health subsidies for the poor, further aggravate the hardships of the underclass.
Rural poverty and foreign wealth. For the mass of people in rural areas, land-shortage and deprivation are also severe. Yet, as we flew over the Philippines from one tip of the archipelago to the other, I was stuck by the enormous productivity of the land. Hundreds of miles of rice paddies glow florescent yellow-green in the tropical sun. Rich soil and plentiful rain in most of the islands foster an agrarian abundance capable of meeting all the people’s basic needs. The surplus of produce could easily provide social security and a healthy standard of living for all people. In addition to bountiful agriculture, the Philippines also have vast mineral resources. With fairer distribution of what the land provides, poverty could easily be eliminated; poor health and the high incidence of disability could be drastically reduced. The country is a Cornucopia. If the land and waters were fairly and sustainably husbanded, no child would need to go without adequate housing, health care, schooling, or the opportunity to realize her or his full potential.
But reality is disturbingly different. Fair distribution in the island nation remains a smoldering dream. During a brief interlude there was hope of far-reaching change. In 1986, millions of Filipinos in a peaceful uprising overthrew the opulent dictator, Ferdinand Marcos. But they did not and could not overthrow his powerful foreign accomplice: the US government in league with the multinational industrial complex. So, despite changes in the Filipino presidency, the brutal imbalances continue and in some ways have worsened.
More and more of the best land in the Philippines is being purchased by multinational agribusiness and mining industries. In the southern island of Mindanao, we visited villages where land-hungry peasant families live crowded into tiny bamboo huts and their children suffer from the diseases and disabilities of hunger and poverty. There is an unusually high incidence of children with brain damage resulting from premature birth by undernourished mothers, or resulting from high fever and “meningitis” because the children’s resistance is low, again because of poor nutrition. Hunger in a land of plenty!
As we flew into the airport of General Santos, at the south end of the island, we passed over a volcano where the surrounding landscape, as far as the eye could see, was a homogeneous blue-grey carpet. “Rainforest?” I asked, doubtfully.
“No,” was the reply. “Pineapple. Dole Pineapple!” The Dole Fruit Company of USA now owns the majority of high quality land in the southern islands. And as its land holdings keep expanding, the poor are crowded into the remaining, poorer quality land. The best fruit is exported. The lucrative profits, taxed at absurdly low rates, leave the country to fill coffers in the USA. As multinational agribusiness increases its profits by replacing farm workers with fossil-fuel-guzzling machines, more and more people become jobless. As competition for jobs rises, wages fall. Destitute peasants migrate to the slums and crowded alleys of the cities where, in turn, job competition drives wages down and rent up.
Meanwhile, foreign mining companies are ravenously invading the Philippines. Big money corrupts in a big way. In violation of land reform laws of its own Constitution, the Philippine government now permits foreign mining companies to stake unilateral claims on the nation’s best mining land. Foreign mining industries now have applied to purchase 27% of the total land area of the Philippines!
Add all this together and it is easy to see why—despite the country’s vast resources and the spirit of caring and sharing which is still a hallmark of so many Filipinos—the country remains plagued by high rates of poverty, disease and malnutrition-related disabilities.
The tragedy of the Philippines is the story of many poor countries. Globalization of the economy—spearheaded by GATT, the World Trade Organization, and the pending Multi-lateral Agreement on Investment (MAI, see p. 11)—is relentlessly expanding the universal sovereignty of multinational corporations while reducing the sovereignty of disadvantaged nations to defend the rights and livelihood of their own people. The situation in the Philippines today—with a widening gap between rich and poor, accompanied by cut-backs in public services, growing unemployment, and falling wages—is a pattern repeated to greater or lesser extent worldwide.
Personally, I came away from the Philippines with mixed feelings. On the one hand I was deeply moved and inspired by the efforts of mothers and families, against great odds, to find ways to protect, nurture, and stimulate the development of their disabled children. And I was enormously impressed by the dedication, energy, and caring of the SLF mediators to help disabled children and their families find ways to cope with extreme poverty, discover provisional solutions, and to become more self-reliant in spite of huge obstacles.
On the other hand, I was deeply upset by the human suffering resulting from gross inequality and perpetuated by a neocolonial system that, rather than working toward sustainability of humanity and the planet, aspires to the economic growth of the already wealthy, in spite of the enormous human and environmental costs.
In conclusion, I left the Philippines convinced that for the immediate succor and well-being of individual children with special needs, a program of urgently needed assistance like that of Stichting Liliane Fonds is of vital importance. But for the long-term quality of life of these children—and, indeed, for the whole of humanity—a worldwide awakening is necessary, a peaceful revolution, or evolution, leading to a global community based on fairness, equal rights, and equal opportunity for all.
Story from the Philippines: Lorenza Starts a Community-Based Initiative
In the northern province of Kalinga, the local mediator, a nun named Aurora, took us in a truck to a remote mountain village. There we visited the home of Lorenza, a woman with two disabled girls. Kanaruffa, 14 years old, was microcephalic and had epilepsy. Sherilyn, 1½ years old, had cerebral palsy, was visually impaired, and had almost no head and trunk control. When Sister Aurora had first visited the home, she found Kanaruffa tethered with a rope during part of the day. The Sister had insisted the child not be tied up. Lorenza had complied. But in talking with Lorenza, we learned that untying Kanaruffa had in effect tied down Lorenza. She had tied the girl to keep her from hitting and injuring her defenseless baby sister—and to keep her from wandering off and getting lost, which she had often done. Since she could not let Kanaruffa out of her sight, Lorenza was now home-bound. She had abandoned her role as village health worker, which had required visiting the homes of the sick. This meant less income and food for the family. (Lorenza’s husband, a woodcutter, earned too little to feed the family adequately.)
The visitors from SLF were impressed by Lorenza’s quiet determination and commitment to her family and community. Because she was already a village health worker, and seemed to have an intuitive ability to assist her multiply-disabled baby, the visiting SLF team thought she could become an excellent village rehabilitation worker. So they invited her to attend the upcoming 3-day workshop in Manila, with all costs covered. At the workshop Lorenza could also take part in making a special seat for her baby. Then, through the skills she learned, she could help make seats and assistive devices for several other disabled children in her village.
While we were visiting Lorenza’s home, other families with disabled children began to arrive. Some Sister Aurora had seen before, others not. Among those arriving was a teen-age girl named Sheryl, who was nearly blind.
Sheryl was bright and dreamt of doing something worthwhile with her life. She had completed primary school against great odds and had begun secondary school, but had dropped out because of difficulties. Now she mostly just stayed at home, helping with a few chores. She said she often felt depressed.
In the course of the discussion, various possibilities emerged. Sheryl showed interest in Lorenza’s baby, perhaps in part because she identified with the baby’s visual impairment.
When Lorenza asked Sheryl to hold the baby, Sheryl did it so lovingly that the baby, sensing the positive feelings, relaxed and almost smiled.
This was the germ of a beneficial relationship for all concerned: for Sheryl, Lorenza, her children, and the whole community. Arrangements were made for Sheryl to come to Lorenza’s home daily to help care for the baby and the older girl. This would free Lorenza to resume her work as a village health promoter, and do community rehabilitation work as well. If things worked out as hoped, Sheryl could learn health and rehabilitation skills from Lorenza, and gradually assume a valued role in her community.
What had seemed an unpromising situation was suddenly budding with possibilities.