The Two Faces of Medellín
Medellín for years was the enclave of Pablo Escobar and the infamous Medellín Cartel. For years it was known as “the murder capital of the world.” In 1992 its homicide toll peaked at 6800 (six times that of Los Angeles’ peak toll of 1,180).
To the modern tourist or international businessman visiting downtown Medellín today, it appears like bucolic oasis. In recent years the wealthy drug lords have cleaned up their image and become respected members of the ruling class. Cartel bosses have metamorphosed into neoliberal tycoons. The opulent core of the city—with its hundreds of sky scrapers, banks, 5-star hotels, luxury homes, discos, and high-rise condominiums—has been constructed with drug money. Coca Cola, McDonald’s, Texaco, and cell-phone towers are omnipresent.
But Medellín also has another, less exuberant face. Surrounding the prosperous central part of the city is its ever-proliferating “septic fringe”—hundreds of thousands of tiny houses and squatter shacks clinging precariously to the steep slopes of encircling mountainsides. The closest I have seen elsewhere to these vertical slums surrounding a bustling metropolis are the notorious favelas of São Paulo and Rio de Janeiro, Brazil. As in these favelas, crime, violence and extortion by gangs of thugs and corrupt local politicians are rife.
The city authorities have made some effort to improve the living conditions of this massive influx of displaced persons. They have introduced electricity and water lines into many areas. They have built a few serpentine roads, and in less accessible areas have replaced precipitous footpaths with a bewildering network of crudely made cement steps. On two of the mountain flanks they have even built giant aerial ski-lift-like cable cars to transport people far up and down the mountainside.
But the overall situation remains much the same, and no solution is in sight. Every year, as more and more farming families are displaced by the violence in rural areas, the coveys of squatter shacks inch their way higher and higher up the ragged periurban slopes, and attach themselves to ever more perilous settings. Nearly every day newspapers show photos of “housing landslides” where mountainside shacks collapse on one another in a chain reaction, often killing or disabling the residents.
A Disturbing Initial Finding
On our visits to children’s homes in preparation for the workshops, one surprising finding was that many of the children—even those living in the poorest, most inaccessible shacks—already had a wide range of costly, elaborate assistive equipment. A spectrum of welfare agencies and charitable NGOs, and religious organizations have bombarded the children with a plethora of devices: wheel chairs, baby buggies, standing frames, walkers, and orthopedic appliances.
The problem was that most of this donated equipment was grievously inappropriate in relation to the children’s needs. As I have noted before on visits to other countries, most wheelchairs given to children are far too big for them. As a result, the children are often uncomfortable, sit in a bad posture, have increased spasticity, and cannot realize their potential to move about on their own.
At least two children we saw had developed pressure sores from oversized chairs.
Such ill-fitted wheelchairs are not unusual. But in Colombia the deluge of inappropriate wheelchairs and counterproductive assistive devices was extreme. For this reason, in addition to designing and constructing new devices, we gave a great deal of emphasis to the modification and adaptation of the assistive equipment the children already had.
Logistics of the Workshop
The activities involving each workshop took three days. These workshops in Colombia were organized similarly to those I’ve conducted in other countries.
The first day of the program was focused on the needs of the Liliane mediators. It included presentations on Community Based Rehabilitation and Independent Living, with examples from PROJIMO and elsewhere.
Participants were introduced to Child-to-Child activities that included disabled children, and were shown examples of simple assistive technology. The emphasis of the workshop was on participants working as partners with disabled children and their families, and adapting assistive devices to the individual needs and possibilities of the hild and to the local environment.
In the morning on the second day the participants (in this case, mediators of Stichting Liliane Fonds) divided into small groups and visited the homes of the children for whom they hoped to make simple assistive devices. Together with the child and family, they decided upon what device or devices to make that could help the child (and family) do things better. They looked at pictures in their books, took measurements, and sketched preliminary designs.
Day 1 – Presentations on Community Based Rehabilitation and Independent Living.
Day 2 – (Morning) Workshop participants visit the homes of the children.
Day 2 – (Afternoon) Small groups work on their plans for the assistive devices.
Day 3 – (First hour) Children and family members present their findings and designs.
Day 3 – (All day long) The small groups construct and test the assistive device.
Day 3 – (Final hour) Presentation of the finished device, evaluations, and conclusions.
Back at the meeting place, the small groups further planned their designs and prepared posters with a summary of their findings and drawings of the assistive equipment they planned to make.
The third day was attended by course participants and the children visited the day before, each with an accompanying family member. During the first hour of the third day we met in a plenary session where each small group, together with the child and family member, presented their findings and designs of the aid they plan to make. Everyone was welcome to share ideas and suggestions.
The rest of the day the small groups together with the child (as much as possible) and family member constructed the assistive device(s) they planed to make, testing it repeatedly with the child for goodness of fit and suitability.
