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Aryanti Yacub fully understands the challenges faced by people with Down syndrome. Her third son, Michael, has the condition.

For Aryanti, however, the worst part about it is not the physical and intellectual disadvantages associated with the chromosomal disorder. People with Down syndrome can cope with their distinct facial characteristics and impaired motor and cognitive abilities. But more than biological challenges, the worst part is the fact that they often have to live in a society that greatly marginalizes them.

“People with Down syndrome are called retarded, imbeciles and idiots,” Aryanti said. “These insults are very harsh. The stigma is pervasive.”

Because of the stigma, some parents of children with Down syndrome have become reluctant to let them become part of everyday society.

Aryanti, however, refused to let her son exist on the fringes. She believed that the stigma existed because society was ignorant about the condition. She believed people with Down syndrome were better than the stereotypes they faced. It was for this reason that Aryanti, along with other parents of children with the condition, established the Indonesian Down Syndrome Association (ISDI) on April 21, 1999. The group, which Aryanti chairs, now has more than 200 members.

“We chose April 21 because it is Kartini Day,” she said, referring to the hero of women’s emancipation. “[Kartini] broke the gender barrier and paved the way to a better life for women in Indonesia. We would like to instill the same spirit in ISDI.”

The group has made it its mission to set goals for its members. “We want these people to live a normal life, doing things that normal people do,” Aryanti said. “Watch a movie, go to a disco, these are examples of things that people with Down syndrome [used to not be able to do here].”

The association is trying to change this by exposing those with Down syndrome to activities like sports and the arts.

“People with Down syndrome have weak muscles,” Aryanti said, adding that physical activity not only strengthens their muscles, but also improves their intelligence, as well as curbs feelings of frustration and stress.

With the help of the British International School, ISDI is able to hold annual sports events. It also regularly organizes swimming lessons, having arranged the free use of swimming facilities all over Jakarta.

The group identifies and fosters members who excel athletically.

Since 2001, members of the ISDI have won medals in Porcada and Porcanas, the regional and national games for the physically disabled.

In 2003, two ISDI members were selected by the Special Olympics Indonesia to represent the country during the Special Olympics World Summer Games XI in Dublin, Ireland.

Earlier this year, Aryanti’s son, Michael, became the only registered golfer in Asia with Down syndrome, an achievement that earned him recognition from the Indonesian Museum of Records.

In the arts, one of the ISDI’s main activities is playing angklung — a traditional musical instrument from West Java — with the help of Saung Angklung Udjo, a cultural center in Bandung.

Aryanti said that music helps in the cognitive development of people with Down syndrome. “Knowing the right time to [shake the angklung] helps them understand things,” she said.

“Music also helps them concentrate and develops the idea of teamwork. It was difficult in the beginning, but we made it after four years.”

ISDI’s angklung ensemble has performed in churches, government offices and malls. “They give the audience a new perspective,” she said. “It’s like a spiritual experience. If these kids can, everyone else can.”

ISDI also cooperates with the Sanggar Cissie art studio for drawing lessons. Some of the association’s members have won national and international drawing competitions, including the Merit Award at the Hans Christian Andersen Bicentennial in Iran in 2005, and a gold medal from an international drawing competition in Rome.

“I am so proud of these kids,” Aryanti said. “For me, this is like a miracle. This shows that they are capable of doing things that society thought they couldn’t do.”

Aside from activities for the members’ personal enrichment, ISDI also encourages them to give back to society. The group has been involved in a number of community-related outreach activities, such as distributing wheelchairs for the Wheelchair Foundation, visiting children’s hospitals to hand out gifts during religious holidays and giving out bread to the poor every Friday.

“People with Down syndrome also need to realize that they’re also human beings who need to do charity and share love with those who are in need,” Aryanti said. “It’s not just about taking, it’s also about giving.”

These activities are part of ISDI’s short-term goals. What the association wants for the long term is for its members to become self-sufficient.

In October 2009, ISDI established the Center of Hope in Sunter, North Jakarta, an intensive after-school training program.

“We need to teach them about things that they will have to face in real life,” Aryanti said. “What’s the point of giving them training if they keep on relying on other people’s help?”

Aryanti said the center’s activities included teaching members how to shop, cook and do the laundry. “This is like a new thing for them,” she said.

ISDI also wants to help build a sense of community among parents and families who have a loved one with Down syndrome. The group has held seminars for parents where experts have talked on various topics, ranging from the importance of early intervention in the condition to health issues such as dental care and nutrition.

The group is also doing its best to educate the public.

“Most people are unfamiliar with what actually causes Down syndrome,” Aryanti said. “They just don’t understand. But once [ISDI] educates them, they will be able to see things from a different perspective and appreciate the burden that these people with Down syndrome have to carry. They will [hopefully be able to] leave the old stigma behind.”

But Aryanti said that promoting such an agenda was difficult because the group did not have support from the government.

“As a social foundation, we’re supposed to be under the Ministry of Social Affairs and the Ministry of Education,” she said, “[But the government] hasn’t been helpful or supportive of our program.”

Aryanti said that the government should take a more active role in educating the public and seeing to the needs of those who have the condition because the Constitution states that people with disabilities are the government’s responsibility.

She added that society needed a better collective awareness.

“The public should first be able to understand that people with Down syndrome struggle to take even just a single step,” she said. “They’re struggling to overcome their problems.”

Calling them ugly and stupid does not help at all and such a mind-set should be eliminated, Aryanti said.

“We’re giving our members training so that they can prove to the world that they deserve respect,” she said. “It may take time, but the mind-set can change.”