Mario Manuel Martinez Garcia, 21, who is mentally retarded and has epilepsy, tries to pick out the number one on a white board. Photo by Liza Shurik.
By Laura Fiorilli
Nicaragua’s disabled children live in the shadowy corners of a struggling society.
Gustavo Hernandez, 25, stricken since age 6 by cerebral palsy caused by a medical mistake, grew up lying in bed under a leaking roof.
Esther Jacqueline Abuto Cruz, 15, born mentally retarded and malnourished to a 48-year-old mother, paces the concrete floor of the home she shares with nine others. When she gets moody or bored, she sometimes lashes out at her infant cousins.
Roberto Jose Palacios, a bright 17-year-old who cannot hear or speak, spends his days lounging in a hammock in his family’s jungle hut, doodling pictures of Santa Claus on a sketchpad.
They are just a few of the disabled population in Nicaragua, the second-poorest country in the Western hemisphere, a place where even the brightest and quickest struggle to earn a living. With meager family or government resources, Nicaragua’s disabled face even greater hardships.
Nicaragua provides public schools for disabled children, but they are separate from the schools that other children attend, and teachers may not have training in special education.
Also, many Nicaraguan families have trouble keeping their children in school because of the cost of uniforms and books.
Disabled children outgrow the system as early as age 15, and when they finish, they are even less able than most Nicaraguans to find productive work.
Nicaragua’s unemployment rate stands at 22 percent, with another 36 percent of the population underemployed, according to 2003 estimates by the U.S. State Department. Half the population lives below the poverty line.
Poverty is part of the reason children are born with a greater risk of developmental problems than in the industrialized world.
Chronic malnutrition strikes one of every three children, according to UNICEF. One in four births is the result of an adolescent pregnancy. A lack of participation in public prenatal care programs also contributes to poor health among children.
“People don’t think that it’s preventable,” says Dr. Marina Palacio Vargas, a general practitioner at a government health center in Diriamba, about disabilities that result from poor maternal health. “They don’t give it too much importance.”
Economic hardship makes it hard for most Nicaraguans to think about extending extra help to their disabled neighbors.
“A normal person, now, in this moment, can’t work, because the situation is horrible,” says Isabel Medina Gomez, founder of a center for disabled young people in the city of Diriamba. “There isn’t a place to think of these [disabled] people, because the kids don’t have enough to eat.”
The government provides special-education schools, and a nationwide non-governmental organization, Los Pipitos, works to help parents care for their disabled children. But just 5 percent of disabled Nicaraguan children get adequate services, according to UNICEF. And teachers and volunteers who work with disabled children know they still need to reach many others.
This proves especially true among disabled adolescents. Public schools and Los Pipitos deal mainly with young children. But recently, scattered groups of teachers and parents, working locally, have established new programs for disabled teenagers and young adults.
“The public education system does not take into consideration the education of these children after the age of 15,” says Judith Diaz, administrator of the center in Diriamba.
Life in the shadows
Esther Jacqueline Abuto Cruz, 15, is the picture of stunted growth and prolonged isolation that defines the experience of homebound disabled Nicaraguan children.
She was born mentally disabled and undersized. She stands about 4 feet tall. Her breasts are struggling to develop, poking out over her ribs, but her body can barely nourish them. She can say two words, “Papa” and “Mama.” Fanny, her sister and main caregiver, says she has been like this all her life.
“Her sickness doesn’t let her grow up,” Fanny says.
Esther’s “Papa” is dead. “Mama,” a farm worker, was 48 when Esther was born, which her family believes may have led to the girl’s condition. A woman’s chance of having a child with chromosomal abnormalities increases after age 35, according to the March of Dimes.
Esther lives isolated in her small world, a concrete house in the Diriamba neighborhood of Barrio La Palmera.
She has never been to school. Her disability made her parents simultaneously embarrassed of the extra help she needs and overly protective, Fanny says.
“She can’t go anywhere alone,” Fanny says, describing how her sister needs supervision among strangers and help caring for herself. “There has to be someone with her the whole time.”
But there’s help for Esther just a few blocks away. One of her neighbors in La Palmera is Gomez, founder of a program for disabled young people. For more than two years, she has been visiting the Abuto home, trying to coax Esther’s family into letting her attend the program.
During a visit from Gomez, Esther appears sweet and happy, sitting on the woman’s lap and playing patty cake. But she doesn’t always have someone to play with.