During the final hour we met together as a whole group. The sub-groups demonstrated the (hopefully) finished aids. At this point there was an opportunity for feedback, evaluations, and conclusions.
The Importance of Home-Visits
One objective of the workshops was to help rehabilitation workers realize the importance to adapt assistive equipment, not only to the needs and possibilities of the individual child, but also to local environment and circumstances in which the child lives. This was the reason that we felt it was important that the participants’ first activity was to visit the home and neighborhood of each child. That way they were able to get to know the family and the situation, and discuss with the family the needs and possibilities.
The Children of Medellín
Walter David is an alert, friendly 11 year old who is deaf and has cerebral palsy. Until a year ago he used a wheelchair, but now walks with difficulty using a stick.
On my preliminary home visit I examined the weakness and deformity of his feet. I wondered if plastic below-the-knee braces might help him, and showed him the ones I use. He burst into a smile, hobbled into an adjacent room, and came back with a set of braces very similar to my own, that had been prescribed and specially made for him. But he said they didn’t work. Walking with them was much more difficult than without. And they hurt him.
When he put on the braces, the reason was clear. Although they were made by professionals, they were poorly planned. For one thing, they stuck out far beyond the end of his toes. They should have stopped where the toes join the foot, to allow them to bend when he stepped. Because he walks with his knees somewhat bent, the added length of the stiff braces tended to throw him back wards and off-balance with each step. In addition, the sharp edge of one brace dug into the side of foot. No wonder he refused to use them!
I showed Walter David the chapter in my book, Nothing About Us Without Us, that describes how I too, as a child, suffered from wrongly prescribed, badly made orthopedic devices. As if the pain of the braces wasn’t bad enough, I was mercilessly teased by the other children. So apart from being tocayos (having the same name) the two of us felt we had a lot in common. A strong rapport quickly formed between us. His deafness and my lack of sign language proficiency proved no barrier. We understood each other without difficulty.
A small group of mediators visited Walter David and his family in their home. At the plenary the next morning they discussed his problems and wishes. The boy spoke confidently in sign language, and with the help of an interpreter, he conveyed his thoughts and wishes to the larger group. He showed everyone his braces and how badly they fit.
In the workshop Walter David helped cut off the ends of his own braces. First he cut the thick padding off with a knife, and then he helped cut off the hard plastic with a saw. Then we went to the kitchen, and I showed the group how to heat the plastic in a flame and then bend out and round the sharp edge that caused him pain. To do this I pressed the hot edge with large plastic spoon, holding it in the new position until it cooled.
After Walter David tried walking with the modified brace, the interpreter asked him in sign language how he liked them. He said now they didn’t hurt him, but that he still couldn’t walk as well as he could without them. I had warned him that might be the case. There’s a saying, “Plastic and spastic don’t mix.” But of course there are exceptions, so it was worth a try—and was a good learning experience for everyone.
To help prevent his feet from flopping over to the side when he walks, we decided to experiment with cardboard shoe inserts, with one side higher than the other.
In the final session Walter David showed off how much better he could walk with the help of the inserts. The group also made a cane for Walter David to walk on uneven ground. At the boy’s suggestion they added a leather arm band to the side to give him more stability— something like a Canadian crutch.
Walte David loved the workshop. He is thinking about becoming a rehabilitation worker when he grows up. Here he studies a copy of Disabled Village Children.
For 23-year-old Diego there are no easy answers. I had my doubts as to whether there was anything that could be done or made fo him in our assistive technology workshop, but the local mediator was desperate to see if we could do anything to help him, and begged that we include him.
Unlike most of the people we visited in Medellín, Alejandro doesn’t live on the steep periphery, but rather in a tiny hut in an inner city neighborhood called La Independencia, on the banks of a trash-filled river that flows through the heart of the old city.
Diego is profoundly isolated by his multiple disabilities. He is blind, deaf, physically disabled, mentally stunted, and emotionally disturbed. His face has a desperate, long-suffering look. Diego often pokes and rubs his eyes, one of which is chronically inflamed. Representatives from both Liliane Fonds and from “Multi-impedidos”, a program that specializes in assisting children who are both deaf and blind, have searched for ways to help Alejandro, but with very limited success.
It is hard to know what level of intelligence or comprehension lies submerged beneath Diego’s angry, defensive, exterior. His only means of communication is through touch. Yet when his mother or others try to touch or hug him, often he strikes out or tries to bite them.
Diego spends his days sitting in a donated wheelchair, which he can’t move because the quarters are so cramped. He sits there hour after hour.
The group of mediators who visited Diego found that with help he could stand and even take steps, but in a crouched, very unbalanced way. After talking with his family, they decided to make him a standing frame—although some of us questioned whether he would tolerate being strapped into it. Back at the site of the workshop the mediators looked at different designs for standing frames in their books, and then drew a plan for one.
