A Matter of Dignity

by Andrew Potok

  PROJIMO started with a focus on physical disability because, particularly in a rural area, this was the greatest need. In the mountains, where life depends so heavily on physical abilities and on hard physical work, a physical disability is a greater handicap than elsewhere. In the urban areas, mental disability tends to be more debilitating. In Ajoya, a kid with Down syndrome can often do his share of physical work and be really appreciated for doing it. Because the cities weren't doing very well dealing with their physically or mentally disabled, PROJIMO reached a point where it saw more children with both physical and mental disabilities brought in from the cities than from rural areas such as theirs.

  “A number of the health workers who were chosen by their village communities happened to be disabled,” David says. “It wasn't so much that the people thought the disabled would make better health workers, it was that they were the only people available. Everyone else in that community, as in all poor farming communities, was doing heavy physical work. The men were in the fields, the women tending to their large families. In a way, it was fortuitous, because the disabled people ended up being great health workers. For them, it wasn't only a job. It meant gaining respect and appreciation of their community, where they'd been largely thought of as useless. And because they'd been marginalized in the past, their hearts would go out to others with special needs.”

  “How do you sustain all your energy and passion? Do you get burned out?”

  “Well, I never married. I never had any children. I think that if I had a family of my own, I couldn't be this involved with other people.”

  At times it's hard to keep David on the topic of David. He is the instigator of all this, the energy behind it, but he is also a born teacher and needs to give constant credit to those he has taught, who, he says, are carrying the ball all over the world. The real heroes, according to David, are Roberto, Marcelo, Maria, Conchita, Ralph, John, Don, a whole host of others.

  “One of these disabled village health workers, Roberto,” David says, “became a leader of the program. He was first brought in as a kid of thirteen completely frozen up with juvenile arthritis. He had a hard time growing up. He was shunted off to the grandparents because he couldn't be productive. One night when it was really cold, his grandmother came and took the blanket off Roberto to put it on another kid. It was triage. He was being given up. The disabled are the first to go.”

  “How different is the concept of triage, of who should live and who should die, in Mexico from what it is here in the United States?”

  “My personal view is less fanatical than what I know of the American disability movement's position, which is driven to save absolutely every infant no matter how dire its condition. I take a more flexible stance. I think there's a legitimacy to different points of view about all this. Still, I see it as a very difficult decision, playing God against your own will. I've been caught in the middle ofthat debate and can easily understand both sides. Even in Mexico, there are ample resources to save any life if that's what they want to do.”

  Ralph Hotchkiss told me of the time he was visiting the PROJIMO program and a baby was born with spina bifida. Mexican doctors refused to implant the shunt to drain the fluid from the brain, meaning the child would die. If it had been born to a rich family, the doctors would have saved the baby. “I could in no way appreciate that perspective,” Ralph said, “but the others, like David, who had been in Mexico a lot longer, understood these terrible dilemmas better than me.”

  “I questioned what kind of a life this kid was going to have but Ralph was adamant,” David says.

  Questions of who should be allowed to die are, of course, not limited to rich nations. Everywhere, there is a huge spectrum of feeling about who should be kept alive, who better off dead. In the United States, there is a difference in opinion between organized disability groups like the independent living movement who feel that every effort should be made to save every single child, no matter the severity of a disability, and some of the health professionals and perhaps a large segment of society who question this.

  Roberto, who was saved in spite of his grandmother's unhappy triage, had been brought to David's program on a stretcher before PROJIMO had even been started. The health workers had no experience with juvenile arthritis, and did their best with a combination of drug therapy and physiotherapy and what some people would call psychotherapy, though they called it love. Roberto became a leader of the program, doing everything from operating its donated X-ray machine to delivering babies. He became one of the founders of PROJIMO. Another was Marcelo, whom David saw for the first time in a very remote village, a three-year-old sitting in the dust, paralyzed by polio. They brought him down to Ajoya, got him on crutches and braces, then into school. Eventually, after he became one of the founders of PROJIMO, he went back to his own village to work as a health professional.

  Even though poverty in Mexico is absolute compared with the relative poverty in the First World, barriers to health care in the United States are also enormous. “Let me tell you what's been happening recently with my brother in New Hampshire,” David says. “Last year, he was hit by a car and lost a leg below the knee. We've had a terrible time getting adequate attention for him. If he had money, things would have happened very quickly, but he's land-poor, his land beset by all kinds of mortgages and debts, and thus he can't get county or state assistance. The unbelievable part is that he has both Medicare and supplementary insurance, but because of bureaucratic idiocies like waiting periods, delays in payments for adjustments to a prosthesis-in-progress and for rehabilitation, the confusions of local providers about my brother's other medical problems and the hardships of living in a trailer in New Hampshire—all add up to his falling between the cracks and not getting what he needs.

  “Anyway, we're taking him to Mexico, to the village disability workers who will make him a proper prosthesis, then all the necessary adjustments, rehabilitate him and I'm sure send him back home walking better than he did before his accident. And the whole thing will cost him less than it does to heat his trailer for the winter. My brother is not an easy case, but he shouldn't be left out in the cold like this.”

