Jiayuguan -- Fri, Aug 5, 2005
This volunteer day was different than the other volunteer days. As far as we know, there is not a school or organization dedicated solely to people with mental disabilities in Jiayuguan. We had to contact the local governmental organization that deals with all people with disabilities and see if they were interested in helping us meet with some parents with autism or other disabilities. Our hopes we're not high (government beauracry in China doesn't usually work on a Bike Across China time schedule).
We got to town and went directly over to the governmental organization. We we're greated by a man who was anything but happy to see us. He promptly told us that autism was not a mental disability and went to the bathroom. I had warned Fang Wen Guang about this, but I wasn't really clear I guess. The Chinese government puts autism in the "social disorder" basket and it is not a "disability" -- so we have to be clear with the government that this is a "mental disability" thing... somthing we learned from the Special Olympics in China.
So we cleared that one up and he begrugingly agreed to go check with the boss -- but not before barking out "Where is HE from?" He neither seemed pleased or displeased that I was from America, thankfully Wen Guang didn't say Japan.
Then things turned 180, a nice woman greated us and jumped right into plans for the day tomorrow. Wen Guang was a bit taken aback and I was quite clueless to all that was happening. But then she said, the big boss had to approve all of this, it wasn't her call... Ah, I didn't think it could be that easy.
After a few minutes, the big boss came down. He seemed pleasant to me, but I later learned from Fang Wen Guang and Ray Wen that he was a bit abbrasive. He shot at us "Who are you?", "Why should I care?", "Who is going to pay for this?", "Let me see your ID?". Actually pretty fair questions in my book, especially given his lack of real incentive to help us out. It all ended with an agreement to call us the next day -- with an answer...
Well the answer was yes -- not due to the boss though -- but b/c the amazing woman went above and beyond to put together a group of four families to talk to us about their experiences in Jiayuguan with a child with a CNS disability.
One parent had a child with autism. We had met his child in Lanzhou and were on the front page of the local paper with her. He proudly brought the two newspapers we were in that he had.
The second parent had a child with symptoms very similar to Blake but we never got enough detail to really tell what the child was diagnosed with.
The third parent had a child that had mental disabilities as well as developmental disabilities (causing him to shake if he tried to walk).
The last parent had a child that was absolutely fine until he was seven and then developed a disorder that in some way prevented him from walking, especially in the winter.
We spent over two hours discussing their experiences, describing my little brother to them, comparing the US and China. No reporters, no photos; just talking -- at times the language barrier was very difficult, but the day was very fulfilling. My admiration for these parents in unbounded. They struggle to just get basic information about their children's conditions -- let alone the lastest treatments. There is relatively no support from them in Jiayuguan (the disability organization being their strongest ally) and the understanding in the community is not much better. I could tell they were tired (weren't we all) -- but they emmanated such a good feeling. They had it tough but kept trying to get to the next step to help their children. Truly devoted, caring, loving.
It was a good day.