Marcelo and Luis
Marcelo feels caught. Once again he doesn’t know what to do. He is sure that a joke is being flayed on him and he is confused. Lacking the tools for understanding, Marcelo resorts to his tried and true response. “Don’t look at me.” he demands. And, with a quick jerk of his head away from the insult, he trundles off, looking for more hospitable company.
Seeing Marcelo retreat from the brace shop, sad eyed Luis lets out his unmistakable cry. A throaty bellow and waving limbs draw Marcelo to his side. Intuitively, Marcelo deciphers the message that Luis needs company. Away from his family for the first time and having a hard time making himself understood, Luis, after three days, is somewhat desperate. Marcelo is gentle with Luis, but there are others who love to tease him. One of the favorite games they play with Luis is asking him if he misses his mother. Then his beautiful brown eyes look at you with heart-wrenching sadness as his head drops into the crook of his elbow. With tears running down his face and arm, Luis sobs quietly until he is comforted.
Marcelo doesn’t know how to play that kind of pine, but he does know how to push a wheelchair. He is strong, and enjoys pleasing his passenger. Luis loves going for rides, so the two of them head up-the narrow path leading to the main street of Ajoya. It is a hot day. The mangoes are almost ripe. The dust lifts easily and quietly coats everything. The younger kids, almost impervious to heat, are playing, while the men tilt back against shaded adobe walls, waiting patiently. There is a timeless calm hanging over Ajoya as the afternoon sun bakes motion to a stop.
The squeaking of dry bearings and a cloud of dust temporarily interrupt the magical stillness. Nearly indifferent eyes follow the pair as Marcelo pushes Luis’s wheelchair through the hot sun. Wheelchairs inhabited by all varieties of disabled bodies have become so commonplace in Ajoya that they no longer generate curiosity or fear in the villagers.
Luis answers Marcelo with his deep expressive eyes, as if to say, "Let's go on. I know you must be getting tired, but I'm so excited."
The overwhelming heat finally forces the two companions to seek relief. Marcelo’s round, soft body is shining with perspiration while Luis’s angular, contracted body sticks uncomfortably to the vinyl seat and back of his chair. “Shall we go to the river?” Marcelo asks hopefully. Luis eagerly agrees to the promise of adventure and escape from the oppressive heat.
With sweat streaming, the two companions make their way through the end of town and down the treacherous path towards the river. Boulders, erosion ruts, and deep sand turn the half mile into a monumental expedition. At times, Luis has to slide his spastic body out of his chair and drag himself over impassable obstacles while Marcelo handles the progress of the chair. In one spot, Marcelo has to carry Luis across a deep ravine, set him down on the far side, and then return for the chair.
The patient determination of the two companions builds a feeling of friendship that is both wonderful and foreign for them. Twice Marcelo asks Luis if he wants to abandon their mission. Both times Luis answers Marcelo with his deep expressive eyes, as if to say, “Let’s go on. I know it s a lot of work for you and you must be getting tired, but I’m so excited. I love you for being willing to take care of me like this.” Marcelo correctly interprets the response, and the two slowly labor on towards the river.
When they finally arrive, Marcelo, hot and dusty, splashes into the slow-moving, tired river. The small stream of water looks insignificant as it cuts its narrow path through the huge riverbed. Soon, when the rains come, this calm trickle will become a raging torrent, at times filling the entire riverbed with a powerful flow of boulders, branches, and silt-filled water carried down from the high valleys of the Sierra Madre.
Marcelo splashes his face with the tepid, green river water and looks upstream at the town he now thinks of as home. He can’t remember how he got to Ajoya, but he knows it is where he is happy -happier than he ever imagined possible. He thinks about the important jobs he has. He washes people who can’t wash themselves and dresses them in clean clothes so that they look nice. He fetches sodas for the clever men who make amazing things in the workshops. Sometimes they even give him jobs in the shop, and that makes him feel so proud.
People like him here. Sure, they tease him, but he’s used to that—and, besides, here they tease with a smile. And those around him have problems too. Many of them have bodies that don t work right. Some have shrivelled legs and walk with crutches, and some sit in wheelchairs all the time and can’t feel their legs. There are others like Luis, who can’t control their bodies and have to live with twitches and jerks that keep them from talking or moving the way they want to.