  I am stunned by the irony of this and, as it sinks in, I begin to enjoy the thought of a man from the most affluent nation the world has ever known, going to a small impoverished mountain village in western Mexico to get a proper prosthesis, care and rehabilitation.

  David too is laughing. “It's like what happened to me many years ago,” he says. “From the time I was a little boy, orthopedists and orthotics experts have been making me a variety of braces and other devices to help with the atrophy problems of my legs and ankles. Each device they created made the situation worse. I could hardly walk and the pain was horrible. It wasn't until Marcelo, the crippled kid we saved when he was little, started PROJIMO with me and began considering how to help me that we solved my leg problem.

  “How did we do this? For one, Marcelo included me in trying to solve the problems and create proper leg braces, experimenting, adding, subtracting, adjusting until it was right. I waited thirty years for relief, and it came not from the interventions of orthopedic specialists in the United States, but from a disabled village brace-maker who worked closely with me as a friend and equal.”

  Stories about the personal and social evolution of Roberto and Marcelo are in no way unique. Two of the leaders of PROJIMO's disability program are spinal-cord-injured young women. Both had attempted suicide before they joined the program. One of them refused a wheelchair because she didn't want to be perceived as being disabled, but finally realized that without a wheelchair she couldn't accomplish much. She accepted her wheelchair, got married, had a kid and started a disability program of her own.

  Out of all these workers’ concerns about disabled children grew a child-to-child disability program. The people of Ajoya put together a building, and some of the village children made a rehabilitation playground with the understanding that the nondisabled kids coul
d use it together with the disabled ones.

  “A person who is completely normal and then becomes disabled goes through a tremendously difficult period of acceptance,” David says. “And as we both know, there's a whole collection of medical hornets who try to bleed the disabled for everything they possess. People use up the money the family might have with phony cures, and they get no better and sometimes suffer further damage. It's very hard to get people to just accept their disability, but one of the nice things is that the leaders of our program are paraplegics who rediscovered life by working with other disabled people. They've become wonderful peer counselors, who try to dissuade people from dreaming of impossible cures and to get them to accept what there is.”

  “In Mexico, is disability believed to be a function of God's will?”

  “At times,” David says. He tells me the story of a big storm and a flash flood that carried away an entire family who lived way up in the mountains on the edge of an arroyo. The father tried to save his seven-year-old daughter but she was torn out of his arms by the rushing water. He lost all of his children, his wife and his mother. He was thrown into the torrent, ended up about two miles downstream and crawled back to where his house had been. When people found him, almost all the skin from his body was ripped off, and so they sent for David.

  “I really didn't know what I was getting into,” he says. “I wasn't well equipped for it, but we managed to give the man emergency treatment. He already had gangrene in his leg. It was gruesome but we cauterized the cut, without anesthetic, with a wire which we heated in the fire. Anyway, we saved him. Afterwards people wondered why this tragedy happened to this particular family. Basically, they said, this was a good family, so why would God do this to them? Then they started inventing bad things that the family had done. They finally came up with reasons why God punished that family. To blame God for doing this terribly bad thing was unacceptable. In India, of course, it's different. There, the cause of illness or disability can just as easily be pinned on karma.”

  David and I take a walk in his New Hampshire woods, Tobias bringing us sticks to throw every few steps we take. He tells me that the lack of resources, superstition or the neglect of crude and corrupt politics and politicians aren't the only obstacles to a Third World health and disability program. When he begins talking of U.S. interference and particularly the North American Free Trade Alliance, his cheerful mood vanishes. “NAFTA has caused an economic disaster for the poor in Mexico,” he says. “The spinoff is that there are now a lot more street children, a lot more crime and violence and a lot more disability from gunshot wounds. We've had over four hundred spinal cord injuries come into this little village program, all in the last five years or so. There's more drug traffic in the city but there's more drug-growing in the mountains.

  “We've had problems with a lot of these kids because they're often macho, violent, drug-running, alcoholic street kids. Just because they become disabled doesn't mean they leave their habits and lifestyles behind. We've even had a couple of attempted killings, another outcome of the dissolution of these communities.”

  In preparation for NAFTA, the United States got Mexico to annul the agrarian reform laws in its constitution so that American agribusiness could come in. Before, there were very strict limits on how much land an individual could own. “All of this has made for a huge exodus of farm people into the growing slums of the cities,” David says, “causing enormous unemployment, causing real wages to drop by forty percent, all since NAFTA.”

  A few years back, the United States estimated that 70 percent of the repayment of the huge Mexican debt was paid through drug money. “Knowing that,” David says, “why would they want to demolish the drugs? They don't. The war on drugs is a farce. And as for this little village, we're at the end of a dirt road going back up into the mountains. It's a kind of Dodge City ofthat area of Mexico.”

