What seems impossible at first can become possible

Barn som leker i en gungställning utomhus.

I meet Rosa Montana in the café outside the MyRight office in Nicaragua. She has just finished a meeting of the programme group. Rosa is responsible for educational issues at the umbrella organisation FECONORI, which brings together the Nicaraguan disability rights movement.

Rosa sits opposite me at the table and I am moved by the power and warmth that she radiates. She is talkative and full of ideas. I ask how she came to work at FECONORI and why the issue of the right to education is so important to her.

– My daughter had no opportunity to go to school,” she replies. Each year, I was told she might be able to go to school next year. The next year came and the answer was always the same. Eventually, she was just too old.

Rosa’s daughter was born with multiple disabilities. Rosa and her family were told that she would never be able to walk or eat anything except liquid food. But Rosa refused to give up hope. Today, her daughter is 32 years old.

Small steps made a big impact

Rosa Montana.

Rosa Montana.

– Slowly but surely, I taught her to walk and to chew, so she could eat different kinds of food. Gradually, we also developed our own language. On one occasion, she made a sign. She did it again and again, until eventually we understood she meant her doll. That was a huge breakthrough, relates Rosa.

In being with her daughter, Rose has learned that things can be done if you have the drive. It takes a great deal of care and love. Initially, she thought a school would be able to give her daughter more than she was able to, but she no longer feels that way. She feels this is a process you have to go through as a parent.

– A child needs professional education that is tailored to the child’s needs, but also the love and care that only the family can provide, she says.

An organisation for knowledge and support

When Rosa realised that society lacked the will and knowledge required to support and help her daughter and their family, she got in touch with other parents who also had children with disabilities. Together they set up the organisation Los Pipitos.

– It was the denial of her rights that made me feel I had to fight. I wasn’t able to give my own daughter the opportunity to go to school, but today I can see the fruits of the fight for other daughters and sons in Nicaragua, she says.

Children, young persons and adults with intellectual disabilities are among the most vulnerable people in society. When someone is unable to formulate and express their needs themselves, they are extremely dependent on strong families. Los Pipitos therefore works a great deal on improving the parents’ knowledge of their children’s disabilities, and their needs and rights. This makes them better placed to provide good care for their children. It is a case of lifelong learning because, as the child grows, the need for support changes.

Father and child.

A father with his child at the day centre run by Los Pipitos. They play while also learning various exercises to train the child’s muscles and body awareness.

– The needs of a child aged three and one aged ten are very different. And when your child reaches 30, you have to be able to provide yet another type of support, says Rosa. At some point, for example, you have to learn to tackle issues concerning your child’s sexuality.

Rosa wishes she had had people around her who could have been supportive when her daughter was born. Because she knows what issues and emotions parents have to wrestle with, she sees it as important to fight so that other families have access to the support she lacked.

Los Pipitos works to give support to families, but also to improve knowledge and change the underlying structures in society. They have conducted several projects focusing on improving the knowledge of hospital staff about how to avoid disabilities before and during birth, and on increasing understanding of how important it is for families that give birth to children with disabilities to be offered support and contact with organisations such as Los Pipitos from the earliest moments at the hospital.

Disability organisations take a rights-based perspective

Rosa believes there are three stages to achieving the improvements she wishes to see.

– The first stage is about increasing awareness and people’s empathy. Then it’s a matter of establishing acceptance that persons with disabilities should be included in various contexts, such as school. The first stage is to recognise our rights as being equal to the rights of other people, says Rosa.

According to Rosa, the general public in Nicaragua are mostly still at the first level. The government and the authorities have reached the second level, while the disability organisations have made it to the third level.

– Persons with disabilities are now aware of their rights and apply a rights-based perspective to what they do, she says.

Education based on the children’s needs is good for all students

I ask Rosa whether she would be able to find a school for her daughter if she was little today.

– Yes, she replies. I would, but the quality of the school would still not be great.

The changes she is working to bring about focus not only on the ability of children with disabilities to go to school, but just as much on the quality of the education. Today, FECONORI works with the Education Ministry and monitors the schooling situation for children with disabilities. To a large extent, the task is about teaching educational methods and convincing teachers that children with disabilities can also learn things and develop.

Rosa explains that she was also an English teacher and she had several students with learning difficulties.

– I was given these students, because the other teachers saw that I could handle it. Together with my daughter, I learned that much of what seems impossible at first can become possible if the person doing the teaching is committed to the task, is creative and tries different methods to identify what suits the particular individual, she explains.

More knowledge and statistics are required

It is often difficult to measure the results of initiatives, due to a lack of knowledge and statistics about the situation on the ground and the needs that exist. FECONORI is therefore currently surveying the school situation for children with disabilities in the eastern part of Nicaragua. A survey like this will make it easier to determine what changes they should fight for, and to measure whether and how the situation improves.

FECONORI has been involved in fighting for teacher training to include courses on teaching children and young people with special needs. Next year will see the graduation of the first teachers to take these courses. FECONORI is planning to monitor how their knowledge affects teaching.

– When the teachers know how to teach children with special needs, the quality of the teaching will improve for all students, states Rosa.

Lina Jakobsson