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於2017-12-19 16:11:47發表 (閱讀次數:571)
CTS News Magazine-Seeing the Rare Vitality (21~23)

【Public Advocacy】CTS news magazine-- seeing the rare vitality(21)~(23)

Have you ever seen a child with physical and mental disabilities in the park's playground? Probably not so much. It is not because they don't want to play, but because they simply can't use these facilities. In order to fight for their children’s right, a group of rare disease patients' family in Taiwan organized “Disabled Children’s Right and Advocacy Association in Taiwan”. In the long run, eight inclusive playgrounds were established.They anticipated that this trend will continue to spread. “Inclusive playground is really good! No pirate ships in Taiwan can carry wheelchairs”, said by a happy ten-year-old patient. Besides pirate ship, there is a seesaw which is suitable for students with special educational needs, a game board and a music board in line with wheelchairs. These playgrounds made their debut in Taiwan.

In addition to rare disease patients' family, a group of young people are also using what they have learned to help rare disease patients. They made more people pay attention to rare disease patients’ real life and needs. Teachers and students of Department of Mass Communication, Providence University collaboratively made a documentary “靜靜紀錄 罕你點滴” with rare disease patients' families. Students entered the rare disease world. Rare disease patients' families also participated in the script discussion and learned video shooting skills. Likewise, the teachers and students from Department Of Applied Music, Tainan National University of the Arts’ made an album “Love. Music” with rare disease patients' families. Students composed music while rare disease patients sang to record their own life chapter.

Music is the medium for many rare disease children to interact with the outside world. Jia Wen inadvertently found his son with Williams syndrome has music talent. Her son can't read the staff but can understand it and paly it as soon as he hears it.  Therefore, she and her husband began to expose their son to more music potential development courses. In addition, do you remember “Rock Me To The Moon”, which records the music dreams of six fathers with rare disease children? In that movie, guitarist Dad Li meets a boy who suffers Tuberous Sclerosis Complex by chance. The boy ran to him, saying, “Can I sing the theme song of the movie with you?” Then, he sang it loudly. Suddenly, he realized that the most important is not his music dreams, but how to inspire this group of rare disease children so that they and their parents can be embraced and healed by music. Therefore, The group “Menbug” was born…

Look online:Seeing the Rare Vitality(21): Experiencing inclusive playground.
Seeing the Rare Vitality(22): Practicing charity starts from me.
Seeing the Rare Vitality(23): Building a rare disease musical dream

Translator: William Luo (MPS), Reviewer: Nicky