Samples from NOTHING ABOUT US WITHOUT US
The following are samples from three chapters from NOTHING ABOUT US WITHOUT US: Developing Innovative Technologies For, By and With Disabled Persons.
1. Using Spasticity for Independent Living
Through experimentation Julio has learned to use his spasticity to be more self-reliant, despite his paralyzed hand and weak arms. He has also developed strong shoulder muscles to help compensate for his weak arms.
Julio Teaches Daily Living Skills to Another Quadriplegic Youth
Romeo was working as an ‘illegal alien’ in the USA to send money to his ailing mother back home. He became quadriplegic in a car accident. After 3 months in a hospital he was sent back to Mexico. On his arrival at PROJIMO, Julio quickly became his friend, role model and tutor. In California a nurse had given Romeo a ‘transfer board’ for moving from wheelchair to bed. But within 2 days at PROJIMO, Julio taught him to move to and from his wheelchair without help and without a transfer board.Then Romeo followed Julio’s example.
2. Four children with Muscular Dystrophy Lead a Program for Disabled Children
The Peraza family lives in a poor neighborhood of Mazatlan city. When the parents realized that four of their children had a disabling condition, they were determined to do everything possible for them. At that time in Mazatlan it was impossible to get significantly disabled children into the public schools. So they created their own school. With the help of an exceptional social worker, Teresa Paez, the Perazas met with families of other disabled children in the community and determined to start their own education and rehabilitation program for their children. They called themselves Los Pargos, the name of a local fish which the elite consider inferior
Los Pargos was organized as a cooperative, of which the disabled children and their parents were participating members. Most of the families were quite poor. To raise money for school supplies and transportation, the families made colorful trinkets to sell. Outstanding among these were artificial flowers and ornaments, made mostly out of fish scales. Parents and children would go on ‘work picnics’ to the seashore, where fishermen cleaned fish. They collected sackfuls of fish scales, washed and sun dried them, stained them different colors, and glued them together into delicate flowers and bouquets.
All four of the Peraza siblings became gifted artists and craftspersons. But the most outstanding was Sósimo. Like the other Pargitos, Sósimo had a fascination with the ocean and its creatures. One of his most haunting paintings is a portrait of a woman in the bottom of the ocean. After Sósimo had died, his sister Dinora told me he had painted it “because when people die they go to the bottom of the ocean and that is what makes the waves.”
Eventually, over a period of several years, one after the other of the three Peraza brothers died from pulmonary complications. (Now only their sister, Dinora, is alive). It was amazing what these four youth with muscular dystrophy managed to accomplish, and the pride and joy they took in doing it while their physical condition gradually deteriorated. For all their creativity and problem-solving skills, they could not halt the progress of the disease. But the dignity, caring, and leadership skills they developed and shared with their peers lives on.
PROJIMO’s Forays into Appropriate Paper-based Technology (APT)
Most of the special seats described in this book have been made at fairly low cost with wood or plywood. But for many families even local wood is too expensive, or hard to obtain. For this reason, in Zimbabwe, Africa, many years ago an elderly man named Bevill Packer began to make special seating and other assistive devices out of waste paper and cardboard. In this Appropriate Paper-based Technology, layers of paper and/or cardboard are glued together with paste made from flour and water. Paste can even be made from left-over ‘sadza,’ a flour porridge widely used as a weaning food. When well made, these paper based seating aids and other devices can be unbelievably strong.
Apart from low-cost (in terms of materials), paper-based technology has other advantages:
Easy and fun to make. Young children can take part in making the equipment. (However, considerable care with technique is needed for the results to be strong and durable.)
Very adaptable to personal needs. Seatbacks and various supports can be molded to meet the needs of the individual child. Similarly, adjustments can be made, hollows scooped out, or protrusions (lumps) added where needed for added comfort, protection, or support.
Gentle touch. Especially when the main structures are made of corrugated cardboard (as used in many ‘thick wall’ cardboard boxes) the resultant seat or device has a surface that is somewhat flexible. This provides a softer, more giving, more personal touch and is gentler where it comes in contact with knees, butt bones, and other bony areas. Thus it tends to be more comfortable and protective (against pressure sores) than wood, plastic, or metal.