A black mood strikes Esther sometimes. She gets upset and hits the two young children in the household, bangs her head against the wall, bites herself. After one of these episodes, she left a crescent-shaped scar on her hand.
These difficulties are part of the reason Esther’s family feels conflicted about sending her to school. Fanny sees pros and cons.
“In part,” she says, “because she can socialize, and get out of here. Sometimes she cries. On the other hand, she can’t talk.”
Next year, Fanny says, Esther will start school.
Gomez has heard such promises before. Sometimes timid parents relent, take a chance on her program and end up happy. But a good experience in school doesn’t necessarily turn families into activists for disability issues. Sometimes an otherwise satisfied student stops attending, after the family becomes frustrated or slips back into indifference.
“If this place closed down,” Gomez says, “the kids might fight it, but the parents wouldn’t.”
Even the most supportive parents, Gomez says, share a defeatist attitude that she thinks would keep them from advocating for their children if they lost what little resources they have.
Gomez, 29, fights that attitude with more than words. Seven years ago, she moved to Nicaragua from Spain. While working for Los Pipitos in Diriamba, she saw the need for classes and a workshop for older adolescents. Clashes with the larger organization led her to spin off her program into Proyecto Nosotros Tambien Podemos, “Project We Can, Too.” On a typical day, 30 students, ages 14 to 34, gather for learning, work and fellowship.
In the mornings, they learn basic skills, including simple reading and math. Some practice spelling their names with letters printed on small squares of paper. Others work on recognizing shapes, numbers and colors. In the afternoons, they make handcrafts piñatas, shell-covered trinkets, jewelry that the center sells to support itself. The program is free.
The center is tucked into an assortment of rented rooms on a nondescript street in Diriamba. Like many Nicaraguan buildings, it has a central open-air courtyard with clothes drying in the sun. The children’s’ piñatas hang from the ceiling. A sign on the door reads “Accesibilidad Para Todos” “Accessibility For All.”
“They know that here,” Diaz says, “everyone loves them.”
Carmen Garcia has noticed a positive change in her son, Mario Manuel Martinez Garcia, 21, who suffers from epilepsy and mild mental retardation. A hospital referred him to Los Pipitos when he was 15. His family sent him to Gomez’s center when she branched out.
Mario can’t fend for himself, his mother says. He tends to be nervous and sickly, and he can’t handle money. But going to school has made him calmer and more sociable.
“They’re treated well here,” she says. “Other people don’t treat them well. I have spent a lot of time here. I love them all very much.”
The teachers at Nosotros Tambien Podemos try to give all their students knowledge that will help them gain some independence even if that means just the ability to tell someone their address if they get lost. Sometimes, though, all a student needs is a safe place to spend the day.
Gustavo Hernandez is one of the center’s most severe cases. He developed normally until he broke his arm when he was 6. An operation to correct his injury went horribly wrong.
“They were going to operate on his elbow,” Gomez says, “and they gave him too much anesthesia, and they burned his brain.”
The mistake brought on an attack of cerebral palsy that left Gustavo unable to speak or control his body. Each day, a bus brings him to the center, where he dozes in a reclining chair under a mosquito net. Teachers stroke his head and talk to him, and feed him with a spoon.
He can’t make piñatas or learn to spell his name like the other kids. But Gustavo knows someone cares for him, his teachers say.
“When he doesn’t come here,” Gomez says, “he cries.”
‘College to them’
In the neighboring city of Jinotepe, another private center offers a more industrious take on educating disabled youngsters. Antorcha, or “The Torch,” is a work shelter, training its students in work skills that can become trades.
Antorcha, down the road from the public special-ed school in Jinotepe, accepts students over age 18. Under teachers’ supervision, they make furniture, mop heads, cloth napkins, loofah sponges, and other supplies for sale to schools and Catholic institutions.
One of the shelter’s leaders has seen the positive results of high-quality special education.
Antorcha Vice President Marlene Roman’s son Jose, 28, who has Down syndrome, spent three years in a private special-ed program in the United States and several years in public school in Costa Rica while his well-to-do
coffee-farming family waited out the Sandinista regime. Today he works in the carpentry room alongside other young men who grew up far from such advantages.
“If they have a television, they are looking at television all day,” Marlene Roman says. “If not, they are rocking in a chair.”
Roman and the other administrators work on a volunteer basis. On a monthly budget of 8,000 cordobas, about $500, the center supports teachers of carpentry and sewing.
