Monday, May 25, 2009

Just Like Tom Thumb's Blues

It was one of your basic "why do I ever whine?" moments.
I was outside Beijing Children's Hospital on a Friday goodwill mission with one of my Weird China team reporters, Jenny Song Shengxia. The sun was beginning to set and the grounds of China's largest and finest children's hospital were crowded with needy parents and sick children, some camping out on a patch of barely functioning grass in front of the hospital. Two small shops selling gaudy oversized Mylar balloons and other colorful geegaws supposed to raise the spirts of sick children were doing some business.

We were there to give a 1,000 yuan ($145) donation collected from some Global Times coworkers to a remarkable father in need.

Zhang Yonghong is a 36-year-old dwarf with paralyzed legs. But he's really not the needy one. It's his 1-year-old "glass bone" daughter, Tianyu, who suffers from a disease I'd never heard of before helming the Weird China page - Osteogenesis Imperfecta (OI). OI is an incurable – but treatable – genetic disorder also sometimes known as Lobstein syndrome, in which sufferers have weak bones prone to breaking easily.

The dad, daughter and mother, a quietly beautiful shoeshine worker, traveled more than 1,000 kilometers from Xi'an to Beijing in their crude but effective homebuilt three wheeled mobile home that Zhang designed and set up with hand controls so he could steer and brake.

Jenny had written a story on him for the paper and his last ditch effort to find help for his daughter in Beijing, whom her mother was nursing as the father talked with us from the vehicle's small rear cab/bedroom. I sat in his wheelchair outside to get at eye level with the family as Jenny translated. Under the vehicle was the Zhang family's laundry in a plastic tub, a half full package of budget detergeant and a couple of cheap suitcases. Two tiny goldfish swam in a sealed small plastic globe -- something he'd probably bought for little Tianyu.

A crowd gathered as we talked - about 15 people, some just curious, others hoping to attract our attention for help. Zhang, who worked in Xi'an as a decorative paper cutter and - ironically - an amateur suicide and helpline counselor for people with fewer problems than he seemed to have -- said he hoped to stay in Beijing and find new work.

The Chinese mainland doesn't do well when it comes to its handicapped citizens. They're essentially invisible; a source of shame or naive curiousity, unlike Hong Kong where it's not uncommon to see blind people walking the streets and subways, families with a Down syndrome child and wheelchair navigators. The Beijing government pays lip service to the handicapped at appropriate times - such as when the Paralympic Games followed last year's Olympics.

And while celebrity gimps such as the son of late leader Deng Xiaopeng, Deng Pufang who was paralyzed from the waist down after being thrown out (or jumping) from a Peking University dorm room during the Cultural Revolution are wheeled out as shining examples, guys like Zhang are essentially nonpersons unless they make their own way.

I admired the way he'd rigged his little motorhome to drive and asked how he'd done it. He said he'd just "thought of it" and had built three others for some other partially paralyzed people who'd paid for the equipment and his labor. I asked about his driving license. He dodged the question. Handicapped people aren't licensed to drive in China, and he clearly didn't want to discuss how he'd driven so far without legal problems.

Meanwhile Jenny was also patiently listening to two different tales of woe from other parents with sick children. I told her maybe we could find some way to connect Zhang with someone in Beijing interested in making vehicles for guys like him, even if its illegal for them to drive. She translated again and his face lit up. I don't know if that's going even be a starter - but it was an idea he liked and could hang on to for awhile.

No comments: