A Discussion with Carmiña de la Cruz, National Advisor for Special Education, Fe y Alegría Bolivia

July 19, 2012

Background: As part of the Education and Social Justice Project, in July 2012 undergraduate student Lisa Frank interviewed Carmiña de la Cruz, the national advisor for special education for Fe y Alegría Bolivia. The organization operates six special education centers and 47 inclusive educational units in Bolivia. In this interview de la Cruz discusses her work to include those with disabilities both in education and job training, challenges in changing policies to promote inclusion, and the ways in which faith informs individual and communal efforts to include those with disabilities.

How did you start working for inclusive education in Fe y Alegría Bolivia?

When I saw these special education centers, I always wondered, "Why are these environments so poor at providing stimulation for people with disabilities?" They’re very welfare-oriented and overprotective environments, and I think the solution to that is inclusive education. I went to the Basque country with a team for a month to learn from all they’re doing in special education, including educational support centers linked to inclusive classrooms. We learned a lot from this experience in Spain.

For me, Fe y Alegría Bolivia has been a space of learning, because all that I learned wasn’t in college, but in the field. From the beginning I believed that this proposal was the change that was needed, although at first people had many fears and doubts, even parents. They thought, "They will reject my child; the teachers are not prepared," but all this has been a learning experience for them and for us as Fe y Alegría Bolivia. And our goal accompanied us in this learning experience.

What special education projects does Fe y Alegría Bolivia manage?

We have the aulas de apoyo (support classrooms), which have been supported by Denmark for seven years. We were able to consolidate a model of care for students with learning disabilities. The project has allowed us to, first, help a regular school teacher know what a learning disability was, and how to identify it so the student receives proper attention. But adding the extra educator for support to this system has been a challenge. Many times the regular school educators resisted this aspect of the program because they thought that this teacher was coming to inspect their work. That was not the goal; rather it was to accompany them on the job and work together to make a plan for the child. It is more of a support to the professor than to the child, for training.

Each year we receive more children who are not just from the special education centers. We started in the centers, but some resisted this step. Instead, neighborhood kids started coming, and parents who’d heard of the work we do. The issue of working with parents has also been a major challenge. They come with a lot of pain because they have been rejected in society since the birth of their child. Here in Fe y Alegría Bolivia, it’s about giving moral support and accompanying them in this process.

Our institutional responsibility has been raising this issue of inclusion as a process. It’s not something we can grab and say "Okay, 47 Fe y Alegría Bolivia schools will be inclusive now." We had some criteria for schools to enter the process of inclusion. First, there are schools that have already agreed to educate a disabled child, and so they’ve opened their doors. On the other hand, there are schools which understand the work that we do as Fe y Alegría Bolivia and are interested in joining this project. Of these, we have some model schools like Villa Alemana, which received an award from the Ministry of Education last night. This school started partnering with us in 2001.

We also have six centers for special education, including the Institute of Audiology Cochabamba, the Rehabilitation Center San Juan de Dios in Potosí, the Special Education Program Fe y Alegría Bolivia in Cochabamba, the School of Audiology in Sucre, and the Rehabilitation Centre for Different Abilities Hernán Araceli in El Alto.

The work we do in special education is very specific, and it’s different from the work we do in the other areas of Fe y Alegría Bolivia. First, children with disabilities require specialized care. Each disability has its needs, demands, and interests. This means that the projects are very specialized and emerge from schools’ responses to different situations.

What are some key challenges of this job?

The issue of funding has complicated things a bit. Before, we asked for help in terms of human resources from the schools, but this can only get us so far. There is also the problem of sustainability. The Ministry of Education values what we do, but they don’t support our special support educators or consider them within the scale for teachers. It's a problem because we cannot support all teachers. The project has been running for two years without funding. We work with schools to decide whether to keep the position or not, and most kept the support educator with the help of the community and parents.

In other places we have strategic alliances with universities, in which students do their internship as support educators, but the problem is that it’s a passing experience, [and] they are not there in continuity. Support educators who are continuously in schools can have a more active and dynamic role.

