【Humans of Taipei】一首搖滾上月球

“Yes, I am Mr. Pan in the documentary film, ‘Rock Me to the Moon ’. The weather is good, and we ate lunch with friends, so it makes a perfect day to take my girl out for a walk. Although she looks like this, but whenever we tell her we are going out, she opens her eyes and refuses to nap.

“We need to give her sputum suction regularly. My wife and I had to take turns looking after her, 24/7. Ever since she’s a baby, she has been sleeping in my arms. This is the only way I can wake up in time to check her once I feel her choked or breath unevenly…

“In medical literature, the average life of patients with lissencephaly is less than 3 years. But my girl is 19 years old now. I am optimistic and grateful. Most of the parents worry about kid’s school work, their peers and their jobs. Unlike them, I only need to worry about her health. But to be honest, I can only hope she will pass away before I do. After all, if I go earlier than her, who’s going to take care of her?

“The government has hired care attendants and we can apply for help, but they are not allowed to do sputum suction for patients. That is to say, they cannot fully replace the families of disabled people and we are not able to take enough rest. When we did the documentary film, I kept telling the director that we cannot just focus on love and the greatness of the families. Because all humans have love, but not all systems provide the fuel to sustain our love. There are many people who chose to end the lives of their sick parents or children and then commit suicide just because they can’t hang on anymore.”

“That is why except taking care of the girl, I also work as the president in Taiwan Association for Disability Rights. What are our initiatives? One of the simplest is, HOW do blind people vote? We set up a helpline yesterday for voters with disabilities and we had more than 20 calls…

“Now, talking about the election, as a veteran, I am traditionally considered a loyal voter for KMT. But it’s not true. Our association made a statement and we sent it to the candidates for Taipei mayor. We asked for a meeting, a chance that they can listen to us and understand the need of the disabled.

“Ko Wen-je replied. He held a ‘world cafe’ talk on the topic and he came to hear our summary in person. But the other candidate, Sean Lien had ignored us until their team knew Ko had held the talk. They responded they were available but when we came to the headquarter, the candidate and their team lead were absent. They sent someone insignificant to meet us. The attitudes of both sides were so much different.”