For his part, Marcelo has a good, strong body. He can help in a lot of ways, but his thinking doesn’t work right. He doesn’t understand many things, and he has a hard time remembering. But when something is clear, Marcelo is happy to do it. He loves to write. He fills pages of notebooks with sentences that have been written for him to copy. He can’t read and doesn’t know what he’s writing, but it doesn’t matter. He is doing useful work!
A loud splash brings Marcelo out of his thoughts. Luis has slid out of his chair and dragged himself into the river. Happily splashing away the heat and dust, he gives Marcelo a huge grin. Marcelo is a bit worried because Luis is wearing all his clothes and they are getting soaked. Luis smiles as if to say, “It’s fine. My clothes are hot too.” Marcelo laughs and plops down in the river next to Luis. Luis splashes uncontrollably and Marcelo imitates. The two friends are soaking wet and thoroughly enjoying the fruits of their difficult trek.
Across the river, on the bank overlooking the bathers, a wealthy landowner watches the scene. Sitting astride his horse, he contemplates the wheelchair. Watching the two friends, he realizes what a good thing it is that these children have a place to be where they can enjoy life and be valued for their ability to smile, laugh, play, learn, work, and be helpful in whatever way they can.
Moved by a sudden impulse, the horseman spurs his beast down towards the two boys just as Marcelo is lifting the joyous Luis back into his chair. Surprised and scared by the approaching rider, Marcelo almost drops Luis and becomes confused about whether to run, fight, or remain still. Fear fills Luis’s eyes as he senses Marcelo’s anxiety. With fewer options available, Luis sits and waits to see what will happen.
As they head back to Ajoya, with Luis groaning happily and Marcelo gleefully pushing the empty wheelchair, Chuy feels glad that he decided to help.
“Don’t be afraid, my friends. I will not harm you.” Marcelo and Luis slowly look up at the horseman. He smiles at them and swings down off his horse. He is a small man, much smaller than Marcelo, but he has the strength of someone accustomed to having power. “My name is Chuy. I was watching you two play in the water, and I thought you might like some help getting back to Ajoya. ' Marcelo is uncertain. The friendly offer confuses him; he is torn between temptation and fear. Luis, on the other hand, is thrilled. His quick mind has already determined that he is about to go for a ride on a horse. The man senses Luis’s excitement and offers him a ride back home. Marcelo still can’t make up his mind. Decisions are a threat to him, especially when they involve responsibility. Fortunately, Chuy resolves Marcelo’s confusion by helping Luis lift himself onto the horse.
Loading a spastic child onto a horse is no easy task, especially when the child is nervous and excited. Marcelo quickly sees that his assistance is needed. Chuy is barely able to lift Luis, much less raise him onto the horse and pry his legs apart enough to straddle the horse’s back. After several exhausting attempts, Luis proudly sits astride the horse with his hands tied together around Chuy’s waist to keep him from falling off. When drool starts running freely down the man’s back, he momentarily questions his generosity. But as they head back to Ajoya, with Luís groaning happily and Marcelo gleefully pushing the empty wheelchair, Chuy feels glad that he decided to help.
Long shadows and cooler temperatures greet the trio as they enter the village. Thirsty, they buy and drink three sodas. At least half of Luis’s soda makes a sticky mess down his front, and onto the saddle and horse. This time Chuy doesn’t even flinch. He knows it can be cleaned up, and he doesn’t want to disrupt the mood.
A group of small children trail along behind the trio as they enter the PROJIMO yard. The workers in the metal shop stop their work to watch and yell out greetings. Other children playing in PROJIMO run over to the horse and riders. Marcelo proudly helps Luis down off the horse and returns the joyous child to his chair. Luis is overwhelmed with excitement as tears of happiness run down his cheeks. Chuy wheels his horse around, waves goodbye, and rides away content and a little embarrassed by Luis’s tears. It’s a moment he will never forget.
Marcelo, on the other hand, has already forgotten where they have been and why they returned the way they did. With waving arms and almost decipherable grunts, Luis explains what happened and why they were gone so long. Some of the more responsible people pretend to be upset with Marcelo for running off like that. Marcelo feels very bad and is still not quite sure he knows what he did. He does know that he feels happy and proud when Luis smiles at him.
