Remarkable Creativity and Productivity: What We Made
I have facilitated assistive device workshops in many countries and circumstances, but rarely have I encountered participants as enthusiastically productive and creative as in these workshops with Los Pipitos. In the two days of constructing the aids, the participants produced nearly 50 different assistive devices, ranging from very basic to very ingenious.
Examples of aids made included:
Special seats, some made of wood, some of plywood, and some completely or partly of laminated cardboard (paper-based technology)
Standing frames, of wood, of laminated cardboard, and combined materials
Modified seating for better positioning and function in wheelchairs and other chairs
Adaptations to give a child better mobility in his outrageously oversized wheelchair
Tables for chairs and wheelchairs Modification of wheels on a commercial walker to improve balance
Wooden commode stool for easier, happier toileting
Leg splints to allow a diplegic child to start walking
Enclosed wooden swing
Toys and rattles for manual dexterity and early stimulation
Hanging mobiles for eye use, head control, and developing use of hands
Reclining cardboard wheelchair insert
Special bed for sleeping and for learning to walk (holding onto it)
Torsion cables to correct foot position and improve gait
Head-pointer for writing (for a girl with arthrogryposis and no hand function)
Adjustable stand for mouth-writing, which adjusts into a tray for independent eating
Cardboard arch supports to correct foot deformity
Parallel bars made of rope to improve balance
Night splints (padded plaster of Paris) for improving position of feet
Footrest for a wheelchair for comfort and to prevent contractures
Innovation: Torsion Cables to Straighten Christopher’s Feet
One of the most original aids constructed at the Condega workshop was made for Christopher, a bright 8-year-old boy with spina bifida. To help him begin to walk, Christopher had previously been fitted with plastic below-the-knee braces (AFOs).
When the boy’s group visited his home, they asked him what he most wished he could do. He said “Caminar mejor!” (Walk better).
Christopher ’s gait was very wobbly and unstable. His feet pointed out to either side rather than forward. Other kids teased him. On examining the boy, the group found he had dislocated hips, and very little muscle control for rotation of his legs. A physiotherapist in the group thought that making parallel bars for him to practice walking might improve his gait. But for Christopher—who could already walk, if poorly, without holding onto anything—this seemed like a big step backwards. What to do? On looking in Nothing About Us Without Us, the group found illustrations of “torsion cables”—flexible hoses that run from the waist to the shoes. They are twisted so as to rotate the angle of the feet into better position. They are often used for a child whose feet turn inward (pigeon-toed). But why not for a child whose feet rotate outwardly. No one in the group had experience with such cables, or was sure that if they managed to make them they would work. But the family was eager and I encouraged the group to try. Christopher’s father fetched a thin-gauge plastic garden hose (about 1.5 cm diameter) from the patio. They tried twisting it to see how much torsion it could provide, and it appeared to be enough.
The next day both Christopher’s parents went to the workshop with their son, and and worked closely with their group. They started explaining their plans, showing their design to everyone. Then they started making the cables.
Someone bought a leather belt in the market. To this they attached the top ends of the hoses with nuts and bolts. Rather than attaching the bottom end of the hoses to the heel of the shoes, which is the usual way, they bolted the hose to the outer side of the boy’s plastic braces. When completed, to put them on, they twisted the hoses outwardly enough so that they would in turn gently rotate his feet inwardly. To everyone’s delight, when Christopher tried walking with his new “hoses,” his feet pointed in a much more forward position, and his gait improved conspicuously.
Another innovation was to conceal the torsion hoses from view. Typically such cables are worn outside the pants. This can make the child look “weird” to other children: “He looks like a Martian!” So the group decided to fit the hoses inside his pants. Both the boy and his parents applauded the idea.
A foot wedge to correct foot deformity. An additional problem with Christopher was that one foot was developing a contracture that bent it inward and downward (equino-varus). Even inside the AFO, the foot bent over when he walked. This further compromised his gait. To help correct the problem, the group made a simple laminated cardboard insert to put inside the brace, so that when he walked it would help stretch and correct the deformity rather than worsen it. Impressively, with the insert, Christopher dipped less to the side and his gait improved.
In the final evaluations, when Christopher showed everyone how much better he could walk, all were amazed. The suggestion was made that a stronger hose could give a bit more torsion, to rotate Christopher’s feet even a bit forward. I pointed out that in PROJIMO they use hoses for gas welding to make torsion cables that provide a stronger, more resilient twist. Christopher’s father, who had played a key role in making his son’s device, said he would get some gas welding hose and make them himself. He knew what to do because he’d taken part.
All in all, Christopher’s success was a wonderful example of how simple innovative aids can be made by working closely with the child and family—and how, by including the family in the problem-solving and creative process, the family becomes empowered to take the lead themselves. Family empowerment of this sort can in turn lead to long term benefits for the child, the family, and the whole community.