Making Assistive Devices for Cruz
Cruz is a 2 year old boy with a type of cerebral palsy that ranges between floppy (low muscle tone) and spastic (uncontrolled tightening of muscles). His mother loves him dearly and devotes a lot of time to helping him develop his body, mind, and spirit to their best potential. Cruz’s brothers and sisters also enjoy playing with him, talking to him, and helping him with activities. Thanks to this loving family effort, Cruz has gained fairly good head control, and with difficulty manages to open his hands to wave hello and goodbye. He is learning to sit with the help of sandbags across his folded knees and against his hips. He also tries very hard to speak. Although his words are hard to understand, his family has learned to interpret them, and encourages him to speak as much as possible. The boy thrives on all the hugging, handling, and encouragement he receives.
A Wooden Seat the Child Hated
Cruz’s mother brought the boy to PROJIMO from a village about 15 miles away. In a dynamic interchange of ideas and experience, the rehabilitation workers learned as many practical developmental activities from his mother as they were able to teach her. It was agreed that Cruz might benefit from a special seat. Juan designed and built a handsome plywood seat for him, complete with a removable backrest so that, when the backrest was removed, Cruz would need to use his back and trunk muscles to sit upright.
But for some reason Cruz hated his wooden seat. Though usually cheerful, whenever he was placed in the seat, he began to scream and wail. His mother was sure he would get used to it, but after two months he still refused to accept it.
A Cardboard Seat He Liked
Because at this time PROJIMO was experimenting with paper-based technology, they tried sitting Cruz in an uncompleted seat made of laminated corrugated cardboard. To everyone’s amazement, he was all laughs and smiles. His mother was amazed at the difference.
We are not sure why Cruz—who had such a strong dislike for the plywood seat—took an instant liking to the cardboard one. The positioning and support provided by each was much the same. We suspect that the cardboard seat—with its thick, rounded, relatively soft, yielding structures—was somehow friendlier and more similar to human touch. By contrast, the plywood seat, even with its cushioned lining, was more rigid and unyielding; despite the smiling rabbits painted on its sides, it was not as child-friendly.
A cardboard seat was built to meet Cruz’s particular needs. At the front of the seat a removable post, or pummel, was placed to keep the boy from slipping forward. A large table top fit low around the boy’s waist, to help stabilize his lower trunk. A removable, U?shaped hip support fit into the seat, to help stabilize his hips and to hold him slightly forward from the seat back. That way, when he chose, he could sit upright without leaning against the seat back. (The idea for this U-shaped hip support came from watching Cruz’s mother place sand bags around his hips to help him sit upright.)
All the parts of the seat-including the table top, pummel, and U-shaped hip support-were made by laminating (pasting Children in the village helped to build together) layers of corrugated cardboard cut from old car- the cardboard seat. tons. On trial, Cruz sat fairly well in the seat. But there were some problems, which required modifications in the seat:
When Cruz was excited, his legs stiffened and his tense body pushed backward. So a removable ankle bar was added to keep his feet on the footrest. The bar was made of cardboard reinforced by a flat metal rod, bent to help position his feet. A removable foot-separator of layered cardboard was added to help him position his feet well.
Although the U-shaped hip-support at times seemed to help Cruz sit upright often he would slump or push back against the seat back. Therefore, a low-back support of layered cardboard was added, which could be removed once he gained better hip and back control.
A Cardboard Standing-Board for Cruz
Cruz’s mother, brothers, and sister often held the boy in a standing position, and Cruz did his best. At first his legs would stiffen spastically in a tip-toe position. But if held quietly for a few moments the spastic muscles would gradually relax and his feet would flatten on the ground. Cruz’s mother had brought him new, high-top shoes, which seemed to help him position his feet better.
The PROJIMO team felt Cruz might be ready for a standing-board. As for his special seat, they decided to use corrugated cardboard as the primary structure. The cardboard was reinforced with wooden struts and had a wooden base-board.
On a preliminary trial of the standing board, Cruz stood fairly well on it. His feet rested flat on the base-board and were held apart by the foot-holes in the vertical frame. The boy seemed delighted with being able to stand ‘independently.’
However, the boy’s knees angled inwardly as he stood. He needed something that would hold his legs straight and apart. So a leg-separator was made by reshaping and gluing together two cardboard boxes to form a long, thin triangle.
A big advantage to a standing frame made of cardboard is its smooth, soft surface and its capacity to bend or sink in slightly under pressure. The cardboard therefore provides more gentle support for bony areas such as Cruz’s knees.
PROJIMO’s early trials with cardboard assistive devices show great promise. The PROJIMO team still needs to improve its technology, to create smoother, cleaner products, but the results are remarkably functional. Cardboard has a number of advantages over other materials: especially its low cost and the ease with which structures can be modified and adapted to meet individual and changing needs.