A Matter of Dignity

by Andrew Potok

  “Did I tell you,” she asks, “that I got this really nice award? It's from a group called Women in Music. I was amazed. My mother and my older brother came to the ceremony. That was wonderful. I love all that I'm doing. People think I have absolutely everything, my doctorate, my kids, the music I perform, travel. I affect my patients profoundly and they affect me. I have a husband who makes sure the kids are fed. He's a great musician but we don't compete, and when I'm overwhelmed with my hospital work and haven't the time for the reading I need to do, he does a lot of my reading for me. I have a great family.” She pauses and smiles. “I guess I do have everything.”

  Recently, Connie Tomaino was promoted to vice president for music therapy at the Beth Abraham Family of Health Services, in addition to directing the Institute for Music and Neurologic Function.

  “We as clinicians observe responses which often can't be rationalized or objectified through scientific means,” Connie says. “Only when technology improves will we start to know exactly what neural processes are taking place. But if we could better understand how music affects brain function, we could have a better window into brain function itself.”

  NEIGHBORS

  DAVID WERNER

  biologist, health educator

  PROLOGUE

  In spite of a lot of positive rhetoric that tries to be universally inclusive, international disability organizations are focused primarily on the world's middle class. The membership of these organizations is comprised mainly of middle-class people whose well-meaning efforts emphasize the issues they know and live, such as accessibility and equal rights, rather than meet the essential but very different needs of the world's disabled poor. Even when trying to help Third World populations, the management of these organizations pays inordinate attention to fixing up cities to make them accessible for wheelchairs because most of the disabled use wheelchairs, although in the world today 90 percent of those who need them don't have them and must function without them.

  What is seen as essential here in the privileged First World is altogether different elsewhere. There is a cartoon in one of David Werner's books in which a UN supervisor arrives at a little village, comes up to a mother who seems very sad, and says, “I've got good news. We were finally able to get a hearing aid for your deaf daughter. And we're going to be able to get her into a school.” And the mother says, “I'm sorry but she just died yesterday of diarrhea and hunger.”

  In this country, the struggle to achieve certain rights, more evolved attitudes toward disability and the distribution of some technologies, albeit mostly to middle-class clients, has come as a result of a great deal of toil on the part of the disability community in general and its activists in particular. The progress that has been made derives from unusual conditions such as great wealth, power and the concomitant feelings of entitlement. In many other parts of the world, high-tech innovations are not an answer. If one's life takes place closer to the ground than from chair level, mechanized wheelchairs don't help. A screen-reading computer program has no use where computers play no part in everyday life.

  My own life began in Europe, and when as a little boy I came to America, I saw this country with a refugee child's worshipful eyes as the haven that in fact it was. Later, when as a young man I went back to Europe to live, my appraisal was mediated and broadened. Because of my early encounters with nationalistic and ethnic hatred, I found nationalism, parochialism, any kind of narrow, exclusionary views intolerable. My value systems had evolved not only in my politics but my art. Seeing art history through the lens of French, Italian or Spanish chauvinism gave me a better sense of proportion, hence a better platform from which to create my work.

  Thus, seeing America from the viewpoint of elsewhere offers a certain perspective and clarity to our own reasonable expectations. It allows for a more evolved assessment of where we have come from, where we now are and the speed with which we are moving forward. Our affluence, privilege, power and entitlement take on a somewhat different value when considered from a global point of view.

  Though being blind or paralyzed or deformed or mentally disabled is in itself the same wherever it exists, the attitudes toward those conditions differ greatly, and it is those attitudes that determine inclusion or exclusion, opportunity or the lack of it. It seemed central to the understanding of contemporary views of disability in the United States to have a look outside the country and then attempt to reconfigure the situation within it. Is the poverty of the Third World equivalent to the conditions of American poverty? Do the entitlements and use of resources by the wealthy nations further pauperize the Third World? Does our world export good attitudes, useful technology, or does an unregulated free market actually contribute to the creation and export of disability?

  Among our exports to Mexico, according to international health worker David Werner, are highly explosive bullets, banned by the Geneva Convention for all domestic use but used indiscriminately by Mexican soldiers in their zeal to police insurgent populations. David described amputating the hand of a ten-year-old who was nicked by one of these bullets. Had it been a conventional bullet wound, it would have meant setting a bone, but here the hand was like hamburger. “It's not hard to see how these imposed global policies contribute to disability,” he said.

  Cultural differences between the United States and Africa or Mexico are immense, though not always totally contradictory. With a lot of the American population believing in angels, the view of nitty-gritty political issues may be no more dreamy than that of other cultures’ belief in bad karma as an explanation for disability. Werner's friend Ralph Hotchkiss, who travels the world on a mission to provide wheelchairs for all twenty-five million people who need them, told me of the complicated attitudes of the people of Uganda, from which he had recently returned. In that country, there are forty-five thousand disabled elected officials, from the township level to the federal level. Disability, then, is well represented. On the other hand, to marry a disabled person is an embarrassment to the family. Ralph told me about Sharifa, a crippled woman he knew well, whose husband was blind. “Blindness was okay,” Ralph said, “and being a man helped, but her inability to walk was considered intolerable.” Because of pressure from his family, the blind husband improved his diminishing status by converting from Christianity to Islam, then taking a second, this time ablebodied, wife.

