Montería—The Provincial Capital
Compared to Medellín, Montería—provincial capital of the Department of Cordoba—looks more like a modest country town. Even in the city center, traffic is dominated by motorcycles, taxis and buses, with relatively few private cars.
Montería, like Medellín, has a dark reputation as a hot spot for crime and violence. For many years it was base for one of the most powerful paramilitary groups.
As with Medellín, the central part of Montería is surrounded by a mushrooming area of squatter settlements. The poorest and most peripheral neighborhoods are referred to as veredas, or pathways, because the myriad of tiny shacks are reachable only by narrow foot and motorcycle trails, rather than roads. In contrast to the precipitous favelasof Medellín, however, the terrain is relatively flat, and physically more accessible. Yet some of the veredas are said to be so dangerous that outsiders don’t dare set foot in them.
For the Montería workshop—as for the one in Medellín—over twice as many participants showed up as I had requested. On the day for hands-on construction of assistive devices, over 60 people were involved These included the nine disabled children being assisted, and their parents. The large number made the activity rather chaotic. But at least we were all in one very large open room, where there was ample space for the 9 busy groups. (Being all in one area made the sharing of tools and the overseeing the many activities much easier than in the Medellín workshop, where the different groups were widely scattered outdoors and indoors and on different floors.)
The Children of Montería
Luis is a 15-year-old boy with a condition called progressive myositis ossificans (also known as fibrodysplasia ossificans progressiva). He was born apparently normal, but little by little the soft tissue around many of his joints have turned into bone and the joints of his legs, backbcan’t sit.one and one arm have become frozen in deformed positions.
He spends most of the day lying awkwardly in an adjustable donated wheel- chair. He also spends time standing with the help of a stick. Although his hips are nearly frozen he manages to walk short distances, but because of the stiffness of his body he can’t sit.
The group of mediators who visited his home asked him what he most wanted to do, within his possibilities. He said he wished he could write and draw and use his hands, which he can’t do now because he can’t sit, and to stand he has to hold his pole with both hands. So he and the his group designed a unique table with an inclined support he could lean against while standing.
At the opening workshop plenary they presented their plans to everyone.
Luis was very shy about being exposed and talked about in front of such a large group. When people asked him to speak for himself he buried his face against his mother and began to sob. We all realized that we had not taken his feelings enough into account.
Eventually Luis lost some of his shyness and joined in, helping to sand some of the pieces. The completed standing table included a board for him to stand on so the table can’t scoot out from under him when he leans on it.
In the final presentation Luis took pride in showing the audience how he could stand and write at his new table. He smiled and spoke with confidence—a very different person from the one who had hidden his face and sobbed at the open plenary. The table will no doubt make a big difference in his ability to do things. But just as important is his new sense of self-esteem and readiness to face the world.
María is a bright six-year old girl with cerebral palsy who lives in a poor settlement on the outskirts of Montería. She has been given all kinds of costly and attractive assistive devices, which do not meet her needs. Her wheelchair was way too big, and the depth of the seat prevented her from sitting in a good, upright position. Her backwards lanting position tends to trigger the sudden spastic stiffening of her body. The wheel chair was equipped with a detachable headrest that was mounted in a poor position (see box on this page).
Seeing that the wheelchair didn’t work for the child, the local mediator had asked a local craftsperson to build a special wheeled seat for María. It was lovely and well upholstered, and fit the child better than the wheelchair. But it had no seatbelt, and when the little girl went into spastic extension she arched up and slid out of it.
Because neither the of the above assistive devices worked for María, her mother usually sat her in a simple child’s rocking chair, which fit her better but had no footrests and no seatbelt. Because of spasticity María was constantly sliding out of it. Also, similar to the wheelchair, the chair-back pushed her head forward, so that in order to rest her neck, she kept her head turned to one side.
After visiting María and her mother in their home, a small group of mediators with the family designed ways to adapt both her wheeled seating aids to better meet her needs. The next morning at the opening plenary the group together with María’s mother, demonstrated the problems with the costly equipment she’d been given and showed everyone their designs for modifying the equipment to better meet María’s needs. Then they set about to modify the wheelchair. They built a padded insert that reduced the depth of the seat to let María sit at a better angle. They also scooped out indentations behind her head and under her buttock, allowing her to keep her head in a better position and to keep her body from slipping off the seat. A local carpenter helped adjust the footrest.
