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The Trip Starts July 3, 2005 and ends August 25, 2005 (see route & schedule)
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Volunteer Day in Jiayuguan
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.

 

Trip Diary
Pre-trip
Stage 1: Shanghai - Nanjing (7/3 - 7/6)
Stage 2: Nanjing - Hefei (7/8 - 7/9)
Stage 3: Hefei - Xi'an (7/11 - 7/19)
Stage 4: Xi'an - Lanzhou (7/22 - 7/27)
Stage 5: Lanzhou - Jiayuguan (7/29 - 8/5)
Stage 6: Jiayuguan - Turpan (8/7 - 8/16)
Stage 7: Turpan - Urumqi (8/18 - 8/19)
Stage 8: Urumqi - Korgaz (8/22 - 8/28)

Date Title Location
Aug 23 Sweet Pain -- We Made It Korgaz
Aug 22 Uphill to Wind Lake Salima Hu
Aug 21 Biking The Prisoneer Highway Along the Red Pepper Mountains JingHe
Aug 20 Chinese Mothers TunHe
Aug 19 The Final Volunteer Day Urumqi
Aug 18 Urumqi, What a City Urumqi
Aug 17 The Last Day for Wen Ray and Fang Wen Guang Urumqi
Aug 16 Rugged Desert and The Police
Aug 15 The Second Lowest Place in the World Turpan
Aug 14 Toilet Paper vs. Prostitutes QiKeTai
Aug 13 Sunset is Nice, Biking in the Dark Isn't YiWanQuan
Aug 12 Meeting Our Match Hami
Aug 11 Dry to the bone Hami
Aug 11 Gobi Down Hami
Aug 10 Small Town China Small town on edge of desert
Aug 9 Chinese Customer Service (Negotations) Dunhuang
Aug 8 Let's Talk About The Roads Dunhuang
Aug 7 Kao, Kao, Kao Lamb's Barn
Aug 6 Sick Returns Yumen
Aug 5 Volunteer Day in Jiayuguan Jiayuguan
Aug 4 Being a Chinese Wingman Jiayuguan
Aug 3 The Desert Has Arrived QingShui
Aug 2 Talking Politics in China Zhengye
Aug 1 Biking the Great Wall Zhengye
Jul 31 Where's the Beef... No Lamb? Small Village
Jul 30 A Toilet Seat Would Be Nice WuWei
Jul 29 Being a Celebrity TienJou
Jul 29 The Faces We Pass TienJou
Jul 28 Volunteer Day in Lanzhou Lanzhou
Jul 27 I got a visa ;) Lanzhou
Jul 26 The Six Questions Lanzhou
Jul 25 Why Bike Across China? HuiNing
Jul 24 The Mountain Climbs Begin LongDe
Jul 23 The West Has Arrived YongChuang
Jul 22 Sick or Not the Kilometers Must Go On YongShou
Jul 22 Three Stages Down -- Five to Go YongShou
Jul 21 A Full Volunteer Day in Xi'an Xi'an
Jul 20 Leaving Relics at the Terracotta Warriors Xi'an
Jul 19 And I thought I was ok... Xian
Jul 17 Longest day ever TongGuang
Jul 16 No Hot Water Until 6pm Luoyang
Jul 15 Volunteer Day in ZhengZhou ZhengZhou
Jul 14 XuChang to ZhengZhou ZhengZhou
Jul 13 Zhumadian to XuChang XuChang
Jul 12 News Clip from Nanjing Newspaper Zhumadian
Jul 12 10 Days Down Zhumadian
Jul 11 Chinese law is not always written Xin Yang
Jul 10 Biking at Night Huang An
Jul 9 Easy Day to Lu'an Lu'an
Jul 8 Sad I Don't Have the Answer Hefei
Jul 7 The Chinese Countryside Quan Jiao
Jul 6 Teaching English in Nanjing Nanjing
Jul 5 Rain is a beautiful thing Nanjing
Jul 4 Happy Independence Day in China Changzhou
Jul 3 Hot, hot, hot in Suzhou Suzhou
Jul 2 Autism in Shanghai Shanghai
Jun 23 Autism In China -- An Amazing Day Beijing
Jun 18 Training -- Beijing to Baoding Baoding

 

   
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