  In many poor countries, people with spinal cord injuries are taken to the closest hospital, where surgery is imposed on them whether they need it or not. After that, they are allowed to stay only as long as their money lasts. Because of poor nursing care, they often develop pressure sores or urinary infections that can be lethal. When the family runs out of money, totally ruined, the patient is thrown out of the hospital to die.

  With this sequence of events a reality in Mexico, word got out about David Werner's mountain village disability program, PROJIMO, where spinal-cord-injured people in Ajoya are recovering, learning skills, beginning to work again and, to the surprise of many, helping one another. Mostly, the helpers are other disabled people in wheelchairs or belly down on gurneys. They weld, do machine-tooling or carpentering in the prosthetics or wheelchair shop or make specially adapted toys for disabled kids. When a mother brings her disabled child into all this activity, her expectations and assumptions about disability are challenged by the sight of adults and children, many of whom are a lot worse off than her own child. Often the enormous weight of what she accepted as her lifelong burden dissipates.

  One of the wonders of Werner's disability program, the basis of its uniqueness and power, is precisely the fact of its being village centered and client centered. In the United States, too, the independent living movement is essentially spearheaded by disabled people themselves, though too often the target of its concerns is primarily the middle class. The poor and rural disabled are relatively neglected, as are those with mental disabilities, although the disability rights movement continues struggling to improve those inequities. The structures tha
t programs like PROJIMO are trying to avoid are those, like the ones set up by the World Health Organization, that promote hierarchies of supervisors who talk to other supervisors who eventually reach down to the disabled person, the low man on the totem pole. “Those organizations are not really listening to the disabled people themselves or to their families,” Werner said. “Reaching the most needy and voiceless families is the key to community-based rehabilitation in the Third World.”

  “The most lasting thing David has done in Mexico,” said John Fago, “is to give so many people skills that can be translated into higher-paid work. It's a bizarre, rather anarchical scene down there, but a world in which disabled people can have independent lives. The PROJIMO program has spawned many other programs. In its early days, word would go out and fifty disabled kids and their families would show up. It was an amazing, very inspiring scene, but when David Werner exits Ajoya, I think that things are going to change. He's the essential visionary center, the avatar, and when the avatar leaves, often there are corruptions and distortions. Who knows what will happen?”

  As for me, I wondered if it was merely raggle-taggle scraps that socially conscious, driven professional volunteers were capable of delivering, or if their work and the programs and ideas they initiated made a real difference. I wondered what in the lives of people like David Werner, Ralph Hotchkiss and John Fago had compelled them to contribute outside the United States and to serve the less privileged parts of the world.

  David Werner has written several books, one of which, Where There Are No Doctors, has been translated into eighty-six languages and has passed the three-million mark of copies in print. All five of his books, including Nothing About Us Without Us, are a blend of teaching manual and manifesto, illustrated with his own simple, expressive drawings and photographs. Their influence is enormous, and the royalties are channeled back into his work.

  I had heard stories about David Werner for close to thirty years, from two poet friends who had accompanied him on one of his first forays into a remote Mexican mountain village to help in the delivery of health care to a rural population whose very existence had been pretty much ignored. Over the years, he remained in my mind as an obsessed, saintly figure, the picture of the barefoot doctor on muleback, traveling from one end of Mexico to the other. I was delighted to meet an entirely approachable, funny, unsaintly man with admirable politics. I was to discover that David Werner's village-based, client-run disability program, PROJIMO, might well serve as a model for the empowerment of the powerless of the world.

  NEIGHBORS

  In his family's New Hampshire house, once a genteel, spacious summer residence on a pristine lake, now a bit down-at-heel after a long, hard, unheated winter, David Werner tells me about his life's work, which for the most part is rooted in Ajoya, a remote mountain village in western Mexico.

  He is a biologist by training, though he has performed complicated surgeries, has treated hundreds of people in his clinics and has disseminated a host of village-centered participatory health and disability programs worldwide.

  Every once in a while, David and I go out the back screen door to stretch our limbs and breathe the piney lake air while Tobias runs around the house chasing squirrels. David wears leg braces, and as I hang on to his arm I can sense his limp, the result of a congenital condition called muscular atrophy, which has left him with withered muscles from elbows to hands and knees to feet. “It's not much of a disability,” he says. I experience his movement as an odd gait, a kind of marche militaire.

  The day before I arrived, he climbed Mount Chocorua, a grueling all-day hike that he makes three or four times during his monthlong stay in New Hampshire. The climb is not intended as a macho challenge, nor does its completion represent a victory. Standing on top in the late morning, with lakes and mountains all around him, is pure pleasure. Still, physical tasks are not easy. In order to turn the key to the car, for instance, he has to clench his fist around the blade of the key, then twist his whole arm.