The Importance of the Positioning of Wheelchair Headrests
María’s wheelchair was equipped with a detachable headrest that was mounted in a poor position. Without the headrest María’s head tends to trust backward over the back of the wheelchair.
They adjusted the seatbelt to fit low and tight across her hips. But when they tried out the chair with María, they found problems with the depth and angle of the back, and with the placement of the seat belt and support straps. Unfortunately the group had already upholstered the seat before making all the needed changes—and time was running out.
In the last hour of the workshop, the group set about modifying María’s other wheeled seat. They added a soft cloth seatbelt, so that it would pull low and tight across the girl’s hips. They raised the footrest. And they cut indents for her knees into the front of the seat. These decreased the seat-depth so she could sit at 90 degrees with her butt against to backrest. The indentations also helped hold her spastic legs apart.
In the final presentation María sat much better in her wheelchair. But it was evident that it still needed improvements (which the local mediators promised to help the family complete).
However, the special wheeled seat was a great success. Both she and her mother were delighted.
Mauricio is a slender ten-year-old boy with spastic cerebral palsy who lives with his parents and two-year-old brother in a poor barrio of Montería. There was something haunting about him—an aura of loneliness and hunger for affection in the disabled boy’s eyes—that pulled my heartstrings from the first time I saw him. Although he can’t speak, he appears to understand quite a lot and is clearly sensitive to the family dynamics. During his first eight years of life his parents had showered him with their love and attention, as their only child. But since his unblemished, roly-poly baby brother was born two years ago, his parents have redirected most of their affection and expectations toward the younger child.
As a result, Mauricio currently gets little attention other than being fed, bathed, and changed. The doleful youngster spends most of his waking hours lying on a mattress on the floor, watching television.
The TV is kept on a high table. To watch it the boy lies on his belly and arches his back and head backward so far it is beginning to cause a deformity. When the visiting mediators asked his mother why she didn’t place the TV lower to the ground, so he could watch it more comfortably, she said she had to keep it out of reach of Mauricio’s mischievous baby brother.
Mauricio had been donated a wheelchair, but it was hidden away, unused. And with good reason. When the visiting mediators tried to sit Mauricio in the wheelchair, his spasticity stiffened and twisted his whole body so severely that they couldn’t put him a good position. Even when they finally managed to seat him, more or less, the seatbelt was attached too high to even begin to hold him in place.
Mauricio had also been giving orthopedic appliances: above the knee braces with a girdle. But given his extreme spasticity and lack of body control, the appliances wer totally inappropriate.
On their visit to Mauricio’s home, the mediators came to realize that the boy’s emotional needs were as great as his physical dysfunction. For example, in the evening when his father returned from work, the disabled boy’s face brightened into a huge, contorted smile. Clearly he had a lot of love for his father. But his father paid no attention to the affection-hungry boy. Instead, he picked up Mauricio’s plump, very spoiled little brother and began to hug and play with him dotingly, ignoring the disabled boy completely. Lying unnoticed on his mattress, Mauricio began to sob.
At first the visiting mediators were at a loss about to what to do for Mauricio. It seemed unlikely they could adapt his wheelchair so he could sit comfortably in it. And even if they partially succeeded, they were doubtful whether his parents would sit him in it. It appeared his mother and father had given up on him, and were resigned to just let him lie all day on the mattress.
Given the sad reality that Mauricio spent all day on his mattress watching TV, the mediators decided to try to make his prone position more comfortable for him, and less damaging to his neck and back. They designed an inclined bed for him to lie on, so he could watch the TV without straining his back and neck as much. In their design, they also included a large box-like container at the head the bed, for the TV. This way the TV could be placed lower to the ground, yet out of reach of the little brother.
The next morning at the plenary Mauricio’s group presented their plans to all the work- shop participants. After experimenting with Mauricio to find the best angle for the incline, they set about building and painting the sloping bed.
Mauricio seemed to enjoy all the attention he got in the workshop. For him, one of its high points, I think, was that his baby brother wasn’t there. He had his mother all to himself. The frenetic chaos on all sides seemed to rekindled the mother’s protective instincts, and she became closer and more loving with him. I think all the interest and concern directed toward her son may have helped her see him again less as burden and more as a person with his own kind of unique beauty.