One of the most promising technologies practiced in aids-making workshops is the use of laminated cardboard, made by gluing together the walls of corrugated cardboard cartons. Although some of the Los Pipitos participants had read about “paper-based technology” in Nothing About Us Without Us, only one person had actually used it.
But many were eager to try it. The building materials—old cardboard cartons—are cheap, easy to work with, and amazingly strong when carefully laminated with homemade flour paste, or (for faster drying) white glue. Yet the finished aid has enough softness and “give” that it lends itself to many kinds of children’s assitive equipment.
Note: It is important, several days in advance of the workshop, that large, sturdy cardboard cartons be collected, laminated in large squares, and pressed flat until thoroughly dry. If the cardboard is laminated the same day the aids are made, it will still be damp and flimsy. (For instructions see Nothing About Us Without Us, page 72.)
In Los Pipitos workshops, participating groups used laminated cardboard for several kinds of aids, including those shown here:
There are many more examples of paper-based technology in this newsletter. Groups sometimes used cardboard in combination with wood and other materials. They used it for foot separators on parapodia, protective cushions, seat backs, and wedges for better posture. But the most frequent use was for special seating.
A Table and a Swing for Yelvin
Visiting the children in their homes proved important for making aids to match their needs. Yelvin is a stunted, developmentally delayed nine-year-old boy. He lacks balance but can take wobbly steps when held upright by his hands. Had the group not visited his home, they might have recommended a wheelchair or walker. But visiting his home made clear such aids would be of little use there. His family lives in a tiny pole-wall shack in the forest at the end of a steep trail.
There is no furniture in the hut except for a small wooden chair that Los Pipitos made for Yelvin. A rough wooden plank on posts is the only semblance of a bench or table. The family stands or sits on the ground to eat. The terrain outside is too rough and steep for a wheelchair, and even inside is too uneven for most walkers.
In the home the group experimented by stretching two ropes as improvised parallel bars. With a bit of encouragement, Yelvin held the ropes and gingerly took a few steps, trying to get his balance.
This seemed better than firm wooden bars because it seemed to help him gain more balance and advance toward walking alone.
Among the most promising resources in the hut was a gaggle of young boys from a house higher up the slope. The boys were eager to help, and we showed them how they could have Yelvin hold a rope stretched between their hands, encouraging him to take steps. This requires more balance than simply holding onto his hands.
All considered, what the family seemed to want most was a table where Yelvin could eat. So the device the group decided to make was a table that could attach to his chair, which they also repaired. In addition they built a rack over the table from which they could hang toys to stimulate the use of his hands.
However the aid that Yelvin enjoyed most was an enclosed rope swing, made ingeniously with bars of wood with holes that the rope passes through. Yelvin’s grand smile was the measure of success.
Helping Karla Draw, Read and Write, and Drink
Karla is a 23 year old girl born with joint deformities (arthrogryposis). She rarely leaves home and cannot read or write or feed herself. But wants to. She has a wheelchair but greatly prefers her rocking chair.
Holding a pencil in her mouth, she was able to draw if someone held paper for her. Karla’s group started by helping position her more comfortably in her rocker. (See the photos in Paper-based Technology, below).
So for the time being she prefers using her mouth. Los Pipitos is going to find a way to help Karla learn to read and write. I (DW) have put her in touch with a world-wide club of persons with arthrogryposis.
The Biggest Successes—Two Poster Children Who Walked for the First Time
Surprisingly, the two children for whom aids built in the workshops perhaps made the biggest difference both happened to be “poster children” for the national Telethon.
Ironically, both these “child symbols” for El Teletón are also symbolic of the large number of children who have received assistance and equipment that is inappropriate for them, or even counterproductive in terms of helping them reach their potential.
Joarling, the Teletón 2005 poster child, is a bright 8-year-old with spina bifida. To help him get around better, he was given a magnificent hand-powered tricycle.
Joarling loves his trike. But when participants visited his home, he confided that his biggest wish was to walk. With adequate bracing and crutches, clearly he had walking potential; he could lift his full weight with his arms, and had minimal contractures in his hips and knees. Yet for all these positive signs, rehab professionals had made little effort to get him walking. Perhaps they had been taught that: “Spina bifidas don’t walk.”
Responding to the boy’s wishes, the group decided to start Joarling off with a standing frame. But considering his arm strength and high motivation, I guessed he might be able to begin walking with a parapodium (a kind of standing frame designed for walking), first on parallel bars, later with crutches.
No one had ever seen a parapodium, much less made one. But on looking at the pictures in Nothing About Us Without Us, everyone wanted to give it a try, especially Joarling.
