'Like David fighting against Goliath'

SANTIAGO, Chile—In the Chilean culture, children with disabilities are seen as shameful, an embarrassment, a curse from God. But the South American country leads the region in Down syndrome births—1 in 400, making it increasingly more likely to have at least one child in an extended family with the genetic condition.

Some experts blame Chile’s delayed maternity, since the likelihood of having a child with Down syndrome increases with age. But the country’s pro-life culture also has an effect: Chile is one of the few remaining countries with an absolute ban on abortion.

Rehabilitation centers for people with Down syndrome typically consign participants to lifelong therapy, without hope for living a normal life. But one center based on an evangelical Christian foundation is offering a new, purpose-filled alternative. And Chile’s leaders are taking notice.

The CpueD Foundation offers holistic development for 70 children and adults with Down syndrome. Director Carola Troncoso Saavedra told me she helped found CpueD in 2010 with the help of her husband and church leaders “because God believes they deserve high quality service.” The name is a spin on two Spanish words—se puede—meaning he or she can.

“For those who couldn’t do anything, we said yes, you can,” Saavedra said.

The CpueD program teaches life skills and connects students to work opportunities, helping participants create an identity beyond their condition. Traditional centers limit participants’ development, Saavedra said. Contrary to the stereotype of “the eternal child,” people with Down syndrome can work and be productive, she said. They might not be pilots and surgeons, but they can do other things.

The Chilean government’s National Disability Service recently asked CpueD to spread its education model—which combines social, practical, emotional, and spiritual development—to other schools. Officials also asked CpueD to make a labor inclusion manual covering employees with Down syndrome.

Saavedra said age does not equal maturity in people with Down syndrome, so they first have to teach them to act like adults. “Adults also get angry but we don’t throw ourselves on the floor. Well, sometimes,” she said, laughing. After behavioral training, CpueD works with companies to give students access to and experience in the working world. The center matches students’ interests and skills to jobs, like working at a chocolatier or in a department store.

CpueD also offers shared housing for older students who want to practice living independently. After they complete the program, students can choose to live with family, friends, or a partner.

Chile has several centers for children and adults with Down syndrome, but Saavedra said only CpueD operates from an evangelical Christian foundation and incorporates spiritual development. The staff teach a faith and values class and incorporate times of worship and prayer. Saavedra said some people incorrectly think those with Down syndrome are free of sin or can’t understand concepts of faith. But the students understand and enjoy the inclusion of the gospel.

“It’s encouraging to say, ‘Oh, me too?’” she said.

The school is located in an expansive villa-style residence once home to a South African ambassador. On the day I visited, the smell of food drifted from the kitchen into the entryway, where a spiral staircase leads to the second floor. Some kids kicked a soccer ball around on an open patio in the back while others hung out on a basketball court.

In the hallway, Saavedra stopped to greet one of the students. “Hola Caro, what are you listening to?” she said in Spanish, trying on the girl’s headphones. She smiled and bobbed to the music. “They can only wear headphones on Fridays,” she told me later. “Otherwise they would all walk around like this.”

In the dining room, Saavedra joked with students eating lunch and asked four in their 20s and 30s if they wanted to live on their own. After considering her question, each said yes. They also wanted to date and keep working.

“They too have dreams, they have desires,” she told me. During our conversation, she continually returned to the theme of independence.

Chileans with Down syndrome have a long life expectancy—about 55 years. But children with Down syndrome can drain their parents’ time and energy because they often are slow to develop and become self-sufficient. Parenting becomes an enigma because past experience doesn’t apply. So, CpueD teaches parents to allow their children to develop their independence so they become a blessing instead of a burden.

That outreach to families is a big part of the center’s evangelical mission in the predominantly Catholic country. Chaplain Alex Niedbalski and his wife Fran recently returned to Chile to build a Christian community for CpueD families. They lead a Bible study and prayer group and plan to start home groups where families can discuss the Bible and grow in their faith.

Niedbalski said the best way to show the gospel at work in Chile is to open your home and allow space for questions. CpueD offers a bridge, he said, since Catholics are more open to learning more about the Bible than changing churches. Most Catholic depictions of Jesus are either “in Mary’s arms or dead on a cross,” Niedbalski said. The unique cultural challenge for evangelical Christianity in Chile is Latin American Catholicism, which is characterized by nominal faith and biblical teachings mixed with ancient native beliefs.

CpueD’s Christian base defines the center’s motivation for serving students, Niedbalski said. Instead of pity, charity, or obligation towards “weaker brothers” that characterize some Catholic institutions, CpueD sees the value in Down syndrome students as created in the image of God, “part of the eccentricity of creation.”

And the Good News has special meaning for CpueD students, Saavedra said.

“What better news for someone with a disability than to tell him, ‘You know what? You’re perfect, God loves you, you were made as He wanted. And you’re like David fighting against Goliath, you’re going to win,’” she said.