The next morning in the opening plenary of the workshop the group presented their concerns and ideas to those present. As they did so, a fascinating thing happened. Diego discovered that he was no longer confined to the cramped quarters of his home. At first hesitantly, and then with growing enthusiasm, he began to propel his wheelchair around the large central open space of the meeting room in which everyone was sitting in a circle around the edge. Like a bird suddenly escaped from its cage he wheeled freely in every direction.
When Diego was about to bump into people on the periphery of the big room, they would gently reach out and redirect his chair back toward the center. He had suddenly discovered a new and exciting way of communicating with people, realizing that they were facilitating his freedom while at the same time protecting him from mishap. It became a great game for him and his contorted face burst into happy laughter every time he nearly collided with someone and they amiably steered him on an open course. Everyone was delighted to see that agonized face suddenly so happy.
In the workshop, Diego’s group mediators worked hard cutting the pieces and building the standing frame. They added a table on the frame, and painted it attractively. But unfortunately they were unable to get Diego to stand in it in the final closing plenary.
Having had a taste of relative freedom that same morning, he was not about to be fettered into the frame. The local mediator promised to visit his home and help his mother see if they could convince him to accept it.
Whatever the final outcome with the standing frame, Diego’s free-wheeling adventure that morning in his wheelchair was perhaps the high point so far in his life, both in terms of unrestrained movement and helpful non- binding communication. The challenge for his family and the local mediators will be find ways to build on that.
The objective of the assistive technology work shops was to help disabled children—which according to the guidelines of Stichting Liliane Fonds can include young people up to age 25. At 32 years old, León Darío should not have qualified. But for him we made an exception.
It was León Darío who arrived, in his wheel chair, to pick me up at the airport when I arrived in Medellín. He impressed me as a very bright, enthusiastic young man. He works in the national office of Liliane Fonds in Medellín. Since he drives his own car—with adapted hand controls—he also runs a lot of errands and fills in as a chauffeur.
On the long drive down into the valley of Medellín, León Darío told me how he had become paraplegic. As a teenager he’d been walking down the street on an errand when suddenly he was struck in the spine, in a drive-by shooting. That turned his life upside down. He learned to get around in a wheel-chair—which in Medellín is a major challenge. And now he manages to live on his own in a small apartment. But what León Darío told me he most longed to do was to be able to stand and walk—be it with crutches—at least in certain situations. “Do you think there’s any chance?” he asked me eagerly.
That was the reason we decided to include León Darío in the workshop.
It was not an easy matter to get León Darío up the stairs to the 3rd floor of the convent where the workshop was held. He had to be carried. But living in Medellín, León Darío was used to such “human elevators,” and people were glad to help. In the final evaluation, however, everyone agreed on the importance of holding such workshops in wheelchair accessible quarters.
Before building a parapodium for León Darío, we had to make sure his hips and knees would straighten enough for him to stand. So his group of mediators had him lie down on a bed. Although he had a lot of spasticity, they found that with steady, slow pressure his knees and hips could be positioned almost straight—though not quite.
Next we stood him up to see if his feet would fit flat enough on the floor. Spasticity was again a problem, and this was complicated by beginning contractures, but with difficulty it was possible to place his feet in a fairly good position. With proper adjustments, standing on the parapodium might even help correct the contractures in his feet.
Then they took the measurements they needed. They made full-size paper templates of the pieces of the parapodium, which they traced onto sheets of plywood and then began cutting out the pieces. León Darío helped a local carpenter assemble the parapodium. They fastened on triangular supports to firm up the back board, and added sled-like runners under the base board.
One of the greatest challenges in making a parapodium is to make sure the backboard slants backwards just enough so that the person can stand upright in perfect equilibrium, without its tipping forward or backward.
At last the parapodium was ready for a provisional test. Because of León Darío’s spasticity it was hard putting him onto it, but at last they succeeded. Someone had brought a pair of crutches to see if León Darío could use them to move about on the parapodium, but to everyone’s disappointment they were way too short. So two of us played the role of “human crutches,” letting León Darío grasp our wrists.
To León Darío’s surprise, he found he could stand alone with the parapodium, without crutches or other supports, and with his hands free. “That means I can stand up in my house and use my hands to prepare meals, wash dishes, and do all sorts of things!” he said happily.
Everyone was thrilled to see León Darío standing and beginning to take steps. But no one was more excited than León Darío himself. While he realizes that in many circumstances he will still need to use his wheelchair, having the possibility to stand and move about upright will give him a new degree of freedom. If the parapodium works well for him, at a later time he can have a full-length body brace made with joints so that he can stand up and sit down. However that turns out, León Darío now feels he has more options.