A New Book Published: Disabled Village Children
After nearly five years in preparation, and following extensive field testing and feedback from rehabilitation workers in over 20 countries on 6 continents, Disabled Village Children is at last in print. Written by David Werner with the help of many field workers and specialists, the book is intended for use by community health workers, rehabilitation workers and families.
Just as Where There is No Doctor grew out of villager-directed health work in the mountains of western Mexico, Disabled Village Children has grown out of Project PROJIMO, the pioneering effort of disabled villagers to create a rural rehabilitation program to serve disabled children and their families.
Project PROJIMO (Program of Rehabilitation Organized by Disabled Youth of Western Mexico) is the younger ‘sister’ of Project Piaxtla, the villager-run primary health care program that is now in its 23rd year. In the early years of Piaxtla, some of the health workers selected by their villages happened to be disabled. As the years passed, some of these disabled persons proved to be among the best health workers.
Participation in the health work brought them from a marginal to a central position in their communities. As a result, they tended to work with greater compassion and commitment than most of the able-bodied health workers. In time some of the disabled health workers including Roberto Fajardo, who is now a key figure in both Piaxtla and PROJIMO—became leaders of the primary care program.
Project PROJIMO (Program of Rehabilitation Organized by Disabled Youth of Western Mexico) is the younger ‘sister’ of Project Piaxtla
These disabled health workers became concerned that they knew very little about meeting the needs of disabled persons, especially children. Adding to the problem, the prices in the cities of braces, wheelchairs, therapy and other necessities for disabled persons were too high for the villagers to afford. The cost to get a child with polio walking would economically ruin the child’s whole extended family. Also, the health workers would often see a child who had begun to walk with braces (calipers), go back to crawling. Why? Because the family had spent half their years earnings for the child’s first braces and simply could not find the money to replace the braces each time the child outgrew them. Also, most orthopedic devices, made by specialists in the cities, were elaborate and heavy, and were fitted with big boots that made a child feel out of place in the village. Surely, thought the health workers, there must be more simple, low-cost alternatives.
So, five years ago, the health workers met with the other villagers of Ajoya to ask for community support to start a rural program for disabled children. The villagers responded enthusiastically and PROJIMO began.
Over the next few years, adventurous rehabilitation specialists with a sense of innovation and community commitment—including physical and occupational therapists, brace makers, limb makers, wheelchair makers, and special educators—made short volunteer visits to the program, to help teach their skills to the village health workers. As appropriate methods and skills were tried and developed, they were drafted into a series of simple clear guidelines, experimental instruction sheets and handouts for families. These were tested and corrected over and over again until finally they were put together into a booklet, which slowly grew into a big book (670 pages with over 4000 drawings): Disabled Village Children.
Today, among a wide range of rehabilitation services including physical therapy and correcting club feet, the disabled team makes low-cost, lightweight braces, wheelchairs and artificial limbs at only one-tenth the cost of less appropriate models in the cities. Word of the villager-run program has spread, and disabled children have been brought to Ajoya from 10 states ofMexico. More than half come from the slums in the cities. In a village of 850 people, the PROJIMO team has helped meet the needs of over 1500 disabled persons mostly children and their families. Families of disabled persons are starting sub centers in other towns. And visitors to PROJIMO from different countries and programs arc taking home ideas for forming their own programs run by disabled persons.
To those who have been expecting copies of the book for over a year, we apologize for the long delay. In part the delay has been due to hundreds of excellent suggestions and new ideas that have poured in from all over the world in response to our request for feedback. Typesetting had already begun when in September, 1986, David Werner took a trip to India, Pakistan and Sri Lanka, and visited 30 community rehabilitation programs. He gathered so many important new ideas that we had to stop the press to add them.
Disabled Village Children differs from other rehabilitation manuals in several important ways:
It has been written from the “bottom up”—through the experiences and trials of a user directed village program in a developing country.
The information is simplified and clear, but complete. It is not just what experts think village workers should know. Rather it is a collection of methods, ideas and suggestions that community rehabilitation workers, families and disabled persons have found most useful.
Above all, the book has been developed for, by and with disabled persons and their families. It focuses on the strengths of disabled persons and builds on these. It encourages the user to take a creative, problem solving approach, to adapt rehabilitation aids and activities to the local situation.
Finally, the book has a political bias: empowerment of the disadvantaged. It recognizes that disabled persons especially children in poor communities are often the most marginalized of all. Disabled persons and their families need to join together with all others who are treated unfairly, to work toward a society that is more loving, and more just.
It is essential that community health workers learn more about meeting the needs of the disabled. We hope that Disabled Village Children will help serve this purpose.
Disabled Village Children is organized into 3 parts. Part 1, “Working with the Child and Family: Information on Different Disabilities,” includes descriptions of common disabilities such as polio, cerebral palsy, muscular dystrophy, club feet, birth defects, spinal cord injury, amputations, mental retar- dation, blindness, and deafness.
Excerpts from Part 1 of Disabled Village Children
Part 1 begins with ideas for prevention, mentioning some general causes of disability in children.
The overuse and misuse of medicines in the world today has become a major cause of health problems and disabilities. This is partly because medicines arc so often prescribed or given wrongly… And it is partly because both poor families and poor nations spend a great deal of money on overpriced, unnecessary, or dangerous medicines. The money could be better spent on things that protect their health such as food, vaccinations, better water… Of the 30,000 medicinal products sold in most countries, the World Health Organization says that only about 250 are needed.
In chapters describing a particular disability, specific preventive measures are suggested. For example, in the polio chapter, suggestions are given for the individual. (A child with polio has difficulty walking and may not use her leg muscles as much as an able bodied child. Her leg muscles will gradually shorten and the range of motion of her joints will decrease. The shortened muscles are called contractures.)
At the first sign of a joint contracture, do stretching exercises 2 or 3 times a day every day.
Stretching exercises work better if you stretch the joint firmly and continuously for a few moments …instead of ‘pumping’ the limb back and forth.
Prevention in the community is also important. (The best protection against polio is a vaccination. But the vaccine needs to be kept cold until used to be effective.)
Seek community help with vaccination and in keeping vaccines cold. Sometimes vaccines do not reach villages because health posts lack refrigeration. but often storekeepers and a few families have refrigerators. Win their interest and cooperation.
Each chapter that describes a disability also contains ideas for therapy. Here is part of the cerebral palsy chapter:
There are therapy ideas for children with spinal cord injury:
Muscle re-education: All muscles that still work need to be as strong as possible to make up for those that arc paralyzed. Most important are muscles around the shoulders, arms, and stomach.
Disabled Village Children emphasizes our need to he aware of local customs. This example is from the deafness chapter:
One section of Part 1 is called “Helping Children Develop and Become More Self-Reliant.” It shows aids and ideas to help children learn to…
Excerpts from Part 2 of Disabled Village Children
Part 2 of Disabled Village Children is called. “Working with the Community: Village Involvement in the Social Integration, and Rights of Disabled Children."
Part 2 shows ways of making fun playground toys with simple materials.It also gives ideas on how to make small toys. It also gives ideas on how to make small toys:
This part also describes ways able bodied children and disabled children can learn from and help each other. It gives advice about organizing a village rehabilitation program and provides examples of community directed programs.
Excerpts from Part 3 of Disabled Village Children
Part 3 is called, “Working in the Shop: Rehabilitation Aids and procedures.” This part of Disabled Village Children explains, among other procedures, how to use casts to correct .joint contractures and club feet. It also describes ways to make casting materials, special seats and many other aids, such as …
…low-cost braces for a small baby…