In a small town, 20 minutes inland by camioneta from the northeast coast of the DR, lives a young mudo. His name is Edwin, which he prounounces with the thick accent of those with Down's Syndrome. If you ask Edwin his name in front of his father - with whom he is almost always - his father will prompt him, with visible delight: "Y el otro?" And Edwin will respond with his last name. If dad prompts "And the rest?" Edwin will say "Capicua."
Capicua is a special finishing move in dominoes. If one end of the train of fichas is a 6 and the other end is a 1, the capicua is the 6:1 ficha. If you win a game by playing the capicua you are awarded extra points because you are awesome. Mudo ("mute") is the generic Dominican campo term for those with developmental disabilities. In the capital, Juife, a young man with cerebral palsy is called "un chico especial" by his grandparents Dona Esperanza and Don Chicho, but in the country he would be mudo.
I rode in a truck with Edwin and his father from the coast into the campo where they lived. I sat in the cab and Edwin sat in the bed, even though there was plenty of empty seats. He rode the bed the way Dominican men do when they have it to themselves: in a partial lunge over the roof, squinting into the wind.
"Why doesn't he ride in the cab with the rest of us?" I asked.
"Because he likes it back there!"
This is far from the sheltered existence that many disabled people live in the US. I can't fault the decision. Edwin really seemed to have things under control, and what is more, he was having fun. His father, too. He expressed his love for his son by allowing him to be a man.
And a man he is. We sat in front of a colmado, watching the night come in and waiting for the electricity to rcome back on. When the delivery truck came, Edwin took his turn with the rest of us, unloading the goods as a favor to the owner of the colmado. He shouldered the heavy bags of rice far easier than I. When we sat back down, Edwin took out a broken cell phone and pretended to take calls like his father, a local mover and shaker. "Dimelo" Edwin said. Tell it to me. Let's talk business.
His father is respected in the community and that respect is extended to his son. His affection, too, is extended to his son by the community. I have heard, but not did not see, that at fiestas Edwin will be given a drink with the rest of the men and that he loves to dance. I did see, however, a young man pat Edwin's shirtless belly and call him tiguere, meaning something like "lady killer."
In the same community as Edwin lives an old man named Reyes. His birth certificate says he is 90 but he estimates that he is closer to 100 since the certificate was not filled out until several years after he was born. He lived through the entire era of the Trujillo dictatorship. He played in a merengue band and was, by his own testament, quite the ladies man. He retired to a small shack where he lives alone. He has a small propiedad of cacao that he cannot maintain but visits daily. He does this altough he is almost ciego (blind). He doesn't see you coming until he is within a meter of you and he hollers when he addresses you because is almost sordo (deaf).
The local boys - not all, but far too many - like to sneak up behind him to scare him. They clap their hands close to his head and when he turns away they are gone. A variation of this hateful game is played by boys the world over, but I found it shocking in this society that normally affords so much respect to elders. It is permitted here because Reyes has no family in the community to shelter him with their respect and affection. A local woman cooks food for him and cleans his house upon occasion but she does this quietly.
I know these stories because I was visiting a friend, fellow PC volunteer, in this town. He tells me that the muchachos torment Reyes much less since the intervention. A friend of Edwin's father, also respected, and member of the same agricultural association talked to directora of the school and she in turn talked to the children.
I do not want to judge these children too harshly but I don't want to excuse them either. Instead, I will say that theor behavior makes sense. What supportive services exist here for the elderly and disabled are paid for by family. If the family can't pay, they do the work themselves. Similarly, special education doesn't really exist. Disabled children have the right to go to school but they are enrolled in classes with normally functioning children. Dominican teachers I have spoken to say that the training teachers receive on disability at university is superficial. When the students are in class they don't know how to care for them, which distracts the other students, who are not taught to respect them. I remember boys on my school bus mocking children with special needs and wonder how much worse it would have been if we hadn't been taught respect, repeatedly, by teachers who had themselves been well-trained.
The intervention occurred because Reyes got into it with a loco (this word means exactly what you think it does). I wasn't there and don't know exactly what happened, but after the fracas the community agreed that things had gotten out of hand. Mental illness is no more or less common in the DR than in the United State, but locos are more visible because again the burden of care falls on the family almost exclusively. During CBT, I facilitated a workshop with a group of local girls where we brainstormed a list of community needs. At the top of their list? A place for the locos.