When his parapodium was done and they strapped the boy into it, he found he could stand securely upright without holding on to anything! Then, standing between the parallel bars, to everyone’s amazement he at once fearlessly began taking big steps, swing-through easily between the bars. He laughed with joy and everyone applauded. Joarling loved his parapodium.
Joarling walked so well on the bars that he wanted to try crutches. Although only an hour remained, the two volunteer carpenters, one a crutch-user himself, quickly made a splendid pair of adjustable crutches.
When the crutches were finished, Joarling tried them. They still needed adjustment, and he needed practice. But it was clear he would soon be bounding about on them. In the following weeks he scampered all over town. We warned him to start cautiously, and check his feet often for sores, since they lack feeling.
Evert, the other Teletón poster child, is a five year old boy with diplegic cerebral palsy. Like Joarling, he too had a potential for walking. Perhaps because of the spastic scissorng of his legs and weak thighs, no one had tried leg supports to see if he could walk. But Evert had good strength and control in his trunk and arms—and was eager.
Evert’s group made two padded wooden splints, which they strapped to the backs of his legs to keep his knees straight. With these he was able to stand between the parallel bars.
Valiantly Evert made an effort to take steps, but his legs scissored too much. However, when a foam roll was placed between his thighs, it separated his legs enough that he could actually take steps. Soon he was walking back and forth between the bars smiling happily.
The group had at first thought to make a standing frame for Evert—but then decided on a parapodium, to walk with. To discuss the relative merits of each, they made cardboard models.
The parapodium they built had some problems (nails too small). But with reinforcement it was clear the boy could learn to walk with it.
Obviously, both Evert and Joarling have great potential for walking. The improvised aids are a good start. But to meet their full potential, they will need good orthopedic appliances. However, obtaining such appliances in Nicaragua is often not easy. (See below.)
The Paradox of Professional Expertise
One perplexing observation that I and others observed in the Pipitos workshops was that often the most effective rehabilitation aids were created, not by the rehab professionals, but by caring lay persons.
Most of the active members of Los Pipitos are parents—mainly mothers—of disabled children: volunteers with a lot of empathy who reach out to help families and children with similar needs. These parents comprised the majority of the workshop participants. The assistive devices created by these dedicated lay workers often came closer to meeting the specific needs of the children than did those spearheaded by the more highly trained professionals.
One reason for this paradox, I think, is that the lay persons were less sure of what was needed. Therefore they took a more exploratory, open-ended approach. They were more willing to listen to the ideas and wishes of the child and her family. And they were more inclined to look for ideas in their books, to discuss the pros and cons of different aids for the child in question, and to use those designs in the guide books not as something carved in stone but as a springboard for designing a device adapted to the unique needs of the child. They were guided not by preconceptions, but by love.
By contrast—with several refreshing exceptions—the professionals tended to think in a box and to prescribe by rote. If the child had such-and-such disability, he could achieve this, but not that. According to the label she was tagged with, she needed this kind of assistive equipment and not that. As a result, the assistive devices that the professionals designed for a child tended to be generic, not individualized. They were skillfully constructed and beautifully decorated, yet often didn’t quite match up with the needs or wishes of the child. Too often they tried to adapt the child to the device rather than the device to the child.
For example, when the professionals took charge of producing a special seat for a child, it was often box-like and visibly uncomfortable. Everything was squared off, stiff, and non-adjustable. The back was straight up and down. Worse still, the finished seat often didn’t fit the child. Yet the errors were hard to correct. The experts were so sure they were right, they would nail and glue it together with finality, or paint and upholster it, before adequately testing it with the child. As a result, in the final evaluation session when each device was demonstrated with the child using it, there were several occasions when devices conceived by professionals simply didn’t work.
One example was a very box-like seat made of laminated cardboard. Overall, the seat was too small for the child and did not provide adequate support. Yet at the same time the seat was so high that the girl’s feet dangled several inches above the floor. To correct the error, my books came in handy—as a footrest! But if the books had been used earlier for planning and problem-solving, the results might have been more functional.
Volunteer carpenters outstanding In Condega, two of the most capable and innovative participants in the workshop were two local carpenters. One had a disability from polio. The other taught in the “Centro Juvenil” in Estelí (see page 4).
In the workshop the two local carpenters pitched in enthusiastically, with both creativity and skill. One of their most remarkable feats was their rush job of making adjustable wooden crutches for Joarling.
An Aid That Wasn’t
Another example of an aid that backfired, overseen by a very caring physiotherapist, was a standing frame for Marlon, a child with spastic cerebral palsy.
The group did a fine job making the device out of laminated cardboard. However everyone was so sure it would work well that they upholstered it beautifully with vinyl before testing it. Indeed, this took so long that they were late for the final plenary evaluation. Then, when the boy finally tried it, it proved to be less of an assistive device than an instrument of torture.