  We settle down around his kitchen table and he reminisces about first encountering the village that was to become the center of his life. He had taken time off from teaching in an alternative high school in California to hike in the mountains of western Mexico, where he could spend long days surrounded by wild orchids, exotic birds and beetles, all the beauty and diversity he loved.

  “At the end of one day in the wilderness,” he says, “I was surprised by the sudden onset of darkness. I was sort of in the middle of nowhere, so I began moving fast, trying to get back to the village where I was staying. As I passed one little hut off on the mountainside, the people saw me and called out to say that, given the pitch blackness and the snakes along the trails, I'd never make it. They urged me to stay the night.”

  That night the weather turned bad, the cold so deep that David thought he'd freeze inside his sleeping bag. The adults of the family, on the dirt floor and with only a few deerskins for cover, held the children in their arms to keep them warm. In the morning he noticed that one little kid was limping, pus running from a wound in his swollen foot. He had stepped on a thorn three months before. “Something clicked at that moment,” David says. He understood that with a minimum of care at the time, the boy would have been fine. The other kids in the family, ages three and four, were developing goiters from iodine deficiency. “I was overwhelmed with the warmth and friendliness of these people and the severity of their health problems. A little naively, I though that with a little bit of intervention, everything could change.”

  Back in California, he mobilized all the resources he could think of and, with his students, began a year of medical study, mainly of tropical diseases. “In those days,” he says, “some of my doctor friends trained us in emergency care. No chance that this could still happen today.” They studied and observed. They assembled medical kits in coffee tins. They made comic-book depictions of different medical conditions and amounts and frequencies of dosages for various drugs. At the end of the school year, they took off for Mexico.

  “To put it mildly,” he says, “it changed the course of my life.” Some of the students from that initial trip went on to other forms of service work. David settled in Ajoya, where, on muleback, he began traveling from village to village, asked to do a lot more than he could handle. It didn't take long to fully understand that he needed to train village health workers and organize a village health program.

  From very early on, David Werner dreamed of better worlds, better ways to live. Even as a boy in Cincinnati, he was a loner and a maverick. “I think my disability had something to do with needing to get out of there,” he says, “but it was more than that.”

  When he was fourteen, he befriended a young naturalist who shared David's love of flora and fauna and also his strong political beliefs. “He pulled the wool from my eyes,” David says, “opened up a whole new world for me.” A Quaker and a conscientious objector who had spent five years in jail for his convictions, the young naturalist was involved with the Fellowship for Reconciliation, a group of socially progressive people who sought understanding in the realm of social conflicts. One of their earliest issues was racism, and to that end they supported Koinonia, a commune in Americus, Georgia. The mixed white and black commune was under attack by its neighbors. Not only were the races living together but the rampant anticommunism of the period made them a prime target for attack. “When I was sixteen, I jumped at the chance to go down there to help out. The rednecks would stretch wires across the roads,” he recalls. “They'd let the cattle out so that they'd be hit by cars and they'd drive through the commune shooting shotguns. This was my first exposure to communal living, to people throwing in their chips together instead of living a life of dog eat dog.”

  His father was a lawyer, so Republican that David remembers his family cheering when Roosevelt died. But in spite of this conservative ambience, his mother had a streak of the rebel in her. She loved the poetry of Rabindranath Tagore. “When she read me his ‘Crescent Moo
n’ poems, she planted in me the notion of people living in a more connected kind of way. By the time I was finishing high school I had a social conscience that was different from other kids I knew.”

  David and his naturalist friend took a trip to Mexico, where they collected camel crickets in the Sonora desert and scorpions and plants for biologists in California and Arizona. “I wanted to get as far away as possible from both Cincinnati and the whole country. I felt out of place in both. Somehow I developed the image that on the other side of the world, people lived in a different sort of way, that they looked more inside the person rather than at the surface. So what popped up as fitting that bill? Australia. Australia was about as far as I could get and still stay on the planet, not to speak of its special interest for me because it had separated from the other continents and had an animal and plant life that was distinct in many ways. I wanted to become a self-made biologist.”

  He arrived on the doorstep of a small rural university in Australia and three years later got a degree in zoology. Seeking the interrelationship between things, their diversity and beauty, he was disenchanted with the way zoology was taught. He hoped to do a master's thesis comparing different ecologies, but because he was the university's top student in biology at the time, it wanted to use him for other purposes. He was pulled off his project and put on something that involved the soil of pastures, important to cattle ranchers but of no interest to him.

  “Of all things, my two professors were the world experts on the regeneration of cockroach appendages. Their laboratory had thousands of little glass jars filled with snipped-off cockroach parts. The two of them would cut off the legs of the cockroaches at different segments and then note how much regeneration had taken place. That did it for me. If that was science, I wanted no part of it.