South China Morning Post
6th September 2018
Disabled in China: why life is still a struggle in a society designed for the able-bodied
By Rachel Cheung
China has made great strides in its efforts to integrate those with disabilities, but the experiences of a Shenzhen couple show how much still needs to be done before they are accepted as active contributors to society.
Li Hong woke up in a sweat one night this summer, breathing heavily and with his inflatable mattress – essential for preventing bedsores – slowly deflating beneath him. His breathing apparatus, which keeps air pumping through his lungs when he sleeps, had stopped working. Li pressed the emergency alarm, but it too failed. The power had been cut.
Li’s wife, Hu Ying, frantically called property management, but no one answered. She went outside in her wheelchair, hoping to find an electrician, only to discover that the lift was not functioning. The blackout was affecting their entire Shenzhen neighbourhood.
Unable to do much else, the couple closed their eyes and prayed, Li concentrating on inhaling and exhaling, and after two hours, mercifully, the electricity came back on. The breathing apparatus flickered back to life and the mattress rose, supporting his weight. It had been a close call.
Li had not been diagnosed until he was 17, in 1989. Before then, doctors at the hospital in his hometown of Xuzhou, in Jiangsu province, could not explain why he struggled with running and sports. One insisted that he was simply lazy and did not do enough exercise. It was only when Li’s father took him to a larger hospital, in Hangzhou, the capital of Zhejiang province, that they found a name for his condition. He was suffering from Becker muscular dystrophy, a rare disorder characterised by progressive muscle weakness of the legs and pelvis.