Tell me about the culture of the deaf.

Each center manages its approach to how you will teach the deaf. Now the bilingual approach is the norm, in which the first language is Bolivian sign language, and the second language is Castilian writing. In Bolivia, as in many countries now, the issue of oralization by the deaf is a debate. It has to do with the very identity of the deaf person, who has their own language of signs. Forcing a deaf person to speak can be disrespectful of their mother tongue.

How is this aspect of Fe y Alegría Bolivia’s work developing and growing?

We are trying to make a clear path in this area, because the centers have been operating in the hands of God for the lack of state policies. In the current law, which is the Education Law Avelino Siñani, there’s a new emphasis on special education and inclusion. In the 1994 reforms they already talked about school integration, but without as strong a presence as now.

You have kids in centers of all different ages, and adults too. So we ask, "What we are offering here? What is the purpose of our schools?" There are small children who need early intervention, and there are also the 50-year-olds that have not had the chance to envision their long-term future. So we started a vocational training and job placement program with the support of the Christian Blind Mission of Germany. This experience, especially in Santa Cruz, has allowed us to say what we are doing and why and what for.

Teachers have told us that it is a slow process: you get to a certain point with the child, and after the holidays, you have to restart at the beginning. The pedagogy has been very repetitive, sometimes without real educational criteria. Students remain in first grade, or second or third grade, although they keep growing. The Embassy of Japan supported two of our centers on a research project to see how they should organize special education classrooms, for example by age, grade level skills, developmental level, or level/type of disability. Now the idea is to organize classes according to age and level of development.

With this project, many teachers began to open their classrooms that aren’t like Pandora's boxes anymore, where you don’t know what’s inside. We now know much more about the successes and challenges, materials and skills that teachers have.

How do teachers train for work?

Overall, our schools and centers have teachers who are very committed to the work they do and the population they serve. The challenge has been to change the mentality of paternalism or maternalism, because students are their "children" and when one raises the issue of workforce inclusion, they think "Ooh, but how, something can happen; here we take care of them." But it’s a step we must take. If a young person is in a center for many years, and now has the opportunity to train for a job, it’s much better that they go do that and demonstrate their skills.

Contact with companies has also been a challenge because Fe y Alegría Bolivia works in education, so working with businesses has been a new experience, with a new language. How can we get into this environment with dignity, not for mercy, but because they have the right to work and earn a living? What has opened the door for us are internships, because few companies want to jump right into hiring a disabled person due to prejudices and the cost/benefit mentality. When we did the internships first, many of the companies loved it and thought that these young people were committed and did quality responsible work. In one company they told us, "I want more of your students because sometimes the others will go out partying or fight," and there’s too much turnover.

Sometimes they do not realize that the young person has a disability. There is a girl who works in a daycare and the director told us, "I didn’t believe it." Because one would think if someone with a disability is responsible for a child something bad could happen, but we just said, "Let’s try." And she’s still working there now. Yes, things happen, there are those who leave work after a week, or who become pregnant, but these things vary in the development process for each individual.

Overall, this experience in Santa Cruz has been so successful that it is a model for the rest of the country, but the problem is still human and financial resources. Now we would like to start with the issue of microcredit, but it is something new for us because we are not a financial organization, so we must continue to form alliances and learn. The key here is the work network. We have partnerships with health centers, psychological services, organizations of disabled people, and several companies.

We respect the rights of persons with disabilities. We are promoting a convention for their rights, and we are very supportive of organizations of persons with disabilities. There is a saying that goes, "Nothing about us, without us." They have to participate in all processes and decisions.

The challenge has been to generate social change. This implies a change in attitude. I, when I was in college, saw them as, "Oh, poor things, they can’t do this," which is the approach that we all have, that they’re lacking something. Obviously, you will not see the skills a person has if you take a medical approach to disability. But if you try to get to know a person with disabilities, you can get closer to the person. They have dreams, and they want to have families like us. Many times we have erased or denied the disabled person and that's what has to change. Thank God we have these bodies that can compensate for differences.

What sorts of policies exist in Bolivia related to this issue?