  The drug traffickers began to come to the mountain villages of Mexico to buy goma, or raw opium, to take up north on their way to the United States. South American cocaine traffickers had discovered that taking a side trip to Mexico's Sierra Madre could be highly profitable. First the dealers hook the young mountain villagers on cocaine, then they swap them cocaine for raw opium from locally grown poppies. Through this clandestine barter, the dealers increase their earnings tenfold. Village health workers have estimated that some 70 percent of youth in the mountain area have at least tried cocaine. The profits are very small for the growers compared to the middlemen. A kilo of raw opium for which the campesino is paid only four hundred dollars sells on American streets as adulterated heroin for over a million.

  For a long time, David would spend half of every year in Mexico. “Now with all the globe-trotting,” he says, “life is too busy. It's interesting but not as pure, not …” he searches for the proper word, “not as spiritual. There was a kind of purity then in helping one another without expecting something in return. That was part of the traditional culture. It's the way I really believe people ought to live but not too many do anymore. The kind of cohesion that used to exist no longer does.

  “When I first got to Mexico, people believed it was a sin to own a Bible. The priests said that they were the intermediaries, thus the only ones who could possess the word of God. It's interesting that both doctors and priests struggle so desperately to keep their particular knowledge as their exclusive right.

  “A lot of these village people are very humble but I think that, primarily because of their television and radio contact with the outside world, they have gotten a very low opinion of themselves. They are constantly being hammered with false moods and images in commercials and sitcoms that lead to success and happiness, while they perceive themselves as not only poor but without the resources needed to feel good about themselves. As health workers, we've had to break through their negative self-image of stupidity and inability to learn.

  “ ‘We need the doctors, the professionals, the city people to tell us what to do, how to get well,’ all of them felt. To get around this, we used to play a game with people, saying: ‘Suppose there was a disaster in Mazatlän and one of the doctors from there arrived in this village with just his clothing and family but with no money, no tools, nothing. He needed to stay and live here. Could he do it?’ So people said, ‘Well, he could do what we do, clear a piece of land, plant corn.’ ‘But,’ we'd say, ‘he doesn't know what trees to save, which to use. Not only that but when he starts to cut the wood, his hands would get full of blisters and what would he do? You've seen doctors’ hands and they'd have a real hard time. So,’ we'd ask, ‘what would you do about it?’ ‘Oh,’ they said, ‘we'd see that the family had enough to eat, we'd help, we'd teach them.’ ‘Oh, you would? Well, how much would you charge them?’ ‘We wouldn't charge them anything. How could we? They arrived with nothing.’ ‘Okay’ we'd say then, ‘what if you went to the city with a sick or dying child and you went to the doctor, what would he do?’ ‘Well, if we have money, he'll attend to the child. If we don't, the child would be allowed to die.’ So they then begin to compare their values, their lives, their knowledge with those of the doctor. It's a real awareness-raising exercise.

  “To me,” David says, “if humanity is going to come out of all this greed and violence without destroying itself, we need to relearn the processes of caring and sharing, community and reciprocity.”

  BROTHERS AND SONS

  JAY NEUGEBOREN

  writer

  MONAWASOW ANNE LARKIN

  teachers

  SAM TSEMßERIS

  agency head

  PROLOGUE

  Who or what determines which life is not worth living? It might be the genetic counselor or doctor, it might be the politician, the ideologue or, as events of the twentieth century made clear, the spirit of the time. There is a persisting seductiveness to the idea of improving the human race by selective breeding. In the Germany of the 1930s and ‘40s, not only the majority of the population but the vast majority of the doctors
pushed toward a “pure” master race, free of the physically and mentally disabled, free of Jews, gypsies and homosexuals—a concept that loomed so large as to justify, in the minds of this majority, the right to determine who is fit, who is not, who survives, who needs to be wiped out. Just as the urge to get rid of “defective” citizens or patients is not confined to any one nation or ideology, so it isn't limited to naive or incompetent professionals. Leading academicians, physicians, psychiatrists, geneticists and biologists, individuals intellectually immersed in fields that endorse the concepts of normalcy, deviance, abnormalcy and pathology in person-fixing rather than context-changing, seem particularly prone to the kind of thinking that privileges certain behaviors, certain ways of being, functioning and looking.

  In all this, there is an uncomfortable similarity to American managed-care programs that focus on the young and healthy, often denying services to the old and disabled. This time the intent is not to produce a master race but to bow to a cost-benefit analysis. Still, the same questions are being confronted: which life is without quality, who is worthy of further treatment, who is not. One of the present dangers, as it has been in all eugenically active times, is that the fate of patients is decided from a bureaucratic distance by healthy, able-bodied professionals in teams, thus shielding single individuals from the responsibility of delivering life-or-death sentences. Once, this power was in the hands of doctors. With managed care, it has shifted to insurance company functionaries.

  Eugenics—this “science” of improving humanity—is the concept of defining fitness in human beings and engineering its survival by enhancing the chances that the fittest will produce more offspring than the less fit. Because of evolving eugenics theories and deeply ingrained popular beliefs regarding the hegemony of “normalcy,” the mentally ill have long been looked upon as among the most threatening of the “imperfects” and thus are easily judged to be living a life not worth living.