I am sharing these stories mostly to process them, but as I write this I reflect again upon disparity of development. In a previous entry I wrote that sometimes a lack of organizational infrastructure can be a good thing. When it comes to mudos, ciegos, and locos I must disagree with myself.
Capicua is a special finishing move in dominoes. If one end of the train of fichas is a 6 and the other end is a 1, the capicua is the 6:1 ficha. If you win a game by playing the capicua you are awarded extra points because you are awesome. Mudo ("mute") is the generic Dominican campo term for those with developmental disabilities. In the capital, Juife, a young man with cerebral palsy is called "un chico especial" by his grandparents Dona Esperanza and Don Chicho, but in the country he would be mudo.
I rode in a truck with Edwin and his father from the coast into the campo where they lived. I sat in the cab and Edwin sat in the bed, even though there was plenty of empty seats. He rode the bed the way Dominican men do when they have it to themselves: in a partial lunge over the roof, squinting into the wind.
"Why doesn't he ride in the cab with the rest of us?" I asked.
"Because he likes it back there!"
This is far from the sheltered existence that many disabled people live in the US. I can't fault the decision. Edwin really seemed to have things under control, and what is more, he was having fun. His father, too. He expressed his love for his son by allowing him to be a man.
And a man he is. We sat in front of a colmado, watching the night come in and waiting for the electricity to rcome back on. When the delivery truck came, Edwin took his turn with the rest of us, unloading the goods as a favor to the owner of the colmado. He shouldered the heavy bags of rice far easier than I. When we sat back down, Edwin took out a broken cell phone and pretended to take calls like his father, a local mover and shaker. "Dimelo" Edwin said. Tell it to me. Let's talk business.
His father is respected in the community and that respect is extended to his son. His affection, too, is extended to his son by the community. I have heard, but not did not see, that at fiestas Edwin will be given a drink with the rest of the men and that he loves to dance. I did see, however, a young man pat Edwin's shirtless belly and call him tiguere, meaning something like "lady killer."
In the same community as Edwin lives an old man named Reyes. His birth certificate says he is 90 but he estimates that he is closer to 100 since the certificate was not filled out until several years after he was born. He lived through the entire era of the Trujillo dictatorship. He played in a merengue band and was, by his own testament, quite the ladies man. He retired to a small shack where he lives alone. He has a small propiedad of cacao that he cannot maintain but visits daily. He does this altough he is almost ciego (blind). He doesn't see you coming until he is within a meter of you and he hollers when he addresses you because is almost sordo (deaf).
The local boys - not all, but far too many - like to sneak up behind him to scare him. They clap their hands close to his head and when he turns away they are gone. A variation of this hateful game is played by boys the world over, but I found it shocking in this society that normally affords so much respect to elders. It is permitted here because Reyes has no family in the community to shelter him with their respect and affection. A local woman cooks food for him and cleans his house upon occasion but she does this quietly.
I know these stories because I was visiting a friend, fellow PC volunteer, in this town. He tells me that the muchachos torment Reyes much less since the intervention. A friend of Edwin's father, also respected, and member of the same agricultural association talked to directora of the school and she in turn talked to the children.
I do not want to judge these children too harshly but I don't want to excuse them either. Instead, I will say that theor behavior makes sense. What supportive services exist here for the elderly and disabled are paid for by family. If the family can't pay, they do the work themselves. Similarly, special education doesn't really exist. Disabled children have the right to go to school but they are enrolled in classes with normally functioning children. Dominican teachers I have spoken to say that the training teachers receive on disability at university is superficial. When the students are in class they don't know how to care for them, which distracts the other students, who are not taught to respect them. I remember boys on my school bus mocking children with special needs and wonder how much worse it would have been if we hadn't been taught respect, repeatedly, by teachers who had themselves been well-trained.
The intervention occurred because Reyes got into it with a loco (this word means exactly what you think it does). I wasn't there and don't know exactly what happened, but after the fracas the community agreed that things had gotten out of hand. Mental illness is no more or less common in the DR than in the United State, but locos are more visible because again the burden of care falls on the family almost exclusively. During CBT, I facilitated a workshop with a group of local girls where we brainstormed a list of community needs. At the top of their list? A place for the locos.
I am sharing these stories mostly to process them, but as I write this I reflect again upon disparity of development. In a previous entry I wrote that sometimes a lack of organizational infrastructure can be a good thing. When it comes to mudos, ciegos, and locos I must disagree with myself.
No comments:
Post a Comment