Later that night, when Marcelo lifts Luis out of his chair onto his sleeping mat, Luis manages to get his arms wrapped around Marcelo’s back. When the time comes to let go, neither one of them does so. For a moment, the two friends hold each other quietly. When they do release their embrace, their eyes meet. Something they can’t explain has happened, and they know it is important. HW
Community-Based vs. Home-Based Rehabilitation
Readers of the previous story will note that Luis and Marcelo are both young persons who have left their own homes for a time to stay at a community rehabilitation center.
A fiery debate has been going on for some time among advocates of “community-based rehabilitation” CBR). Those who favor the World Health Organization (WHO) approach, which really amounts to “home-based” rehabilitation, argue against any sort of rehabilitation center for children outside of their homes. On these grounds, the home-based purists have often criticized PROJIMO as being “just another institution.” Other advocates of CBR have found that community centers run by disabled persons and/or their relatives can provide a very important back-up for rehabilitation activities in the home. They can offer a range of services, equipment, and opportunities that few families are able to provide. Far from being just another confining institution, a small “user-run” community center can provide a truly liberating experience.
Perhaps under ideal circumstances, the best place for disabled children is their own homes. There can be no doubt that family members need to learn as much as they can about helping disabled children (and adults) meet their needs and play a full, active role in their communities.
But real life is not always ideal. Mothers are often already overworked and simply don’t have the time to provide all the stimulation and special care a disabled child needs—even if they learn the necessary skills. Or the family may have become so locked into a pattern of overprotecting or neglecting the disabled person that, even with all the advice and support in the world, it has trouble shifting gears.
For children in such circumstances, a stay at a small community center can make a big difference. The team of disabled village workers at PROJIMO has found that for many young people a chance to spend a few days, weeks, or months away from home at the community center often gives them a whole new image of themselves and their possibilities for the future. Perhaps most important of all is the role model offered by the young disabled workers and leaders at PROJIMO: persons in wheelchairs or on wheeled gurneys do welding and carpentry, make wheelchairs and orthopaedic appliances, and have acquired skills beyond those of many able-bodied members of the community.
For example, when Marcelo, the mentally handicapped young man in the previous story, first came to PROJIMO, he was sullen and uncommunicative, and appeared to think of himself as worthless—an opinion his family clearly shared. Until another disabled child interested him in making wooden jigsaw puzzles (a skill he has still not mastered), Marcelo did not even want to stay at PROJIMO. But in time Marcelo’s experiences at PROJIMO led him to discover his strengths: a combination of tenderness and brute force. Above all, he realized that he could be useful and was needed. He became a very helpful “attendant” to many of the severely disabled persons such as Luis, transferring, bathing, and transporting them with an unquenchable, childlike enthusiasm. What is more, Marcelo has become an excellent role model for other mentally handicapped young people and their families, who can see what is possible when such persons are given a chance.
Marcelo’s family has been slower than Marcelo in fully recognizing his new-found abilities, but it is coming around. Marcelo now alternates between spending a few weeks at home and a few weeks at the center. He is free to come and go as he chooses. And for the most part he now seems happy. Luis has also returned home happier and more self-confident.
PROJIMO may in a sense be an “institution,” but it is more like a cooperative run by a constantly changing collective of young disabled people. One of PROJIMO’s main functions is to help families of disabled children learn to meet their children’s needs in their own homes. But when such needs are more than the family can cope with, PROJIMO often is able to offer a viable alternative. In the eight years that PROJIMO has been functioning, it has served as a temporary “home away from home” for more than a thousand youngsters.
Many (not all) of these young people have loved their experiences at PROJIMO, and have grown as a result of them. From the day they arrive, all who come to the program are asked to help out with whatever tasks they are capable of doing, and thus begin to develop new skill. Some of the older young people choose to stay on in order to learn further skills and to help others. When they return to their own villages and communities, they often reach out to other disabled people there. And so the process of good will, self-help, and empowerment spreads.
PROJIMO is an example of community-based rehabilitation in which the primary community is formed by disabled persons themselves. HW