Retired biology teacher Filemon Espinosa, who leads a carpentry workshop at Antorcha, finds communicating and dealing with the students’ volatile moods a challenge. He tries to set a fatherly tone, recognizing Antorcha as a refuge for the young men under his watch. The alternative is an unsupervised life, probably leading to drug use and idleness, he says. “This is like college to them.”
Recently, Antorcha, Nosotros Tambien Podemos and the special-ed school in Jinotepe received donated buses.
“There are a lot of kids in the rural areas who can’t go to school,” Diaz says. “The only people who can really take advantage are the ones who have the resources.”
Now that Antorcha has a bus, Roman hopes to reach out to potential students whose isolation has kept them from going to school or shelters. She especially had in mind Roberto Jose Palacios, a deaf-mute 17-year-old from outside the neighboring town of Santa Teresa.
The Palacios family’s dirt-floored jungle hut is home to eight people, but a scrawny dog, kitten and chickens also have the run of the living room. The house sits a half mile from the main road; there’s a power line, but the family has been unable to pay the bills. It’s even farther from the bus stop in central Santa Teresa where Jose will, theoretically, catch the bus.
Jose has little to do each day but doodle. He and his mother have had some training in formal sign language, but otherwise the family improvises ways to communicate. His family insists, though, that he’s a bright boy who could make it to the workshop on his own.
“The kid is a great help for me here,” says his father Miguel Angel Palacios, a farmer, “but I prefer he go and learn something.”
But leaving and learning may be hard for Jose Palacios, who has spent most of his life at home. To make it easier for future generations, special-ed schools have started reaching out to disabled children in their infancy.
Twice a month, teacher Carmen Dolores visits 22-month-old Jorge Rene Romero Ruiz at his grandparents’ home in Jinotepe.
The toddler and his mother, Wilma Romero Ruiz, 18, survived a pickup truck accident this February. Jorge spent 15 days in a coma and suffered hearing loss, some brain damage and loss of lung capacity.
But he’s still young. Dolores tries to make sure his injuries don’t disable him permanently.
In a typical therapy exercise, Dolores holds the boy on her knee and sings “Happy Birthday” in an attempt to get him to blow out a match.
“He would take half of the day to blow out a candle,” Dolores says, as he stares at the flame without blowing. “The point is to exercise his vocal cords.”
She’s concerned he hasn’t learned to talk. She tells his grandparents they should get a cat, so he will imitate the sounds it makes.
Wilma also takes the child to more intensive physical therapy at the special-ed school. As a participant in the early-stimulation program, she gets vitamin-enriched biscuits and powdered milk for Jorge from the government.
He’s progressing slowly, but his family is thankful he’s alive.
“We didn’t think he would move again,” his mother says.
Attacking the cause
Some attempts to ease the problem of disabilities in Nicaragua go back even further in a child’s life.
Prenatal care remains out of reach, or out of mind, for many Nicaraguan women. Dr. Roger Narvaez Loro, manager of pediatrics, obstetrics and gynecology at Hospital del Maestro in Diriamba, laments the rate of low birth weight in his country.
“All these are preventable,” says Narvaez, a 59-year-old veteran doctor who believes health conditions have gotten worse in his country over the course of his career. “If the social, economic and political conditions get better, all of this could be preventable.”
Even when doctors are able to treat children, their diagnosis only goes so far. Those who care for children directly, like Gomez, know disabilities affect people in different ways, and sometimes children are misdiagnosed.
“We don’t follow what the doctor says,” she says. “We just look at the needs of the kids. I think that it’s better that you see what they can do, and what they cannot do.”
Progress would come from an attitude change. The next parents to believe their disabled sons and daughters can achieve dignity will find the way open for them.
Carmen Garcia remembers that it was hard to watch her son, Mario, grow up disabled. “I felt very sad,” she says. “I never thought I would have a son like that. Those are things that God wants, that God decided.”
Mario couldn’t walk until he was 7. Epileptic seizures sent him to the hospital repeatedly. Sickness only added to the ways in which he was different from his six siblings. Things changed for him when he came to Nosotros Tambien Podemos.
“He interacts with people. He gets along with his classmates,” Carmen Garcia says. “Now he comes here, and he’s very calm.”
One at a time, some Nicaraguan parents are seeing new possibilities for disabled adolescents, opportunities that were harder to find before centers like Antorcha and Nosotros Tambien Podemos began their work.
“Here there are a lot of talents that are lost because of the conditions,” Narvaez says. “The world should be more human.
|Photos by David Zentz|