One problem we have as a country is that we do not have a diagnostic system to identify people with disabilities. Each institution makes its own assessment, and there are no unified criteria or definitions. The other related issue is that we have no reliable statistics. There was a census, but it just counted physical disabilities. This means that people are invisible in statistics and also in politics. I think we have made progress in recent years. We are a leader in this area, but there are still many challenges, and it can’t just be the work of Fe y Alegría Bolivia. We need more participation from the Ministry of Education and regulations for the centers.

Now in the ministry there are three vice-ministries: regular education, special and alternative education, and higher education. But we're in a bubble, and this has to be a cross-cutting issue, or we will always be on the sidelines. In our last strategic plan we said that special education is one area but is present in other areas too, like public action, regular education, and technology.

Since you have so many different projects, how do you gather information about what is learned or done in one center and share that with the rest?

We have tried to systematize it. When teachers are able to communicate what they do and spread it, they can share and learn. We try to do that with the support classrooms, school integration, and job placement. But it’s difficult to systematize the experiences of each teacher. It requires a lot of time and training for the teacher. Some have written their experiences, but it’s not yet systematized. We want to create a network through our web site for those who are working with these programs. Now we coordinate with departmental teams, but our human resources are very limited. We don’t have people in charge or special education in each department, only the ones where we have projects.

What kind of role does faith play in these special education programs?

We try to focus on disability and our schools with awareness activities, through education in values. The word of God speaks about diversity, believes in the potential of people, and also provides positive values such as inclusion, respect, friendship, and solidarity. It's not that straightforward, but values education in regular schools does play an important role in sensitizing people. Since the approach of the Church in the past was more of a welfare model, we have to be careful with this issue, that they’re not those “poor little things.” They can grow and develop.

In terms of your education and transformation in how you see this issue, did your faith or the Jesuit charism play a role?

Of course. I'm Catholic; I believe in the God who believes in all people. The work I am doing is a service job, and certainly what I'm doing now is a bit for this transformation. I know God is with me and gives me strength to put it like this, so that people understand me. Spiritual nourishment is what keeps me going and allows me to move on. Some people say, "When I go to a special education school, I get depressed." I go to a center and leave happy, because I share with the people, although there are difficult conditions. Emotionally it is hard, but there is the strength that God gives me.

I've talked to others about the effect an indigenous president has on the self-esteem of indigenous people. Are there any effects of this administration for people with disabilities?

Yes, of course. This year we had a big mobilization, and President Evo Morales himself has shown support for people with disabilities. He’s launching projects, but with a charitable approach. Now there is a fund of 40 million bolivianos for people with disabilities, and they can access funds through projects under different ministries. But the bureaucracy has not implemented any projects in these three years. Disabled people really came out for this. It got to a point of chaos and lack of dignity, and what they were asking for was a bonus so the government promised the Bono Solidaridad (Solidarity Bonus).

But the problem is, who receives the bonus? They prioritized those with profound or severe disabilities, but still there is the problem of the lack of statistics. There is a process to give people identity cards, but many have questioned this process. There could be problems with bribes, and it’s a percentage deficiency approach in contrast to the approach of functionality, which we prefer.

There was a survey, by Cuban professionals, but we do not believe that these statistics are reliable because it has been a quiet, non-transparent process. Hopefully next year we won’t have this problem again.

We have had meetings with senators to discuss how to best invest the 40 million. For example, many health centers do not have the audiometry technology so many people’s disabilities aren’t detected early. What happens when the kids, at age 8 years old, come to a special school with a recent diagnosis? They’ve lost seven years that could have been spent teaching them to use sign language, read lips, and speak. I think that's where state money should be spent, for detection and identification. It should be a free service of the Ministry of Health. It is a private service now, and most do not have access.

There is another problem with all the tests coming to Bolivia from other places, especially the United States. The reality is very different, and as the questions are contextualized, they don’t work well here. We even have a lot of cultural diversity within the country. It’s not the same to assess a child from La Paz and a child from Los Yungas. For me, I’d like to continue working on this issue because it is a great challenge.

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