To be a disabled person in Nicaragua once meant a lifetime of suffering in silence, oftentimes hidden away from society as a shame to the family. But old attitudes are changing. Now, many individuals and families affected by disabilities such as autism, Down syndrome and Cerebral Palsy are finding more acceptance in the community, and with it, a wider variety of support programs.
“We are at the beginning of the revolution,” says Alba Serres, director of the Integral Development Center “Corazón Contento,” a disabilities services program in Granada. “For 40 years or more in the United States or Spain, disabled people have had access to support and programs. But in Nicaragua, people are just starting to understand that individuals born with disabilities are not ‘animals’ or ‘monsters.’”
Serres, a native of Catalonia, says progress in dealing with disabilities has come slowly in Nicaragua, which may explain why many foreigners have led the charge when it comes to offering specialized care.
According to the National Institute of Statistics and Census (INEC), 12.5% of the population suffers from some type of disability. This large cohort has limited government support. There is only one special education school in each of the 17 departments, meaning families have to move to the nearest city center to receive any state benefits.
While the government’s special education schools cover students ages 5-18, a growing collection of private programs seek to identify early development issues at a younger age and assist special-needs individuals long after they move beyond the public system. Through early intervention, job creation and parental involvement, these non-governmental organizations fill the gaps left by federal programs.
The importance of early detection
Private groups are pioneering the concept of early intervention in Nicaragua.
“Early stimulation is an important part of our program,” says Serres. “We want to start working with families as soon as a child with a disability is born. This way, small problems don’t become big problems later on, and larger issues can start being dealt with right away.”
For some children, early detection can mean the difference between struggling for years in public school or getting the specialized attention they need in government special education schools from day one.
“We have a program of community awareness,” says Elier Pasquier de Pilarte, director of San Vicente de Paul, Granada’s special education school. “We go to the houses and keep track of the children who are under age five. Starting when they are born, we use this community program to work with the families.”
Early detection is vital when it comes to working with parents as well. The sooner the parents can get involved and actively help their child, the better.
“Many times, parents don’t want to admit there is a problem,” says de Pilarte. “With early awareness, we can begin developing a relationship before the child is sent to school.”
“Sometimes parents don’t say anything, even if they suspect they have a child who is different from others,” says Serres. “They’ll feel pity or shame or fear, so they won’t deal with it. Instead of feeling shame, we want parents to say ‘Let’s try to improve this child’s future’.”
Creating employment opportunities
On paper, Nicaraguan laws would appear to make it easy for people with disabilities to find work. Law 202 requires companies with more than 10 employees to hire someone with a disability—a condition defined as any hindrance that separates someone from the “normal achievements” attainable by their age and gender (from physical imparities—the loss of a limb, or deafness—to extreme mental retardation).
But experts say the affirmative action law is mostly unknown by employers, and overlooks the difficulty in finding jobs that fit the needs of the employee.
“Not all disabilities are physical,” says Serres. “Many of them are mental, or emotional, which makes people less employable. If I am running a business, it’s hard to hire someone who can’t work for eight hours, or who has to take a lot of time off for sickness.”
Sometimes, people with disabilities are able to find mainstream work. Serres says it doesn’t happen often, “But when it does it’s a real human triumph.”
“We have two of our former students working full-time jobs—one at a laundry service and one as a receptionist,” she says.
Often, however, finding work means carving out a new niche and creating a job that plays to the strengths of the disabled employees.
Seeing Hands Blind Massage is, as the name implies, a massage parlor run by blind people. In the Granada massage parlor located in Euro Café, there are three blind employees who give massages to tourists and local patrons. The company, which is now self-sufficient, was started through a microloan company called Lasting Change.
“A North American man reached out to me and said, ‘Would you like to learn massage as a way to make money?’” says Marlo Marin, one of the founders of the company. “It was a good way to have a business that could be done without vision. I called [co-founder] Juan Carlos and we decided to go into business.”
A similar program at the Handicapped Artisan Association of Nicaragua (AMAN) helps adults with autism and Down syndrome play to their skills by making piñatas. Founded in 2000 by Corinne Perdomo and Ernesto Davila, the program offers a way to fill the time, a skill to develop and a chance to generate some income.
“Piñatas are always needed, the supplies are cheap, and there are different levels of skills required, so it’s easy for them to find something to do,” says Perdomo, who is originally from Spain. “Most of the income from the sales goes towards the program, but we can also provide a small salary to the workers.”
The working environment also provides people with a sense of community and self-worth.
“Without coming here, these people would probably just be sitting in their houses all day,” says Perdomo. “They can’t help their families and that’s a problem, especially if the family is poor. Often, the family can’t provide someone to attend to the disabled person, so they would just sit alone. Here they have friends, they have work and they have a chance to make a small salary.”
Few opportunities outside the city
Granada is the gathering place for families with disabled children in the area. Outside the urban areas that offer basic services, the situation is even more difficult. Students come to San Vicente de Paul from all over the department—Diriomo, Niquinohomo and all the countryside villages in between. Often, after coming to Granada for the special education school, the graduates stay in the city to benefit from the economic opportunities.
“I would tell families with disabled children to move to Granada,” says Serres. “There are no services or opportunities in the countryside, but here we have programs and a school.”
If the family doesn’t come to Granada, disabled students must enroll in the local school and struggle to succeed. After they move beyond basic elementary schooling, there are no other educational options for them.
The non-governmental programs operating in Granada say they would love to be able to spread out to cover more of Nicaragua’s countryside, but as it is they are already struggling to fill the need in Granada.
Los Pipitos, the group that spawned Corazón Contento, is a national organization that may have the best chance to reach the masses. They have 85 independent chapters in the country, mainly scattered across the Pacific coast. Started as a community for parents of children with disabilities, new chapters open anytime at least 50 families with disabled children can gather together.
Corazón Contento began as a chapter of Los Pipitos but started their own organization to focus more on working with children rather than just educating the parents. But they continue to work closely with Los Pipitos today.
“I think the more Los Pipitos chapters that open, the more educated the community will be,” said Serres. “They have the best opportunity to reach the disabled that are being ignored now, in the countryside.”
What the future holds
Life for disabled people in Nicaragua will continue to improve as awareness and acceptance grows thanks to public and private efforts. But the reality for these organizations is that their enrolment continues to soar, and funding is already stretched.
“In Nicaragua, there is a high percentage of people with disabilities,” says Serres. “There are teenage pregnancies, there is incest, there is very little medical support. In the United States, or in Spain, if your baby had the umbilical cord wrapped around its neck, they could fix that and there would likely not be any lasting problems. Here, it is more likely to result in a disability.”
As the disabled community continues to be more accepted, they will also need more support. The local community is beginning to help where they can, but it may not be enough. For example, Tio Antonio’s, a social services group that sells hammocks made by deaf-mutes, teaches job skills to graduates from the special education school. Each of these organizations helps take some of the load off the others, but they all find themselves turning people away.
“It is hard to get support, because there are no immediate tangible results,” says Serres. “If you give women in Matagalpa some money, they are going to develop it into something and make that money back. But working with the disabled community means a lot of supplies, a lot of training, and slower results.
“I think of this program like fine wine,” she adds. “It takes time, but if you let it develop, it’s going to just get better and better.”