Wrong measurements. Frame should reach chest but reaches chin.
Top of frame is too wide. Child can’t reach forward to play while standing.
Misplaced vertical struts. When the boy’s feet are placed through the footholes in the frame, his toes jam into the struts. Ouch!
Painful foot-lifts. Beneath each foothole was a thin bar under the fore-foot to stretch heel cords. However, the foot-holes are too small for shoes, so he has to stand barefoot, his whole weight on the 1⁄2 inch wide bar pressing the bottoms of his feet.
Ouch, in every sense! But hard to change. It’s already upholstered.
Costly Imported Wheelchairs Are Not the Best Answer
Socio-economically, Los Pipitos is in a strangely polarized circumstance. On the one hand, in Nicaragua poverty is rife. Thanks in part to US covert and overt intervention over the last two decades, Nicaragua has now become the second poorest country in the Americas. (Haiti remains the poorest.) On the other hand, Los Pipitos, as the country’s largest and most successful program for dis- abled children, receives handsome donations from foreign charitable organizations, especially in kind. Additionally, the Teletón—the nation’s celebrity-driven event to raise money to help disabled kids—has helped Los Pipitos build spacious, impressively equipped rehabilitation centers in several cities (the edifice complex).
Yet for all this benevolent assistance, some big gaps remain in meeting children’s needs. One problem is that the fancy donated rehab equipment is not always well suited either for the children or the situation they live in.
Children’s wheelchairs are a case in point. I saw some children in wheelchairs that fitted them well. However for more than half the children, their wheelchairs were far too big or otherwise ill-suited. This limited rather than increased their function, and caused discomfort, poor posture, and increased deformity.
Fortunately, a team of Canadian seating specialists had helped adapt the giant wheelchairs by adding cushions, wedges, footrest lifts, etc. Yet these additions made the chairs even heavier and harder to move.
Improving Oscar’s Mobility
Oscar is a five-year-old who attends the Pipitos’ special school in Jinotepe. He has a huge bright red wheelchair with arm rests up to his shoulders. Oscar could only reach one wheel at a time. By leaning first to one side or the other, he could barely move the chair by contorting sideways to push first one wheel, and then the other. He depended on others to move.
Oscar’s group decided the only real answer was to get a wheelchair closer to his size. This would be a challenge for the future. Provisionally, however, they simply removed the armrests from his wheelchair. This allowed him to reach both wheels at once. (Removing the armrests wasn’t that easy; they were screwed hard into place.)
For a selection of individually designed wheelchairs made by PROJIMO in Durangito, see: www.healthwrights.org/sillas.
However, without the armrests the boy—who has spina bifida and weak pelvic control—felt unstable. So the group added a seatbelt, and the boy then felt secure. However at first the belt was attached too high and caused a bad position. Oops! So they repositioned the belt low across his lap. This helped him to sit in a better position. Now Oscar could propel himself well using both hands at once. He was overjoyed!
Why does Nicaragua have such a hard time finding wheelchairs that meet children’s needs? 25 years ago the Organization of Disabled Revolutionaries (ORD) began building low-cost, all-terrain wheelchairs. Today several shops, mostly run by wheelchair users, make and repair wheelchairs. Still, there are almost none for children.
Possibilities were discussed for ways to respond to this unmet need. We have approached Ralf Hotchkiss, founder of Whirlwind Wheelchair International (WWI) in San Francisco, to see if he can do something. He has long been involved with wheelchair-building programs in Nicaragua.
Another possibility we are exploring is for the PROJIMO wheelchair-making team in Mexico to train disabled Nicaraguans in designing and building children’s wheelchairs, as it has done for apprentices from several states in Mexico and Guatemala.
The Need for Low-cost Shops to Make Leg Braces and Other Assistive Equipment
Appropriate children’s wheelchairs are not the only assistive equipment hard to get in Nicaragua. There is great need for other ostensibly “high tech” aids like orthopedic appliances (braces).
Obviously, Evert and Joarling—the two poster children described earlier—both had a great unmet potential for walking. The walking aids improvised at our Los Pipitos workshop got them off to a good start. But to meet their full ambulatory potential, they will need good quality braces.
But in Nicaragua, such orthopedic appliances are hard to obtain. Made only in a few shops, they are outrageously expensive. Los Pipitos could benefit greatly by setting up a few easily accessible, low-cost brace shops, preferably run by disabled technicians.
As with wheelchairs, we (Los Pipitos and PROJIMO) are exploring the possibility of having a few disabled persons from Nicaragua apprentice brace making at PROJIMO in Mexico. Then Los Pipitos can set up an orthotics shop in Nicaragua, and then teach others—a kind of multiplying effect. We are working to overcome immigration obstacles. If anyone has suggestions, please let us know.