What issue are you trying to solve?
Persons with DS are very difficult to be included in social life because its disabilities not known to the public in general and stigmatized as human beings who cannot be educated and or empowered. The special school curriculum for children with an intellectual disability is very limited thus the physical and cognitive developments of children with DS are not optimal. Furthermore, there are still many who live behind doors, at their “home”, hidden and often discriminated against, ostracized even within their families. They are left behind in all spheres of life. Many are abandoned and not included in social life so that their knowledge of life and the source of life are also very limited. Many of them became muted or non-verbal because they are not heard. The goal for this initial project is to awaken them that they have the right to think, to speak in their language, to be brave to raise their opinion, to be understood thus they could bring out and show what they are capable of. Our aim is for the government and public at large to listen to their needs, to protect and deliver their rights to enable them to live a fulfilling life with dignity.
What is your approach to change this undesired situation?
The youngsters were taught to speak properly and in order to be understood and deliver a clear message. We developed a comic book with very little text and let the sessions flow as what came up from them so guidance is likely to adjust with their rhythm. The process runs much slower than those typical. Diversion happened e.g. when we found out that some of them are able to play instruments, dance or good in sport, we challenged them on “A Talents Day”, and this successfully brought their confidence up. We found out math was not their thing, we made “Market Day” so they could take turns to become the seller or the buyer in a market. Again it turned out to be effective to teach them what communication skill is for and forced them at the same time to calculate better. We had speakers who addressed the youngsters’ identity; their civic rights include the right to work, sexual and reproduction health rights, and even about their rights in political life. We managed to develop a training module called Let’s Speak Up. Surely this module is the only one of its kind, developed based on a realistic situation of children with Down syndrome in Indonesia.
What is the potential impact of your initiative?
Scale-up the initiative throughout schools, special schools or other communities of children with intellectual disabilities in Indonesia by using the module so there will be more and more children with intellectual disability will be exposed to speak up.
Youngsters who progress better were exposed to meet other disability communities to share their experiences or were involved in meetings or activities held by organizations of persons with disabilities or by the government thus become self-advocate and would be able to be involved in the Disability Movement in Indonesia or the world.
The best impact so far, most of our youngsters are able to speak up in front of the class, show with confident what they are capable of. And it turned out that this could bring in some income. Some of our youngsters who could dance or play music had been invited to show their talents and got paid. The co-founder of the peer group himself successfully became the first Asian with Down syndrome who spoke up about Employment for a person with DS in UNOG at the side event of CRPD 21st session made him as the first international self-advocate from Indonesia. Others just won a “Speak Up your barrier” contest.